Autism Watch: 2007

Archive for the ‘Health’ Category

I just realized I didn’t share this with you, this gem, this dentastic visit to the dentist for a filling. It’s an epic story, from start to finish.

Start: I pick him up from school, he’s on a tear and starts to cry within seconds because the teacher reprimanded for something that she’d seen while outside of school on a weekend. (I am biting my tongue from sharing my feelings on that, it would take a whole new blog entry.) I promise him we’ll handle it, put on a calm face and secretly think that this may have seriously messed up our dental appointment.

We make the 25-minute drive in pouring rain, with BB talking to Dad on the phone about the injustices of his day. Dad agrees with me that we need to fix it, but top priority was relaxing him to get through the dentist appointment. Ha. I’ll get right on that.

He gets in the chair. Whew, we’re psyched up and ready to go. Oops, 9-year-old girl across the hallway had a meltdown and had to leave — now she’s back and they are going to finish her work. Dentist leaves our room, chair comes back up straight and out comes the DSi XL to keep him busy. Ten minutes later, dentist is back. BB is nervous. I’ll spare the details, but the dentist’s hand got novocained. It was bitten. The mechanical tray over BB’s lap went flying. BB had to be caught before he fell out of the chair onto the floor. Five of us were in the room. Door was shut. Door was opened. Dentist tried three times before he admitted defeat. I was sent on my merry way with a puffy-faced, red-eyed child apologizing profusely for not being able to stay still in the chair due to having a bad day at school. I did the same, while wondering if indeed we could return. Would their patience be any better next time? Did they really want him to return? Would the dentist wear leather gloves??

Finish: It.was.a.disaster. Dad seems to think he can get him to go back to the same dentist and try once again. Hmmph. I’m not going again. I think we need to try a special needs dentist about an hour away. We’re undecided right now, but we will be making a decision by Monday — the filling has to be done soon, but we have a few days to be sure we don’t put him through anything else unnecessarily.

Special needs dentists are a rare breed, and if you are one, kudos. I’ll try to warn you if my son bites, but I imagine it won’t be your first time. Or at least I hope. I’ve had enough of being the unique situation.

Advertisements

First, I don’t really think that, but I was told again yesterday that if I didn’t try xxx on BB (for his autism) then I was a sheeple going along with the general public, just because my doctor said so. Well, I’ll be! Baaaaa-aaaaa. 😉

After all these years in the autism community, I still get shocked at this mentality, the “I research, I talk about it, therefore  I am more educated than you” mentality. We’ve probably all run into that here and there. (Or am I just lucky?)

So many things are wrong with this picture. I won’t list them, because I have Valentine’s day cookies in the oven and quite honestly, don’t want to devote to much (more) time to nonsense, but the holier-than-thou attitude doesn’t fly well with me. I don’t go around tooting my own horn, telling you how many hours every day I research autism, how much I advocate for autism, or how many people I’ve helped; what’s the point of that? So just because I don’t tell you about it doesn’t mean that I don’t do it. So when you tell me that the new headache medicine I’m trying for BB is wrong simply because it’s not biomedical and instead is a prescription from the pharmaceutical industry given to me by a ‘drug-pushing’ doctor? You’re wrong.

Somehow this society has confused caring for another and looking out for their best interest with judgmental nosey-ness. There’s a way to share your feelings without putting down those who don’t agree or choose another path. You aren’t ‘better’ than someone, nor is your child necessarily any better off, so get off your high horse.

Just one of those days where I wonder why (not) the autism community can’t do something with the power of numbers: we can’t even get along with ourselves without inflicting the same judgment and nastiness the rest of the world inflicts on us simply because they don’t (choose to) understand autism.

Until that is fixed, we’re not going to make the change we want.

And with that, I’m off to get another tray of non-gluten free cookies out of the oven. (That didn’t work on my child, which makes me a pariah in some circles, imagine that. Autism isn’t bad enough, but because a remedy for only approximately 60% of the community doesn’t work for us, we’re fair game for questioning on that, as in ‘are you sure you did it right?’ It’s not rocket science, folks. But I will stop now.)

Happy Valentine’s day to all!

Is there such a thing? Because I feel like I’m getting it. Well, maybe not, because the more I learn, the more I realize I don’t know. But I do know I don’t have a DAN within reach and it’s up to me…and the autism community that thankfully shares information on a regular basis. But if I could get a PhD based on time, count me in.

Little guy’s having his headaches, some intestinal issues, hyperactivity and less attention/focusing in school. He also still won’t sleep without melatonin. Time for a change.

After a lot more research, we’ve decided to go with Theanine Serene. Living where we do, we had to order it so it won’t be here for a few days, but I’m anxious to try it.

Then what’s next? It may be time for another round of anti-yeast protocol. We want to see if the theanine (which also includes magnesium) makes enough of a difference. Too many supplements and additives and BB catches on to what we’re doing and becomes resistant. Not that I blame him.

Autism research can be a full-time job, and I work on keeping the balance between finding what I can do to help BB, and just being BB’s mom. Sometimes he needs that more than anything else.

Mommy, I need a pain reliever. It’s at a level 7.8.

That’s what I heard last night around 8pm. Apparently the school nurse also heard it around 1pm.

I heard it the afternoon before. The rating is a little different each time, but 7.8 got my attention.

Two years ago, my son went to his neurologist for a follow-up, where I mentioned his frequent headaches. I get migraines, as does my 16-year-old daughter. (Can I just say how miserable it is watching your child going through insufferable head pain that you know kills you just to have your eyes open?) The MRI was slightly abnormal, but there was no visible cause for headaches, so they were determined to be migraines based on the presentation and other tests he ran. He was prescribed a medication to take daily, but after waiting two days for the prescription to be filled (it had to be ordered) and seeing him not have another headache, we decided to not risk the side-effects. Fast forward to now, he’s still not on medication but he’ll go a few weeks at a time with frequent headaches, then a few weeks of pain-free time.

He goes back to the neurologist on Tuesday, where we’ll seek treatment as well as a note for school attendance. To me, it’s pretty obvious that a child diagnosed with autism and documentable migraines would miss some school, but I am not on the state school board.

Anyway….the wasting of the doctor’s time aside, does your child with autism experience headaches? Migraines? What do you do?

I’ve done a little research. I found this:

Reversing Autism: The Story Behind Feast Without Yeast, an article about a book that appears to detail a dietary change that will reduce headaches

Biomedical Autism Intervention

Autism Comorbidities, part 2 of a blog series about migraines and autism

Not a lot of mainstream information available, so I’m interested in others’ experiences as well as any references anyone may have. I want to be well-armed for the appointment, as I need to find a way to keep barnacle boy pain-free. He’s got enough to deal with already.


Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates

Error: Twitter did not respond. Please wait a few minutes and refresh this page.


Advertisements