One Sick Mother

Oslo Health Solutions: Preying On The Sick Part III

I'm kind of sick talking about these people by now, to be honest with you. I have devoted hours and hours of rather nauseating research to Oslo Health Solutions and their claims. There are many, many more hours of work that could be done; -just on the Internet alone, before one starts on private and other channels, but I don't have the resources for it, financially,  physically or spiritually.

But there are two areas I do want to explore:  How people like this might think, because it seems to me,  their thought processes are very different than us trusting honest normal people. Maybe getting into their brains a little will help us to beware of others of their ilk.

And I also want to let you know how you can fight back; against people like this in general and against Oslo Health Solutions (OHS) in particular.  Because let's face it: Oslo Health Solutions run a pretty despicable operation and they need to be stopped.  Now.

So how do they think they can get away with it?  I have thought about this and I think I figured out a few um ....principles for Internet fraud.

1. Lie Big:
   It is a concept con-men have down cold, but one that most decent people can't get their heads around:  If you are going to lie to people: Lie big. Don't bend or massage the truth.  People are expecting that. Most normal people lie small, They exaggerate or use words like "almost" or "virtual".  But the truth is usually somewhere underneath. People expect this and watch out for exaggerations and small lies. People generally don't expect a lie to be totally bald-faced and to have no relation to the truth. Therefore we see the grandiose claims OHS make and we expect there is some truth to them. This is why OHS were so smart in their pitch. They understood this and therefore they sold so high, but delivered so low, they seem to have flown right underneath most radars.  
    
2. Divide and Conquer: 
   People with specific illnesses don't generally go looking for herbal treatments for other illnesses, so if one product was exposed as a fraud, then it is just that one out of ...what?  ...about 60 now that I have found?... I figure OHS simply dump the product that was exposed, find a new disease, re-brand the website and labels as "new disease-Tab" and then carry on selling the exact same product to a different market.
   
   I guess OHS didn't expect anyone to search on more than one or two of the diseases they cover. The must have figured that chances that someone would work out that they are selling  the same list of ingredients as  a completely guaranteed and clinically proven herbal treatment for up to nineteen (19) different conditions, from teething troubles to Multiple System Atrophy (MSA), which is generally fatal within two years of diagnosis (Elizabeth at Screw Bronze! has MSA. Read her blog if you want some graphic descriptions of what it does to one .... and   -Quick! give her some shallots and Red Earth!  That'll be bound to cure her...)
   
   
3. Avoid well-organized groups:
   There is No MS-Tab, no Breast Cancer-Tab, no Autism or Aspie-Tab, no Alzheimer's-Tab and I think there is a very good reason for this. It is probably the same reason Cardio-tab no longer exists:  These conditions are highly public and have well-populated organizations and lots of support groups surrounding them, the jig would be up pretty quickly with most of these conditions. -I was actually surprised to find MD-tab, Leukotab and Parkotab, as they are also quite well organized too.  
    
4. Use the Global Market to confuse your  umm... "customers":
   If you set up shop based out of a small, little understood country in Scandinavia, then ship your product from Pakistan, most normal sick people won't be able to figure out how to take action against you from halfway around the world... 
   
   But keep reading.  I have found a fair bit of information on this.

I have two imaginary scenarios for who could be behind Oslo Health Solutions:  In the first one, it is a couple of teenagers, now young men, who started it as little more than a lark out of someone's bedroom, not fully comprehending the real lives that could be effected behind the illness they researched on-line to create new markets for a Pakistani Hemorrhoid preparation.

It the other scenario, it was started very deliberately by adults who have no regard for others, knew exactly what they were doing and are in this game to make money, not caring at all who gets hurt in the process.

Regardless, it is wrong.

Several people asked me, both in comments and through other channels, if we could inform the FDA about this. I don't think the FDA has any interest, as natural remedies and herbal supplements are not very regulated here in the US. However, they might be interested to investigate if they thought Americans were being sold Strychnine as a supposed cure for Parkinson's disease.   I will look into this.

However, FDA aside (for now), the Norwegian government DOES regulate (and tax!) natural remedies. It falls under the jurisdiction of the Norwegian Medicines Agency, and they have an English version of their website, and of their contacts page (how cool is that?), complete with e-mail addresses, so you can send the links directly. I love Scandinavian efficiency!

Now, I suspect that Oslo Health Solutions are trying to get around some of the European laws and regulations governing sales of herbal remedies as well as false advertising laws by manufacturing and shipping their product from Pakistan. 

However, Pakistan now has the Electronic Transaction Ordinance (2002) which protect consumers in electronic commercial transactions, such as buying poison from Pakistan. More interestingly, there is the 2007 Electronic Crime Ordinance which has this interesting clause, potentially punishable by death:

17. Cyber terrorism. -

a. Any person, group or organization who, with terroristic intent utilizes, accesses or causes to be accessed a computer or computer network or electronic system or electronic device or by any available means, and thereby knowingly engages in or attempts to engage in a terroristic act commits the offence of cyber terrorism.

Explanation1: For the purposes of this section the expression “terroristic intent” means to act with the purpose to alarm, frighten, disrupt, harm, damage, or carry out an act of violence against any segment of the population, the Government or entity associated therewith...."

Do you think that selling Strychnine to Parkinson's patients over the Internet could be interpreted as "Intent to harm, damage or carry an act of violence against a segment of the population..." (what we in America would call a hate crime)?  I think it could be.  

Interesting stuff, eh? 

Now: Of the sites I investigated (and I have to admit that a few, such as Inisitab, and Abdotab were late additions to the party) the vast majority claimed to be run our of Norway, from this address:

Oslo Health Solutions

Oslo Health Solutions
Suite 329
Youngstorget
NO-0028 Olso
Norway

There are a few exceptions, Some had no address whatsoever, but when you click on the "order now" , button, it comes up as Oslo Health Solutions. These included Raynotab, Guillatab, Clearotab,

...and a few products seemed to be run out of the UK, from corporations (...or are they? "Inc" is not a UK corporation suffix  "Ltd" or "plc" are the norm over there.  ...Hmmmm.)  supposedly operating over there.  Note the addresses are all exactly the same.

Vertigo Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Anemia Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Psoriasis Tab Inc
Suite 10 & 11
Siddeley House
50 Canbury Park Road
Kingston Upon Thames
Surrey - KT2 6LX
UK

Vitiligo Tab was the one which had buried its tracks particularly well. No address, no telltale "Oslo Health Solutions" banner on the order form. The Web site was registered to a "Charls Dickens" (sic)  of

Berkeley Square House,
W1J 6BD
London,  W1J 6BD
United Kingdom

In the UK, companies making false claims over the Internet are regulated by  The Trading Standards Institute.  Vitigilo tab is claiming that "Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo" (my emphasis). Psoriasis Tab and Vertigo Tab also claim a "100% cure", whereas Anemia Tab claims a "completely guaranteed and clinically proven herbal treatment for Anemia".  Are these false claims?  I dunno, but I think they should be investigated by the appropriate parties.

So what you do is this: You go to their site and enter the postcode

for the guys against whom you wish to complain, which is KT2 6LX  or W1J 6BD (for Charls Dickens) and you follow the instructions from there.

Little people can fight back, you know. We just need to get the right muscle on our side.

Oslo Health Solutions: Preying On The Sick Part II

This is Part II of my little exploration of a unscrupulous company who takes advantage of sick people by selling them herbal remedies under false pretenses. In part I, I told you about the products sold by Oslo Health Solutions, which is by far the worst offender out there that I have found. In Part II, I am sticking with Oslo Health Solutions, and concentrating on the ingredients they claim are beneficial for a very wide variety of serious ailments. I am uncovering new and interesting information every day, none of it good.

 I promised you an analysis of the formulations that Oslo Health Solutions (OHS) purport to use for the various ailments that they purport to treat.  I performed this exercise a couple of years ago on the Syrotab formulation, what I am now calling "Formulation 1" herein, as it is touted not only for the "guaranteed treatment of Syringomelia" (a condition which cause hideous pain, disablement and eventual death), but as a "guaranteed treatment" for several conditions, including Post-Polio syndrome (potentially crippling), Osteomyelitis (potentially fatal) , Peripheral Neuropathy (often treatable if the underlying cause is located) and Muscular Dystrophy (both crippling AND fatal).  My little analysis at the time was done for fun, and it was amusing-if-a-little-scary then. Looking back and knowing what  I now know, Formulation 1

The main ingredients are listed as

Magnesium Murakab
Zinc Murakab
Berberis aristate
Ext Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

LETS BREAK THIS DOWN, SHALL WE?

