FYI Chiari decompression 7 years post op......

[Keggy]

To bad the old boards are gone. If anyone recalls, prior to my dd having her decompression surgery we didn't know the surgery would help the autistic symptoms but it was done because a chiari can disable (or worse) a child.

After the surgery, it was about 8 months later when she had a few days of being a typical child. Then she went back to her normal self. It happened a few times then not again for another year or so. It took a few years before it happened more regularly. Now it is all the time. She still has a CAP disorder. Had we known about that years ago we could have used an auditory trainer and maybe she would be even better now... who knows.

She will go to college, maybe even live on campus next year. She will probably be a professional of some sort, she is smart and very mature. To those who don't know her, when she was 5 there was no communication and the doctors told us she may never communicate.

No vitamins, no special diets, just speech therapy, an overprotective mother, and decompression surgery which changed everything for much better.

BTW If your child is 7 you should have the complete CAP eval, and if there is a CAP disorder put away your fears of what the trainer will do and do it, so you don't have to have regrets later.

Haven't updated my website (The Autism Chiari link) lately but its still there.
www.geocities.com/keggy11789

[JungleWoman]

Is CAP like an auditory processing disorder?

I remember when Aaron was really little, I'd say "Wow!" and he'd try to copy me but he'd suck in the word "wow" so it sounded really weird. But it was only that word. He didnt have many more words besides that and he eventually lost that one anyway)

We had his hearing tested in the soundproof box etc and it was CLEAR that the person helping us was pissed he couldnt cooperate for her to put things in his ears-- so I think she passed him because she didnt want to deal with him any longer or again. (She was a lovely person...:rolleyes: )

NOW, 3 years later, he probably still couldnt handle much in his ears, but he's actually starting to form words.

He sings constantly. We have figured out which songs he's singing-- his words arent clear but the tune is perfect.

So do you think it would be a good idea to have him tested again?

[Kristen (ColeysMom)]

Keggy, I think about this often, but am afraid to ask a doctor...Coley has had MRI's, but I don't want to sound like a crazy person looking for stuff, particularly when it's so controversial.

I mean god even Coley puking his brains out, dehydrating himself constantly and having bunny pellet poops for the majority of his infancy & toddlerhood wasn't enough for them to say...hmmmmmm...a$$holes!...it was hard enough to get them to consider a dietary source to his GROWTH issues, never mind his development...OMG - I'm still so mad about it...

His prematurity was always the excuse for his eating troubles, then suddenly it was his PDD-NOS....

Anyhow, any ideas on how I can check to see if this is something that may be present with Coley? Just to rule it out at least?

KJ

[Keggy]

Yes, CAP is Central Auditory Proccessing disorder. And yes have him tested again. Make sure he gets the comprehensive study that includes the ABR portion. Most regular hearing doctors do not do the more comprehensive study.

As for ruling out chiari and it being controversial.... that is just wrong. As far as I know it is only controversial when you talk on certain forums on the net, it shouldn't be controversial with a doctor. If your child has any swallowing issues, picky eater, gagging, reflux or vomiting.... even on occassion it should be rules out. If your child is shorter than normal, has drop attacks and any number of other symptoms which should include any developmental disability it should be ruled out. Your situation is easy, you aren't looking for a test just someone to look at the MRI and see if it is there. Most of us laypersons can see a chiari on an MRI when people put them on the net, its that obvious. Smaller compressions, which can be just as dangerous and even cause more blockage is more difficult.
The controversery seems to be whether chiari and autism are related. The fact that are kids have them often is not. Its sad when you see how many of our kids improve afterwards when they use the right surgeon.

[JungleWoman]

The regular doctor's office that accepts Aaron's insurance has been so unhelpful in this walk its not even funny.

When we started, the doctor that confirmed his autism gave us a brilliant "I dunno" when I asked her what we should do next, and then she walked out of the room.

The second doctor wanted to drug him up even before seeing him *he had a conference with me*

I dont even know where to look to find someone who will be helpful-- do I just demand it?

[peglem]

I always try to choose DOs- they seem more open to outside ideas. Here's how I found Allie's current, wonderful PCP after years and years of the "dunno" docs. We had an insurance change at work, so we had to choose a new provider. I picked a pediatric DO that worked at a pediatric multidoctor facility, close to my home. Had no idea whether they were good or not. My husband took my daughter in on a walk in appointment, because she was sick and I was working. On walk-ins, you get whoever is up for grabs that day. He came home all upset because this doc had asked him if he knew what caused Allie's autism and then when my husband said something about vaccines, he gave him a long talk about this new study that came out, debunking the vaccine theory. I was like, "uhuh, uhuh." Wait a minute....did he ask what CAUSED her autism? (she's 10 yo- no doctor has ever remotely insinuated that there might be a cause) So, I made an appointment to see that doctor. When I got there, I told him what had happened with my husband and let him know that I was tired of doctors blaming everything that happens to her on her autism and I'm looking for someone who will help me figure out what's happening. I had heard of PANDAS and told him I wanted her checked for strep-which there had recently been a case of in her class. He was AMAZED when the test came back + for strep and has been so great about looking up the stuff I tell him about and looking at my research when I bring it in and explaining everything w/o treating me like I'm just an over-worried mom. He sends me to specialists, just to check possibilities and rule stuff out or in. The last time I saw him, I was about ready to give up and he told me he would NOT give up-there's something wrong and we'll keep looking until we find it.

[Keggy]

Outside of using the doctors to get what tests I wanted I found them basically useless. We did have a neurologist (a few) a developmental ped, a regular ped and probably saw a number of specialists for ears, allergies etc not to mention our brain surgeon (who was useful).
I think the best way to find doctors who will be more inline with your needs is to get referals from other parents in the same boat. Your local SEPTA should be able to do that, or whatever groups you have going for you for your kids with special needs. I also got some good people from being at CSE's (as a parent member you meet everyone).
I would skip the "why did this happend?" and focus on "what can we do to fix it?"
Kristen... if you decide to post an mri on the net, post a side view of the head. The chiari is a protrusion of the hindbrain that dips below a certain ridge. That view can not tell you if there is a smaller herniation that is causing blockage, but its a start.