So...this whole thing has been eating me...

[LIZARD]

...since the autism conference in July, and I got some answers from a neuro researcher, Dr. Martha Herbert: http://dem0nmac.mgh.harvard.edu/ref/herbert.html. She said the whole thing about any connection between Chiari and autism intrigues her and her team, and they're studying it now. :) It's left me wondering...

If you have a child dx'ed with ACM and autism, and s/he has no serious physically debilitating symptoms, what would a nsg have to hear to consider that surgery could be (at least part of) the answer to helping the child have more potential for independence? Would the risks possibly outweigh the benefits? Who would you ask?

I am devouring any scrap of info I can find on the neuro end of the research findings, particularly any specific info re the cerebellum's involvement. Anything any of you have to contribute is deeply appreciated.


Thanks!

LIZARD :)

[razzle51]

Hey great to be back . Long time no see. Roz:)

[LIZARD]

Hey, Roz! :)

Great to "see" you here. How ya been??


LIZARD :)

[razzle51]

Oh doing so so . Catch ya later . Byeeeeeeeeeeeeeeee

[IsItMe]

Wow - wish I would have known about the conference. I'm completely interested in finding out and'/or helping them find the relationship between autism and acm. Keep me posted please Lizard. And glad this site is back up!!

[LIZARD]

Hey, IsItMe!! :D How ya been??

I certainly will keep y'all up to date on anything I hear about this. The conference materials are/will be available at www.autism-society.org. I'm probably gonna get 'em for my birthday next month. :)


LIZARD :)

[krashleen]

Liz, you probably already knew this, but what about the gluten/autism connection? I am just wondering...
so good to see everyone here back again.

[LIZARD]

Liz, you probably already knew this, but what about the gluten/autism connection?

Believe me...I have given it a lot of thought and research, and I think 1) Drew would starve, because he utterly refuses to stop eating breaded fish filets; 2) he's such a picky eater that he'd starve because he'd refuse to eat most of the things I'd have to feed him; 3) he has none of the "leaky gut" signs that so many of the kids who benefit from GF/CF regimens have.

Could I be wrong? Of course. :D However, I can't escape the very real possibility (likelihood, I think) that the ACM has something to do with it. Does it warrant surgery? I honestly don't know, and of course, I know there are risks, but I'm also afraid that he could benefit greatly from it and we'd never know if we don't pursue it. Talk about stuck. :(

LIZARD :o

[kdagain]

Hi, this is not really a direct response to your question, but my son has Asperger Syndrome. He also has a large intraventricular arachnoid cyst. Many of his AS symptoms lessened (did not go away) when he had surgery to reduce the pressure on his brain from the cyst.

I remember reading about 10 years ago when I was investigating AS, that the cerebellum DID have a correlation with AS. That was the only physical brain characteristic noted at that time with possible linkage. From what I remember, there were fewer gyri/sulci in the cerebellum associated with AS. If I come across that link again, I will post it.

[LIZARD]

Hey, Soj. :)

Thanks for your post. I just read your incredible story, too! I'm so sorry for all you have endured, my friend. :( I wish I had some good suggestions for you, but I know some folks who are (or will be) here who can give you some specific info that should help.

Re the cerebellum and autism....I have run across considerable info re sulci and "purkinje" cells. The Purkinje cells are apparently smaller in size and number in many kids and adults with autism, which leads me to believe that if the cerebellar tonsils are herniated, it makes sense that autism can result, but thus far, the opinions from 2 nsgs (mine and TCI) are that surgery isn't necessary because he doesn't have any indications of any prominent classic symptoms, such as the head/neck pain, vision issues (he's 20/20, so unlike everyone else in this house! :rolleyes: ), balance, gait, impeded CSF flow, etc. I'm not trying to insist on surgery, by any means. I just wonder if there is any possibility that it could help him, as I know others have seen a significant lessening of symptoms of autism, too.

Thanks for your input. Be well, and I'll let y'all know what I find out.


LIZARD :)

[krashleen]

Liz, there is a post on the ASAP board (believe it originally came from WACMA) where Dr B from TCI talks specifically about the autism and CM relationship and how they were even surprised at how much the symptoms from autism lessened.
I'll go fetch it for you and copy and paste it here, I don't think there is an issue with that.

I totally understand the finicky eater, I raised one, and now he eats almost everything he wouldn't touch when younger.

brb

[krashleen]

HHere is a message from Dr. Bolognese about Autism and Chiari.

Anyway, on to Dr. B's note, written while on vacation back in his native Italy:


Quote:
--------------------------------------------------------------------------------
While in Rome, enjoying La Dolce Vita, I noticed a string of messages about autism and CMI on this site (I know; like you I am a message board addict). Because of the little amount of information out there about this topic, I felt compelled to write this quick post for your consumption.

CMI has an effect on intellectual and emotional performance.

Everybody here at WACMA knows about the "brain fog", which is the inability to focus, multitask, and effectively retain short term memory information. Two theories behind this problem. Either the high CSF pressure caused by CMI "intoxicates" the thinking part of brain (i.e. the cerebellar hemispheres,
which are far away from the posterior fossa), or the CMI interferes with the cerebellar function of traffic controlling (imagine the effects of a drunk air traffic controller in charge of the incoming and outgoing flights at a major airport...). "Brain fog" is an intelectual thing.

