EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

reindeer We have already seen the OT and she has said what needs to be done at school but the school won't do it unless they have it in writing and they can't get hold of the OT. In answer to your previous question DS2 hasn't got a statement as such but the senco is going to apply for "extra funding" which is the same thing in our LEA. I think it's meant to make them or the school sound better if they only call it a statement for the children with learning disabilities .

THC. That must have been so scary. Glad your DS is feeling better. I had a feeling DS2 was too young for a diagnosis. The paed at our local hospital thinks he doesn't quite fit in with EDS but I think that's mainly because there aren't many people who display symptoms from before birth. He seems very similar to other young children who have EDS to me.

Ellie which LEA are you In Birmjbgham way by any chance and sorry to pop your ballon the extra funding is not legal there be no entitlement to any help
I would suggest you apply for statement yourself . This is the only legal binding document

Ellie yup ds3 issues were there from birth and truth I did not think he get label of EDS or did out then community paed she only refered I think to keep me quiet ( I did enjoy copying her into the letter )

No we're in somerset. I'm still trying to get my head round the education system here. Thanks for telling me about the funding, I think applying for a statement is going to be the way to go.

I've noticed from being part of various forums that children who have symptoms from very young tend to have development delay and hypotonia as well but some of the proffessionals who DS2 sees say that he can't have EDS because he also has hypotonia and development delay. The rest of his professionalls think he has EDS and some other unidentified condition that causes hypotonia and development delay. [bangs head against a brick wall].

RNHRD in Bath
Lovely old building, a bit run down inside, a bit disorganised, but lovely staff, very helpful. Didn't feel much like a hospital, more like a local council offices converted out of an old house. DD1 ( who gets very stressed at the idea of hospitals) liked it, said it wasn't scary.
Saw a Dr Jenkinson was was also very nice and approachable, very thorough and not jumping to conclusions re a diagnosis (Dd was referred because of joint pain and DD2s EDS diagnosis). He's an adult rheumy though so not one to add to the list for DC.
DD had an initial consultation and examination (prob 30 mins or so), then bloods taken and X-rays done, then we saw him again to discuss X-rays, and what to do re pain till blood results are back and she has a follow up appt. all in all we were there for 90 mins
Dr J knows his stuff, although not an EDS specialist. He's diagnosed DD with JHS rather than EDS, but as that makes no practical difference, I'm not fussed. Assuming there's nothing else in her blood tests ( there's the possibility of other rheumy stuff which we knew about) then he'll send her up to the physio people at the hospital to see what they can do to help.
Dr J has a lot to do with Sports Medicine at the uni (they have a fab sports centre there - we saw some of the Chinese Olympic people today - coaches rather than athletes judging by age ), so was quite proactive re the activities she does. He did the same "aha!" that Prof G did when we mentioned ballet, so that must be on the EDS diagnostic training manual .
All in all it was a very reassuring day for DD, and I'll add Dr J and the RNHRD in Bath to my list of Doctors And Hospitals Who Know What They Are Doing.
Not sure where DC go in the Bath area, but for adults, it seems OK

Midnight - thanks for the update....hypermobility freindly places are always good to know about!

Reindeer - my ds has one to one funding from the pct for his eds alone. It is reviewed annually, but they have basically promised it until he leaves primary school. I got it by contacting the sn assessment team at the LA, originally to discuss a statement. Ds doesn't actually have a statement, but he still gets support from pdss (physical disbailities support service) and the pct funding. It was granted because of the need to have someone with some paed frist aid training to deal with his cervical dislocations, to medicate him to manage pain, to reduce no of hospitalisations (we had 11 in 12 months in the year we applied), to reduce school absence, and to do physio and gross motor skills and support writing. They were taklling about doing matched funding from la and pct, but in the end the pct picked up the bill.
We use heat pads and wheatie bag for ds, it helps reduce muscle spasms, but that is all it does really.

