One Sick Mother

Alternative Medicine Guy

He dyes his hair.

Yep. That was my first thought and first impression of the Alternative Medicine Guy. It's not the worst first impression of a doctor I have ever had.  That would go to the tremoring 90-something-year-old guy in Dublin who Asked me what I did for a living, and when I told him I was at school he said "you shouldn't teach. It ages you" I was 15 at the time, so I left there feeling COMPLETELY paranoid about looking old, went straight to the Chemist and bought all the anti-aging products I could afford (which fortunately were very few. I was only 15 and permanently broke. I think I left there with some cold cream and a new soap).

It wasn't even the worst hair first impression of a doctor I have ever had. The first neurosurgeon I consulted with after they found the syrinx had a dog turd confection on his head, which would rival The Donald in all categories except brass balls. I tell you, although it was perfectly formed, it shook my faith in him as a surgeon, because I wondered if it would somehow unwind and dip into the incision during surgery. <shudder>  Yes. I think of these things. Don't tell me you don't. You just don't admit to it.

I admit I was not open to forming a good first impression because I was a little cranky. It was a 12pm appointment and I had forgotten to eat lunch. Then I had been left waiting for almost two hours, listening to the guy next to me tell a women with pernicious halitosis his life story, what to eat and not to eat in a lilting southern drawl.  I kept waiting for him to say "...and Mints. Lots of mints" but he didn't. So he either had remarkable restraint, an iron stomach or no sense of smell. My money was on the latter, so my faith in the Alternative Medicine Guy was somewhat shaken before I even laid eyes on him. I thought is my sense of smell going to be the tradeoff for treatment? Would treatment be worth it? And I thought if one of the side effects was halitosis like that, and I would be spending a lot of time in that waiting room with a lot of other reeking patients (and I had already figured out that several of them return for treatment multiple times per week), it would likely be obligatory.  I would probably beg for it by the third session.

I had wanted to see this doctor because there were a few things on my medical "todo" list that needed crossing off, particularly heavy metals testing and a panel for the remaining vitamins and minerals which had not been tested. I also wanted someone to work with me on *why* I am not processing Vitamin C, rather than just tell me to take mega amounts of it. I had asked #25 about this stuff, and although he has stepped outside of his Board Certified Neurologist box a smidgen, there was no way he was going there with me. He is just too spotty a leopard. Fine. Onto #26: Alternative Medicine Guy.

Now you might think that the dyed hair would make #26 a Matinee idol, but no. Alternative Medicine Guy was warm. He shook my hand like he meant it, and he actually showed curiosity, interest and compassion. He spent time with me, which went a long way to explaining the two-hour wait. He took a detailed medical history, looked at some old test results and more recent bloodwork. He had heard of Ehlers-Danlos Syndrome and Syringomyelia. In fact, he said he treats a lot of EDS patients because he does prolotherapy at the office. I filed that information away for future reference. I may never use it, but who knows? Never say never.

He asked about diseases which had been ruled out by other doctors, and then explained why some of them maybe shouldn't have been ruled out (like Lyme). He explained a lot of stuff very well. And most of all, he listened and he didn't poo-poo any of my concerns.

Then a really interesting thing happened, and I really don't know quite how I managed to time it so: Missing lunch is a pretty big seizure trigger for me. Well, by this time I was hours past breakfast with nothing but a little Emergen-C to sustain me. I had two fits right in front of the guy. Luckily they were very small ones and lasted less than a minute each, but it was kinda weird. The doc was fascinated and kind of horrified "This has been happening for how long?".  He then asked a lot about my childhood and places I had lived and worked. He explained having seen a fit firsthand, he thinks my problem may be heavy metal poisoning. "That's what "N" said!" I wanted to exclaim, but I didn't, because he doesn't know her from a hole in the wall.

Instead, I chose the cynical route and the inner monologue: Hmmm. OK I thought ...chelation is probably his biggest money spinner, so he would say that.  I offered him some hair to test (I still have some left, but won't after Saturday) and he said that he considered the hair test unreliable. He was going to test nutrition, diseases and other stuff first, have me see his partner who does metabolic and endo work (he was very interested in my hypoglycemia and the correlation between my fits and eating patterns) and then talk about chelation. OK that makes more sense.

I liked the guy, he seems passionate and committed. But then again he seems to have a very nice business going there. Enough to keep him in hair dye for a very long time. I'd be passionate and committed about an earner like that, although I would go for a lighter shade, myself. Even if I had his eyecolor... So I'm not completely sold on the guy. I do want to get all of the testing done, but I wonder what I will do when it all comes back? This place is not covered by insurance. Worst case scenario, I could be talked into trying a whole bunch of experimental and unproven treatments and end up broke but still having fits. 

