8 yr old, 9mm malformation

My little girl hasn't been officially diagnosed yet, but her MRI on 2/23 stated that she does have a 9mm herniation. We are currentlly seeing one of THOSE typed of Dr. (a NL) who isn't really willing to make the diagnoses. All of her symtoms (symptoms) fit w/ everything I've been reading on it, IE: dizzy, H/A, pain, nausea, vision problems. pins & needle sensation in hands & feet, motor control problems, fatigue, loss of stamina, swollen face, & now, most recent, drop attacks!!!! We have basicly been told to NOT give her any tylenol & please don't call in the mrng!! After this NL messed up 2xs on info for ins. co & to get a 2nd opinion, we are trying to move her care to a different pediatric NL/NS.  Espc as she didn't even referance the CM to the ins for the addtl tsts, or to get the 2nd opinion. BUT.... managed care.... we have to jump through their hoops!   Am so very glad I found this site! have read many of your stories, and know that I will just have to keep trying till we can get in w/ a CM specialist.

Is this normal for symptoms to go from nothing to fairly severe in just 3 mo? City has to lay down @ sch every day for at least 15 to 20 min. & has a VERY hrd tm on the dys she has PE or does dance. My hsbnd wanted to start limiting her activitiy, in hopes that she would feel better, but.....???? does this help???? I want her to be "normal" for as long as possible.... any advice/stories would be much apprctd! Thanks,
Jodie, City's mom

[jennylynch]

I am not sure with children but i do know with myself i went from nothing to a wheelchair for my safety from the NS's advice. i was falling and my legs quit working. I know that stress and over activity does contribute some to symptoms. I pray for your family. we are trying to get a second opinion for my 9 year old also. she has seizures and now is having severe vision problems and headaches. had an mri and when i mentioned chiari to her NL he said that chiari is a state of mind and can nto cause these symptoms. i then got very mad as i jsut had decompression a little over a month ago and left. i am in search of a new NL for my dd now

[selmaS]

  Hi and welcome to the Chiari forum.

Since ur DD is already having drop attacks, I will get right to the point...do u need a referral to see a specialist?....if not, do ur own research on true chiari drs and get her there ASAP!....Drop attacks r one main reason to get her to a Dr fast and one that is well informed.

We have a list of drs that was compiled by the members here of Drs they have been to and liked...that means u still have to research all the drs...and do not take the list to mean they r a referral as they r not....just a means to help u begin ur search.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Chiari can have the symptoms increase rather aggressively....it can be due to a fall, or an activity she is involved in....or a bumpy car ride could do it...it is hard to pin point the cause, but it is good to avoid strain and  ne activity that  will cause an issue later on.

If ur DD has another Drop attack take her to the ER for evaluation.

"selma"

[Citysmom]

Yes, we did need a rfrl for her to see the CM specialist, but saw our PCP on Tues to get it. So, am just waiting for the paper work to go through to see the specialist now. city did have another attack just yesterday at the end of the day @ school. Had to pick her up, cus she couldn't walk. Been telling our current NL everytime, but she didn't say that City should be seen ASAP, or anything about taking her to the ER! The effects usually last <hour. Then, it's as if it never happened.

Thank you so much for the info though. The attacks are happening almost daily now & we r VERY worried about her. so, nxt time - the ER!
Thanks again. Jodie

[selmaS]

  I am including a link to where I got my info regarding the drop attacks-
http://www.chiariconnectioninternational.com/docs/Factsheets%20for%20Docs_Chiari-1%20Malformation.pdf

Please note all the contributing chiari specialists.

  "selma"

[Citysmom]

Thank you to everyone for your answers! looked on the websites & chased them to others!

[gmaldonado]

Hang in there !!!! You and your little girl will be in my prayers! It is such a difficutl thing to deal with when its "you" but when its your baby its a million times harder. God bless you, we love you and keep praying!