Trying to find out if our son has Chiari malformation

[williswolf]

My wife and I have a seven month old son who is having some difficulties with
various functions.

It started a few months ago our family doctor recommended we see a
ophthalmologist because his eyes tend to shake.

The ophthalmologist thought he might have spasmus nutans which causes the eyes
to shake, the head to bob and tilt to one side. She ordered a MRI which we had a
few weeks ago.

When the doctor called us with the MRI results she told us that there are three
things going on. One is a loss of white matter in the brain. The other is that
either his brain is small or that the fluid is not flowing properly through the
ventricles which may be causing pressure on the brain. The last and most severe
is that the cerebellum is pressing down against the spinal cord.

We have an appointment with a pediatric neurosurgeon in a few weeks.

We have noticed some symptoms in our little one.

1. Shaky eyes (his eyes are misaligned)
2. poor neck support (weak neck muscles)
3. delayed development (He has only rolled over a few times and he is unable to
sit up on his on.)
4. problem with fine motor skills

We're not sure what to expect when we go to the neurosurgeon so any help would
be great. Thanks so much.

[hernandez7]

i am pretty new to this forum myself.and i joined cause of my daughter.she just turned 2 in april.i had a harder time getting the drs to do her mri,i ran through drs and kept asking more questions until i found the right dr to listen to me and help answer my questions.now my daughters is chiari malformation hernia low lying.i am not sure what the difference is from what your son is having to my daughters.but i do know she was and still is developmentally delayed.my daughter couldn't roll over till her 1st birthday.when she started walking with toys she was dragging her leg.7 months is still in average for sitting up.and alot of drs would tell me to quit comparing her.but with them already finding this problem i would definately be wanting more answers.now my daughters eyes don't shake but recently she has started where her eyes look as if shes rolling her eyes @ you.which worries me.but her white matter is more and there is fluid buidling up.so there r some differences but not to say its affecting our babies differently.i do wish you all the luck and i am happy to hear that you have good drs trying to help you get the answers you need.it is scary being the parent  worrying about our children.

[*Stormy*]

Hello and Welcome to the forum.

I am so sorry to hear about the problems your little one is facing..I have 3 kids of my own and I can't imagine how hard it must be.

It definitely sounds to me like it could be Chiari...by the symptoms and the fact that they said the cerebellum was pushing on the spinal cord.

I am glad to hear that you have a n appt with an NS...like Selma mentioned..hopefully he has some experience in this condition.

I truly hope that the Dr's get to the bottom of this soon for you..please keep us posted.

Carolyn

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry ur little guy is dealing with these issues.....and that u and ur wife are going thru this as well.it can be a very frustrating journey to get a dx....but we will help the best we can.

I am not up on how to identify chiari symptoms on a child of only 7 months...the eyes shaking sounds like  Nystagmus....many chiarians develop this  issue.

In addition to a MRI of the brain and cervical spine, a CINE MRI is a study of CSF flow... with chiari most times NS look at the size of herniation, but that is not as important as CSF flow or lack of flow and overcrowding.

Also the best thing I  can tell u is be sire u have a true chiari specialist...and one that is a peds chiari specialist.

We do have a thread with a list of drs, but it  does not indicate if they deal with adults or children on our list...we do strongly suggest u research ne and all drs u r interested in
seeing.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

We r happy to have u join ue here, but not for the reason u had to seek  us out.

"selma"