Baby with Chiari Malformation Type 1 7 mm diagnosis

[EmbraceLife]

Hi.  Frightened.  Mixed info.  Seen neurologist and got some answers but they said most of the symptoms baby is experiencing is not related to the Chiari.  They did refer us to see a neurosurgeon who they said may order additional testing.  Some symptoms include:  large head - benign macrocrania, language delays, "different" eating, sensory issues, slight developmental delays, many sleepless nights, congested all the time and headaches obvious from him hitting his head.

Some doctors have told us this is nothing to worry about, some have said monitor this only ... we're just confused.  Does this affect life span?  What does this do to my child?

The diagnosis of Chiari Malformation Type 1- 7 mm was from a MRI.

[selmaS]

  So sorry to hear the baby is worse......sending (((hugs)))) n prayers

[EmbraceLife]

Pending visit with neurosurgeon.  Hope to have more answers soon.  Baby is doing worse.

[EmbraceLife]

Thanks for your thoughtfulness and prayers.  Much appreciated.

[EmbraceLife]

Thanks for the information.  I appreciate it!

[linnielou232]

I just want to say my heart goes out to you and your family.  I can not inmagine having such a little one having all these problem's.  It must be so so hard watching your child go through this, but it's not just your child it is you also who is going through this.  I have no answer's for you.  Just wanted to let you know your not alone and I pray you will find some answer's for your little one.  I'll keep you and your family in my prayer's.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry u have a little one suffering.

It does sound like ur child may have  a few other issues...chiari can cause sleep issues and sleep apnea, so do have  that checked.

With the idiopathic hydrocephalus  that comes with the benign macrocrania may also bring with it other health issues that most with chiari are not faced with.

  The eating and sensory issues can be a factor in children with GERD....and that can be y there is congestion issues as well.Then there is sines issues we all tend to get too.

  I would suggest u find a  a Dr well experienced with chiari and macrocrania benign or not to help guide u.....

  U need to know if ur child has a CSF obstruction, a syrinx, tethered cord, and the other related conditions I mentioned above .

  Here is a list of our members Drs- this list is not a referral, it is only a means for u to start ur research Drs....see a few and compare them and go with ur gut as to whom u feel is best for ur child.

  http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

   Please keep us posted on ur child's progress and ur Dr search.

     "selma"