Friday, April 30, 2010

Yes, I did it...

.....I took Alex to a DAN! doctor (holds arms over head and ducks).

What is a DAN! doctor? Basically, a doctor who believes autism has a biological cause and can be treated biomedically - with special diets (usually the GF/CF diet), supplements, detoxification, and sometimes even chelation. This is the protocol endorsed by Jenny McCarthy. More info can be found here.

However, I didn't just go to "any" DAN! doctor. (And there are many questionable ones out there; some aren't even real doctors - they are nutritionists, chiropractors, etc.) I went to a developmental pediatrician who went to a real medical school (and a good one at that). She is familiar with autism from her background apart from the DAN! protocol. I had to wait 9 months for the appointment. I was impressed with her answers to my questions and by the questions she asked ME. I am a nurse and told her point blank I was skeptical of the "whole DAN! thing". She said she appreciated that and told me she had once been skeptical of it too and that there are some parts she is still skeptical about. She told me to "have an open mind mind but not so open your brain falls out." Perfect way to put it as far as I am concerened!

I have generally followed sites like this and this because the fact that autism can be treated or even reversed using special diets and supplements is just crazy, right?? I did decide to try the GF/CF diet with Alex last year and honestly didn't see much difference after 9 months. He seemed less out of it but the changes were not worth all the effort this diet requires. So I took him off it and he immediately started drinking tons of milk, specifically Carnation Instant Breakfast. My son turned into a zombie, I am not kidding. I couldn't get his attention, couldn't "reach" him unless I was yelling or tapping him. I took him off just casein (dairy) and he has been more alert ever since. And funny thing...his frequent diarrhea stopped. So we have been casein-free for about a year now. Did it "cure" him? No, but he is more alert and less apt to be in the bathroom with diarrhea and those are GOOD things even if it was achieved in a "wacky" way. I will take it! So, I thought, what if there IS something to this DAN! bullshit?? What if I went to a REAL doctor, a doctor who specializes in pediatrics who just so happens to practice this protocol? What could it hurt other than my wallet? (And God knows we have spent plenty on more conventional therapies like speech, OT, and RDI). I decided to make an appointment figuring I could always cancel it (and sort of assuming I would). Then I read this post by Goodfountain, a blog I have followed for some time. I admire her positive, yet realistic (and often funny) way of describing living with a child on the spectrum and her daughter seems a lot like Alex. Her point that there can be a "Middle Ground" hit home with me immediately. Because that's where I am. I will never consider chelating (in my opinion, that's some crazy shit) and my kids are fully vaccinated although I do forgo any vaccine with Thimerisol and most "optional" vaccines. However, I am willing to keep an open mind with some of this "stuff". Why not? It just may help. And it's not like ANYONE has all the answers, quite the opposite. It is becoming more and more apparent, in fact, that autism, like cancer, may manifest due to many factors. Who's to say nutritional deficiencies and/or difficulties with detoxification have no part in it? Kind of like 2 people who smoke for 30 years - one gets lung cancer at age 40 and one lives to be 90. Every BODY is different.

She did examine Alex in pretty much the same way all the other doctors have examined him but asked me additional questions about diet, rashes, GI symptoms, etc. We talked a while about Alex's propensity to lick metal things like bleachers, railings, etc and the fact that he has swallowed 3 coins. When I went back for the follow-up appointment, she told me she doesn't think Alex has autism or is even on the spectrum. She said she sees him sitting right at the edge of it (could I have picked a better title for my blog!!???) However, if he were to fall off the "fence", she feels he would fall off on the non-autistic side (meaning he does not have HFA, Asperger's or PDD-NOS).

She sees autistic-like symptoms but said he has too many strengths that kids on the spectrum simply do not have. Some examples were appropriate eye contact (although his is diminished, it was very socially appropriate), joint attention ("hey look at this!" said WITH eye contact), ability to transition with no difficulty, good pretend play skills (although generally diminished, he did play really well in her office and showed he is CAPABLE of good pretend play), took part in back and forth communication, displayed a sense of humor - basically she was thrilled to see he made appropriate 6-year-old boy jokes about "poop". She did see a lot of problems with language but felt the problems were not typical of autism, but rather another problem like an expressive language disorder. She saw a lot of sensory seeking and movement, decreased attention, etc.