My ds was dx by prof g when he was very young, but this is very unusual, and I already had a dx of eds myself. Prof G was absolutely right though in identifying ds' weak joints, every one he picked out has proven to be a problem. at neuro getting wrong type....another example of an consulatnt who won't listen to parents.

oopslateagain - welcome to the thread. I have seen prof G a few times for me and once for my ds, he was very thorough, very understanding and supportive. I had blood tests, xrays, family history taken and filled out a questionnaire with him, as well as physical examination. Nothing to worry about, he knows what he is doing.

Mad - Hi welcome to the thread. Deepbreath is around somewhere, she is our resident marfans expert! I am not very knowledgeable about marfans specifically. However I have done a drugs trial myself for my asthma which is eds related, and didn't find it too onerous. Such a tricky one though, cos someone has to be the control subject and therefore have nothing....sorry am not being much help.

THC - OMG is he still all right now? Has he been discharged? Poor little guy, and poor you, haring across london streets....very very scary.

Ellie

Your pretty much describing my ds3 to . They still think there's something else on top of the EDS . Hence the DDD study . If need hand just yell about statement stuff

But he defintley has EDS

Sparkle Ds school so much better than the last

And yup were home but Ds in August will need to wear portable heart monitor for 24 hrs as seems he has iregular heartbeat and want to see just how iregular .

And on good news side the referal to Dr ninis has been done by the GP he agreed that needs looking at and is impressed with Proff zg report so just need wait hear from her

Midnight glad appointment went well

thc - have PMed you.

ellie - I'd say push for a statement as much as you can - at least that way there ought to be funding ring fenced, rather than relying on an individual school to find spare in theri budget.

THC maybe we have discovered a new type of EDS, congenital type. [adds medical discovery to CV]. SENCO is in school tomorrow so will go in and nag her about a statement. She has said before that if DS2 gets extra funding they won't use it for a TA as with all the TA's for the children who need full time 1 to 1 plus the class TA and the parent helpers it's going to be quite crowded in the class so DS2's money if he gets it will be spent on "resources" for him. Not sure what though as all the ramps, grab rails, toiletting stuff and chairs are (hopefully) going to be sorted by the OT.

yup she could mean books etc but its tough if he needs 1-1 then can mange .When ds was in ms there was teacher ,class Ts and 3 TA for other kids that needed them

which is why you need statement to make sire he gets OT program etc
ellie here is a template

www.ipsea.org.uk/Apps/Content/html/?fid=89

I am off to see the head today re dd's hypermobility. oh yippidy doo. they removed her iep and had a review in feb without involving parents so I am a little annoyed.

wondering how bad the hypermobility has to be to get help. I will be reading back.

Just catching up with last few pages
DS3 has been referred back from GOSH to local hospital as his eating difficulties are purely physical and need monitoring and they're not looking for any other causes.
DS1 has been having sensory integration and they have informed me that DS1 still has no hand dominance. Anyone else's DC finding this?
Also had DS3s teacher speaking to me today re 'I've been noticing that...." which also sounds a bit like DS1s dyspraxia - or could there be a link to hypermobility?

Auntevil - my ds does not have dyspraxia but his hypermobility gives him physical difficulties which are shared with dyspraxia.....having said that there are others on here who have discussed direct links with dyspraxia. My understanding is if they have the learning side of dyspraxia as well as the physical side then it is dsypraxia, if like my ds it is just the physical side then it is eds/hypermobility. Is that right everyone

THC - I am so glad you are home. The 24 heart monitor sounds like a good idea, hopefully it will help you to get a better picture. (hopeful emoticon needed)

redwhiteandblue - welcome to the thread...you don't have to attempt to read back over our inane drivel (well that refers to my comment ) to find the to good bits, of which there are many....we can all do a little update about where we are/experiences if you like, or just launch in and ask questions the poster on here are a fountain of knowledge.....some are even discovering new branches of medicine aren't they ellie

We are in boom and bust here.....ds pushed himself so hard at residential , he is now cripple with shoulder and neck pain and the veins in his feet have collapsed again......hmm what did that rheumatologist try to say it was chilblains....now I know we have had a bad summer but really

actually more than

Hi red White blue
Gatecrash away

It may be worth seeing if school will get the PD team involved for advice or asking pgysio to refer to them .

