weaning off diet-to Hill/Saro

[Guest guest]

Dear Saro,

was just thinking of you went your post came thru......am so

sorry for the dilema you are in...will be thinking of you on Thursday as you

have your appointment......let us know how you go.

Leah is complaining more and more of aches and pains in her bones...just

like Rohan....it's seems so hard on them that they have to suffer such at

such a young age....but maybe as time goes on new treatments may come along

that can help them.

love to you guys,Jeanette & Leah

>Hi ,

>Thanks for asking. I'm afraid things are not too good.

>Any effect the Diamox had has worn off. You are right

>puberty might be complicating things.

>All of Rohan's classmates are fairly shooting up, but

>he has grown only about an inch the last two years.

>It might be the compression fractures in the spine as

>well as growth being slowed on the diet. Before that

>Rohan was one of the tallest in class.

>

>Now the school is gathering forces to try and send

>him away to a school (usually residential) for kids

>with severe epilepsy. He doesn't want to change schools

>and we don't want to send him to a boarding school.

>

>I have an appt to talk about AEDs on Thursday, and am

>not looking forward to it as we don't have a plan as to

>what we should suggest.

>

>At the moment I feel as if everything is against us and I

>could cry (infact I am).

>

>How is getting on? Haven't been reading the list

>much, only skimming.

>

>Saro

>

>

> > PS - Hi Saro, sounds like things status quo there?? Meant to jump in on

>a

> > post from you to someone else the other day to see what was happening at

> > your end - guess nothing's changed then. Seizures fairly under control?

>Any

> > chance puberty is upsetting things diet wise with Rohan - or has this

>one

> > been 'done' and I missed it??

>

>

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