Chiari Malformation and developmental delays

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Chiari Malformation and developmental delays

Postby noahsmommy » Mon Jun 22, 2009 8:06 pm

I have had an epiphany today...I've categorized my son's condition as one issue and I have avoided the fact in its entirety that my son's cm diagnosis is completely separate from the fact that he is moderately mentally retarded/severely developmentally delayed/cognitive deficit (Why the constant name change?) I have put the two together since he was diagnosed at age one, somehow rationalizing that his delays were caused by the chiari. I've never been able to relate to informational guides for the chiari because I have been too busy trying to find something that talked about developmental delays and how to liken the two.

If I had kept the two separate this entire time (he is now 10), I would have been out of the haze I have been in for a decade.

I guess my question is this...Are there any more of you out there dealing with the two combined? I always hear of the chronic pain and suffering of chiari patients. The desperate desire to make the hurting stop. My son has such a HIGH pain tolerance that it is impossible to even tell what hurts most of the time. He is unable to communicate with me and tell me where his pain is. I am always playing a guessing game and I am left to look for signs of discomfort without really knowing what is truly bothering him.

Filling out information at a clinic is so grueling, because I am left to my devices to gauge what is happening with his little body. Although I am very in tune with his needs, I would still love to be able to help him better. I'm just hoping there is someone out there who can offer up some advice on this. Any assistance is gold to me. Thanks so much for reading -Amanda

*One last thought...Noah has no other condition other than the chiari I. He had the decompression surgery two years ago.
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Re: Chiari Malformation and developmental delays

Postby Sara » Tue Jun 23, 2009 10:55 am

Little research has been done about the cognitive effects of Chiari but we certainly hear a lot of anectdotal stories from parents who say their children's speech delays or concentration improved with a decompression. ASAP has just sponsored a research study looking at cognitive effects in patients diagnosed with Chiari but it will be a year before it is completed. Read more details here: http://www.asap.org/09_research.html
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Re: Chiari Malformation and developmental delays

Postby Hope143 » Tue Jun 23, 2009 12:52 pm

My son was diagnosed with CM at 14. He is straight A honor student. The first thing we noticed when he first got sick at 12, was that his math
grades started to slip. This became a real challenge for us. The first one to notice was his math teacher. She thought Alex had a photographic memory and we did too. He rarely needed to study and was one of those kids that could quote you verbatim. It used to bite me in the a_s, because I couldn't say too much around him. At 12 he became really ill and was dx with Lymes disease, but here is the kicker, he probably had chiari too but no one caught it then because the symptoms overlap with lymes, so we just treated the one illness, and his MDs had no idea there was so much more going on.

Cognitively though he was aware something in his brain was not right. He could not remember formulas and words were lost in a jumble of brain fog. His speech slurred so badly we couldn't understand him. He was embarrassed and s=didn't understand what was happening.

Columbia University is doing a study on cognition and Lymes (they've received a $30million dollar grant), it would be great if they could do a study on cognition and chiari and even sm.

I had my son classified with a 504 plan so that he could get the extra help he needs now. He is so frustrated because he sees the difference from
before the chiari and lymes and now. With the decompression there were improvements but it isn't back to the way he was before everything shattered at 12. He was eloquent and spoke with such grace and had a really sharp mind. His teacher's were always commenting on his quick wit and smarts. Originally I did not want him labeled as having a handicap because we do not believe in labels. However, in speaking to professionals and children's advocates, I quickly changed my mind. If he slips through the cracks, it would be much worse for him. At least now he can get the help he needs. And he realizes this too. The physical help is also a blessing because sometimes his hands hurt so bad that he can't write so he can copy other childrens notes and then type his own version on the computer.

I hope you can get your son the help he needs. Turn to your child study team or your local community groups for where to find help and support in your area. We've had months where his teacher's come to our house after school to help him. He has continued to maintain straight A's and our goal is to eventually get him into Princeton (which has been his dream since he was 5) if he is still up to the challenge.

Best wishes to you in finding the answers fro your 10 year old.
To support and guide my Magnificent Teen to reach his highest potential and overcome his health challenges!
28mm CM, 13mm syrinx, TSC, lymes, decompression, crainectomy, laminectomy, TC untethering in Barcelona, Spain. Better days ahead!
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Re: Chiari Malformation and developmental delays

Postby noahsmommy » Tue Jun 23, 2009 2:47 pm

Thanks so much for your replies! I am absolutely loving this discussion board. It is giving me so much information. I'm so sorry to hear about your son and all of the problems that he is having. I called the Spalding Rehab Hospital in Aurora, CO. They have been given a grant from ASAP to fund research of cognitive function (brain fog) among individuals with or without syringomyelia before decompression surgery as compared to post surgery. I left Dr. Chicota a message giving her a brief synopsis of my son's condition. I'm hoping she calls me back and that he could potentially be involved in the study. I remain hopeful that this mystery is solved someday!
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Re: Chiari Malformation and developmental delays

Postby RenaissanceMaiden » Sat Jun 27, 2009 8:34 pm

Thank you so much for posting this. I am so glad to hear that I'm not the only one
out here. My daughter was in Early Childhood Special Education for 2
years because of her speech delay. I am so glad for the teachers there because
if they hadn't suggested to me that my daughter have an MRI done because of the
seizures she had before she turned 2, I never would have known that she had the
malformation. She has also been diagnosed with ADD, which makes it even harder
to understand her. I am so thankful to know I'm not alone in this. My daughter, now
6 and going into 1st grade, is going to have another MRI done on Monday morning
because of balance issues and a tremor that makes her fine motor skills nearly impossible.
Thank you so much for this post.
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Re: Chiari Malformation and developmental delays

Postby noahsmommy » Tue Jan 26, 2010 10:30 am

Hi, Renaissance Maiden- how did the MRI go? I haven't been on here in forever, but I need to get back and connect with others!


Amanda
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