Magnesium Murakab, Zinc Murakab
I could not find any information on these specific formulations of magnesium and zinc. So I looked up the work “Murakab”:

It is an Islamic concept meaning “complex ignorance” See the following explanation:

The classical ulama of Islam divided ignorance into two parts; namely; simple (basiit) ignorance and complex (murakab) ignorance. In simple ignorance one knows that one does not know whereas in complex ignorance one does not know that one does not know. Often people who do not have book knowledge, i.e., those who did not have the chance to study at universities are characterized by simple ignorance. This type of ignorance is not as deadly as complex ignorance since one does not have the arrogance and the pride that often accompanies the thought of considering oneself ’educated’.

Hmmm. Something smelled bad. So I kept looking down the ingredients list:

Berberis aristate Ext: OK this is actually something, though misspelled.  It is extract from the plant Berberis Aristata, English name Tree Tumeric, the root of which has antibiotic and anti-inflammatory properties. (To my eyes, They will need all the anti-inflammatory properties they can get to counterbalance that "Murakab" jab.)

Egg Shell Calcium (quoi? I know eggshells won't do any harm if ground up finely, but I don't think the type of calcium found in eggshells is can be absorbed by humans)

Sulphur:  (in what form? and some people are allergic to sulphur -where's the warning?)

Substituted olive Oil: Substituted for what? Or more interestingly; what was substituted for olive oil?

My summary at the time:

Should I ever get the urge to sprinkle my breakfast eggs with tree tumeric, sulphur and complex ignorance, then eat them shells and all, I will let you guys know how I get on. In the meantime,. I think that anyone with Syringomyelia or other conditions should save their money to apply to real medical expenses.

("Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be "possible for us to make such a bold claim")

Formulation 2:

The main ingredients, according to Oslo Health Solutions are:

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

These ingredients, presumably in different combinations (if one is to be kind) are "guaranteed" by OHS to treat the following

Muscular Fasciculation

Kugelberg Welander Syndrome 

Pseudotumor Cerebri

Ascites

Myelodysplastic Syndromes

Teething Troubles (Yes. They say you should give it to babies!)

Spasmodic Torticollis

Enlarged Tonsils

Arachnoid Cysts

Multiple System Atrophy

Ameloblastoma

Wiskott Aldrich Syndrome

Horner's Syndrome

Chordoma

Benign Essential Tremor

Myelodysplastic Syndromes

Benign Essential Blepharospasm

Cronkhite-Canada Syndrome

Megaloblastic Anemia

Really.

So I did a little research on each of these ingredients:

Berberis aristata D.C Ext.: Here again is our friend the Tree turmeric, spelled correctly this time.

Melia Azadirachta Linn Seed: Azadirachata Indica is an evergreen tree native to India and the region. It is used for medicinal purposes: The bark is used for fever, nausea and skin diseases. The leaves are used for skin diseases -but applied topically.

I couldn't figure out what the seed oil (I presume this is what Linn Seed means) is used for specifically.

Raphanus satirus Linn: I think this might actually refer to Raphanus Sativus Linn, which is the Chinese radish. Its seeds are used for natural medicine in diuretics and laxatives and also to help naso-pharyngeal affections and stomach troubles

Melia azadirachta Bark: Bark from the Azadirachata Indica tree as mentioned previously. The bark is used for fever, nausea and skin diseases.

Red Earth: Um. I think as the description suggests, this is earth (dirt) that is red, from India. It is seems to be used in face packs and the like. I don't know why anyone would eat it, but maybe there is a good reason.

Sulphur (purified): Used in Indian homeopathic medicine. I am not sure what for, exactly

Allium ascalonicum seed: Allium ascalonicum is the common shallot. Shallots appear to contain more flavonoids and phenols than other members of the onion family.

While researching these ingredients, I found them listed in the same order, with the same misspellings, on a site that appears to have nothing (publically) to do with Oslo Health Solutions.

Check out the information for Pileen, a natural remedy for hemmorhoids, which is marketed and sold by Ark Corporation (Rawalpindi, Pakistan)

Some text from their site:

PILEEN is an effective herbal remedy for treatment of piles or haemorrhoids. It stops bleeding of haemorrhoids and relieves pain and inflamation. Pileen also removes the constipation, which is one of the main cuases of piles. Pileen is equally effective for both (internal and extrenal) forms of piles.

WHAT IS PILES?
Piles, also known as haemorrhoids, are swollen blood vessels in the back passage. There are two types of piles - internal or external: Internal piles are the most common form of the condition and appear as bright red shiny swellings inside the anal canal, covered in the thin, moist lining of the rectum. External piles are swollen veins close to the anal opening, covered in a layer of skin with a dark red or dusky purple appearance and can resemble bunches of grapes.The main cuases of piles are constipation (for a long period) and use of too much chillies and spices.

To prevent piles :

• Ensure that there is adequate roughage (bran, whole grains, green vegetable, and fruits) in your diet.
• Avoid alcohol, tea, coffee and very spicy food
• Drink at least 8 glasses of water daily preferably non-refrigerated.
• If your life style is sedentary include some exercises in your daily routine.
• Get yourself treated for any condition that is causing you to strain such as chronic cough
• Attend to nature's call daily and do not postpone the urge to defecate, but do not sit for too long in the toilet.
• Maintain god hygiene and keep the anal area dry learn to relax mentally and regularize your life style
• Isabghol husk can be taken as a bulk forming laxative.

DOSAGE:
Two tablets thrice a day with water.

INGREDIENTS:
Berberis Aristata ,Melia Azedarch, Linn Seed, Raphanus Satirus, Red Earth, Purified Sulphur, Allium Ascaionicum Seed.

Just a side-by-side look at the ingredients again: Pileen above, multiple OHS products below

Berberis aristata D.C Ext.
Melia azadirachta Linn Seed
Raphanus satirus Linn
Melia azadirachta Bark
Red earth
Sulphur (purified)
Allium ascalonicum seed

Fascinating, huh?

The funniest fact is this:  OSH do sell a product called Hemorotab, but the ingredients are completely different than the hemmorhoid treatment they apparently re-label and sell to treat MSA and other serious health conditions! Mad, eh? Here is the list for Hemorotab (Hemorotab! I ask you?! Sweet mother of God! I couldn't MAKE this stuff up!)

(The main ingredients of Hemorotab tablets are: Nuqra flakes , Ruby triturated, Turquoise, Agate green, Bombyx mori, Elettaria cardamomum, Conucilien, Corallium rubrum, Coral, Sea coconut, Ambra grasea, Aquilaria ovata, Delphinium denudatum, Doronicum hookeri, Lapis lazuli, Myristica indica, Pearls triturated, Vateria indica, zehar mohra, Crocus sativus

Hmmmm ...rather heavy on the precious and semi-precious stones, this one. Who knew hemmorhoids were so status-conscious?)

...but I digress...

On to Formulation 3...

This one is supposedly for the treatment of Idiopathic thrombocytopenic purpura (ITP), which is a bleeding condition in which the blood doesn’t clot as it should due to a low platelet count. OHS's "treatment" for this includes the following.

Ammonium Chloride
Potassium Nitrate
Cinnamomum
Tamala
Rheum Emodi, Wall
Base Q . S

My analysis:

Ammonium Chloride: Salt of Ammonia. Its expectorant action is caused by irritative action on the bronchial mucosa. This causes the production of excess respiratory tract fluid which presumably is easier to cough up. I'm not sure what benefit this woudl have to bleeding or platelets, exactly.

Ammonium salts are an irritant to the gastric mucosa and may induce nausea and vomiting.  (Again, not getting the platelet connection here)

Potassium Nitrate: Salt Peter. A popular misconception was that potassium nitrate caused impotence and it used to be added to food in all-male institutions. This myth has been debunked. However, potassium nitrate and other nitrates do successfully combat high blood pressure and are used medically to relieve angina.  (Fair enough -not that I think ITP causes either of these problems.)  Oh and BTW:   Platelets, anyone?

Cinnamomum Tamala: Indian Bay leaf. It is mostly used as a seasoning, but is reputed to help colic, diarrhoea, and "rheumatism". It is also said to reduce blood sugar.