I guess I will just have to do what I do best, muddle on through and figure things out as I go. I have not given up on conventional medicine (honestly, Bill). I had a 24 hour ambulatory EEG a couple of weeks ago. I will be seeing Alternative Medicine Guy on a Tuesday to go over the bloodwork and the endo stuff, and then I will be seeing #6 on that Thursday for the EEG results. I guess I will be making decisions after that.  I will probably make another appointment with #25 and talk it over with him, because although he is stuck in his box, maybe evidence will unstick him a little. And it never hurts to have another set of eyes on a problem.

In the meantime, I will be eating lunch on time.

One-Footed Son

Sometimes I get tired writing about myself. Despite what some might say, I don't find me all that interesting.

So on the Tuesday after the long weekend, the school nurse calls to tell me that my son has been favoring his right heel. Usually he favors both heels -he is a toe walker, so I thought that was interesting.  I asked if she was sure he is limping. She replied "yes. And I asked the physical therapist, and she noticed it too". So I asked when they first noticed it.  "Last week."

Quoi?

I didn't get into the whole why did you wait until Tuesday to tell me? thing. I assume they thought I would notice, and I probably would have under normal circumstances, but I was cooped up with One Sick Daughter all weekend, so the boys were mostly left to fend for themselves. Also as I said, he is a toe-walker, so it is not unusual for him to raise his heels. In fact, had I noticed, I would probably have thought something was wrong with his left foot.

So I called the pediatrician, and managed to get him squeezed in that day with the NP (who I love). She took a look at him, and said she thought the problem might originate in his hip. Then we got into the whole "pain in the bath" story, and everyone got confused (Except One Sick Daughter who was merrily spinning on the stool which they leave in each pediatrician's examining room specifically to make a kid sick if they happen to stumble in there with nothing wrong). She put him on Motrin and referred us to a podiatrist.  She recommended this guy very highly.

I called the podiatrist and made the appt. I was sure to mention to the receptionist that he has Autism, and therefore is not like regular kids. She was very reassuring and we managed to get an appointment for this morning (Friday). He had to miss some school, but I didn't want the poor kid limping through another weekend.

Any mother of a child with Autism -or any special needs, will tell you that they dread an appointment with a new doctor. There is no telling how your child will behave in new surroundings or with people he doesn't know. And there is always that fear that an unknown adult will do one of the Big No-Nos, like ruffle my son's hair (the one thing almost guaranteed to send him into a tailspin).  I have spent many unhappy minutes in doctor's examining or waiting room (or hospitals) trying to coax my son out from under a table, while many disapproving adults have stood by and tutted. So we get to the office and again, I stressed that he has Autism, The woman smiled and said she had told the doctor already.

So the podiatrist walked into the examining room, and about the first words out of his mouth were that he has a special needs child who is a year older than the One-Footed One. He examined my son without appearing to examine him at all, by asking him to walk to another room to see his toys (turns out the doc is a big collector of Stuff and an Austin Powers fan). We talked about his EDS diagnosis and his flat feet, and the whole hip thing. He spent a lot of time with us, and really made The Boy feel at ease. My son was able to explain the problem very well and and to answer questions. The doctor never touched his head. In fact, he barely touched his feet!

The Doc explained the issue very well, basically that as he is growing, it is taking extra time for his ligaments and other bits to adapt -even with his ligamentous laxity. The flat feet and loose joints are not helping, and he is not properly aligned through the lower half of his body. So he needs orthotics. The doc also went into some detail about the best kind of shoes for him to wear and why, talking about stuff that -as an Autism mom, I know well- including proprioceptive feedback to the brain.

It will be a few weeks before the inserts are ready. In the meantime, I have to get rid of his beloved sneakers and get him used to his heavier boots. That will be interesting.

So as I write my kids are watching an Austin Powers movie, which up until now has been off limits to them (hello, echolalia). However I think if it worth the risk if the the boys will have more to talk about during the next podiatrist visit.

And I think Austin Powers is funny.

One Sick Daughter

Well, two weeks my daughter had strep throat. That was OK. We caught it quickly, started her on antibiotics and all was well with the world (after a few days, anyway).

Then last Sat, (day 9 of antibiotics) she crawls into my bed at 5am complaining of a sore throat. She is hot, so I give her some Tylenol and we both get some shuteye. Himself had to take her to the pediatrician that day because I happened to have electrodes on me head for yet another ambulatory EEG (more on that another time). So the Pediatrician is not sure if this is Son of Strep or if she has a virus on top of the strep. They put her on stronger antibiotics and tell us to watch her. If it is a virus we just have to ride it out.

