Chiari 1, speech and motor delay...is it linked?

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

Moderator: pmaxwell

Chiari 1, speech and motor delay...is it linked?

Postby mama3 » Fri Jan 04, 2008 11:58 pm

Our son is 18 months of age and was diagnosed with Chiari 1 malformation. He also has motor delay and severe speech delay. Wondering if anyone else has a child with similar symptoms and if you did the decompression surgery. He is obviously too young to know 100% of any other symptoms. Thanks for your help!
mama3
 
Posts: 4
Joined: Fri Jan 04, 2008 11:54 pm

Postby lalaswihart » Sat Jan 05, 2008 8:44 am

My son also has motor delay and speech delay and CM1, But my other child had no delays.
I think every Chiari Paitent is different and yes i think that my son delay is inpart to his Chiari, I have talk to the Dr and he feels it plays a part in it too.
We are fixing to Head back to our Dr. at TCI Jan 12 for a full work up on my son, I can keep you posted.
After my daughter decompresssion up at TCI she was a different kid, Her whole way of being changed, so in that i think if it can cause that it most likely can cause other things. Kids with Chiari I know all have some wierd stuff.

Good Luck and I will keep youLittle one in my prayers,
Laurie

8yr old with CM1/SM and elhers danlos
6 year old CM1
6 year old ???
4 year old ???
lalaswihart
 
Posts: 61
Joined: Wed May 23, 2007 12:32 pm

Postby angie7 » Sat Jan 05, 2008 1:53 pm

18 months is a little young for a "severe speech delay". My twins only had a very few words up until that age and they just took off. They are 21 months old now and speaking in 3-4 word sentences. Can you elaborate on what you mean by that?

Btw, my twins do not have CM and are not showing any signs either...
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Chiari 1, speech and motor delay...is it linked?

Postby mama3 » Sat Jan 05, 2008 3:23 pm

Let me clarify the "severe speech delay".

At 18 months of age, his expressive and receptive language is around a 3-6 month old. Our son DOES NOT BABBLE. The only sound he makes is "AHHH".

His speech therapists have him classified as 70-75% DELAYED.
mama3
 
Posts: 4
Joined: Fri Jan 04, 2008 11:54 pm

Postby angie7 » Sat Jan 05, 2008 8:48 pm

I see....Thanks for posting and answering my question. Like i said, my girls dont have it so I am not sure if there is a link, just wanted to understand. Hopefully he will catch up with therapy and what not. Is he due to have surgery for his CM anytime soon? What size is his herniation? Has he had a CINE MRI yet? Is he seeing a specialist in CM?
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
angie7
 
Posts: 1572
Joined: Fri May 25, 2007 8:29 pm
Location: Florida

Postby brianfsmom » Sun Jan 06, 2008 9:03 am

Hi

My son had a little bit of a speech issue early on, but he was also very sick with RSV and ear infections during his first year, so we attributed it to that. He used to say AHHH all the time, too. But I think he started to make word-like sounds around 12-13 months. Every child is different, but early intervention is great.

As for the motor skills, I would say absolutely, but we didn't understand it at the time. By the age of 3, he still couldn't jump with two feet off the ground. In fact, at age 9, he had difficulty hopping on one foot at the neurologist's office, when he was being diagnosed.

He has had the surgery, and has gotten better, but I imagine when this starts off at a young age and you don't discover it until years later, some damage is done and won't be corrected. But he has decent enough skills to hang in there. And he can hop now, if he wants to. :lol:

Good luck
brianfsmom
 
Posts: 186
Joined: Thu Jul 26, 2007 2:31 pm

delays

Postby neshoba » Tue Jan 29, 2008 8:43 pm

My son also has speech and developmental delays. He also has fine motor skill difficulties and used to have gross motor skill problems as well, but O/T has helped a lot with that. He has been going through P/T, O/T, speech and developmental therpaies since 13 months old. He is now 6 years old. He has also been diagnosed with sensory integration dysfunction and is suspected to have a higher functioning form of autism. You are not alone. I know how you feel and it is so hard to keep yourself together as a parent sometimes. I face challenges with my son almost daily. He tries so hard though. I am so proud of all of his accomplishments. Though his accomplishments may seem small to most, they are milestones to our family and we take great pride in what he has done so far. Bless his little heart, he tries so hard!
neshoba
 
Posts: 4
Joined: Tue Jan 29, 2008 9:41 am

Postby Lipper5 » Tue Jan 29, 2008 11:18 pm

My son was 18 months old when we found out he had Chiari 1 which is still debatable but he now has a farely large syrinx in his spinal cord. But he also has a speech delay he was tested at 18 months and was at a 12 month old level. He is now 22 months old and we have a speech therapist come in to our home once a week. He is up to about 15 words. No 2-3 word sentences. But is improving. He also has had a delay for walking and now shows weakness in his one leg and imbalance. So I really think it is all tied in together.
Lipper5
 
Posts: 80
Joined: Mon Jan 21, 2008 4:29 pm


Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 3 guests