My DD has been diagnosed with Rickets!!!

[leatherlover]

Does anyone else have knowledge/experience with this? My DD has been unwell for months with periods of wellness but this winter has seen her really poorly and unable to recover well. I have been in and out of the docs surgery and hospital for tests as I felt there was something underlying stopping her from bouncing back as she should. She also had a horrible swelling in her knee joint about 3 weeks ago. The doc finally discovered that her vit D level was severely deficient and said she'd investigate a supplement but she didn't tell me it was Rickets at this point. I called back today after my DD had yet another fever and severe joint pain (to the point where she was limping) and was told that her level was 17 and normal was more like 80 so 'we're in Rickets territory'. She apologised that she'd had trouble getting dosage information and supply which apparently comes in from Germany but finally left a prescription for the supplement today. I'm shocked and angry actually that this has taken so long. I appreciate that Rickets has not been common for a very long time but even so my daughters bones have clearly been affected and her knee joints in particularly are misshappen and very painful. Your thoughts please..

[WaynettaSlobsLover]

What nationality are you if you don't mind me asking?

And I have experience with rickets, having seen it happen to a close friend. It is common knowledge about ensuring children get sufficient vitamin d but the dosage they need as individuals differs greatly depending on ethnicity and lifestyle factors. You need a spray that you can buy easily from eBay for £7 approx, that contains 3000 iu which is a very high dosage. Ask your own GP what dosage you need to give her, and ensure her diet has plenty if egg yolk, salmon and green leafy veg in it. We only get a small amount from diet and the best way is from direct sunlight. Let us know how you get on.

[leatherlover]

My DH is English and I'm a mix of english/carribean/Italian. The kids love smoked salmon but that is the only oily fish they'll eat and I don't want to make them sick of it so not every day. I can sneak egg yolk into their pasta and they will eat raw spinach with dressing on it believe it or not!! Interesting about the ebay source I will look into that thank you.

[mercibucket]

poor thing
is she being referred to a paed? i would push for this. also, a high dose vit d protocol needs careful management and a blood test to check blood calcium levels. i would want to double check dosages etc with the vit d protocol for my area to be sure the gp had got it right
once levels are back to normal, keep her on maintenance doses year round
dont supplement at the moment as she will be given a very high dose prescription
my ds had low vit d and was treated by the hospital paed, not his gp. it was not rickets though.
i have low vit d also
i am not medically qualified so this is my advice based on my and my sons experience

[leatherlover]

Thank you Merci. I will push for referral now as I think the GP is a bit out of her depth with it. She has been quite good and keeping the investigations going and not fobbing me off but she hasn't been so good at the kind of advice you've just mentioned ie the calcium absorption and toxicity if Vit d goes too high. That's stuff I've gleaned from my own research and talking to others. I feel relieved that I know what it is but upset that her bones are now seemingly showing signs of damage..she is tired all the time and her hair seems thinner..

[ellieant345]

Poor thing, my DD was diagnosed last year with rickets and put straight on the vit d, lots blood tests. just wondering how your DD is coping? Just the joint pain and hospital treatment does get to my DD, think she has lost a bit of confidence. Always v clingy now and wont join in at school, any advice?Hopefully her knees etc will look less different with time and treatment but kids can be unsympathetic when you look different.[SAD]

[mamazuma173]

Probably energy levels as well as pain> My DD always seemed to be tired after we found out. Made her a star chart for taking meds to make it more ?fun? and grown up. She takes all responsibility for that now, shes 7. School was helpful, perhaps contact them and explain? My DD missed out on lots eg. trips and had time off so was anxious not to fall behind. Think shes accepted it well, friends have been helpul and try and include her. Possibly thanks to the school being v. understanding. Was a bit teary and clingy at first but just talk it through a lot and allow questions, think it helps them process it a bit xx

[ellieant345]

Thanks, just worrying to see her seem withdrawn, plays on her own etc. Think I will push the school to include her more or for more support. Just really cant be bothered with all this, wish it would just go away! Its great I have a diagnosis but vitD hasn?t given my DD her spark back. Great that shes close to me, but just want to see her off out and about causing mischief and having fun again. Possible she just feels different and her friends are too young to really understand why she cant really run about, don?t think she likes mentioning it to them as theres tears and tantrums when I bring it up. She doesn?t like her dresses anymore and wants to wear trousers to school, just so sad to know my DD is worried about these things

[CheeseFondueRocks]

How old is your DD?

