Joint Hypermobility Syndrome & School Attendance & Immunity Issues - Some Advice Needed From JHMS Parent Please...

[rockinhippy]

I know theres a thread for JHMS & EDS somewhere, but I cant find it, so hoping some of you other parents of JHMS DCs spot this here :)

My DD who is now 10, was diagnosed relatively recently after years of problems, things have definitely become worse & more obvious for her in more recent years, hence why I think we finally got the diagnosis, prior to that, with both DH & I being "bendy" we never actually realised it could cause health problems, though I now realise its very likely the true cause of my Fibromyalgia & M.E. diagnosis too & I have an up coming hospital referral for diagnosis myself on the advice of our GP.

So in short, I'm well used to dealing with the symptoms that I now know can come with JHMS, but what I'm floundering with is School & whats best for DD - I should add her school have been very supportive, but we are still in that limbo stage or waiting for the OH appointment & every time I ask GP or school nurse for advice they just refer back to OH - which is a 6 month waiting list for an appointment, let alone actually seeing them.

This last few months, DD has had almost back to back cold & flu viruses, she just seems to shake one off, has a couple of days of feeling well & then off we go again - she's missed a lot of school as a result & is home again this week - which resulted in my getting a text from the School before 10 this morning telling me DD hadn't turned up for School & I needed to update as to why - puzzled & not best pleased as I have rang in everyday & was up most of the night with DD coughing, sneezing, retching, very sore throat & generally feeling awful, me too for that matter - so we were desperate for a lie in :(

I'm waffling my question is, how do you cope with School attendance & JHMS DC -

have you noticed they are more prone to picking up viruses & take longer to shake it off.

or is the JHMS flare up, very similar to flu, as it is with FM ?? - I ask as DDs specialist did say when diagnosing her that FM & JHMS are closely linked & I know that if I over do it myself, I get flu symptoms, but pushing through it & staying busy will mean I don't get better, but worse - which is what I am worrying is really going on with DD & why she keeps getting flu symptoms & that sending her to school as I'm encouraged to do unless vomiting, diarreah, high temp etc, is the real reason she keeps getting so ill - I would get more ill myself if I push through it, so have learnt the fastest way to get better is to rest & nothing else - is this how it works with JHMS too ??

I should add she loves school & hates staying home, not least because her being absent often means her going back to problems with the class Queen Bee - QB likes to wind others up against DD in her absence, saying DD lies about her illness, special treatment etc etc - but when DD is at school the others don't listen - IYNWIM - so DD much prefers not to be off sick at all, but she is so ill sending her in isn't an option - when I have sent her in ill, she ends up getting sent home any way

How do you all cope with this aspect of JHMS in your DCs

TIA :)

[roundabout1]

Hi Wanted to bump a bit for you. Can't help regarding the JHMS but I can really sympathise with the attendance problem. My dd has had very poor attendance for over a year now due to Chronic Fatigue. She too has huge problems due to certain dominant girls in her class. When she is attending she is fine & happy to go in but then it just takes a day or a few days off to totally knock her confidence. Girls are ganging up on her & she even her best friend is changing her alligeances somewhat as she is looking out for herself for the inevitable times when dd is absent. She too is ill for longer if she doesn't rest up as some as the lurgy hits, if she carries on it just seems to take longer to recover.

[rockinhippy]

Thanks roundabout - that all sounds so familiar, kids can be so mean at times, hitting out at vulnerable DCs :(

• if it's any consolation, it was a lot worse for my DD last year, QB really seemed to take hold & control the group for a while making my DDs life hell, especially so when she was ill - things have levelled out a lot now, thankfully DDs teachers have been on the ball this year & kept on with meetings between the girls, doesn't stop QB, but does stop the others joining in & she keeps a lower profile IYSWIM, so generally it's nothing like as bad as it was, her friends have realised what goes on & now don't listen to QB - doesn't stop QB trying, but generally much better - hopefully it will go that way for you DD too,
  

I feel for you with your DD having CFS, my DD was first thought to have that too, her symptoms showed up more after a traumatic stay in hospital at 5 -,I also have that diagnosis as well as FM, so I do know they are very similar to JHMS & FM -