Rheum Emodi, Wall: Reported to be useful in biliousness, chronic bronchitis, asthma, sore eyes and bruises.(OK! Maybe this one is for the platelets!)

Base Q . S: I could only find references to this as a listed ingredient in some shampoo that is supposed to prevent hair loss...

Formulation 4.

For Peptic Ulcer Disease,  -the thing that struck me -just looking down this list, was that there is a lot of strong, fragrant substances being sold to soothe a peptic ulcer? Logically, that doesn't compute...

Camphor: Camphor is used in several cough preparations such as Vicks and Buckley's as a cough suppressant and topical analgesic

Menthol: Menthol has analgesic properties that are mediated through a selective activation of κ-opioid receptors. Menthol also enhances the efficacy of ibuprofen in topical applications via vasodilation, which reduces skin barrier function

Oleum anisi: Oil of Anise is employed as an aromatic carminative to relieve flatulence. The oil may be administered on sugar or as Spiritus or Elixir Anisi. It is a mild expectorant, and is an ingredient of simple cough lozenges, often in combination with liquorice

Oleum carvi: Caraway Oil is used to impart flavor to medicines, and to correct their nauseating and griping effects

Oleum eucalypti: The oil of eucalyptus (which is chiefly eucalyptol) and eucalyptol, in small doses, are gentle stimulants; in large doses, they occasion irritation of the throat and fauces, with increased flow of saliva; cephalagia, with extreme fatigue; frequency of the pulse; increased temperature; diminution of vascular tension; gastric irritability, and, not unfrequently, diarrhoea, accelerated respiration, the peculiar odor of the oil being exhaled with the breath; and increase of the urinary excretion

Oleum pine: Pine Oil. It is given internally as a disinfectant and expectorant,

Thymol: Thyme extract. Recent medical research on rats concludes that "Thyme extract had relaxing effects on organs possessing β₂-receptors (uterus and trachea). Thymol has GABAergic properties via a mechanism of action similar to the anaesthetic propofol. Though much less potent, thymol may possess abuse potential (Nice!).

Tincture zingiber: Essence of Ginger  used to calm the stomach and also to treat pneumonia, acute and sub-acute dysentery

Formulation 5

This is purportedly for the treatment of Parkinson's Disease, Soft Tissue Sarcomas and Atrial Fibrillation. It was when I started to go through this particular list that I started to feel like I had stepped into the twilight zone. The lady from whom we bought our house had Parkinson's, and I saw a tiny piece of that that did to her. It is a horrible disease (most of the diseases OHS claim to treat are horrible. This seems to be deliberate). To think that these people are selling the list below (read it) as a "completely guaranteed and clinically proven herbal supplement that helps patients overcome the symptoms of Parkinson's Disease" just makes me want to vomit. Apparently, if I took some parkotab, I might do just that! Read on if you have the stomach for it:

Salvia Haematodes: (from a PubMed article) The aqueous extract of the root of Salvia haematodes has been investigated for its pharmacological actions on the cardiovascular and central nervous system. It was found to possess significant cardiotonic and anticonvulsant activities.

Centauria Behan: Centaurea Behen is the correct spelling. A white flower of the knapweed family. Said to be tonic.

Orchis Mascula: The ground-up root (called Salep) is very nutritive, astringent, expectorant and demulcent. It has been used as a diet of special value for children and convalescents,

Delphinium Denudatum: According to an Indian Medical site: "It helps in reducing the inflammation and also helps in relieving pain. It helps in curbing the infection happening in the body and wounds. It is a good nervine tonic and makes the nervous system strong. It improves digestion and normalizes the peristaltic movements in the gut. It stimulates heart for normal functioning and also helps in purifying the infected blood. It checks the respiratory system by expelling out the extra mucus from it. It is a good aphrodisiac agent and also normalizes the menstrual cycle". (I bet the men with Parkinson's will be pleased to have their cycles regulated. Quick! Call Michael J. Fox!)

Myristica Frargrans: Duplicate entry -a mispelling of Myristica Fragrans (i.e. nutmeg) -see below for details

Cinnamonum Cassia: "Chinese cinnamon", a key ingredient in 5 spice seasoning, but has no medical properties that I could find.

Doronicum Pardalia: Thanks to the misspelling of "Doronicum Pardalis" I found this little gem, from our friends at Ark Corporation in Pakistan.

Aren't misspellings fun?!

Doronicum Pardalis: -no such thing. Doronicum is a plant called leopard's bane and Pardalis is a descriptive word meaning well... leopard! (...so that means...what? leopard's leopard's bane? Leopards bane squared? The mind boggles...)

Zingiber Officinale: Common Ginger. It is often used as a natural remedy for stomach upset, motion sickness, and nausea

Asparagus Racemosus: A plant native to India. It is sometimes used to treat dyspepsia.

Paeonia Emodi: The Himalayan Peony. Not only is it purty,

it actually has a significant effect on the Central Nervous System.  Read this.

I don't know if this is necessarily a beneficial effect for Parkinson's sufferers, however...

Serpentine Bezoar:  It sounds like something out of Harry Potter, right? And it almost is. A bezoar is a mass found trapped in the digestive tract of an animal. A hairball is the most common kind (Yum!).

I couldn't find much information about serpetine beozar (outside of references on various OHS sites). I imagine most of the big ones would end up in a serpentine shape (think about it), as opposed to a having been taken from a snake's digestive tract, although maybe that's what they mean. Either way, I am not impressed.

In the middle ages, Beozars were highly prized and considered to be an antidote to any poison; -which theoretically makes it a good thing to put in this particular formulation,  given some of the other ingredients therein (see further down the list). But that myth was debunked in 1575.

Pearl Oster: This may refer to the remains of this woman (at this point, I wouldn't put anything past Oslo Health Solutions!)

...or it could mean "Pearl Oyster". This in turn, could either mean pearl oyster mushrooms, or it could refer to actual ground-up pearls (less likely).

Caryophilus Aromaticus, which are cloves

Kushta Qalee: I can't quite figure this one out. It appears to be some kind of substance popular for male performance improvement, It is used in several such products including  Ejacutab!  (hey look! There's the laughing couple again!)

Stychnos Nuxvomica: Misspelled. This refers to Strychnos Nux-Vomica, which is a product of the Strychnine tree. (Yes, really! Nux Vomica = poision nut!) According to the Internet, It can actually be used to treat flu, fatigue, hangovers, stress, headache and sleeplessness

...and to kill people, of course. Let's not forget that.

Asphaltum: No. This does not refer to ground-up road. Not quite, anyway. Asphaltum does occur naturally and is sold in India as Shilajit (which means destroyer of weakness in Sanskrit -love that!). According to a site I found "it works as a powerful anti oxidant thereby delaying aging. It is an effective remedy in arthritic conditions like rheumatoid arthritis, osteoarthritis, gout and other joint related problems and back pain".

Amber Gris: Ambergris occurs as a biliary secretian of the intetines of the Sperm whale and can be found floating upon the sea, or in the sand near the coast . Ambergris has been mostly known for its use in creating perfume and fragrance much like musk. During the Middle Ages, Europeans used ambergris as a medication for headaches, colds, epilepsy and other ailments

Bambusa Arundinacea: Thorny Bamboo. It is used as an aphrodisiac, diuretic, demulcent, tonic, pectoral, stimulant, and antifertility treatment.

Myristica Fragrans: Nutmeg! (known as Jaiphal in India) Jaiphal is a aromatic, carminative, hallucinogenic, stimulant that is considered effective in digestive disorder, de-hydration & skin disorders.

I wanted to continue this exercise. There are at least 8 other formulations that I have not covered. But honestly, I am feeling quite ill right now. I think If before, anyone might have thought there may be something to the claims of Oslo Health Solutions, the idea of giving whale bile, posion, hairballs and unstudied anti-convulsants to someone with Parkinson's disease will make them think again.

There will be a Part III in this series, because I still have some questions which I think are relevant. However, in the meantime, here is a list of even more Oslo Health Solutions products I have found while researching this piece.

Hernotab, Hemotab, Hemnotab, Hemorotab, Ejacutab, Phyratab, Fibritab

Is there no end? ...

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

 This list was last updated on September 7th, 2009. There are almost 300 products on it.

