an update on my girls

[Guest guest]

Hi

I thought I'd give you a quick update on my girls.

J (who has moderate/mild LD) is doing really well on the Byron White formula's -

she's still sleeping a lot, and is only at school part time, but her thryoid

issues seem to be getting better - now we just have to hope her joint problems

improve!!

H (who was completely paralysed last October - unable to hold her head up,

unable to move her arms, legs or torso, unable to swallow & was having trouble

breathing), has improved enough to do 1 subject at school (ceramics) with some

modifications (she's still in her wheelchair & can't use her arms a lot). She

is at school 1 hour a day, 3 days a week ( & spends the rest of the time

recovering). We have had to fight HARD to get her IV Rocephin here in

Australia, but her wonderful Dr (who isn't an LLMD, or has even treated anyone

with LD before) has agreed to follow the guidance of H's LLMD in Hyde Park, NY,

USA ( Dr H), & she has been improving dramatically on that (she's up to 4 months

on Rocephin). What has really turned her around though has been the combination

of the Rocephin & the Byron White Formula's (along with lots of other abx, meds

& supplements). I know it doesn't work for everyone, but for her it seems to be

working really well.

It is so exciting to see H able to walk, talk, swallow, use her arms, & even

sing. She has a long long way to go - she's having physiotherapy every day, &

starts brain rehab soon (with neuro eeg feedback) to treat the damage done by

the LD to her brain, but it is great that she is able to start doing these

things. She still spends most of her time in bed or on the lounge, but now we

can see that she is improving, rather than having to sit in shifts to watch her

breathing as she sleeps to make sure she makes it through the night (at her

worst we took the very unpopular decision to not put her into our local

hospital, as at the time they had a golden-staph infection problem, & we knew if

she got that she would die very quickly).

So.... for those that are struggling with years and years of health issues (H

has had LD for 16 1/2 years - she got it from me before she was born - but has

only been having treatment for 1 1/2 years) there is hope. It is a loooong slow

recovery for some of these kids, and they will probably always have LD & have to

be careful, but there is hope that they can move from the darkened bedroom to

eventually having a more fulfilling life.

Anyway, that is my 2 cents worth for today. I'm sitting in Mcs having an

hour off looking after her whilst she is at school & wanted to share my joy with

you all. 1 hour isn't much, but is more than I've had in 18 months, so it is

something to be celebrated!!!

Take Care

Nikki

(in Australia)