Re: 's diagnosis

[Guest guest]

Thanks for the update . I'm happy to hear that 's head

shape is improving. Is she going to grow out of it soon? I sure

hope that you can avoid surgery and that helmet therapy is all that

she needs. That's great that you have a wonderfully supportive

family. Take care.

Sue

Colin F., 13 mos.

STARband grad 9/04

brachy

>

> Hello Everyone,

>

> has been in her Starband for 4 months and we are starting to

> see some positive changes.

> We had skull x-rays which show side sutures closed. Then a ct scan

> that said they were open. The neurosugeon said her brain was

> growing slowly and that we needed to see a neurologist. He also

> recommended surgery if her deformity exists. Imagine that!

> The neurologist was wonderful. Another scary sedation and MRI to

see

> her brain volume and size. Her head is very " cone " shaped and so

is

> her brain. She was able to find all the brain structures and was

> excited about her helmet. She feels is growing slowly but in

> a nice curve on the 3rd percentile. She place her at a month

> delayed which we feel is not a big deal due to being 3 weeks early.

> The also discovered may have neurofibromatosis. She has no

> brain lession which would mean possibly a more mild case. Need to

> have time to really research and understand this. Our family has

> been a wonderful shoulder to lean on as well as this site. Thank

> You. The neurologist thinks surgery would be a tough road and

can't

> wait to see what her helmet will do for her.

> has pictures under -dcrrhs. She has been in the helmet

> since June and is now 8 1/2 months.

> We will keep you updated.

> Thanks

> and Baby Girl

[Guest guest]

Gretchen,

Thank you for your warm welcome. They have paid a lot of attention to

's walking and there is comment put to it of it not being right.

He cannot walk on his heels at all or lift his toes from the ground.

From a laying down position to standing is a lot of effort an quite

often requires him to crawl to something to get up and I have

noticed getting in the car on different occasions he will crawl in or sit and

lift his legs.

The muscle biopsy performed was done on his upper leg at the front

which showed no abnormalities.It is very hard to get to go

through with any test involving needles he has had enough and

really I can't blame him.As for a lumbar puncture I don't think I

would stand a chance of him co operating for that one. (I had approx

15 over time when I had fluid on the brain)

The reason we are going to a neurosurgeon is apparently they are the

ones to diagnose in which someone said no it would be an orthapedic

and I have no idea I'm floundering maybe we are being sent in that

direction because when I went to the new hospital I attended

emergency to have him seen.

Also the other hospital is sending him back to their neurosurgeon.I am just not

happy with their resolution to put him in plaster (and they don't know what the

results of that will be) and to put him on drugs for epilepsy to stop the

shaking.

Whatever this thing is there must be an underlying problem and in my

eyes slapping drugs into ones system for the unknown is not a good

thing.

I had a look at the Frederich's Ataxia but my comment to that would

be is his co ordination is fine however he has shown weakness in his

arms on previous visits but nothing major.

I will take into acount the MDA clinic right now my head is

spinning with frustration.I want to shake the doctors and say listen

to me not have a visit and check up every 6 months because what he

has is not life threatening.

I find the doctors very intimidating on the last visit he got cross

with because he could not remember the stretching excercises

rehab gave him....they never gave him any it was physio so he re

read his notes. Then I pointed out the sleep results to him and he

had not even read them!

When we walked out of that appointment said to me mum I think we need a new

doc he was like me not impressed with the doctors " attitude " .

Just like I keep saying the temperature and the tight skin is involved somehow

he sweats on the smallest of feats profusely and I think if I have one more

friend or family memmer tell me that its growing pains I will burst and say

something totally inappropriate!

Thank you for your help.

Lesley