Mild chiari type 1 malformation (8mm) in 8 month old baby

[ConcernedintheMidsouth]

Our baby is almost 3 years old. At almost 8 months old we were told our baby had mild chiari type 1 malformation tonsils extending 8mm at that time. It was found during a test for a hospital visit ... at that time we thought our baby may have had seizures... turns out best we could tell it was because our baby did not like having bowel movements so our baby was trying not to go and doing what we saw was possible seizure.  Seizures were ruled out, nothing really found other than chiari ...We were told not to worry and just to check on it in a couple years... i am lost for words as I read your stories bc I am not sure what we need to do.  I am thinking of having a recheck but am concerned at 3 years old ... don't like sedation. Our baby doesn't have any symptoms I am aware of ... please let me know any advice you may have.

Also, our baby..now toddler, has very enlarged tonsils (in throat) & they are nearly touching... ENT doesn't want to do removal until a year or so later from now... could this be caused by chiari in some way?

I am concerned the enlarged tonsils are affecting our toddlers sleep and possibly causing sleep apnea now... already have struggles with eating because of the huge tonsils.  

We want to do what is best for our baby/toddler.

[Elisaandbucky]

Reading through your thread, Selma and baccalynnwv gave you the most important information - especially about the request for a CINE MRI. CSF flow is a crucial thing that can contribute to various types of pain. I am just replying to show you some additional support for your research and for caring for your baby. My son is 17 years old and is still my baby. Hold yours close and take comfort in the care you will get from this forum.

[selmaS]

  Hi and welcome to the Chiari forum.

I have always wondered about the throat tonsils and Chiari if there was a connection.....I was always a mouth breather, ,had my tonsils removed as well as adenoids when I was 7...continued to be a mouth breather...if I tried to breathe thru my nose I felt as if I would suffocate as I could not get enuff air.....

After my surgery for Chiari my breathing is now mostly thru my nose....I do not feel like I will suffocate...however I do breathe thru my mouth as I feel that is habit after all this time.....

With Chiari since it is congenital (since birth) many of us have had symptoms all our lives but considered how we felt to be "normal" so we adjust and accept and do not consider how we feel to be a symptom....so your child may have more symptoms then they can express or be aware of....plus the way many of the symptoms in medical terms never seem to "fit" me....but I find it is the way I describe it and not that I did not have it....so verbage of symptoms may be distracting ....


Have your child checked for sleep apnea....have more testing done.....and research a true Chiari specialist...see our list of Drs to help you get started with your research and know the list is not a referral nor an endorsement for those listed there....just a tool to help your get started. Also be advised you may have to travel to get to a specialist and as you research be sure to ask if they treat children, not all will.

Last- you posted on an older thread to youngwife...she is not an active member here, but if you send a PM (private message) she will get an e-mail....I will also contact her as well to let her know someone is trying to make contact....

Know you are not alone <3

[baccalynnwv]

Hi,

I know some more people will come here and give you better answers.

I would recommend finding the doctor list on this page for a neurusrgeon, pediatric, that specializes in Chiari. Most doctors, local neursurgeons, physicians, and neurologist are not familiar enough - or up to date - on the treatment and diagnosis of Chiari. They rely on OLD information. Within the last 10 years or so, there has been so much new information. For some reason, the medical community has been reluctant to move forward with updating their diagnostic criteria.

Check out Csfinfo.org for lots of information and videos. There are many regarding pediatric Chiari. Infact, most of the Chiari studies are related to children as this is a mostly congenital deformity.

I would recommend your doctor order CINE MRI to check for csf flow obstruction. No lumbar puncture at this point. If the doctor says the size of the herniation matters, you need to find a new doctor.

Since your child is now 3, you probably may not know what all he is suffering from. He may have learned to tolerate the pain. If he is not having severe symptoms - or it is not impairing his quality of life at this time - surgery can probably be avoided. But it would be good to be set up with a doctor who knows what he is talking about as far as Chiari is concerned.

He may have not wanted to have a bowel movement because it hurt his head. That's one of the big problems with us Chiarians.

No, his tonsils in his throat are probably unrelated to Chiari. However, there seems to be a correlation between allergies (that can trigger swollen tonsils) and ehlers-danlos. Ehlers-Danlos can be common with people who have Chiari. And, just to make sure there is no confusion, the brain has cerebellar tonsils. These are different than the ones in the throat. Cerebellar tonsils are actually the bottom back of the brain that is slipping through the big hole at the bottom of the skull.

I would also recommend a full spine MRI to check for a syrinx and a sleep apnea test. Many children with Chiar are effected by sleep apnea.

Good luck in your search. Welcome to the forum!