So she is sick the whole long weekend with the scary high fevers where you think the thermometer is broken. We have to alternate Tylenol and Motrin to keep her fever down and cut the horse tablet antibiotics into four so they can be swallowed by a seven year-old. Sick as she was, even she asked what the doc was thinking with that one. She may be sick, but she's not thick (hey! Lookee here. A bumper sticker! "I may be sick but I'm not thick" I should start a OSM cafe press...).

Anyhoo, I stay in with her the whole long weekend, nursing her. On Monday she is still spiking a temp over 101. (At this point it is obviously a virus). On Tuesday I keep her home from school, -just in case, and she is jumping all over the place, obviously better. So I send her into school on Wednesday.

Just in time, really. Because Wednesday morning I feel like poo (different poo than usual, that is) and have a temp of 100.8.

Isn't motherhood grand!!!

Panic over. For now.

Today my son woke up as right as rain.

And speaking of precipitation: The promised dump of snow turned out to be the barest dusting.  My daughter was grumpy. She had been fully expecting a snow day and had made plans, despite my warning that I was getting her to school even if I have to hire a team of malamutes to transport her there.

I am not sure exactly what happened to my son yesterday, but naturally I will be keeping a close eye on him for the next few days. He has gained weight recently. I think he is gearing up for a growth spurt. I am thinking the extra weight has probably put more pressure on a few bits. Plus the inactivity of winter doesn't help. We EDS-ers need to keep our muscles strong.

...and our medicine cabinets fully stocked.

The Next Generation Part I

I was waiting for it to happen. That is why I dragged two healthy and non-hurting children to the rheumatologist this summer to be provisionally diagnosed with Ehlers-Danlos Syndrome. I knew that I would need the diagnosis before anything went seriously wrong. Because that was the only way that they (or I) would be taken seriously if I ended up in the ER with a child sporting a dislocated hip.

Don't worry. We haven't gone to the ER (yet). But today at dinner, my 9 year-old son told me "my spine just jumped to the left" His face looked a bit strange (which is what caught my attention) but he said it didn't hurt, and he could move. So OK. I decided to keep an eye on him. Later, when he stepped into the bath he started to cry and slap at his buttock saying his bones hurt inside. He couldn't raise his left leg without pain, so I guess he has pulled something out of alignment in his l-spine, hip or pelvis.

Poor kid. That hurts. I offered to take him to the emergency pediatrician, but he didn't want to have to sit in the car. (He seems to have a good instinct for when he needs to go to the hospital or dcotor. I have learned to generally trust him on this). So I gave him some Motrin and put him to bed. Hopefully, his body will realign. If not, I will take him to the ped or the ER tomorrow for his first official EDS-related event.

<sigh> (Though it's funny. I fully expected my daughter to be first).

Even though I  was waiting for this to happen. I never wanted it to happen. I hoped I was being over-cautious, and that that rule would apply.  You know the rule that if you prepare for something it will never happen, but if you throw caution to the wind you will be screwed?  That rule. I childishly thought the preparation would provide some insurance for them against ever needing it.

It didn't, but it will provide some insurance for them now that they do need it.

I am so darn glad I took them to the rheumy this summer.  I have the copies of the consult letter stating the provisional diagnosis. While I was helping my son tonight, in my mind, I was locating that document to bring with me should we need to go to the ER. Because the ER is not the place to have to explain that you think your in-serious-pain-child  has a genetic condition or a chronic diagnosis (they have heard all sorts of fairy stories and really don't want to have to take the time to verify which ones are true). The ER is the place where you haul out the documentation and the specialist's phone number and tell them to treat him appropriately NOW.  It saves everyone grief in the long run. Except perhaps the specialist who might be woken at 3am. But that's why they get the big bucks.

So tonight and tomorrow I will see how he does. If he still has pain or difficulty moving, I guess I will be taking my darlin boy to the ER in the snow tomorrow.

At least I am prepared.  (I have four-wheel drive)

This Is Why I Go To The City.

I went to see my "old" ("original" is probably a better word) neurologist just before the holidays.  She is Doctor #6, and I first started seeing her in 2005 when I had my first ever migraine headache, which lasted for three days and was gruesomely awful.

So she hasn't really been treating me for the last year or so since she decided that my seizures are not "real". She sees me once a month, takes note of how many fits I have had and sends me on my merry way. We both kind of know that we only see each other for money. Me to save avoid complications in my disability claims: Her because I am a guaranteed visit every month in which she does virtually no work.

