Upper GI stuff, and a responsive Dr

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My little guy has been having digestion issues for a long time. His pediatrician decided it was all in his head, prescribed antidepressants and said not to come back with any more complaints of that nature. Thankfully she'd already put through a referral to a pediatric gastroenterologist, or I should say THE pediatric gastroenterologist as there's only one anywhere near here and only a handful in our entire state.

It took forever to see him, but once we did he got him in for testing pretty quick. He found a condition called Eosinophilic Eosophagitis and treated it. It's chronic and my son will have to keep an eye on it all his life, but if treatment works it shouldn't be a problem. Most of my son's symptoms didn't improve, but follow up biopsies showed that he'd responded well to the treatment (steroids) so that's not what was causing his trouble. The Dr scared me by calling really late last night, which left me wondering what could be serious for a Dr to call after ten pm. Today I was finally able to talk to him, and he actually had more ideas about what could be causing my son's pain and other symptoms, and sent us straight to the hospital for an X-ray. It's just so refreshing to have a Dr who actually seems concerned for my son, and who has ideas beyond "It must be in his head, here are some antidepressants, that should shut him up." I'm not sure how serious the thing he's testing for is, the phone was breaking up so we could't talk much. He said something about there being medicine for it that he would probably just take for a while till the problem cleared up. So, cool, probably nothing chronic.

I'm thinking the whole "it's in his head" thing must be pretty common for autistics to deal with. I've had to deal with it lots, including first being told that my cystocele was my imagination because, "we all imagine we go to the bathroom more often than we do." Then, when I kept records, using a chart I found on the internet, the data was ignored and instead I was given a referral to a mental health professional and asked, "have you ever been diagnosed with OCD?"

And it's not just that isolated instance. My genuine health concerns have been ignored when I was developing diabetes, when my hair was all falling out ("it's normal for women's hair to start thinning in their forties" when I had big bald patches on my head), when my gall bladder became inflamed, when I was suffering the pain of fibromyalgia, and on and on.

And it's not just me. I've heard this same story over and over from many other adult autistics. And now from you with your spectrum child. Is this all due to something about the autistic way of presentation? Is it something different about our body language or a different way that we react to pain and other suffering or a different way we describe these things? What is it about autistic people that gets this kind of reaction from doctors over and over? I'm really curious to know (and to know if there's any way I can train myself to behave differently so that my health needs get met in a timely manner in the future.)

Really good questions, SparrowRose. I don't have any way to compare how often doctors disregard an unusual condition in an NT to an unusual condition in someone with AS, but I do suspect it is more difficult for someone with AS to give the doctor a clear picture of what is going on. All medicine is art more than science, and it is easy to forget that.

Kiley, I am so relieved to hear you are making progress, and am still thinking of you with respect to the issues you hinted at with your older child.

This is my one child who's not in the spectrum...probably, kinda sorta. Your comments still do apply though Sparrowrose as he presents as having PDD-NOS, it's just that he's outgrown so much of it. He's still not NT, just not exactly in the spectrum either....probably. He is my only child who was non verbal till 5/6, the other two are Aspies without speech delays.

The ped. gastro guy looked at his X-Rays this morning and actually had his nurse get back to me in a timely fashion. I'm going to get spoiled! Little Guy definitely has another digestive problem, there is a malfunction that is causing very severe constipation that goes beyond the usual common variety. We've been following the pediatricians instructions about how to treat previous issues with constipation and it turns out they are not enough, and she totally missed the underlying problem causing it.

The nurse has given me detailed instructions about a therapy to do, and then the Dr wants to see him ASAP. It's so refreshing to have a dr who is all about the child! He sees a lot of kids in the spectrum (waiting room is always full of 'em) and seems to treat them well from what I can see. When we first saw him Little Guy still had the PDD-NOS label attached, so as far as this Dr knows he is in the spectrum. He still listens to him and takes him seriously. He always asks him questions directly and lets him talk for himself. It shouldn't be such a rarity! Adults with ASDs shouldn't have such problems getting Drs to take them seriously either.

So, now the Zoloft prescribing Pediatrician has missed three actual medical problems causing my son's symptoms, EoE, Reflux, and this bowel muscle thing. The Zoloft was just to shut him up. Grrr, Mama Bear is not happy with her.

