[peacheysncream]

Age-8
Sex-F
Has been ill for 2 years.

MRI = Clear

Symptoms in head region -

a) Retracting eyelids when trying to sleep.
b) Severe pain on top and at back of head.
c) Jaw pain and lethargy so bad cannot often speak or eat.
d) Periodically sees squares in eyesight/flashing lights.
e) Hair is fine and breaks easily.

Symptoms in body region -

a) Specific pain in lower lumber region of back.
b) No strength in arms/legs/neck. (cannot hold a pencil)
c) Constipation (constantly on relaxants).
d) Often only eats fruit for ease of digestion.
e) Often has burning pain in heels.

General Symptoms

a) Extreme fatigue (Walking down stairs exhausts her and that maybe all she manages in one day).
b) Extreme general muscle weakness.
c) Cannot tolerate change in temp. (wears 7 layers at night, still cold).
d) Is quickly putting on weight but hardly eats.
e) Severe general pain so bad she spends most of the day crying out for releif.

If this girl has a bath her mother has to hold her up or she would drown.

Her mum holds her eyelids closed so she can sleep but the pain is so severe of touching her skin that she has learnt to sleep with eyes open.
Her mum has tried so many pain killers from the docs and none work.

Please give me some idea where to go. She has been to so many doctors in Britain who specialize in paediatrics.

Yesterday this girl asked her mum to help her die! She cant take it any more.

[Mark in Idaho]

peachy,

I am so sorry to hear about this little girl. Has her mum tried to find a teaching hospital with a peds ward that can take a long look at her condition.

Is there any chance she can be brought to the states to St Jude's Children's Research Hospital ? Maybe you can get a phone or online consult from doctors at St Jude's.

Things I would want checked are hormones and her immune system function. Did she have any vaccinations just prior to this illness ?

My best to you both.

[pabb]

hypothyroid