Condition	Product
Abdominal Adhesions	http://abdotab.com/about_tab.html
Acanthosis Nigricans	http://nigratab.com/about_tab.html
Achlasia	http://achlotab.com/about_tab.html
Acrocyanosis	http://nansotab.com/about_tab.html
Acute Broncitis	http://bronchitab.com/about_tab.html
Adenopathy	http://adnotab.com/about_tab.html
Adhd	http://hypotab.com/about_tab.html
Adrenoleukodystrophy	http://adrenotab.com/about_tab.html
Agalactia (lack of breast milk)	http://milkotab.com/about_tab.html
Age-Related Macular Degeneration	http://sightotab.com/about_tab.html
Alkaptonuria (genetic)	Alkotab.com (site not available)
Allergic rhinitis	http://rhinotab.com/about_tab.html
Alopecia	http://alotab.com/about_tab.html
ameloblastoma	http://blastotab.com/about_tab.html
Amenorrhea	http://amenotab.com/about_tab.html
Amlyoidosis	http://amylotab.com/about_tab.html
Angina	http://angiotab.com/about_tab.html
Anginoedema	http://dematab.com/about.html
Angionma	http://hematab.com/about_tab.html
Anklyosing Spondylitis	http://spondotab.com/about_tab.html
Anorectal Fistula	http://anoratab.com/about_tab.html
Antiphospholipid Syndrome	http://phosphitab.com/about_tab.html
Aquagenic Pruritus	http://aquitab.com/about_tab.html
Arachnoid cysts	http://archotab.com/about_tab.html
Artery stenosis	http://stenotab.com/about_tab.html
Ascites	http://ascotab.com/about_tab.html
Asthma	http://asthotab.com/about_tab.html
Atelectasis	http://atelotab.com/about_tab.html
Atherosclerosis	http://atherotab.com/about_tab.html
Athlete's foot	http://athletab.com/about_tab.html
Atrial Fibrillation	http://fibritab.com/about_tab.html
Autoimmune Hemolytic Anemia	http://hemotab.com/about_tab.html
Azospermia	http://spazotab.com/about_tab.html (Spazotab?  Seriously?)
Behcet's Syndrome	http://behcotab.com/about_tab.html
Bell's palsy	http://palsitab.com/about_tab.html
Benign essential blaphasospasm	http://prismatab.com/about_tab.html
Benign essential tremor	http://trematab.com/about_tab.html
Blepharitis	http://belphotab.com/about_tab.html
Blisters	http://blistotab.com/
Blood in the Semen	http://silutin.com/
Bone and Joint Tuberculosis	http://tb-tab.com/
Bone Degeneration	http://genratab.com/
Bowen's Disease	http://bonatab.com/
Bradycardia	http://bradnotab.com/
Breath odor	http://odutab.com/
Bromhidrosis	http://bromotab.com/
Bronchiectasis	http://bronchotab.com/
Bulima	http://balmotab.com/
Bullous pemphigoid	http://pemphitab.com/
Burning mouth syndrome	http://burnatab.com/
Canker sore	http://cankertab.com/
Carcinoid syndrome	http://carcotab.com/
Cardiomyopathy	http://cardio-tab.com/
Cataract	http://catratab.com/
Cellulitis	http://cellutab.com/
Cerebal palsy	http://palsotab.com/
CerebraxReiter's Syndrome	http://reitotab.com/
Cervical spine ( i.e. "neck"!)	http://vercitab.com/
Cervical Spondylosis	http://cervotab.com/
Cervicitis	http://cervitab.com/
Cheilitis	http://cheilotab.com/
Chloracne	http://chloratab.com/
Chondromalacia Patellae	http://chondrotab.com/
Chordoma	http://chordotab.com/
Cluster Headache	http://clustotab.com/
Condyloma	http://condytab.com/
Congestive Heart Failure	http://cardotab.com/
Constipation	http://constitab.com/
Cronkhite-Canada syndrome	http://cronkatab.com/
Cushings disease	http://hisnotab.com/
Cyclic Vomiting Syndrome	http://nausitab.com/
Dandruff	http://danditab.com/
Dacryocystitis	http://www.dacrotab.com/
Dark Circles	http://clearotab.com/
Deep Venous Thrombosis	http://thrombitab.com/
Delayed Ejaculation	http://ejacutab.com/
Dermatomyositis	http://myotab.com/
Diabetes Insipidus	http://insitab.com/
Diverticular Disease	http://divutab.com/
Drematofibroma	http://ridmotab.com/
Drooling	http://droolotab.com/
Drug Induced Liver Disease	http://livnitab.com/
Dysfunctional Uterine Bleeding	http://uterotab.com/
Dyshidrosis	http://hidrotab.com/
Dyspepsia	http://dyspitab.com/
Eczema	http://eczitab.com/
Ehlers-Danlos syndrome (EDS)	http://danlotab.com/
emphysema	http://emphotab.com/
Enlarged Tonsils	http://tonsotab.com/
Eosinophilia	http://eosiotab.com/
Epididymitis	http://epotab.com/
Erysipelas	http://eritab.com/
Erythema multiforme	http://emutab.com/
Erythroderma	http://erythrotab.com/
Erythromelalgia	http://meoltab.com/
Eyelid ptosis	http://ptosotab.com/
Fahr's Disease	http://fahrotab.com/
Fatty liver	http://faltotab.com/
Fibroadenoma of Breast	http://fibrotab.com/
Fibrocystic Breast Disease	http://fibrangin.com/
Flatulence	http://flatotab.com/
Folliculitis	http://follitab.com/
Formaldehyde poisoning	http://formatab.com/
Friedreich's Ataxia	http://ataxotab.com/
Frostbite	http://frostab.com/
Frozen shoulder	http://frozitab.com/
Ganglion cyst	http://ganglitab.com/
Gastritis	http://gastritab.com/
Gastro paresis	http://gastrotab.com/
Gilbert's Syndrome	http://gilbotab.com/
Gingivitis	http://gingotab.com/
Glaucoma	http://glaucotab.com/
Globus hystericus	http://globutab.com/
Glossopharyngeal Neuralgia	http://glossotab.com/
Gonorrhea	http://gonorrhotab.com/
Granuloma annulare	http://granutab.com/
Grave's disease	http://gravitab.com/
Grover's Disease	http://grovatab.com/
Guillain-Barre Syndrome	http://guillatab.com/
gynecomastia	http://gynetab.com/
Hand tremors	http://tremitab.com/
Hearing loss	http://sonitab.com/
Hemmorhoids (what, no Pileen?)	http://hemorotab.com/
Hepatic Hemangioma	http://hematab.com/
Hereditary Fructose Intolerence	http://fructotab.com/
Hernias	http://hernotab.com/
Herpes Simplex and Zoster	http://herpotab.com/
Herpetiform dermatitis	http://formotab.com/
Hidradenitis Suppurativa	http://hidratab.com/
Hives	http://hivotab.com/
Hookworm	http://hooknotab.com/
Horner's Syndrome	http://hornotab.com/
Hydrocele	http://hydrotab.com/
hydrocephalus	http://hydra-tab.com/
Hydronephrosis	http://nephratab.com/
Hyperhidrosis	http://anti-sweat.com/
Hypertension	http://nervotab.com/
Hypertensive retinopathy	http://retinotab.com/
Hypotension	http://pentotab.com/
Hysteria	http://hystotab.com/
Ichthyosis	http://ichnotab.com/
Idiopathic Thrombocytopenic Purpura	http://thorsatec.com/
Iga Nephropathy	http://iganotab.com/
Impetigo	http://impotab.com/
Inclusion body myositis (IBM)	http://mysotab.com/
Intrahepatic Cholestasis of Pregnancy	http://choleotab.com/
Irritable Bowel Syndrome	http://irnatab.com/
Jock itch	http://tinnitab.com/
Keloids	http://kelotab.com/
Keratoacanthoma	http://keratotab.com/
Leg ulcers	http://lu-tab.com/
Lennox Gastaut Syndrome	http://lennotab.com/
Leukemia	http://leukotab.com/
Lichen Planus	http://lp-tab.com/
Lichen Simplex Chronicus	http://lichnotab.com/
Lipoma	http://limpotab.com/
Liver cirrhosis	http://cirrhotab.com/
Liver cyst	http://livotab.com/
Low back pain	http://back-tab.com/
Lymphadenitis	http://lymphatab.com/
Malabsorption	http://sorbotab.com/
Male Infertility	http://fertotab.com/
Mastitis	http://mastotab.com/
Melasma	http://melasma-tab.com/
Meniere's Disease	http://menrotab.com/
Menorrhagia	http://menotab.com/
Mental Retardation (Grrrrr)	http://retratab.com/
Molluscum Contagiosum	http://molsitab.com/
Motor Neuron Disease	http://mototab.com/
Multiple System Athrophy	http://atrophtab.com/
Muscular Dystrophy	http://md-tab.com/
Muscular Fasciculation	http://fascitab.com/
Myasthenia Gravis	http://mg-tab.com/
Myelitis	http://myelitotab.com/
Myocarditis	http://carditab.com/
Myopic degeneration	http://mydotab.com/
Narcolepsy	http://narcotab.com/
Nasal Polyps (Note Correct Spelling)	polytab (reassigned)
Nephrotic Syndrome	http://nephrotab.com/
neutropenia	http://neutrotab.com/
Obesity	http://obesotab.com/
Optic atrophy	http://atrotab.com/
Osteo necrosis	http://ostotab.com/
Osteomyelitis	http://osteotab.com/
Osteoporosis	http://ostatab.com/
Otitis media	http://otiotab.com/
Pancreatitis	http://pancrotab.com/
Papular Urtucaria	http://paputab.com/
Parkinsonism	http://parkotab.com/
Paroxysmal Tachycardia	http://tachratab.com/
Pelvic Inflammatory Disease	http://pelvotab.com/
Pemphigus	http://pemphotab.com/
penumothorax	http://pneumotab.com/
Peptic ulcer	http://peptotab.com/
Periodontitis	http://periotab.com/
Peripheral Neuropathy	http://peritab.com/
Peyronie's Disease	http://pyrotab.com/
Pharangitis	http://phyratab.com/
photodermatitis	http://dermotab.com/
Photosensitivity	http://seenotab.com/
Pick's Disease	http://picknotab.com/
Pityriasis Alba	http://albatab.com/
Pityriasis Roseca	http://rosotab.com/
Pneumothorax	http://pneumotab.com/
Polycystic Kidney Disease	http://cystotab.com/
Polycythemia Vera	http://pv-tab.com/
Polymyalgia rheumatica (PMR)	http://myalatab.com/
Polyps	http://colotab.com/
Porphyria (All 6 kinds?)	phyrotab (not available)
Postconcussion syndrome	http://concutab.com/
Post-Polio Syndrome	http://pp-tab.com/
Post-traumatic Syndrome	http://traumatab.com/
Precocious puberty	http://pubotab.com/
Pre-eclampsia (pregnancy complication)	http://clamotab.com/
Premature Gray Hair	http://melatab.com/
Pressure Ulcer	http://press-tab.com/
Priapism	http://priatab.com/
Prickly heat	http://pricknotab.com/
Pruritus Ani	http://prurotab.com/
PseudoTumor Cerebri	http://pseudotab.com/
Raynauds Syndrome	http://raynotab.com/
Rectal prolapse	http://rectotab.com/
Renal Artery Stenosis	http://stenotab.com/
Renal Failure	http://renotab.com/
Restless Leg Syndrome	http://restotab.com/
Retinal Vein Occlusion	http://occlotab.com/
Retinitis Pigmentosa	http://retnitab.com/
Rheumatoid Arthritis	http://arthotab.com/
Ringworm	http://ringotab.com/
Rosacea	http://rosatab.com/
Salivary Duct Stones	http://ductotab.com/
Schistosomiasis	http://schistotab.com/
Schizophrenia (now that is dangerous!)	http://schizotab.com/
Sciatica	http://sciatab.com/
Scleroderma	http://sclerotab.com/
Sebaceous Cyst	http://sebatab.com/
Seborrheic Keratosis	http://sebotab.com/
Sensitive Teeth	http://sensotab.com/
Shingles	http://shingotab.com/
Sick Sinus Syndrome	http://sindrotab.com/
Sinus Tachycardia	http://tachytab.com/
Sjogrens Syndrome	http://sjorgotab.com/
Skin Abscess	http://absotab.com/
Skin Tags	http://tagnotab.com/
Soft Tissue Sarcomas	http://sarcotab.com/
Spasmodic Dysphonia	http://dysphotab.com/
Spider Veins	http://telitab.com/
Spinal Muscular Atrophy	http://muscotab.com/
Stroke (...REALLY?)	http://strototab.com/
Sunburn (check the privacy policy)	http://bursitab.com/
Syringomyelia	http://syrotab.com/
Teething troubles	http://dentotab.com/
Temporomandibular Joint Syndrome	http://tempotab.com/
Tetanus	http://tetnatab.com/
Thalassemia minor	http://thalsotab.com/
Thrombocythemia	http://thrombotab.com/
Thyroid Nodule	http://thyrotab.com/
Thyroiditis	http://thyrodin.com/
Tick Bite	http://ticknotab.com/
Tinea Versicolor	http://tineatab.com/
Tinnitus	http://tinnutab.com/
Trigenimenal Neuralgia	http://trignotab.com/
Trimethylaminuria	http://lamnitab.com/
Ulcerative Colitis	http://coliotab.com/
Undescended Testicle	http://testitab.com/
Upper Gastrointestinal Bleeding	http://gastrobat.com/
Urethritis	http://urethrotab.com/
Urticaria Pigmentosa	http://carcitab.com/
Uterine Fibroids	http://utritab.com/
Uterine Prolapse	http://utrinotab.com/
Uveitis	http://uveinotab.com/
Vitreous Hemorrhage	http://vitrotab.com/
Vocal Cord Nodules	http://nodutab.com/
Vocal Cord Paralysis	http://vocotab.com/
Von Willebrand Disease	http://willetab.com/
Vulvovaginitis	http://vagnotab.com/
Vulvular Dystrophy	http://dystrotab.com/
Waldenstrom's Macroglobulinemia	http://waldotab.com/
Warts	http://wartotab.com/
Wilson's Disease	http://wilsotab.com/
Wiskott Aldrich Syndrome	http://wiskotab.com/