So she surprised me in the last visit when I mentioned something and a lightbulb seemed to go off in her head: "Do you have migraines?" she asked. To which I replied "Turn to page 1 of my file.  Migraines are why I started coming here".  And THEN she said. "I wonder if your 'episodes' (as she likes to call them. And yes. I can hear the quotes) are related to migraines..." And then she went on to explain that there is a lot of new research coming out and that migraine may be more than just headaches. 

Well, I wish she had had that particular epiphany about 18 months ago. I might have been spared a lot of grief with incorrect medications -not to mentions all the accusations that I was crazy and the resulting fallout in my personal life.

I was very good. I kept calm and nodded calmly when she mentioned Topamax and how maybe we would try that in the New Year.

So I left her office with a lot of mixed feelings. I was kind of relieved that she had said almost exactly what #25 had said (except #25 said it better), because maybe this means I am finally on the right track.  However I was pretty pissed off that it had taken her two and a half years, several hospitalizations, medications and general drama to reach this particular conclusion -when my very first visit to her was about hideous migraine. I went to see #25, and it took a single visit and about 40 minutes for him to reach the same conclusion. OK. I know #25 had the benefit of all the history she (I) had gathered, but I was still angry.

I kept thinking "this is why I should go to the city". I have been kicking myself for not doing so originally. Back during the Hideous Migraine, I literally could not travel into the city to see my (any) doctor because the pain, nausea, photophobia and whatnot were so bad that I simply couldn't do it. But I was told by the ER to see a neurologist because a migraine lasting 3 days or more needs to be investigated. So I went to see this lady because she was local and recommended and I wasted two and a half years.  Maybe I will look back on all of this and say "there was a reason". But right now I am just angry.

Doctors are not created equal. They all carry their own values, baggage and prejudices, and indeed probably much of the values, baggage and prejudices of their trainers. The more I deal with doctors, -especially as I have rare and tricky conditions (for a cold or something it makes little difference), I really think that it is important to find a doctor or team whose values, baggage and prejudices roughly mesh with my own. I  have been trying to think of a way to screen for this.  If I come up with something, I will let you know.

...And Back Again

I realized that this "looking glass" analogy is all wrong. Because in actuality, there are lots of looking glasses. It's like you set up two mirrors opposite each other and you can then go through multiple layers of the reflections in either direction (but not see your reflection in all the other layers).  Its kind of more like that.  And right now I have no idea where I am in the maze and where "home" is. Or indeed if home is any better than "here". ...Wherever here is. It's all a bit surreal.

So -and you'll be proud of me- I took me courage in both hands and called Sloane Kettering. After a few wrong turns and dead ends, I finally got hold of the lady who makes appointments for the Sloan Kettering Incumbent Nutritional Specialist (SKINS). OK I'm sure that's not his official title, but it should be. It took some 'splaining to tell this poor lady (Maggie) me problem, which is basically that I have a collagen disorder and yet am apparently not able to absorb Vitamin C, which is essential for collagen production. Apparently this is all a bit unheard of.  I flummoxed the poor woman.

So the Maggie, being a sweet and kind lady, e-mailed the SKINS with a summary of me problem (God only knows what that looked like in the re-telling, but anyway) to see if he would see me.

He declined.  I was rejected by the SKINS. All that courage for nuthin. I was given no alternative either, but told to see an Ehlers-Danlos (EDS) specialist. Now I know the EDS people know little or nothing about this particular issue, except that it happens sometimes. They are mostly geneticists, so probably more interested in counting and cataloging people than in actually fixing them. I should introduce them to me ex-boyfriend from the previous post. Also, the nearest EDS specialist is at least 4 hours away and Sloane Kettering is commutable for me.

So. In fine Irish tradition I got angry.  I sent The Lads to Sloane Kettering to break that guy's legs.

No I didn't.

I Googled "nutritional physician" and found a guy near to me who sounds suitably strange.  I don't think I have ever chosen a doctor off the Internet before, but many of the 25 or so I chose by more traditional means didn't work out too well for me. So what the hey? Maybe I need to break way, way, WAY out of the box and see this alternative guy. He tests for heavy metals and such, which my good friend N (not the N I grew up with, but another one)  thinks I should rule out (and I agree).

And if I think he is a quack, I just won't go back. (hey! looky here! A slogan! whatfor I have no idea...)

Let's see what happens (I think that's a slogan too, but it's not mine). I will be seeing this Alternative Nutritional Guy (ANG?) at the end of this month.

I plan to update this blog a bit more regularly BTW. I was a bit lax over Christmas, but I do need to have a "job" again. I have been working on part II of the hypochondria piece, so you were not totally forgotten. I just made it look that way.