DD is 13 and has ovarian failure, brittle bones, and is growth hormone deficient. Help??

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I can't remember if I have posted this before. DD is 13 and has ovarian failure. Also has growth hormone deficiencies and is not growing as tall as she should. She is probably the height of a 9yo. Also has osteopenia (brittle bones). All of these is due to chemotherapy as she had two types of cancers previously.

Anyway. Wanted to know if anyone has undergone this before, the ovarian failure in particular. What treatment was given, were there any side effects. DD's endocrinologist wants to put her on estrogen to kickstart puberty. But it will fuse her bones and she will stop growing. So I am thinking of asking to delay it for a year. But she will need it to boost her bone strength, besides puberty. Also, her endocrinologist does not want to give her growth hormones as they may cause malignancies, and she is at high risk.

I feel like am running out of time, as she is already 13....also if anyone has any ideas on how I could possibly push her height even one inch, I would be grateful. She is currently on Calcium and Vit D3 for her bones, although she doesn't like the taste of the calcium so doesn't take it most of the time. Her doctors have told her to take more dairy and exercise at least 3x a week. She isn't naturally very fit, as she has been in a hospital bed for most of her childhood, so we are slowly trying to get there...I have been trying to get her to swim at least once a week but even once or twice a month is not easy. Plus she is prone to pneumonia and has it a couple of times. We try to go for walks in the park but she gets fatigued, and has leg pains, especially after school. We have started doing yoga which I read is good for bones, I just hope we can continue, and am also looking for other ideas. I read dancing is good, but she has never gone for classes and is worried about looking silly. Even the yoga, she was moaning and groaning the whole time before the class, saying it was embarassing, and she will embarass herself. Teenagers!!!! Although in the end, she seemed ok with the class, so hopefully we will go again a second time. Anyway, just need some advice, or even hand-holding, anyone?? I really don't know what to do.

Oh goodness, I'm here with a hand to hold, hoping someone will be long with advice shortly.

Thanks 3littlebadgers...

It sounds like you are trying to start the exercise from too high a starting point. After such a long illness and underlying health issues she needs to gain stamina and confidence slowly.
Approach like a physio work out what she can do confortably and build little by little from there. Can she walk to the end of the block? Brilliant praise her for that and do it 4x a week and then build on.

Could she do yoga at home? You can subscribe to classes online, or there are plenty of DVDs and/or YouTube clips to follow. It would be really good for strength so if she can find a way to continue it, that would be ideal.

I'm sorry, that was my one and only idea.

Weight-bearing exercise is best for bones, so walking to start with, and build up as she gets fitter. Yoga and pilates both good so if yoga doesn't suit after a few weeks maybe try pilates. My pt always says you need to try a new class at least 3 times before deciding its not for you. Also avoid fizzy pop as they can inhibit bone formation and make bone density get lower - small effect but every little bit helps.

Ah thanks Fletchr. Yes, maybe I have been a bit too ambitious. Thanks for the tip.

Firstseemit, yes I did think of that, but we are both couch potatoes tbh and I fear if we didn't join a class, we would end up doing nothing !

Thanks knottyknitter, will keep pilates in mind. luckily she hates fizzy pop! But she also doesn't really drink milk either, she just likes to drink plain water...

If she doesn't like to drink milk what about other dairy rich foods - yogurt, custard, cheese? Green leafy veg is also good for calcium.

Wrt exercise try out stuff that may be fun on a one-off basis - an afternoon of canoeing, or hire bikes for a day, or a trip round a local attraction, or an afternoon shopping even, as well as a regular class.

Have you contacted the child growth foundation? Check their website. If she's growth hormone deficient, maybe she needs treatment. Have you had a second opinion?

Hi,

I am sorry about your daughter. I can't help with most of it, but I do know that you can get Adcal D3 caplets; these are pretty (impressively!) large so a bit imposing to swallow but much nicer, I think, than chewing the horrible chalky things. My compliance was also terrible until I discovered the caplets. They do need to be prescribed and I suspect cost more than the chewable tablets, hence them being kept quiet!

Have you thought about something like geocaching as a way of walking round a park, or similar, but with lots of distraction to help with pain? Or dancing with a wii fit? It is true that exercise needs to be weight-bearing to assist with bone density. Good luck!