If she's not too old, the HV should have advised you to give her Vit D every day. It's standard advice.

I hope she's better soon.

[Slavetothechild]

My son was diagnoised with a vit d deficiancy about 3 months ago . Unlike these children he is 22 . Exactly the same symtoms though severe pain and tiredness it was so bad he had to stop uni . 3 months later they have managed to get his vit d level to 20 !!!!!!!!! Our dr says it will take about a year of medication to get to a normal level :( we are of italian desent and the dr says it is relevent where you originate from . Hope all these kiddies feel better soon

[12daysgonebye]

Not really sure what to recommend! My DS went through similar experience, but think some mean kids at school were causing the anxiety and clinginess AFAIK. Didn?t want to go to school, when it used to not be an issue, so gradually he became behind on reading etc. Think for him was more an issue not joining in in football and lunchtime stuff- you know boys! Friends were great, but cant really sit around every single lunch so he ended up sepdning a lot of time alone/ started ?robotics club?and loved it. Noticed in his homework book he now wants to be ?robot builder? not footballer so possibly just wait for your child to settle and get used to the situation. Think kids are remarkabley resilient at adapting, just be there an d encourage, think your DD will come back out her shell in the end.

[ellieant345]

Thanks! So interesting to hear peoples experiences, and can definitely relate, anyone experienced any new fussiness> don?t know if to do with rickets but she s changed so much, now being fussy with food and clothes, wont eat certain thinsg, wants to rule the roost in the house but wont say boo to a goose anywhere else, buried her head into me, wont talk to strangers. Took kids to get icecream the other day and she refused to give the man the money when before she would have bombarded him with questions, do you think this si also rickets> or just a phase> anything you know would help?

[12daysgonebye]

Sounds like she s desperate for a bit of control back, must be so confusing to have an illness and suddenly be restricted in everyday life. Probably v frustrating. My DS doesn?t like being away from me as much to new places eg. friends houses. Hopefuly the meds will work and settle things and the kids will learn how to cope. Think my DS definitely sees himself as different and compares himself to siblings. Tries to beat them when he can eg. Xbox, but they get frustrated when DS has days off school or stickers from the doctors.

[mamazuma173]

Think it would help just being open about these worries and talking it through with them. Hard to know whats going on inside, probably lots!

[ellieant345]

Thanks, just will stick it out. That?s quite funny but also sad you DD thought she might have caused it? defiantly good idea to talk! Not sure where its all come from but she plays operation with toys etc and ?cures? them which is quite funny! So perhaps shes optimistic about getting better too. Think meds will work, just have to wait ti out. How do you know VitD is working> what are the signs and how long has it taken you guys for yyour DS and DDS to improve?

[mamazuma173]

Yes, now she knows its not her fault, but some other kids not that sympathetic, friends are great, but some kids at school make fun saying she has the disease because she s poor (were not bad off!) so they have been making fun. When this happens she has teachers around, but still not ideal and hate knowing things like this can happen  Brother is v protective but cant be around 24/7 so what can you do apart from reassure.

[mamazuma173]

Yes, now she knows its not her fault, but some other kids not that sympathetic, friends are great, but some kids at school make fun saying she has the disease because she s poor (were not bad off!) so they have been making fun. When this happens she has teachers around, but still not ideal and hate knowing things like this can happen  Brother is v protective but cant be around 24/7 so what can you do apart from reassure.

[12daysgonebye]

Agreed. Kids always pick on someone, and its terrible. Just be there to reassure and talk to teachers and make sure they have good friends to rely on. My DS wasn?t himself before school. Anxious etc and pretended he had a headache a few times and seemed v. quiet a few times.think before we talked a lot, he thought he was like the only one with rickets/different but now he understands more and that helps! Love being able to talk to my DS but wish it was under different circumstances. Think its more annoying now than anything for him, hope meds make a difference!

[ellieant345]

slavetothechild hope your son is okay, must be hard having to re-do uni, so once the medication starts will be back to normal? or does he suffer from the physical effects too? best of luck

[mamazuma173]

things getting better- went into school for more support and doctprs helped with advice on food etc, dont give up! theres always people to talk to and ways you can make everything run smoother

[mumofone311]

My son 15 months has been diagnosed x I don't understand it x were Caucasian we take supplants and eat healthily x feel terrible x waiting to get blood tests for me as mate tea because my milk is deficient