Additional diagnosis for donovan

Melisande · #1 07-01-2006, 08:11 PM

Hi everyone!

I've been a bit hesitant to post, but I thought I would go ahead and report what our preliminary results were for Donovan's retesting this year. (MRI, sleep study, CO2 challenge, EEG, etc.)

We still have central apneas going on, abnormal response to CO2, every else looked okay EXCEPT our MRI this year. Â*Here's the official word on what they found:

functional chiari malformation 0, small posterior fossa, syrinx at the cervico-medullary junction to T2

This is the first year that they actually found something physical that could account for Donovan's symptoms since he was born. Â*They *almost* did a brain decompression surgery, but there just was not enough evidence in the second MRI to warrant it. Â*We will have to go back in 6 months for more MRI's.

I know I've heard of other kids with this and it's usually associated with Spina Biffida. Â*With Donovan's symptoms of autonomic system dysfunction this presents new ideas of what may be the cause of his problems. It's been a lot to take in for a week!

LKN · #2 07-01-2006, 08:25 PM

I'm glad you've gotten some answers and hope the information helps in his treatment. I hope you are able to have some more undertstanding of what is going on as the information is explained and more tests are done. It sounds like you are getting good care for him.

madelyn and rynns mom · #3 07-01-2006, 09:54 PM

I'm glad you are getting some answers finally!!! Hope Donovan is doing well!!!

Love Kris

JWorthington · #4 07-02-2006, 05:18 AM

It is a shock to get this news, but at least you have some idea of what is needed for Donovan, glad you got some answers.

Thinking of you, you are doing an awesome job

Julie

babyhugger · #5 07-02-2006, 09:35 AM

Melisande,

Are chiari malformations graded? I can't remember. I remember some are associated with spina bifada, but some are not. Some require surgery I think. I'm very curious as to why this hasn't shown up till now. I'm sure it would have been nice to know much earlier~

I'm glad you have gotten to add pieces to Donavan's puzzle! Lots of info to process, but atleast you have some answers to questions you've been asking for quite some time.

Give the big "D" a big ol' smooch from KY!

Melisande · #6 07-02-2006, 07:59 PM

Yes, the chiari malformations are graded, usually 1 - 4. Donovan's is a zero (0), which essentially means he's sort of impacted in that area of his brain. The syrinx just showed up for the first time this year. We've had multiple MRI's of his central nervous system since he was born, so at least 4 years worth. It's the first time we've had any possibility of a physical cause, although they're not willing to say that yet. They labled it "functional" because the CSF is flowing normally enough. The neurosurgeon said he's seen kids with this same condition who have no symptoms. Donovan's kind of been a puzzle from the get-go.

willsmom · #7 07-02-2006, 11:43 PM

I am glad you are finally getting some information. keep us posted.

MOMOFFAITH · #8 07-03-2006, 02:44 AM

Good luck processing all the new info. Hope everything falls into place for his care and health. God bless you and your family!

Charity-Kadyn's mommy

lovemymak · #9 07-24-2006, 06:24 AM

I am new to the boards, but wanted to share our experiences with you. My daughter is now 22 months and was diagnosed with a Chiari I Malformation when she was 9 months old. She was actually seeing Dr. Cotton, and her sleep study results showed that she had 144 central apneas in one night! A brain MRI showed the Chiari I, and the neurosurgeon in Cinci did her decompression surgery. She was apnea-free for 6 weeks, and then it all came back as though she had never had the surgery. 3 months after the first decompression and after coming back home to SD from Cinci, she had her second decompression. She was apnea-free for 8 weeks and then it returned.

Needless to say, she is now on a vent while sleeping. Her sats would drop into the 60's when she would have an apnic episode. She hasn't taken too kindly to the vent. She has only been on it for about 3 weeks, and her respirations are at 50-70 bpm while she is asleep. She is just fighting it. I guess that's one way to keep her breathing!

Keturah's neurosurgeon said that the compression from the Chiari damaged the nerves in her brainstem, so when she goes to sleep and her brain is not active, her brain doesn't get the signal to continue to breathe. They were able to determine this through nerve monitoring during surgery.

I pray that Donavon won't have to go through a decompression as it is extremely painful. It is extremely helpful for some people though, so maybe he would be blessed to have it relieve his apnea.

Keturah is now bound to the trach and vent for the rest of her life, unless by some miracle from God, her nerve functions in her brainstem return and she is able to make it through the night on her own.

I hope you are finding some good information out there to help!

http://www.conquerchiari.org/index.htm
http://www.pressenter.com/~wacma/
http://www.yvy69.ukgateway.net/