ASD and hemangioma
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| Mon, 12-26-2005 - 8:34pm |
As I've been reading more about ASD, something that occurs to me is that the difficulties with digestion, sugar, etc. that seem to plague ASD kids just don't seem to apply to my daughter at all. Sylvia has always been able to eat pretty much anything. She's picky, as most preschoolers are, but she eats all different textures, flavors, has never had a problem with milk or wheat, has never had constipation/diarrhea/tummy troubles of any kind. We tend to avoid most processed foods in our house anyway, and don't eat tons of sugar, but when she *does* get processed foods and/or sugar (such as this past week, in abundance!), while I notice an immediate sugar rush, I don't see an increase in autistic behaviors, etc.
However, when we were evaluated by the dev ped, one thing he picked up on, that really surprised me, was the hemangioma she has on her nose. A hemangioma is a birthmark -- a swelling of blood vessels etc. -- that usually isn't noticeable at birth but can grow dramatically. They can get VERY large and can be somewhat debilitating if they appear on the mouth or near the eye etc. Sylvia's is on the side of her nose. When she was born it just looked like a tiny red spot, but by the time she was 4 months old it had grown so that it really deformed her nose -- plus it was starting to scab over and bleed, and when it bled it BLED. It didn't hurt her at all, but it was like the worst nosebleed you can imagine -- it would literally spurt out like a fountain. I remember getting her up from her nap once and seeing blood EVERYWHERE: in her crib, on the walls, on her pajamas, covering her face... and she was just sitting there in the middle of all that blood, grinning at me. ANYWAY -- starting around 6 months we had her on a course of Prednisone to shrink the hemangioma, and between the ages of 1 - 2.5 we gave her some laser treatments to try to break the hemangioma up. We did it to eliminate the possibility of bleeding, which we thought would get more and more traumatic for her as she got older. At this point all that remains is a prominent vein down one side of her nose, plus you can see that her nose is a bit lopsided with some extra tissue on that one side. But we're not prepared to do anything more dramatic to correct it (which would basically require surgery) until she's old enough to want it done for herself.
The reason I'm going in to all this is because the dev ped thought that Sylvia might actually have a hemangioma in her brain as well, that might be the cause of her ASD. It's not uncommon for kids who have one hemangioma to have another, but I didn't realize they could occur within the body as well. It would explain why she has so many ASD symptoms yet doesn't have many other digestive symptoms that people often associate with ASD kids. The dev ped wanted to give her an MRI to find out for sure, but DH and I really don't want to go this route... The ped said that it wouldn't affect Sylvia's prognosis or treatment, so there really wouldn't be anything to be gained by giving her an MRI other than saying, "Oh, so THAT'S why she is the way she is." It just doesn't seem worth it to us, since we'd have to put her under general anaesthesia for the MRI. However, it's interesting to think about -- especially since hemangiomas do tend to grow up until age 2-5 and then gradually start to recede and shrink. Would that correspond to changes in her behavior?
I was just wondering if any of you who've done more research than me, who have more experience and who've attended more conferences etc. have heard anything about this kind of thing...
Jennifer

NF or neurofibromitosis (sp?) is the closest thing I have ever heard to that. These kids will have cafe au lait spots on numerous parts of thier body and sometimes it can affect them neurologically with symptoms similar to autism. I have not heard what you have mentioned but I suppose it could happen.
However, I will also say that not all kids with autism have digestive symptoms and many don't have obvious digestive symtpoms. Just because she doesn't, doesn't mean it isn't autism. The digestive is just one theory of the cause of autism. Basically the idea is that autism seems to have a genetic base and then it is aggravated by some environmental factor. Food and such are only one of these.
Also, even a child who doesn't have obvious digestive signs may be affected by how they metabolize foods. LR is much better at this than I am but my kids never had obvious digestive problems either.
In fact, Cait has partial seizures and an very odd EEG with abnormalities in a language center of the brain. It appears to be the main cause of her autism symptoms but she is still autistic. And with the other members of the family I know that it is a genetic autism. Mike has the diabetic type symptoms more and is more affected by diet but it doesn't hurt Cait either.
Renee
I think I wasn't expressing myself very well... I wasn't saying that I thought Sylvia didn't have autism. I do think that, with the wide variety of kids on the spectrum, there are probably many different causes of autism. The fact that some kids are so clearly helped by dietary changes suggests that at least some of them have digestive issues that at the very least exacerbate, if not cause, their autistic symptoms. But clearly not all autistic kids respond to dietary changes. So it's just interesting to me how different all these kids are.
I guess my main point was that Sylvia's dev ped seemed to think that there was a physical issue in her brain causing her ASD symptoms -- if not a hemangioma than a congenital defect of some kind. Whereas most parents of autistic kids I've recently talked to believe that their kids have difficulties on more of a chemical or hormonal level: how they respond to certain chemicals or proteins, etc. It would make sense that Sylvia's autism is caused by something more physical in nature, because she's never seemed to respond to dietary changes or have difficulties processing different foods. I really was just curious if anyone else had read/heard about this kind of thing, mainly because, as always, I'm looking for ways to help my daughter, as we all are! Plus, I was sort of suspicious that the dev ped was looking at Sylvia as kind of a "case study," which is why he's pushing so hard for the MRI... And I was just confused by his suggestion that there might be a hemangioma in her brain, since a) I've never heard of anything like that in what I've read about autism, and b) I've never heard of anything like that in what I've read about hemangiomas. So I was just hoping to hear from some folks who might have more/better information than I do...
Jennifer
Ahhh, ok. Well then in that case, not that specifically, but like I said my daughter has a very odd EEG which shows abnormalities in teh left temporal lobe which is a/the (?) language center of the brain. I don't know why she has odd readings there. She always has had them. We never did an MRI. I suppose I would if there was a few of something like a tumor that would have to be operated on or if it would change treatment, otherwise, nope I wouldn't.
But also, I still want to say that some kids do have a hard time with dietary stuff but it isn't as obvious. I would love to be able to explain why I have 2 ASD kids and one seems to have a definite neurological cause while the other is more obviously affected by diet. Go figure.
Someday this will all make sense.
Renee
>>Someday this will all make sense.<<
We can only hope, lol! Thanks for your responses... It's just so difficult, the not knowing why, or what to do to help. And I have to admit being more than a little freaked out by the idea of something inside my daughter's brain, you know? Not that there's a thing we can do about it, other than accept the way thing are and move on from here...
Jennifer