- neuro plus sleep meds- positive

[Guest guest]

Hi all

We've had a really positive day with Jess today.

There was an appointment with a neurologist today (it could be said at

last). Before we saw him it was good, as while Jess, Elly and myself were

waiting we saw one of the consultant neonatalogists that had looked after

Jess when she born. She was really pleased to see Jess and she chatted for a

good 5-10 minutes while both girls harassed her and was asking after Flo.

She asked whether we got support from our group - I said that I co run it

now! I feel that if she has any questions on CHARGE she will contact me.

The neurologist, well using the scale that Bonnie used a while back I would

say he was an 8. We have no idea whether he 'knows' CHARGE, I suspect not

but that is irrelevant. After understanding what type of seizures Jess has

had he basically said that we could medicate, explained risks of sudden

infant death (that does not happen in the States apparently), suggested we

could consider for a couple of months medication since jess would be on it

for a couple of years. He wanted to work with us as partners in 's

treatment. How refreshing is that.

A funny though, Flo had joined the rest of us late and the neuro had

wandered past us a couple of times so it was obvious that we were waiting

for him. When we went into the appointment he shook my hand and ignored Flo.

Yes Jess can pass as Mediterranean but Elly although paler than Jess is very

clearly mixed race. So, when Flo chipped in he said 'who are you?' Soon

after he focussed very much on Flo since I was preocuppied with Jess.

The result, we are going to wait a couple of months to consider meds for

. One reason for this is we now have a prescription for melatonin. So

on to the second part of the story. This is second hand as I took the girls

home and Flo went to see the community paed to pick up the prescription.

From this list it seems to be clear that melatonin only helps children get

to sleep. Jess doesn't have this problem. The paed accepts this and has said

if it doesn't work she will prescribe a slow release version ( thank you

for this info, but we didn't it, it was offered). (The neuro also

commented on melatonin when Flo mentioned it could cause seizures that it

can also have the opposite effect.)

Finally on this Flo agreed with the paed to delay any action on 's

ocds to see if there is an improvement should her sleep improve. These are

bad at the moment. Fortunately with some she can be distracted. Interesting

again this doctor we don't believe has much understanding of CHARGE but is

again happy to work with the parents.

Both doctors have offered/given mobile (cellphone) numbers to us. Going back

to the neonatalogist as we were leaving she came out and saw Flo, again

seemed really pleased and had a gratuitous dig at my lack of hair! This is

what Flo and I have liked about our local hospital. There may not always be

the knowledge but they have the attitude of working with the parent. The

opposite of Great Ormond Street who as Flo in discussion with the paed today

(who was defending GOS) who have the knowledge but not the attitude.

Gosh this email has taken me over an hour to write - I have been watching

the second 2 hours of ' When the levees broke' by Spike Lee. And we go

through s**t!

Finally to all of you a gratuitous laugh, after seeing my chiropractor he

suggested I ice my lower, lower back - its not good at the moment. So I did

using an ice pack I have been using daily for a couple months on my knee

(that's another story) I now have a rectangular burn on my butt! ON that

note good night

Simon