I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

Tagged! Six Unimportant Things...

Carleen over at Life, Liberty and Good Coffee has tagged me for a fun little exercise. List six unimportant things that make me happy.  Then I must tag six people to whom I pass it along.

So here goes:

Six Unimportant Things That Make Me Happy:

1. The smell of lilac that hits my nose when I walk past the bush in our front yard (now sadly, gone until next year) 
2. Playing with my goofy dog (this is a cheat entry because it is not unimportant to him)
3. The very intelligent and quizzical way our cat Hannah looks at me when she wants something
4. Polydactyl cats (have six or more toes). I want one, but we cannot get another pet right now.
5. Waking up in a panic and then realizing it it Saturday and I can go back to sleep
6. Seeing the climbing rose in my backyard in full bloom (it is not there yet)

Here are the  "victims" I am tagging for this.

Lisa Moon
Quirky Mom
By His Grace
Stephen Deal
roanmom
GFCF Mommy

Honoured

I have to use the English spelling for this one. "honored" is not quite up to the job.  It's fine, usually. After sixteen years of living in the States I now use it -as I use "color" and  "pretense". But today the more formal spelling is warranted.  Sometimes you have to revert to type.

I have been selected for the Premio Dardos Award by Carleen over at Life, Liberty and Good Coffee.

The Prémio Dardos is given for recognition of cultural, ethical, literary, and personal values transmitted in the form of creative and original writing. These stamps were created with the intention of promoting fraternization between bloggers, a way of showing affection and gratitude for work that adds value to the Web.

THANK YOU CARLEEN!!  As I said before, An even greater honour than the award itself is that you selected me.

OK here are Da Rules:

1. Accept the award by posting on your blog along with the name of the person that has granted the award and a link to his/her blog.
2. Pass the award to another 10 blogs that are worthy of this acknowledgment, remembering to contact each of them to let them know they've been selected for this award.

I will get to that second part in a minute.

You know, I did not enter this blogging business to win awards or lots of readers or ...anything, really. I had no ambitions for it. I just wanted to express myself and have an outlet. Blogging has delivered far more to me than expected.  I'm glad I started.

