1 year dx with mild chiari malformation

[abbieday]

Our one year old had an MRI done this week and this is the finding....
On static images the cerebellar tonsils extend slightly greater than 5 mm through the plane of foramen magnum consistent with a mild Chiari one malformation. The flow sequence shows normal CSF flow anteriorly at the foramen magnum and mild
attenuation posteriorly. On the balanced FFE turbo sequence the cerebellar tonsils extend further through the foramen magnum and impact the dorsal aspect of the cervical medullary junction with systole and diastole. There is no syrinx in the cervical
spinal cord. There is normal vertebral body height, marrow signal and alignment throughout the cervical spine. The cervical spinal canal is well formed. There is normal alignment at the cranial cervical junction.

He of course is non-vocal so he can't really tell me how he feels yet since vocabulary is limited to momma and such.  A little overwhelmed bc he also had an abnormal EKG indicating that his right ventrical was enlarged.  He was admitted into Children's bc he had seizures - which we found are from Non-Intentional breath holding and when a severe event of breath holding happens it triggers a seizure like episode at the end.  They feel that the above malformation may be the cause of this.  What does this report mean? what should I expect?  

My mom heart is broken......

[Elisaandbucky]

Thanks, Abbie, for responding. It's great that you are holding strong to your requirements for a doctor to have Chiari listed as an area of interest. Keep current with posting any new thoughts/concerns/news you may get.

[abbieday]

Thank you so much.  This makes me feel better.  I have done research and found only 3 in the state of Texas, and one may have retired.  Then one in Arkansas.  I have already told our pediatrician that I will not see any one that does not have this listed as their special study.

[Elisaandbucky]

The kind people above - Selma, baccalynnwv, and Nellan 12 - said all the important things about maneuvering through the medical process of getting a better understanding of this disorder. People really care on this forum and sincerely want to be a help and a comfort to you. I echo all the ideas the aboveosters have expressed. Know one crucial thing, you already have a great handle on this with your knowing that your child has a special and unique purpose. I have a child with special needs (neurological diagnosis present from birth) but this boy's love and compassion, despite his cognitive and intellectual challenges, daily reminds me how very present God is. I do hope that coming here to this forum makes you feel cared about and comforted.

[Nellan12]

Selma & bacclynnwv have given you very good advice!!  I honestly dont think i can give you any more suggestio or advice...but whst i can offfer you s re my prayers ..for you to be STRONG, and get the BEST doctors you can find for your baby!!! I can say that it is overwelming to hear all this,but have. Faith & pray and GOD will lead you...but you need to be STRONG...I know you think it is easy for me to say this to you,but believe me I do know how you feel, my grand daughter was. 4 months old when she was diagnosed with 18p deletion ( she has part of a chromosome missing)... Also a disorder that is not very well known...we also got HORIABLE information by the first doctor, this was so unfamiliar to the doctor that they had to look it up on line!!!! My daughter did ALOT  of research, she also had so many different doctor app. But she went to all of them and even made more in order to get as much help as possible...my granddaughter is going to be 5yrs old next month, and she is doing great!!! Lots of hard work on her part and my daughter, because with 18p- she has low muscle tone.. there for everthing that we all tske for granted ,like walking,jumping &talking andd so on she has to work at it... with lots of theropy and Prayers she is doing fine!!!! So you need to be the Rock for your baby and the rest of your family....because that is what moms are!!! I will be praying you for your baby !!! Keep us posted...and always feel free to vent. to us ,,we are all here for each other !!! God Bless <3

[selmaS]

  Hi,,,,,your  DS's  waking several times  during the night could indicate  he is gasping for breath  and waking....so do pursue ruling out  sleep apnea.

Only  a  pediatric  Dr  can suggest what meds or treatments  are right for your  DS....as  we all  have different  needs  with  this condition,,,..so  we can not say  what  may  be  suggested to  try.

But  as  the above posted mentioned  take care   of yourself.....and  everything will fall into  place.Having faith  is  the best way  to navigate this difficult time....and know we are here too....willing to offer a shoulder  <3

[baccalynnwv]

You are going to be exhausted from all the medical appointments for your little one. Stay healthy and take care of yourself! You will do a great job. It is easy to get overwhelmed with all of this, especially when the doctors, like the cardiologist, seem to think something isn't worth following up on. Its not their kid....

