I just dont understand this whole chairi type 1 thing. Shes 13 months old, diagnosed with chiari on jan 13th, 2012. She also has sleep and awake apnea, severe reflux..allergic to mostly everything. Shes on infant elecare formula with some beechnut rice. Recently shes been pulling at her hair, puking most feeds. wakes up screaming, doesnt nap well. And today makes things worse..I was walking my 4 year odl to the bustop to put her on the bus with my 2 1/2 son and Paige, Paige started like getting motion sickness in the stroller, and she did this when I went to pick my finacee up from school..she was screaming, pulling at her hair, chocking, gagging and then pukes..Do you thinks something is going wrong? She sees her pulmnary dr tomm at the same hospital she see the neurolgist and neurosurgeon at? Please help ... Most of the time paige sleep with me just to make her comfortable. Also shes on meds for her reflux and on a sleep apnea montior when sleeping...
Dear Jessica...
I am so sorry your little Paige is suffering so...being a mom myself...I can only imagine the stress you are under. I am glad you are here...You need support right now and there are other moms on this site that may be of help to you..we are ALL here for you!!!
Now...Miss Paige , you said has been recently Dx'd w/Chiari......the issues you mentioned in your post sound all too familar ...gagging, chocking , sleep apnea and the motion sickness are very common symptoms of Chiari.
Do you have an appt set up for neurologist?? From my experiences with neurologists...the few I saw knew nothing about Chiari. It doesn't hurt to take Paige to NL...you may find one that knows about Chiari and all its' symptoms.
Has any of Paiges' doctors suggested you take her to see a neurosurgeon???
Please keep us posted on things..in my thoughts and prayers.
Peace,
Lori
Thank you for rsponding back:)
Lori. Paige saw a neurosurgeon on jan 13th,2012. He diagnosed her with the chiari 1 after reviewing her mri scan. Paige has to see the neurologist Feb 7th after an eeg. She will see the same neurologist that my 2 oldest sees. the neurosurgeon will perform surgery 1-2 weeks after Paige sees the neurolgist. The neurosurgeon said Paige alsos needs a cpap?, but her pulmnary doctor feels she doesnt need it...?How do I help her with the motion sickness? Should I bring this up to the pulmnary dr...maybe she can call the neurosurgeon?
Hi...
I would surely bring up the motion sickness to the NS.I suffered badly with that myself b4 my decompression.
What is a cpap???Is the pulmnary doc on board with Paiges' Chiari????
As far as helping her w/motion sickness..thats a tough one..she is already having issues with choking..Can she eat a Saltine??? I always avoided bumpy roads and quick movement of any kind.....that goes for riding in a car to changing positions..sorry I am not too helpful here!
Peace,
Lori
The pulmnary dr said Paige has what looks like an ear infection. They want me to try a new antibotic today, hopefully shes not allergic to it, since me and my son are. And gave her ear drops too. A cpap a machine that would give her xtra oxygen. The pulmnary dr is makeing feel like..she doesnt think Paige would benefit from the surgery. i was like wtf? She has so many medical issues...that the chiari could be contributing to...I dont see eye to eye with her pulmnary dr. She cant have any other food except elecare infant formula and added rice.
Hi..
Thanks for the explaination on the cpap.
Has Paige started with the new anti biotic yet?? If so...is she tolerating it ok???
I am curious why Paiges' Pulmonary doc feels as though she would not benefit from decompression surgery....just my opinion here...but it seems like Chiari is well out of her scope of expertise...
These doctors can make your head spin, right??? Well, Chiari by definition is a neurological condition which is treated surgically if indicated. and if not indicated..the sx's can be addressed with meds if the person is not a surgical canadate.
Hope you are both doing ok...keep us updated...I pray Paige tolerates the anti biotics well.
Take Care,
Lori
Paige will start the antibotic tomm. The dr wanted me to wait until the am to start, so if she started to react to it,it would be daylight out, i can give her benadryl or her epi pen. Her pulmnary dr and I have had some words before. I hate seeing this woman.
This is why
Paige has been in and out of chop since 1 month. She was a full term baby and good after birth. Then she caught a cold at 2 weeks old and would stop breathing. And we were freaking out, we had no clue what to do. So I took her to a local er, they admitted her over night for observation. Then she kept on having these turning blue events, and constanly puking her feeds. So I took her to chop the for all of her other admissions. Then pulmnary eventually after her 2nd admission she was put on the apnea box. At that admission they found she had severe reflux and allergies, so the 1 gi dr didnt listen to meabout the formula, so i changed her formula for the 5th and final time to elecare and the vomiting stopped somewhat. So let me get to oct 2011, I took her to her monthly pulm apt and the downloads on her montior box, were coming back saying she was having no apnea events lasting more then 20 seconds. I told this dr I can still see her stop breathing( the dr didnt believe me)...So she made me a deal, if they did a sleep study and she had no apnea events then she would be taking off the box. So I took paige for her sleep study...a week later the results showed she stopped 20 times...9 obstructive apneas and 11 central apnea. So her pulmnary order her the brain mri and thats where it showed her chiari type 1. And she cant come off the box until a few months after surgery or longer, we dont know how long she will need it. I hope you understand what I just wrote...its alot we all been through with Paige