Rickets? anyone with this?

[bigbunny3]

hi, im new here,my son ahs mild quad dystonic cp, developmental delay, poss seizures, bowed tibias, and generally wonkey boy

he has just been dx wth rickets, his diet is fab, his calcuim levels are good, he is lacking badly in vit d

he has just been put on a mega oral does of vit d, with regular bloods to keep an eye

was just wondering if anyone had simliar?

i post on another forum but struggling to find anyone with rickets too

app hes the only one in cornwal at the mo!!!!

thanks

HI bigbunny

No experience with Rickets, but just wanted to say hi! How old is your DS, do you have a cause/dx for his conditions?

hiya, thanks

hope my typing is ok, beena long week and the wine is good!!!

my son is a twin, they are 3 next thursday!!!

at the moment no real reason, its not due to hsi diet, he eats fab, best out of my 4 children, he also drinks plenty of milk and is in the sunshine lots

im guessing its the way his body processes it, but again this scares me that something isnt working well

i ahve gone on and on about hsi legs for 2 yrs, they were very bowed and still are, but after routine bloods done after a abnormal eeg it was a shock to his pead to find out he had a vit d diffeacny, we got refered to a specialist who dx rickets!!

he asked em if i had any questions at the app on tues but at that point i was in such shock i couldnt think, of course now i have a 100 and 1 questions runnig roudn ym head!!!

thanks for the welcome

Hi, no personal experience, but my mums friend is part of a family that have vitamin D resistant rickets - unlike normal rickets, theirs is obvious as babies and no matter how much vitamin D they have, it still persists. I don't know whether it is apparent as low vit D levels in the body though

Hopefully you'll get to see the rickets specialist soon

Bigbunny
Can you either ask for a follow up appnt or write/email with all your unanswered questions.

thank you for the welcome and the replies

we have bloods being done wed so will ask a few questions then

I have a friend whose dd has metabolic rickets. The dd has to take medicine a couple of times a day, but since starting this she has become massively more mobile and I think she has grown more as well. I'm not sure what the pills are though. It took a good few years to come up with a firm diagnosis as she has (I think) a unique variant of the disease.