I am very grateful that many people around the world come back and read regularly. Some even comment!  Thanks to everyone who comes here, comes back here and who has reached out to me through this blog.  My life has been enriched by you.

Now the difficult part. I have to name only 10 people for this award.  I didn't take this task lightly. Here are my selections in no particular order.

Yanub at yet another never updated blog
Elizabeth McClung at Screw Bronze
Stephen Deal (Quicksketch) at How to be an Inspiration
Harold at Facing Autism in New Brunswick
Quirky Mom at Confessions of a Quirky Mom
Bendy Girl at Benefit Scrounging Scum
By His Grace at Life after a Jefferson Fracture
John et al  at Storied Mind
GFCF Mommy at GFCF Mommy
The Goldfish at Diary of a Goldfish

Please Don't Adjust The Internet

I am having some pretty significant computer problems right now (am writing this on a borrowed computer), so I cannot post, lurk or respond as much as I would like right now.

Normal (dis)service  will be resumed as soon as possible. Please do not adjust the Internet.

OSM.

Know Your Enemy

(I just know I'm going to be lambasted for this one. Oh well...)

I have seen a lot in the blogosphere about Jerry Lewis and how many people in the disabled community   think he should not have received a humanitarian award. That Jerry Lewis, despite raising around 2 billion dollars for Muscular Dystrophy (MD), Amyotrophic Lateral Sclerosis (ALS) and Spinal Muscular Athropy (SMA) is not a humanitarian. Money raised alone does not a humanitarian make. 

I became curious about the whole business. What has Jerry Lewis done or said (or not!) that is so horrible?  Would people with Muscular Dystrophy, ALS, and SMA  (or one of several other degenerative neuromuscular conditions) be better off without Jerry Lewis?

Personally, I have never liked the guy. From the moment  I first saw him on the telly, in one of his older, black-and-white movies, where he over-exaggerated every nuance (actually, “nuance” is way too strong a term under these circumstances).  I remember at the time, my beloved Da was giggling at the same movie, while I, all of about 9, was transfixed in horror. I couldn’t understand how a performance could be so overwrought and under-funny at the same time. That experience was an eye-opener for me, because it introduced the concept that people like Jerry Lewis exist. People who are loud, brash and over-exaggerated in almost everything they do.

Years later, probably in the 90s, I saw part of one of his telethons somewhere –I think it was in an airport or somewhere similar where I couldn’t leave and couldn’t change the channel.  I disliked his patronizing and pitying attitude, but then I thought to myself he’s JERRY LEWIS.  What do you expect?  And I listened some more, and realized that he had been on the air for a horribly long time, and he did this every year, and I just had to admire his passion and dedication, even if I disagreed with some of his language and attitudes.

Because –whatever criticism one can level at Jerry, and there has been plenty; here is the one fact I keep coming back to: Jerry Lewis saw MD as a horrible disease and instead of thinking that’s a horrible disease, I’ll donate a few thousand bucks a year and claim it on me tax returns, and leave it at that (guilt presumably assuaged),  he got up off his arse and he really, actually DID something.  A lot of somethings. For over fifty years, through his own illnesses and personal stuff. And it is said he never asked for a penny of payment for his time, which was many thousands of hours. That must represent an awful lot in lost earnings for him

You really cannot fault the guy’s dedication and work ethic.

So aside from some outdated concepts in the telethons –and let’s face it: The man will turn 83 years old next month. How can you expect him NOT to have some old-fashioned notions? How many old people do you know who are politically correct?  Indeed: I just used the term “old people”. What people -young or old, do you know who are politically correct all the time?

 

I decided to find out what Jerry had done that was so bad and had pissed off so many people. I went onto the site The Trouble with Jerry (TTWJ), which is the main protest site and I watched a few of the videos of the protests.  The first thing I noticed was that many of the protesters at the Academy Awards did not appear to have Muscular Dystrophy at all. They claimed Jerry did not speak for them. They are right. Jerry’s causes are MD and ALS, not disabilities in general. Then I noticed discrepancies in some of the Jerry-attributed quotes. “Jerry said to have a disability is to be half a person”.  Well, I happen to be familiar with that particular quote (the original, that is), in context and that’s not actually what he said at all.

These discrepancies piqued the interest of the researcher and analyst in me. What other quotes have morphed with repetition amongst dissenters or have maybe been taken out of context? What did Jerry actually say about people with disabilities?  Is he really a bigot or maybe somewhat misunderstood? 

 

I searched their site for the Jerry Quotes which indicated “bigotry towards people with disabilities. There are 10 of them.  In over 50 years, he has said or written 10 statements (three from the same article),  which some people with disabilities found distasteful, as well as hosting a schmaltzy telethon every year for almost 50 years which is outdated in tone.

10 statements in 50 years! What a complete and utter bastard!  He should be shot rightaway. Or as my sister once famously said "he should be put against a wall and gassed!" Oops sorry! My sarcasm escaped just there.... (Full disclosure,. Jerry Lewis has also said bigoted things about women and the LBGT community, but I am not addressing that here).  Then I looked at some of the actual quotes. Many of them seemed to have been deliberately “misunderstood”. "Jerry said if you are diagnosed with ALS "you might as well put a gun in your mouth"". Yes he did.  TTWJ choose to interpret this statement as Jerry saying that all people with ALS have no quality of life or should be shot. I choose to interpret it as follows:

An ALS diagnosis is a sure death sentence

Which -as of now- is true. There is no cure. And as the quote was taken from a telethon to raise funds for ALS research, I think my interpretation makes more sense than theirs. Spin is interesting, no?

In fact, when I picked through the 10 quotes, I realized the nastiest things Jerry Lewis said about people with disabilities were directed at his detractors; at TTWJ and it's ilk, those demonstrators who have been a thorn in his side for years. They were not directed toward people with disabilities in general.

Now, I started a detailed analysis of Jerry’s article for Parade magazine, the one that seems to spark the most derision from his detractors,  but then I saw that Blake at I Hate Stairs produced a far better breakdown of it, from a better perspective (i.e. someone who has a condition which is similar to MD) than I ever could, so I am going to send you over there to read it.

And then read his brother's piece on the Jerry Lewis haters.

 

Welcome back!

So to my point: “Know your enemy”:  First off, anyone who wants to Jerry-bash (and let’s face it, he is an easy target) should at least afford the guy –and themselves- some basic respect  and do it in a meaningful, well-thought out and  well-researched way, instead of deliberately “misunderstanding” quotes of his  (and now who is perpetuating disability myths?).

And secondly: When I say “know your enemy, I mean know who is your enemy.  Jerry Lewis is not the enemy here. Muscular Dystrophy is the enemy. Jerry Lewis has been fighting Muscular Dystrophy longer and harder than almost anyone on the planet. And while your enemy’s enemy may not be your friend, Jerry Lewis is not your enemy.

 

I have to tell you; -on a personal level, I feel a bit weird about writing this whole piece.  Never in my entire life did I ever think I would devote 1,300 words in defense of Jerry Lewis. I never liked the guy!  And also, this is not my fight! I don’t have MD or a related condition. In fact, I only know two people who do: Stephen Deal, who is a virtual friend, and my friend’s son; -we’ll call him Robbie, who is a little older than my own son, Joe.

Having read Stephen’s blog for months, and having only a tiny inkling of what Robbie and his family are going through, and having been very distressed by their plights, I have to say that I am siding with Jerry on this issue. (in case you hadn’t guessed), He earned that award. Yes, some of his wording and money-raising tactics are old-fashioned, but I suspect Jerry thinks the end justifies the means. And in Jerry’s mind, as in mine, there is only one end: a cure, and almost any means are justifiable.  Because MD is one nasty fucker, which is usually fatal (fast or slow, but degenerative and fatal), and you wouldn't wish it on your worst enemy.

Stephen Deal is perfectly capable of speaking for himself should he choose to weigh in on this topic, so I didn't ask him for any input on this piece. However, I asked Robbie’s father what he thought about the Jerry protesters, and while he wrote a long and well-thought-out reply, I am going to go for the cheap soundbite and only use his last line.

“None of these disparaged people are doing anything to save my son's life or the lives of other peoples' sons. So, they can go fuck themselves.”