Be prepared to hear "mild, incidental, no need to follow up, its not causing the problem but I don't know what is" kind of statements often. If you hear those, its time to move on to another doctor that will help you really find the answers. With your faith, I believe God will lead you in the right direction. :)

What state are you from?

Personally, if you have the means and the insurance, I would certainly find a Chiari Specialist/neurosurgeon and travel any distance to find the good ones. You want a specialist that does more than just a few of these surgeries a year.

Medications - I really don't have any advice since we are talking about a child. In my experience nothing helps like sleep and staying still. I also use a soft neck collar. Your son is so young and the issue you are going to run into is that he is going to learn to tolerate the pain - it may not be as easy for him to tell you when he is hurting and people will not be able to "See" him in pain. This is common. As adults who get a Chiari diagnosis, we often do not get taken seriously because our pain tolerance has shifted to the right on the pain scale of 1-10. What we consider mild - others might consider ER worthy.

You can do a search on any of these forums and get a pretty good idea of who people really like and have had success with.

I am so sorry you and your son are going through this.

Please check out CSFinfo.org. There are a TON of video's to watch that will help educate you, and they are pretty easy to understand. There are a slew of disorders that can accompany Chiari. You really need to arm yourself with this information.

[abbieday]

What treatment options are there and medications?  I mean what should I expect over the next few months.  He has breath holding spells - and the worst ones end with a seizure.  Uggh....he has been having them since he was 3 months old.  Also on his EKG they found a rhythem that as indicative of right ventrical enlargement but the cardiologist did not want to follow up and said that it was not a big deal at this time.  I talked to the radiologist who said it probably needs to be followed up on.  I was already thinking that I was going to press for more tests and monitoring on that as well - what do you all think?

[abbieday]

SelmaS....I have noticed that he has begun to snore - A LOT.  I co-sleep with him because his older brother (now almost 3) had Sandersfer Syndrome and was a SIDS high risk baby.  Judah (ours with this dx) does not sleep all night.  He wakes every 2 to 3 hours and sometimes is just whiny, whiny.

Honestly, Right now I feel overwhelmed and easily moved to tears...well crying more than I should.  I feel scared.  That is the truth - just plain scared. And Heart broken....absolutely heartbroken...and a little lost.  

I keep reminding myself of Jeremiah 1:5 and claiming the promises that Judah is created for a purpose.

[selmaS]

  Hi  and welcome to the  Chiari forum,

I  can   hear   your  worry  and frustration  over  this  DX.....all of  us here  will  help  any  way  we can.....as baccalynnwv......mentioned above there  is  no such  thing  as  mild...especially  since your child can not verbalize how  he  feels.,,,and  as  she  also  stated  it is not the length of  herniation but  the obstruction  of  CSF... and  the  above  report  shows  what  all  of  us  have...ok  flow in  front  and  slowed  to  the rear  where  the issue  is.....
My  concern  for your  DS  is the  breathing issues and would suggest  he be  checked  for  sleep  apnea....

Seizures,  are something some  have adults and  children and it seems to  be  random as  to  whom  it may  affect....some  are relieved of  seizures post  op  while  others  continue  to be  affected....no way  to  know,

Do  educate  yourself on  Chiari  and  ALL  related  conditions....and  research  Chiari specialists...we  do have  a list  of  Drs but  the  list is  not meant to be  a referral,nor  an  endorsement,.,.it is meant to  be  used  as a tool  to  research  Drs....

Ask as  many  questions as  you  need  to  and know  you  are  not  alone.

[baccalynnwv]

It could be caused by the pressure on the brain stem. I'm glad you have doctors pointing you in the right direction worth Chiari. Breathing problems and seizres can be symptoms of chiari. Hopefully someone who is more knowledgeable than me will come along soon and give you more info. I would encourage you to do as much research as possible.

Really, there is no "mild" chiari. Some people with huge mm herniation have no symptoms while others with minimal herniation have reduced csf flow. I have found in my own experience typical radiologist do not read csf flow properly regarding chiari. A CINE MRI is actually needed to get an accurate reading on csf flow.
I, on my MRI, have a 4 to 5mm herniation and will be having surgery in January due to severity of symptoms. Keep is posted.