I hope you don't mind me suggesting, but there is a food supplement that we've found really helpful in the past, it got DD up & back to full time school & rosey cheeks again after she was very ill & i was tearing my hair out, still works wonders for boosting DDs general health when shes ill now - I can't link on this right now, but its called Spirulina it's not a herb, so is safe with most things & for DCs too - I find it good for myself, but had to stop as its high in potassium, which I've now got to be careful with

Good luck & thanks

[rockinhippy]

Meant to add, it doesn't stop DD worrying QB will be at it again though, but anxiety is a symptom of JHMS apparently, so all I can do is remind her of that & fingers crossed when she goes into school

[roundabout1]

I am glad school have been on the ball. School have been less helpful with us regarding the other girls. I dont know if its because they are younger - Yr 3 & dd is quite sensitive so they see it more that dd is being over sensitive about it, although other girls have had similar problems too. How do you take the Spirulina? My dd is so fussy with things, is it a powder you add to things & does it taste? I have heard of the benefits of it & been tempted to try it for dd (&myself!) but fear it may be a waste of time with dd due to her frustrating fussiness!

[rockinhippy]

I think it can depend on the teacher if its taken seriously or not, last year DD had a male teacher & fantastic as he was in other ways, he initially handled the bitching at DD really badly, blaming DD as she was the only one standing up saying the opposite to QB & the others she had manipulated into it, thankfully one girl did eventually speak up & tell the truth, but DD was heartbroken not to be believed, took my going up to the school & demanding to know why the girls hadn't been spoken too separately before it happened though & thankfully since then they've been really good, definitely helped by this years teachers being female - sometimes guys just don't get how girls can be.

We buy Spirulina in pill form, but I've found you need to be careful which brand though, as some are bigger pills & a bit powdery so can be hard to take, so I doubt your DD would get on with them, as mine struggles as do I, the All Seasons are very good though, still all natural & the same dose, but a more compact, less powdery & smaller pill, mUCH easier to take - BUT I can't buy these in the shops around here anymore & I had to order online direct from All Seasons, but they were cheaper than I had paid before & arrived quickly.

You can get it in powder & I know some it into smoothies, cakes soups, all sorts, but I personal don't fancy trying that as I've found it tastes pretty awful when I've used the more powdery pills, but it is really good stuff though, so much nutrition in it & an immune boosting enzyme too - I did take it for a long while & it helped with energy & immunity a lot & really miss it & notice the difference now I can't take it anymore, but as I said, its high in pottassium & I have to take a high BP drug that means I have to avoid anything high in that.

The other thing I've found really helpful & might be worth your looking into is Sea Kelp - it was recommended to me by a friend of DDs mum & I knowcshevgives it to her DS who is 10 & has done for years, but reading up on it, I do think its one you need to be abut more careful with, it works on the thyroid, which for me was brilliant, I had suddenly so much energy & really felt alive again, but even though I don't have thyroid diagnosis, there is thyroid trouble in my family, which is why it might have been so good - you do need to be careful with some health conditions & some medications, but I would definitely recommend at least checking it out.

I'm currently off that too, but hoping I can go back on it, but waiting on seeing a renal doctor as mŷ kidneys playing up, so I'm nervous of taking anything at the moment until I get the okay from a kidney specialist.

HTH

[roundabout1]

Thanks for all that info. Girls can be really horrible & I suppose this will always be underestimated by men, we know better! I am glad the situation is being dealt with well now though.

[bluetack]

DD2 is older (now Y10) and the bitchiness stuff has stopped a bit/she's better at ignoring it. She has had loads of time off school (not with EDS but with POTS - fainting); Y9 attendance was 60%; currently working at 88%. Her school are great with her, but we sorted out a written care plan with them, and that, combined with a couple of consultants letters, and support from a charity, has helped massively.

DD has a really supportive group of friends though (none of whom are "cool girls"), so the odd few girls who are bitchy can be ignored more or less. DD is working on her withering "don't be pathetic" look to be used when one particular girl starts on about "oh, she's such a faker, I've never seen anyone faint like that before, it's all just for attention" rubbish .

OP, could your DDs school institute some kind of "friendship circle" to "look after" DD, then they would be in a position to stick up for her when she's off? Or at least report it to the teacher (in DD3s school if this happened a few times, the QB would be spoken to about tolerance, understanding and not being a bitch (possibly not phrased quite like that ).