Getting An ASD Diagnosis

Aspie blogger Quirky Mom put a shout-out on her blog recently for diagnosis stories for ASD kids. I was going to reply in the comments, but I have two kids, so two sets of stories. And I find it hard to use three words when three hundred will come pouring out. I started to write a book on her comments and quickly figured it  would be easier to instead put it here and link.  There is nothing worse than writing a long response and then losing it to the whims of Blogger. OK that's not true. There are a LOT of things that are worse:  Death of a loved one, a car accident, flares, seizures, dislocations, a splinter under the fingernail.... I could go on and on.  But writing a long reply and losing it is pretty bad all the same.

So on to Quirky Mom's questions:

1) Who did you first talk to about your concerns for your child?
For Joe, it was the pediatrician, who poo-pooed my concerns and told me to "wait six months" (this was the same guy who gave me the "Babies under one don't get Strep line; -funnily enough, although this was before that).  In the end, I didn't wait that long. After a party in a friend's house, where Joe completely ignored the other kids in favor of standing motionless and oblivious for over an hour, right in the middle of foot traffic,  listening to the music while watching a strand of spiderweb wave in the breeze,  I called the girls at the front desk and got the number for Early Intervention.

Grace was much ahead of Joe developmentally. However, because of my earlier experience, I was hypervigilent. I first asked the Daycare people (a couple who ran a daycare from their home, who were WONDERFUL and had many years experience) if she was behind the other kids or different in any way. Ines hesitated, then took a big breath and said what I had suspected. Compared to Joe at that age, Grace was ahead. However, compared to typical children, she was behind. They then went on to tell me other stuff she did that they thought unusual, such as never sitting for circle time, and never really playing with the other children, just walking around them. They said they had nicknamed her "the wanderer" for this.

I contacted EI, they tested her, and did that worse-case thing: Yes there were delays, but not enough to qualify for services. As time went on, some new quirks emerged. Then, once she turned three, I contacted the school district and arranged for another evaluation.  She qualified for speech and OT.

 

2) Does your child have a diagnosis? If not, do you think the lack of diagnosis is appropriate for your child? Do you plan to seek one in the future?
Joe's diagnosis was He is on the Autistic Spectrum, we don't quite know where.   They then went on to explain they were calling it Asperger's Syndrome, because he is so related, personable and high functioning. Technically, his diagnosis should be Autistic Disorder because of the regressions and huge speech delay (on paper, he totally meets the criteria). But they thought Autistic disorder did not properly describe him 'now'  ( he was then 5½ years old).

Grace was the trickier kid. (I know. After all that with Joe, Grace was trickier). She initially only qualified for Speech and OT. When she was 4, I asked the district for a re-eval. They sent a team to her regular preschool to evaluate her and every one of them said much the same thing. "On paper, she tests fine, but you see her -especially with other kids and there is something...."  By this time, I had an excellent relationship with the school district -it was virtually a home away from home, so I pushed for an IEE.

The psychologist came to the house and did what looked like a very basic evaluation with Grace, who passed. He was literally walking out the door: "She is fine". I stopped him. "But you never spoke to me about my concerns".  He kind of sighed and I sat him down and mentioned a few things, including Joe's diagnosis. He went back to the table and administered a few more intensive tests. He came back to me, and said something like "You're right. There is something there. She doesn't meet the criteria for Asperger's, but there is definitely something..."  (they always leave that "something" hanging like that)

His report came back "At risk for Asperger's Syndrome".  This turned out to be a stroke of genius on his part. The disict threw a bunch of services at her and she made huge progress. I thought back on this later, and figured maybe the district was (is) afraid that should she go on to develop... I dunno "full-blown Asperger's"(? lol), maybe I could sue them for not averting the risk.

3) Who gave you your child's first diagnosis? Was this the "proper" diagnosis? If not, how did you get the "proper" diagnosis?
Joe initially saw a well respected neuropsychoogist who said he was "too young" (almost three) for a definitive diagnosis. Then, over two years later, he saw a grad student (PhD candidate) at a local university, who evaluated him under supervision of a professor.

Grace saw that psychologist I mentioned earlier as part of an IEE through the district when she was about 4 (she is now almost 9). I have not brought her back for a formal diagnosis, because she is getting quite excellent help as things stand. If it's not broke, don't fix it. 


4) How did you find the professional who gave you a "proper" diagnosis?
I thought the university and the neuropsychologist who initially tested Joe did a good job. They at least ran the full suite of tests.

The qualified psychologist who saw Grace only did a screening, not a full evaluation until I collared him on the way out. I figure this was because the school district was paying (but maybe that is the cynic in me).

5) If you or your child's other parent have a diagnosis yourself, do you think this made the process smoother? If you (or the other parent) are not officially diagnosed, do you think having such an official diagnosis for a parent would help?
It depends on the diagnosis. I have a diagnosis of ADHD, but mine happened after both my kids were  um... "diagnosed". I think in my case, it would be a disadvantage to tell the school. I have already come under some pressure from the school to medicate Joe and the school tested him for ADHD in his last triennial (two questionnaires, the school one lit up like Christmas, the home one was completely dark). I figure if the school knows my DX, the pressure to drug the kids would increase. (I just want to note here that I am not anti-medication.  I took Adderall myself for awhile. However, I believe meds should be given only if needed and as part of an overall program which teaches coping skills. And I had some nasty side-effects).

6) Do you have resources you would recommend?
Check local universities for Autism community outreach programs. There are two big universities around here who have such programs. They have counseling, social skills groups, and evaluations, both by qualified and nearly-qualified people. it is also a good way to meet other Autism Moms.

I also recommend joining a SEPTA (Special Ed PTA)  or other local support groups. The Internet is great, but other real-life parents are a terrific resource for finding ..."stuff" locally.  They will know the good Karate teacher for special needs kids, the better neurologist, psychologist etc, as well as things like camps and classes. They also usually have the inside scoop on the school district and programs available both in-district and outside.

See? I told you it was long!  I hope this helps Quirky Mom and any others out there who are struggling with these issues. 

Two Huge Revelations

Yesterday, I finally realized something huge:  The Florinef seems to be going a long way towards controlling my seizures. I think I finally got the dosage right on Saturday. I felt good that day until almost midnight, when I had a massive seizure.  This seizure had kind of come up suddenly, with none of the usual triggers and I wondered in my head if it was the medication wearing off? 

The next day, I took the same dose and I felt good until about 3:30pm and again: I felt awful and I knew it was a prodrome. Sure enough: Two huge fits ensued.  I wondered if the medication was wearing off, and this was why I was seizing like that?

I am supposed to take this medication only once a day. However, on Monday, I thought I would try something different, when Himself was going to be home. I took the same dosage in the morning. Then at 2:30-ish I started to feel crappy again, like the med was wearing off. I took another half a pill, taking me up to the full dosage the doc had recommended.  I beavered away at the computer, hoping to get some research in before the seizure came.

It never came. I realized a while later that I was starting to feel well again.

WOW!

I mean, really: I have tried all sorts of things to stave off a seizure in the past: eating, drinking,  fasting, salt, sugar, exercise, laying still, taking anti-epileptic drugs, even Excedrin Migraine (when Migraine was the working theory). Nothing worked. NOTHING.

Until yesterday.

Now some people might say I was naughty to mess with my meds, and normally I would agree. However I searched the Internet high and low for some kind of information on Florinef or Aldosterone (the hormone which Florinef replaces) and seizures, convulsions or epilepsy. Nothing. I searched for information on Addison's disease (the closest searchable condition I could come up with that related to Aldosterone deficiency) and seizures, convulsion or  epilepsy.  Again, nothing. So I figured this situation is pretty much unprecedented. I could have called the endo or the neuro, but they wouldn't have a clue. So  I chose to listen to my body.

Sometime after 4pm, I had figured out the Florinef had definitely staved off the attack. I kept searching the Internet for possible reasons why and coming up empty again and again.

I hit bottom.

I started to lose the conviction that had kept me going thus far. I started to thank that maybe it *was* just a very elaborate placebo effect. I was starting to wonder for the first time in 2½ years if I might actually be going mad? I didn't in my heart think "mad" really explained all my symptoms. I don't suffer with anxiety, like most people with psychologically based seizures do.  But maybe I was a particularly clever and elaborate madwoman? Maybe I don't even know I was anxious (at specific times of day and after meals) and that anxiety was causing the seizure, as the "experts" (who spent less than an hour with me) have suggested?  And I didn't feel mad ...but I think people usually don't if they are truly insane. 