It varies on what's available in school how dies it affects dd ? Maybe be worth having a think what you want in way of help so have clear idea

As for iep meeting tell them you have not signed the iep of si not relervent to have cancelled it. How is dd coping in class is she struggling to keep up ?

Run down I have 4dc , ds1 hypermobile and handwriting was a pita but no real issues . Ds 2 hypermobile but no joint issues bar handwriting , dd has eds 3 ahich affects handwriting abd her knee caos starting to go just got regered ti Ot
Then we have ds3 who has EDS 6 he has major issues affecting fine and gross skills . He has had a statement since age 4 had 1/1 in mainstream then moved to speech unit as has verbal Abd oral dyspraxia to so 10 in unit and 1 teacher ,one TA one therapist and Seperate playground so is safe from physical knocks , like Ellie Ds mine also has delay and possible chromosome issues going on
Swimming /PE he needs 1-1 or 1-2 needs help changing etc uses wheelchair for distance
So needs quite bit of help and luckily it's all tied into his statement .

Aunt

Yes Gosh not interested as ds3 eating is a physical issue between his affecting his jaw and his oral dyspraxia affecting the muscles in his mouth .

Sparkle
Arghh for chilblains glad he enjoyed residential but hate the fact they pay such a high price for it Has Ds finished school for summer so can have time to recover ? .oh I did ask Proffesor G and raynuads is common in EDS as the veins are stretchy to

Hello, just had a very quick catch up!

hope everybody ok.

We have had really busy few months, nobody has been very well at all with various things, dd1-pain, fatigue problems with POTS.ds same as usual, painful legs,dislocations.dd2 AWFUL problems with stomach/bowel and has either a hernia or some sort of lump above belly button causing her a lot of pain.

ds2 doing ok, can already tell he has eds though he has really clicky ankles and back and 'feels' like he has when handling him.

Still struggling with dd1 dla appeal, despite letters from school, consultant and physio they are still saying no. i did a weeks symptom/pain/help needed etc diary which they seem to have ignored.she got dla no problem for 6 years and nothing has changed but suddenly they are saying she is "no different to any other child her age and does not need any more help,guidance or supervision than any other child her age" and even decided that she is apparently "capable of being unsupervised as she can request help if needed" what?? dd1 is 10 and I cant even let her have a bath unsupervised due to dizziness/fainting or if she slips and dislocates.they are going on that she does not need extra guidance etc when out as well but she does as cannot walk far etc.

Feels like im banging my head against a brick wall they will not accept anything I say

Oh arians sound like got your hands full and yup I'm dreading the DLA renewal next year suspect were loose it

Who is Dd under for the pots ? any chance of gastro referal for dd2

am LOLing here - DD1 letter from the doctor in Bath says "no family history of Joint Hypermobility Syndrome". Hmm yes, so what about DD2s EDS - hypermobility then? The one that's identical to JHS? Ho hum, not that it matters really, as he's going to refer for physio in any case, but that's marked him down a bit on my List of Doctors Who Know What They Are Talking About? .

Ariane - I thought DD2 at 14 was considered incredibly young to have PoTS, it must be hard for your DD to deal with at 10. Who is she seeing for that? Can some of the disability charities help with the DLA claim? Or what about the STARS people, they might be able to help with whatever the new "trigger" words might be?

dd1 was couple of weeks off her 8th birthday the first time she had a pots episode and fainted but it was only a few months ago we got a definite diagnosis before that we were told she suffered from 'intermittent tachycardia'.She gets dizzy quite a bit and things like getting up too quick trigger it and also having a bath too warm really affects her. At the moment we are struggling a bit-between all the dcs and the fact i (still) cant drive we are pretty much housebound as none of the dcs for various reasons can manage getting out and about, dd1s taxicard even got taken due to dla being stopped so only have ds1 now to get around if we have to-AND they decided to halve his number of yearly trips.We had got a blue badge for him (dh drives and we use it at weekends) but apparently because we have the badge they can halve the taxicard trips (bit mean i think).