The emotional disturbances of CMI are a less known entity. ADD (attention deficit disorder) and ADHD (attention deficit and hyperactivity disorder) are very common in CMI. In many patients they are caused by CMI (= they disappear after surgery), in others are aggravated by CMI (= they improve
after surgery). ADHD tends to be more common in CMI children.

Depression is a "side effect" of CMI. Your CMI is acting up. your symptoms are intefering with your activities, you life becomes a mess, and as a consequence you become depressed (if you are happy after all that, there is
something wrong with you).

Autism is a more complicated problem. Autism is not caused by CMI, but symptomatic CMI can significantly aggravate autistic patients. At this point I have to elaborate a bit.

1. CMI is asymptomatic in several individuals;
2. when it becomes symptomatic, CMI stops beign a curious anatomical variant (like Dumbo ears, or my nose), and becomes a medical problem, interfering with your quality of life;
3. occipital pressure headache is the most common symptom in CMI patients who reach medical attention;
4. if you were a normal non-CMI person, and you had a strong headache, you would be obviously cranky;
5. autistic children cannot tell you how they feel, since they are blocked inside their own world;
6. if they are sick (flu, pneumonia, or else) or stressed, autistic children can have temporary worsening of their autistic symptoms;
7. CMI headaches can aggravate autistic symptoms, in the same way;
8. since we cannot ask autistic children if they are experiencing an occipital pressure headache, specialists rely on the detection of the "headache behaviour" (if the child holds is head, bangs his head, hits his head, or stops doing his/her activities and isolates in a corner, exactly like a sick cat would do);
9. if "headache behviour" is present, the child has a very good shot at a clinical improvement of the autistic symtpoms, after the surgical correction of the CMI.

That said, a very few neurologists, neurosurgeons, and CMI specialist are aware of this problem. The vast majority of neuro specialists will disregard the issue, on the grounds of the assumption that the CMI does not cause autism.

We have treated a pretty large number of autistic/CMI children at TCI, with results that surprised us. The only other neurosurgical group with experience in this field (that we know of, and CMI is a little world after all) are the pediartic neurosurgeons from Columbia University in NY; their numbers are smaller, the results comparable.

OK. The deed is done. Now I can go back strolling in the Roman streets, eating gelati's, and sipping espressos.


Paolo Bolognese
The Chiari Institute
(trying to open a TCI branch in Rome, next to the Coliseumere is the info that you might be looking for,


EDIT-took out some personal info that I didn't get permission to post.

[LIZARD]

Thanks so much for this, hon'. :)

I read through it, and the one big question I have is: He said that they would indicate they're experiencing occipital head pain, but a lot of kids and adults with autism have exceptionally high tolerence to pain, so we could very well not know whether they have it or not.

I just don't know...:( It continues to bother me a lot that we don't know what nsgs would have to see in patients with autism and ACM I because, as far as I can tell, there's a lot about autism that they still don't understand. Far's I'm concerned, we're back to Square One. :(


LIZARD

[krashleen]

It does seem that way, I wonder if there was MRI evidence of CM for patients with autism? It doesn't seem clear, and that they are surprised by the results they are getting with autism patients.

Hang in there, a brain is a difficult thing to treat.

[IsItMe]

Krashleen - we tried taking my son off gluten and didn't see any improvement. However, We (the entire family) started drinking 1% milk and saw a huge improvement in my sons behaviour as well as my memory skills improved. I know it doesn't work for everyone but have you tried it?:)

[krashleen]

Hi IsItMe, I have been trying to adjust to gluten/wheat free living for a couple of years, and I always fall off the diet. I drink rice milk, and have almost eliminated all dairy.
I have many allergies, including wheat/gluten/dairy/eggs/egg white..and some others that I don't worry about because I don't eat them!

[Mayzoo]

Hey Lizzard--is your NSG Dr. Frim? I can't remember. He emphasized with us a great deal that the "autistic traits" (my daughter fits a text book definitiion of high functioning....but we don't know how many sx are related to 1. acm or 2. Arachnoid Cyst 3. other) could be directly related to ACM, and he has seen many cases with at least partial resolution of autistic sx with the decompression.

However, he also believes the two diagnosis can exhist independently of each other.

As to what to "tell" a nsg that would convience them autistic symptoms alone are enough to merit surgery--I would begin a journel of how these sx actually impact his life. How they reduce his "quality of life," and how they will affect his ability to "live a productive adult life". Those two phrases, backed with journaling of daily specific examples, would be the only evidence I can think of. I know these two catch phrases, so to speak, are becoming a driving force in the medical field---much like 20 years ago you never heard of "pain managment"---but now it is a major reality that gets doctors attention.

Journel for Drew the triggering events, his reactions, how they impact the quality of his life now, how you felt it could have gone "better", how you feel this trigger will manifest itself in his adult life, and how you feel this will be a detracting issue to his chances of normalacy in his adulthood.

Sorry, but I can't offer a lot more right now. If I think of more I will get back here.