You sound like an amazing mother. I am sure you are doing absolutely everything you can.

So sorry you have both been through this
bump really as I have nothing useful to add. You just sound so brave.

If she is embarrassed by yoga class look at yogawithadriene website. Teacher is cool and funny and really focused on finding what feels good. Some videos less than 10 mind.

I can't help much but just wanted to say, that I started my periods at 15. I was desperate to start them and whilst I was amongst the last to start, I wasn't the last. My son is 13 nearly 14 and showing no signs. Am sure he wishes he was changing like his friends but there's not much he can do and he seems happy. If delaying helps then go for it.

In terms of exercise- maybe just starting with a daily walk and building up?

I'll second Yoga with Adriene. Best & coolest yoga teacher ever. And the emphasis is on going at your own pace and listening to your body and accepting and loving yourself. She could start with 30 days of yoga which is very gentle then move on to Yoga Camp and then Yoga Revolution.

If it's osteopenia and not osteoporosis then there is still a good chance of strengthening/thickening her bones. It's the stage before osteoporosis so not yet brittle bones just thinner for her age and this can be improved upon. Have they been giving her calcium Supplements or medication to improve her bone density? It may be that they could spend a year or so doing this first? I don't have chemo experience but do have osteopenia.

What a horrible thing for your dd to experience at such a young age. I wish her well OP.

Sorry you're having to deal with this. Treatment for childhood cancer has so many shitty after effects.
So you're having to choose the right time to give her oestrogen which will stop her growing. What a tough decision. I don't have any answers, I'm sorry.
How about just a walk round the park in the sunny evenings?

You can get calcium supplements in liquid form or as fizzy tablets which dissolve in water which may be more palatable
www.amazon.co.uk/Vitabiotics-Wellkid-Calcium-Liquid-150ml/dp/B01AI0EWJ6/ref=sr_1_11_a_it?ie=UTF8&qid=1491416139&sr=8-11&keywords=Calcium+liquid&tag=mumsnetforum-21

This may not be helpful but just in case...are you happy with her endocrinologist? My DD has a rare bone disease which, in some of its manifestations, has endocrinological complications. Limited growth, brittle bones, problems with puberty, etc are often part of these conditions and the doctors who help these children are more used to the complex complications. My DD is looked after at the Sheffield Children's Hospital and it might be an idea for a second opinion.

Hope you find a compromise your DD is happy with.

Have they talked to you about treating the brittle bones with bisphosphonates? Dd has osteogenesis imperfecta and was given these to improve bone density, as far as I was aware they are also used to treat osteoporosis.

So sorry you are going through this.

I'm not an expert but I had an early menopause due to cancer as a teen. My doctor advised a high impact exercise to avoid brittle bones. I do fell running now which I love, but it took a long time to build up to it from being very inactive.

Walks with a bit of interest are the best way to build stamina and strength imo. Geocaching, treasure hunts (www.treasuretrails.co.uk) orienteering, even golf? Start small and build up to more hilly and faster walks over time.

Trampolining is great as an impact sport that's popular with teens (obviously check with Dr first!). Is there an indoor trampolining park near you?

How about getting her a fitbit if she enjoys gadgets? You can set a daily step target and get graphs of how much you've done each day. It syncs to a smartphone.

I posted this on a thread yesterday I think but a good way of getting calcium into kids who don't like dairy is Best of Both bread by hovis. It has 255 mg per thick slice.

(I have a child who is on calcium supplements and, coincidentally, on GHT for very different reasons.) Luckily at the moment, his soluble calcium tab goes down a gastrostomy tube which makes things easy.

But the bread thing is a good one. I think I read that on here a couple of years ago and checked it out.

The Wellkids calcium supplement is quite chalky but not terrible. My dc has oral aversion so not great with new things. There is another supplement Kindervital calcium which is more fruity tasting and not chalky. It has nothing like the content of the prescribed stuff though - about 240 mg per 20ml dose from memory. But every little helps.

I hope you can come to a workable solution for your daughter. What a lot she's gone through. I second calling the CGF. They are lovely and helpful, sometimes even to recommend endos etc. Best wishes.