Other doctors have told me this. The difference is they all diagnosed him with ADHD, which never seemed to fit. And I know many kids on the spectrum are first diagnosed with ADHD. This doctor said she doesn't think it is ADHD (I certainly don't). She thinks he has "significant" sensory processing disorder (sensory seeking), visual processing problems and an expressive/receptive language disorder. She admitted she has never seen a child with his language pattern/difficulty before. If you met Alex, you would notice immediately that his language is just "wrong". You are often left wondering "WHAT??!!" She told me his odd body movements are not true stimming, but are instead sensory seeking movement. I'm not sure of the difference, but whatever. She also noted his nasal stuffiness, dark circles under his eyes, and watery eyes, which quite frankly, he pretty much always has, not just during allergy season. I'm so used to it, I barely notice it anymore. Now I am wondering how I could be so blind! blood drawn this AM and need to send in some urine. From there, we decide on "treatment". I will never consider chelation, will always vaccinate, will not load him up with a million pills and supplements, but WILL keep an open mind and try what she suggests. I am a "middle-ground" mom.

Wednesday, April 21, 2010

Notes from DisneyWorld

Just got back from a weeklong trip to Disney World. We have been there several times, although Alex's meltdowns last time (before we really knew anything was "wrong" with him) had me doubting we would ever return.

They do a fantastic job with special needs, by the way. Alex is off milk; we did a trial of the GF/CF diet last year and noticed a difference with casein. At each meal the Chef came out and discussed what he could eat and even made some meals in a different way so he could eat them. They have Toffuti at every restraurant. I know they also have special passes for special needs kids to avoid long lines. Alex is not that severely affected and does not have trouble waiting in lines so we didn't pursue this. However, I have heard they do a really great job in that area.

My only complaint about Disney is some of the other "guests" (Disney's word for customers/visitors). My two youngest (Alex and Sarah) had a few difficult moments (AKA meltdowns). Alex for obvious reasons and Sarah for less obvious reasons although she definitely has some behavior issues that I think are related to her adoption or in this case the hunger she must have experienced in the orphanage. She is very concerned about where her next meal is coming from and gets positively frantic if she feels food is unavailable. Hence, she had a gigantic meltdown on the bus one day when she was hungry and I had no food. I mean, enormous. Screaming she hated me, hitting me, etc. Of course there were numerous gawkers on the bus who just couldn't refrain from staring and whispering behind their hands (like I don't know what they are saying). Looks of utter disgust and out and out staring apparently are completely appropriate. Alex got the same stares/whispers/disapproving glares when he had a meltdown after a long day in the park. (Alex did very well overall - he behaved pretty much typically for most of the trip, I am happy to say, except for a few incidents).

Here's my plea - don't stare or whisper when you see a child having a meltdown. And teach your kids not to stare, point, etc. Meltdowns look like tantrums but are different. You may not be able to tell the difference, but give the kid the benefit of the doubt if you see a child "tantruming". Tantrums are a way for a kid to get his way, a battle of wills. Meltdowns are the result of too much stimulation, or if the child is put into a position he/she is not equipped to deal with. Autism spectrum disorders, sensory processing disorder, ADHD, and adoption-related issues are not visible, but are just as real as cerebral palsy, Down's Syndrome or a broken leg. And it hurts just as much to have people gawking at your kid for something they really can't help. For the record, I am not perfect with this either. I sometimes get super-angry at my kids even when I know they are incapable of controlling themselves and I definitely get embarrassed. And sometimes I look at a kid I don't know and think "what a brat" But then I try to give them the benefit of the doubt. Because you just never know what the whole story may be. I would love to tell these parents with their "perfect" kids that I, too, could pat myself on the back and congratulate myself on how well-behaved my kids are if my kids were all typically-developing kids. My older two kids sometimes get embarrassed by the meltdowns and I don't blame them. But I hope they are also learning not to stare, point, whisper, or judge.