I was really starting to question ... everything.

Then, in the midst of my increasingly frantic searching of th Internet and questioning of myself,  I noticed a new person had commented here on OSM. At 4:32pm Tara had left a very nice comment. I wandered over to her blog (the other one) to have a little look at it.  Tara has a beautiful daughter with special needs. I  clicked on the link to Chloe's background story and read it. I froze when I read this paragraph:

"A Google search quickly made me realize that Infantile Spasms, aka I.S. or West Syndrome, is a very BIG deal. I read that 90% of babies with I.S. end up with mental retardation and they have a 60% higher mortality rate before the age of 10. The medication used to treat it, ACTH, cost $20,000 a vial..."

Hang on: ACTH isn't a seizure medication! I know them all. In fact, from all the research I had done in just the past few days, I recognized the name ACTH immediately. It is the hormone the body produces to stimulate the adrenal glands, which in turn produce cortisol and...

you guessed it: Aldosterone. 

The stuff I am virtually missing that the Florinef is replacing.

WOW!  Talk about a bombshell!  I was stunned!

OK ACTH does not directly produce aldosterone, but that close relationship is more than a coincidence. it has to be!

I did some searching on West Syndrome. West Syndrome -by it's very existence, proves that there can be a link between seizures and adrenal hormones. I missed it because I wasn't searching on ACTH.  Unfortunately, when I researched a little further, I realized that this particular therapy has only been researched in young children.  Not in adults at all.

I guess "they" don't think a hormone deficiency can cause seizures in adults. Therefore I suppose all the other adults who might have this have been chucked into the "psychosomatic" bin by their doctors.

How glad am I that I refused to be placed in that bin?  And how glad am I that Tara happened by this blog, virtually in the very hour that I was starting to give up hope, and she (totally inadvertently) provided me with the clue that inspired me to keep going?

Very glad. Wordlessly glad.

Now, I don't know if this Florinef thing is the ultimate answer for me. For one thing, it seems to have a HUGE rebound effect. When it wears off, I start to feel unwell pretty quickly. I get the weird "sunglasses" headache, my foot goes numb and I start to feel awful. The seizures, when they hit, are WAY worse than my regular seizures. They last longer and are more intense.

And an aldosterone imbalance doesn't seem to explain a lot of other stuff, either: It does explain the meds reactions.  But it might explain some of the vitamin deficiencies. But I feel this is a HUGE step in the right direction. I guess I need to do a lot more research and speak to more doctors.   I have a few key appointments lined up in the next few weeks.

Interesting stuff, eh?  I will keep you guys updated.

5 Minutes for One Sick Mother

The excellent site, 5 minutes for Special Needs has posted an interview with yours truly. -and a rare photo of OSM. Here is the link. 

Here is the interview in full. My version is a little longer. I posted it  below, incase you are interested in more than just the juicy parts ;)

Tell me a little about yourself and your family.

I am 41 years old and originally from Ireland. I met my Scottish husband in London and we moved to New York City in the early 90s. Our children were both born here. Joe is 10 and has High Functioning Autism. Grace is 8 and has (we think) Asperger’s Syndrome –she has been a tricky one to quantify.We now live in the NYC commuter belt in a town which –coincidentally, has an excellent Special Education record.

You blog about your life with chronic illness. How has this impacted your parenting?

There has been both good and bad. The good: I have been home fulltime, and my children’s teachers and therapists have all reported that this has had a positive effect on the children’s performance in school (sorry working mothers, but they did). I am much more involved in their daily lives now, and we do a lot together. I taught Grace to knit and sew, and Joe is teaching me all about Bakugan (his obsession) and is plotting my demise in Scrabble.

However there is a lot that I now cannot do. We used to do a lot as a family: go to the Zoo, the beach, daytrips, longer trips. These activities have been reduced significantly due to my limitations (mobility, fatigue, seizures) and the financial limitations we now have with a single income and a disabled Mom.

 

Tell me more your children’s disabilities.  Did you know when they were born that they had disabilities?

They were born perfect. They are still perfect. I just changed my definition of perfect.

If not, how did you feel when you discovered it?

Joe is the oldest and I thought I dealt with it pretty well. I sprang into action to get services, schools, therapists set up. All was OK for a few months. Then one day I was driving home and a Moby song came on, with a line about “troubles with God” and I started driving down the expressway like a crazywoman, looking for a break in the divide so I could drive into oncoming traffic. I got a grip on myself after a while, and sought counseling the next day.

The therapist said my reaction was not unusual. That I had gone into overdrive to try and “fix” things for Joe. However, by busying myself, I had not actually given myself a chance to deal with my feelings about it. Then after things settled down a bit, those bottled-up feelings hit me like a brick that day on the Expressway. I stayed in therapy for a bit and it did help.

You blog a lot about your children’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about them?

It was a natural progression, I suppose. A lot of my blogging is about medical issues (mostly my own) and medical advocacy. However, I cut my advocacy “teeth” dealing with doctors and school systems on behalf of my children (I have a lot to thank them for). I thought carefully about including posts about them in the blog. It really started because they have one of the same medical conditions that I have (it’s genetic). And once I included that, well, the Autism and other stuff came in too. I am aware there can be pitfalls in this scenario. I do try to blog about them in a loving manner and to portray them as real people with real …everything!  I don’t want to be one of those bloggers who moan about how awful life with Autism is, OK their life with Autism may be horrible,but mine isn’t! Autism has not been the worst thing Fate has thrown at me. Not by a long shot…

What do you personally get out of blogging about them and their issues?

I get to celebrate! I think this is one of the first posts I wrote specifically about special needs parenting:

I feel that –right now- they are both in good places. They are 8 and 10 and doing well in school and in general. Things were much harder when they were little and will probably be harder again when they are teens. I want to chronicle this time now, for others with younger kids, and for myself in a few years time, when I am up to my armpits in problems. I can look back and remember that this parenting business is a cycle.

I also get to process my thoughts. I work out my thoughts by writing about them. I know I could just write and store them on the hard drive. I tried that, but it really isn’t the same discipline at all.

How have your children’s disabilities affected you as a person and as a mother?

I feel that have made me a better person and mother. They have made me much more aware and less judgemental. I was an uppity cow when I thought they were “perfect”. I am much more real now. I have more patience now for them and for other people.

What do you wish you had done differently?

I wish I had followed my instinct and listened less to the well-meaning (but wrong) family members, doctors, and friends who gave advice like “let him cry it out” (he couldn’t) and “He’ll eat when he’s hungry” (No. He won’t. He doesn’t know that feeling is hunger). Eventually I got sense, went online, found a bunch of moms like me and started comparing notes…

What did you do right?

I got sense, went online, found a bunch of moms like me and started comparing notes…

What do you want other parents to know?

1. Follow your instinct, but not blindly (see #2)
2. Do your research. Say you are searching for a suitable school placement for your child: Visit all available options, spend some time at each one and imagine your child in that setting. If that thought makes you want to hurl, then we are back to #1. Following your (literal) gut instinct, cross that school off the list and check the next available option… Rinse and repeat.
3. Don’t compare your child to typical children. Compare your child to him (her) self 3, 6, 12 months ago. That way you will really see and appreciate the progress, instead of lamenting the fact that (s)he isn’t typical.

 

Has your own illness and disability given you any insight into your children’s issue

I was actually diagnosed with ADHD before I got sick, so yes! I have good insight into a lot of their issues.

But seriously: I used to be very much a career person –very goal orientated; -looking towards the next …everything: The next vacation, the next house then next job, The next Big Thing. I didn’t spend very much time in the here and now. Being sick has given me a much greater appreciation for the present. I spend much more time just hanging out with my kids now, instead of trying to prepare them for something.

Is there anything else you would like to share?

When Joe was first diagnosed I was “warned” by the professionals that he may never talk, that he may never learn to read or write and would probably never attend a regular school. Now, I am sure these people were trying to help in their own way to ‘prepare’ me for he worst… Which. Never. Happened!

Yes, Joe was in Special Ed for a long time. Over time he made huge progress. He is 10 now and most people who meet him casually –including a psychologist- are shocked to hear of his diagnosis (OK give him some time and they usually see something). He can hold a conversation, he is on Book 3 of Harry Potter and he is in a regular class in a regular school.

I think the moral of this story (so far) is to keep advocating and never give up hope. “They” are not always right!