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Please pray with me for support from the Neurologist

Posted: October 19th 2008

Tina_EvesMum

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we are off to Sheffield on Wednesday to see the neurologist...hopefully he will have the EEG report...I also hope and pray he will acknowledge the changes we have seen inEve...and start some testing to  find the exact cause.I have to confess to being a little anxious...almostas afraid of him saying nothing wrong as I am of him telling us what is! Does that make any sense?

I have a picture of Eve over a year ago stood in a walking aid holding her head midline...now she has no head ortrunk control at all....prior to Februrary 07 eve ate all her meals orally when well...now she is unable to swallow her own saliva....she also lost her ability to cough following her acute illness June/July this year...that has improved slightlyin that she atempt to cough but needs suction to actually clear her airway.

I wonder whether taking thephoto along would help???

http://www.flickr.com/photos/11194695@N02/1064227246/

also her eyes opened fully even a few months go but now her right eyelid droops.

I would really appreciate any advice on questions to ask and things to tell him? 

many thanks

tina

I

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Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!
MotherWhimsey's picture

I am wishing you a ton of

Submitted by MotherWhimsey on Sun, 10/19/2008 - 8:53pm.

I am wishing you a ton of luck. You guys will be in our thoughts on wednesday. I think I'd put it to him just like you've put it to us. Just tell him "this is what she used to be able to do, this is what she lost and when she lost it." Write it all down, cause if you're like me, you get in there and think "I know I had a bunch of questions I wanted to ask, but I can't remember anything." Just make a nice list of points you want to mention and questions you want to ask. You can even make two copies and give one to the neuro. Good luck, we'll be thinking of you guys! I hope you get some answers.
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Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

Tina_EvesMum's picture

wellwe are back from the

Submitted by Tina_EvesMum on Wed, 10/22/2008 - 12:40pm.

wellwe are back from the hospital! It was worth the 5 hours on the road as at last we feel listened to! We actually have come away with what we had hoped for backin August. The Neurologist had read the reports,listened to what we said, Looked at the photographs we had taken and then sat and explained hi thoughts. The EEG showed that the jerks were not epilepsy! He went on though to explain that this means they are not caused by anelectrical discharge onthe surface of the brain...instead they are cused by something deeper within the brain matterand that is consistant with what the MRI showed. SO he now want to have her admitted to the children's hospital,again in sheffield, for blood tests,CSF tests, skin and muscle biopsy,and urine tests. he hopes togetthat arrangedfor within the next couple of weeks and to have results back before Christmas. hmmm what a Christmas present hey! but we need to know. firstly to see if there is any treatement to slowthingsdown...but also to give us the opportunuty to know what we are dealing with and then get back on with the task of being Mum and Dad...not explorers in unknown territory! so still no answers but at last a step inthe right direction! hugs
__________________

Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.

I do not know what the future holds but I am glad I know who holds the future!

MotherWhimsey's picture

yay! I'm so glad someone

Submitted by MotherWhimsey on Fri, 10/24/2008 - 8:52am.

yay! I'm so glad someone listened to you! and that's amazing that he's getting all that together so fast! I hope these tests give you an answer.
__________________

Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com