Just adding to my previous post after thinking of the ways i manage to persuade dd (15) to get exercise. No health concerns but she's far too self conscious to go to classes etc.

She will play on the wii for hours. Especially with friends. Just dance is good.

Last summer she got into pokemon go. Does that still exist?

Would she be interested in joining scouts or explorers or similar? They can be very nurturing if you find the right group and might help her to be active without all the emphasis being on that. Similarly volunteering eg with animals or environmental stuff.

I cant help with the medical stuff but I can really sympathise with the feeling of being the "cancer kid" at 13. It's an age where you desperately want to fit in and be normal and yet everyone knows your business.

Does she like dogs? Maybe walking a dog will motivate her. Borrow my Dog or someone in the neighbourhood who needs help with their dog would be a good place to start.

Wow thanks so much for all the responses and tips and hand-holding. Gotta love Mumsnet!

Barbarianmum, DD does eat a lot of yoghurt, will try to get more custard and cheese inside her too. I did initially think of biking, and dusted off her old bike we got when she was 9, and pumped in air into the wheels, she can still ride it! But then I read that cycling actually decreases bone density!!!!! Who would've thought???

Bebraveagain, yes I was pushing for her to get growth hormones but her doctors have said it is too high-risk as there is a concern for malignancies with her past history of two cancers.

oxcat1, thanks for the tip. will check it out. her calcium and d3 is quite high dose though, so it is hard to find anything in high doses that taste good! she did used to play wii! but then sprained her ankle during one session....

dantdm, thank you so much. Wait, are you THE tandtm?? my dd is such a huge fan...

stuffofawesome and user, ok will check out yoga with adriene, never heard of her, but will look. the good thing is that she is enjoying the flyoga immensely, and she is also pretty good at it!! She wants to do it every day but I can't afford it haha. I am rubbish at it however. Now if only she would agree to going by herself...!!!

Tebagtits, yes she is on high dose calcium and vit d3. She takes the Vit D3, but she hates the calcium, so her compliance is almost zero...I try to stuff her with a lot of yoghurt...am also trying to introduce prunes into her diet, apparently they contain a lot of boron which is good for bones.

teaandkitkat, yes thats exactly it. trying to find the right time. its tough. yeah, will have to try and take her for walks...

thanks Andromeda...

We have seen four, possibly even five endocrinologists in two different countries now...but yeah maybe we havent found the right one. Do you have any email contact for the ones at Sheffield?

imnotalpharius, no never heard of biophosphanates! what are they? will check it out.

TheDonald, am sorry to hear that, what age did you reach menopause? What is fell running? It sounds like I should check out geocaching and fitbits...I am not sure if she should trampoline. She fractured her heels once while skipping rope. But will ask her doc.

Latinfortelly, thanks so much for the tip. Unfortunately my DD is an extremely fussy eater and does not eat bread :( Will check out the CGF, as you are the second person to recommend them. I may have added them on fb a while back but will check back.

TheDonald, dd was into pokemongo last year but somehow the hype died down? maybe i should restart. wii seems to be a popular suggestion, will dig it back out from the store room and make sure she wears proper supportive trainers this time while doing it. she sprained her ankle the last time she played it!!!

Booboostwo, She loves dogs, but we have never had one, and I would not know how to handle one, so perhaps not...

Thanks everyone for all the tips, love them all, such great ideas

TheDonald, forgot to mention she is in girl guides, was in brownies before n i do try to encourage her to take part in fun activities and stuff. but her new school now does not seem very active in organising GG activities which is a shame.

I know exactly what you mean...we saw specialists in three countries over four years before we even got a diagnosis! For what it's worth the Sheffield team made the best impression. There were 7 specialists waiting to see DD at her first appointment including a physio so they really looked at all aspects of her care.

The metabolic bone specialist is Dr Arundel. I don't have his email as we are with the ortho team now but your GP should be able to refer you and they also see patients privately. A lot of patients there are on biophosphates so that might be worth exploring with them.

Borrow my Dog allows you to take someone else's dog for a walk so you don't need to know anything about dogs. Your local dog charity may also be looking for volunteer dog walkers, again something you can do with no knowledge and very little commitment.