Sparrowrose,

I do think that there are superficial things that will cause some Drs to gloss over symptoms. First, if the person isn't well dressed and well spoken Drs will assume they are powerless to defend their rights. They probably don't think that through, but they will not feel as motivated to do all they can for someone who seems poor or uneducated. Teachers do this as well.

Also, someone in the spectrum may not express pain or discomfort in a way that catches the drs attention. They look for signs of distress to gauge how bad the symptoms are and if the Aspie/Autie isn't giving them the right clues they may misinterpret the severity of symptoms. This is an honest mistake born out of their ignorance of Aspie/Autie communication. Drs should get more training so they can make better assessements. Aspies/Auties can also learn to use other ways to communicate their symptoms. They can tell the Dr that they aren't very expressive but that the symptoms are severe. Some Aspies/Auties also do have a high pain threshold and may not feel some symptoms the same as an NT would. The doctor may not know this, but an Aspie/Autie can explain it if it applies to them. That will only work if the Dr is open minded and teachable, but it's worth a try. Drs should know without being told, but they don't so Aspies/Auties can try to make up for their lack...but it's not always going to work. Some Drs just don't care and won't because they don't think we're worth it. Maybe in those cases legal action would be helpful.

Yeah, I can so relate. I'm told the pain in my side is just due to a pinched nerve but I think it could be gallblader but since there was only one pollyup in the gallblader it's not anything serious. I get dizzy spells so bad whenever I move but since I was supposed to lie motionless for the EEG it didn't pick anything up. I had a dizzy spell an hour after the EEG but that's like telling me I can have something for free after I have already payed for it and they won't give me my money back. When I die because I coudn't take the dizzy spells anymore or because I keel over from a brain tumor or stroke, then they will be sorry.

My whole life I've had this weird reaction if my joints (particullary my knees and elbows) were touched if they were unbent. All the OT, PTs and doctors kept telling my mum it was in the skin and that brushing and joint compression could help. It was NOT in the skin and the brushing actualy hurt and made matters worse.

I think they didn't show my mum the proper way to do the joint compression; because when my mum tried to compress my head, it felt as if she were trying to smash concrete blocks on it. It made my sensory sensevities worse. Everyone kept telling my mum that the reaction to having unbent knees and elbows touched was just becuase of the autism. No one would listen to me when I said it felt as if my heart stopped and I was nanoseconds away from passing out if they were touched when they were unbent.

My chiropracter says it could be related to my scolosis (which was discovered when I was a teen despite an entire childhood of being told to stand straight when I could not). Having my elbows and knees "adjusted" (which is just a fancy term for being cracked or poped) hasn't cured the sensation but has made it easier to cope. Doctors can be so incompent about autism and AS.

i am pretty anti-doctor, but not anti-medicine. what ive found is that a lot of doctors simply do not trust, or respect, their patients enough to know their own bodies and to be educated about medicine. maybe they deal most often with morons who go running to the doctor for every little cough and niggle so they treat us all like that, i dunno. but when faced with someone who is educated or intelligent or who knows what is going on in their body, many doctors just automatically treat you like a 2 yr old. i do know many of them are motivated by self preservation and protecting themselves from possible malpractice suits.

ive checked my kids out of the hospital AMA multiple times. have had to fight with childrens hospital to give my son needed surgery for a potentially fatal condition, pyloric stenosis, when they thought he was too young/healthy to have it. my middle child was on a respirator for 12 days and in the nicu for 21 days after he had his lung punctured when they intubated him at birth, and that was never disclosed to me (found out when he was 2, his father had found out in the hospital and never told me). my own back injury was misdiagnosed for 3 years and i was told multiple times by the same doctor a) theres nothing wrong and b) it is going to hurt until it gets better (he never explained why it would hurt and needed to get better if nothing was wrong with me O.o). last fall i was condescendingly told that its common for male testicles to be lopsided, it took 3 doctors and a specialist before my youngest was finally diagnosed with an inguinal hernia.

needless to say, i do not trust doctors at all, and hospitals even less. they operate too little on evidence based medicine and too much on CYA medicine.

two months ago i had the school psych and social worker tell me 4 is too young to diagnose asperger's. i finally got their reports this week from my sons evals. psych says no asd, soc worker says asd. i think i am going to lump psychs and social workers in there with doctors and hospitals.