What do I do now???

[7fromheaven]

My daughter was in PICU because of possible seizures and she had an MRI that showed Chiari Malformation.  This was about 6 hours ago. (I am still sleep deprived so I apologize if this comes out wrong beforehand.  :)

Unfortunately the neurologist acted like it was no big deal and tried to make my DH and I feel stupid for even asking questions about it.  First he said if we wanted to he could consult a neurosurgeon.  Then he went on to the seisures.  Then I ask about possible surgery since I had no clue what CM was and he was the one who mentioned neurosurgeon.  He acted like and said I was trying to put my daughter through some unnecessary surgery.

My daughter is 3yrs. and 4 months.  She was fine developmentally until between 12-18 months. I noticed problems such as
1.she just slowly started loosing  verbal ability.
2.she stopped sleeping much at all. (like 4-6 hours a night)
3.she seems unhappy/in pain.
At her 18 mo. check up I wanted answers and asked for a scan to check for seizures but the CT came back neg.  She was 2 by the time we could get her in with referrals.
Now she is non-verbal, still doesn't sleep. (we tried sleep meds. from the Dr.s that worked for about a month and then they stopped working.)  She is developmentally like an 18 month old.  We had her tested for autism but the developmental pediatrician said she wasn't (that took jumping through hoops to even get her in there , too)  I must confess I was disappointed a bit because I wanted some explanation for slowly loosing my daughter before my eyes.  But I was glad we had ruled something else out.
We have had her in speech, OT/PT for a year with no real change. (her balance and coordination is off and she has low muscle tone)  Looking at pics and video at 12-18 mo. you would think she was another child.  she was totally on track physically/mentally/verbally.  (my avatar is her at 12. mo's)   She doesn't smile much anymore.  It breaks my heart.  
I have been devouring everything on Chiari Malformation I can find.  I have found everyone of her problems being related to CM.  I have been crying too because I feel like finally after all this time we have answers.
EXCEPT, the neurologist only wanted to give her seizure meds. even though the EEG/CAT scan/MRI showed no sighs of seizures.  I feel my daughter has been having headaches for sometime now but they seem to be getting worse.  She can't talk but you I can tell she is hurting.  If I give her tylenol she calms down and stops crying.  It is now so bad that 3 our 4 days a week she is like this and we never know what it will be like until she wakes and then it is ALL day long.  She isn't violent with us or anyone but 10 days ago she started hitting herself in the head really hard.
  I know this is long please bare with my rantings.
I want my daughter to have peace. I feel in my gut that she needs surgery.  Who will listen to me?  I will go out of state if I need to.  What do I do now?  What should my next step be in fighting for her?  

[7fromheaven]

Thank you all for your comments.  :)

[*Stormy*]

Hello and Welcome..

I know this has been already said but find a NS that specializes in Chiari..ASAP!!! I find it incredible that your DD has stopped speaking and they are doing nothing about it!!!!

I know of another mom who's daughter was 18mths and was uncoordinated and falling down all the time all of a sudden. She had the worst time but finally got someone to listen to her, her DD had the surgery and was immediately so much better.

Mom's come with instincts that can't be ignored...if you feel it in your gut...then it is probably the truth. Ignore dr's that tell you it's nothing, they are ignorant and misinformed..do not stop until you find a DR who will take your DD's symptoms seriously!!

Good luck!
Carolyn

[selmaS]

Hi and welcome to the chiari forum.

I am so sorry ur little one is having to deal with these issues and u as a mom I understand it is heartbreaking to see them in pain...and u r doing all u can to help.

It is important like Ray said to find a pediatric NS that is a specialist with chiari to know how chiari is affect ur child.

Unfortunately there r too many drs NL included that do not see chiari as a potential issue.

We do have a thread with a list of drs names on it , however u do need to research to locate the right one for u....and u may need to travel.

Our list does not note which may be pediatric drs.....I apologize and I hope to add that info soon.

I did want to mention that some children with chiari do suffer from seizures...I do not know if ur child has them or if this medication will help..only that it is possible for her to have it as well.Did they do an EEG on her?

Other tests u will want done and conditions ruled out-
CINE MRI- CSF flow study...looks for CSF blockage and overcrowding
Cervical, thoracic and lumbar spine MRI- looks for syringomyelia, tethered cord, and other spinal issues.
Another condition u may wan to rule out is Ehlers-Danlos....in the even she may need surgery, EDS'ers have a higher risk for rejection....and have fragile skin...so staples can not be used....and patches other then ones own skin can not either.

CM does affect the  brain stem which is our control board so to speak...so I can understand how this may be affecting one so young.

Keep pushing for answers
"selma"

[rod44]

Hi, I am so sorry that you and your child are dealing with this.

You need to find a Pediatric Neurosurgeon who is experienced in dealing with CM. Most doctors know very little about CM,  most only coming across it in medical school.
The main problems with CM are
CSF obstruction.
Overcrowding.
CSF obstruction & Overcrowding are the main reasons for surgery, the goal of surgery is to improve quality of life, relieve symptoms and preventing the progression of this condition. Surgery is not a cure.

Other related conditions need to be ruled out such a Syrinx (Syringomyelia) and other issues.

Ray