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sleep study and nerve testing

Posted: May 31st 2009

Tina_EvesMum

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Eve is to be admited to the children's hospital in Sheffield on Monday 8th June. We are seeing the respiratory Consultant who specialises in Sleep originating disorders of respiration.

This is slightly misleading as Eve's breathing/heart rate problems are not limited to when she is asleep!

Anyway we are hoping they find something they can help her with.

After the sleep study we have to travel across Sheffield to the Royal Hallamshire Hospital for another test to see if there is a problem with her nerve conduction.

A week ago I thought she was coming down with a cold...however she has not developped true cold symptoms but seems unwell....or is that less well than she was. I am not sure whether we are seeing a general deterioration here or if there is just something going on that may go away....how do you know????

We have managed to have two days of fun this week. We went down to London and had two days out at theme parks. Chessington World of Adventures and then Legoland.

I will blog about those two days soon. However for now I have blooged about my Nephew who got married yesterday. Sadly Rosie and Eve's health and travel tolerance prevented us getting to the wedding.

OK sorry enough of my whinging.

Please pray that if there is something we can do to improve Eve;s Quality of life that htey find it in this upcoming admision.

Hugs

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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!
joe17's picture

i am currently under

Submitted by joe17 on Mon, 06/01/2009 - 2:52pm.

i am currently under sheffield childrens hospital also, but av never been under the sleep department. i had my nerve conduction test at the hallamshire hospitl and evrey one there seems to be really friendly. the hospitals are not to far apart so i think you will be okay in getting from one to the other. joe ;) p.s. hope you dont mind lifts becaues the nerve conduction test is more or less on the top floor
Tina_EvesMum's picture

Hi Joe...do you see Dr

Submitted by Tina_EvesMum on Mon, 06/01/2009 - 6:30pm.

Hi Joe...do you see Dr Sharad? He is really nice as is his Nurse specialist jackie. We have had EEGs at Hallamshire too....I may need to reach for Eve's oxygen before we reach N floor! Hugs
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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!

We have been told that both

Submitted by rachelbear8402 on Wed, 06/03/2009 - 9:17am.

We have been told that both our daughters have a suspected mito disorder. We're very concerned about the tests that our older daughter will have to go through, especially the muscle biopsy. They explained the procedure for the test, but not how it will affect her and how long it will take her to recover.
Tina_EvesMum's picture

Eve had a Muscle Biopsy,

Submitted by Tina_EvesMum on Wed, 06/03/2009 - 9:56am.

Eve had a Muscle Biopsy, along with Lumbar Puncture and loads of bloods and urine last December...apart from some Parecetemol needed for a day or two she was absolutely fine.We were worried about her recovery from the anaesthetic but they gave her glucose prior to theatre and until she was fully recovered from the aneasthetic and she did really well. Her leg looked quite sore but it didnt seem to bother her unduly. How old are your daughters? Eve was just five. Hugs
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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!

joe17's picture

Yes i see doctor sharad and

Submitted by joe17 on Tue, 06/09/2009 - 3:26pm.

Yes i see doctor sharad and he is realy nice. But i recently went to a speaclist mitochondrial clinic in Newcastle. Hope evreything went okay yesterday. Joe.