I have never heard of STARS I will look it up, clearly iam doing something wrong as dd has not changed since dla was first awarded (if anything she is more unwell now) so either iam wording it all wrong or they have drastically changed how they do things at their end.

Just a word of warning if anybody is wanting support for dla from GOSH-S poke to our genetics consultant recently, apparently gosh consider that children with eds should not have extra help e.g buggies, wheelchairs etc and do not take a sympathetic line if asked for reports for dla purposes, in fact they will not even refer to eds as eds rather preffering to call it joint hypermobility syndrome and although eds is listed with dwp as a condition you CAN get dla for, hypermobility syndrome is NOT.

Whenever i have taken dcs there they have said a lot to stop using buggy etc despite me trying to explain dcs really cant walk far.

www.stars.org.uk - charity for different types of fainting. Sorry cant link properly as am on phone. The admin woman was incredibly helpful to us last year.

more bad experiences at GOSH

Arriane we had exact problem even though ds 3 has dx of EDs 6 from Prossesor Pope ,
till Ds collapsed in a physio session and they could not throw us out quick enough and physio wer elike hmm he has more problems we wont do anything hasty as discharged us from their clinic as to complex as other issues told me go back to local paed and ask for help .

Luckily saw Proffesor G who did cracking report for us and wrote to Gp suggesting we go to st marys

I am just so angry about the whole situation id like the dla decision maker who thinks dd1 is same as any other child her age and those at gosh who are telling me no buggy/wheelchair/extra help etc to have to be me for a week and see exactly how difficult things are.

The dcs problems affect EVERY aspect of our day to day life, I cant even leave the house without wondering how i will manage and most of the time i realise i wont be able to manage so we cant go out.

From the minute we get up its physio for dd1 and ds1 then its a case of dealing with what the day throws at us be it pain, fatigue, dizziness, fainting, dislocations, allergic reactions or crippling stomach pains.I am exhausted by it all and just feel overwhelmed by the whole appeals process, apparently i now have to wait another 11 weeks then they will schedule a hearing.All i want is to try and make dcs lives as easy and comfortable as i can and everybody seems to want to make it harder for us.

THC, sorry to here a bout DS3 hope he is Stable and out of hospital.

For anyone who wants help completing DLA forms, I have filled out the best part of three/four booklets. I unfortunately know what to put, so if anyone wants any help just PM me and I'll see what I can do to help. My DS is not in receive of DLA for EDS but I've had nurses teach me how to word them to make sure that the recipient understands the serious nature.

Problem with EDS /POTS is the lack of knowledge. We are under several specialists none of whom have any idea about EDS and the fact that the same professors keep appearing in this thread for the whole country is a shocking realisation of how little is understood about this.

Thank you to Ellie, Sparkle, and THC for the funding info, I have wrote it all down. I finally got a copy of DS's IEP on Monday, but it's been a busy week so I'm having next week off everything (well apart from the two ore existing appointments we have). We have a two week four of IV antibiotics coming up, then about four appointments the week after, including our OT assessment. I have written all the much needed info from this thread and the last thread down and intend to get cracking on it in that period.

DS seems to have been better since holiday but he got a bloody cold last week so we've got a huffy, asthmatic, child this week. He also has been having horrendous stomach cramps, which I've left a message for his dietician as I'm not happy. Lots of leg pains (seems to happen more when he gets run down, especially just at the end of term). Again lots of heat patches, paracetamol, baths and massages - if my boy was shook he would rattle the amount of pills in him .

Hi to red white and blue, auntevil, ariane, and ishallwearmidnight. DS doesn't have POTS or any related symptoms but I sympathise and hope your DDs/DS's are ok.