[Myprincesses]

Not sure if I can create one. But lying here wide awake (yet again!) I thought I would as so often i find the same group of people addressing the questions related. We all seem to be fighting very similar battles.

As most of you know my DD1 Ayisha was diagnosed with severe BJHS at 26months. I was diagnosed the same day. She is now 5next month and going great. The fatigue and poor core strength are her biggest issues. She uses an electric wheelchair or kaye walker for community access as she tires so quickly. She also wears theratogs (our wonder suit) which provides support but more for pain relief (well so I discovered in the last 2 weeks). She starts school next year.

We recently moved to Sydney and have had a nightmare sorting out therapy! Long story as a few of you would already know. The icing on the cake was when the CH OT told me that she has no real issues with her fine motor skills. Which I replied 'it is great considering the hours of work we have put into therapy for her... It is a massive improvement on 6months ago'. She then proceeded to tell me that that isn't possible as kids with hypermobility can't improve their fine motor skills.... What the???? Firstly are you calling me and our previous therapists liers? And if we can't improve fine motor skills why come to OT then? Um and also.... I am an OT!!!! OM goodness. She then didn't even give me anything to work on at home... No that's not right. She did. She said in passing oh maybe she has poor shoulder control. No suggested exercises, activities or anything...

Then the PT told me that Ayisha doesn't need ramps at school next year as she won't be taking the walker or wheelchair..... So who is going to carry her when she is tired??? Um yeah. Think again.

Honey murcott.... Would you mind PM your OTs number for me. And does anyone know of a good PT who uses theratogs. I am very willing to travel if necessary. I need descent therapists!!!

Sorry for the vent.... Things are frustrating! People just need to listen.

How is everyone else doing? How are the kids? I hope things are going well.

[Cat©]

I am so sorry you are having so many issues as well.

I get so peeved with EDS - from the point of view that no one seems to know what to do with us!! Gastro wise, OT wise, physio wise and paed / pain wise!!

Children get told that they arent in pain and to stop faking it, adults get told that it must be fibro or that they are just pussys and to get over it (funny that since there are like 100 plus of us with all the same pains - oh and yeah not to forget those several medical papers that say its common in EDS to get severe fatigue and muscle pain .....pity many of the medical staff in Australia hasnt read them yet! grrrrrr

You know my five have EDS, one has severe fatigue and also uses a wheelchair at 10 and probably will for life for longer distances.
I have EDS and suffer significant chronic pain daily and have or years.

Now looks like my DH may also have EDS! (that would explain the children having it quite badly).

Rhumy said that DH was hypermobile in several joints but he doesnt think its EDS as his skin isnt super stretchy (lol) dont you love these Rhumatologists who know nothng much about EDS but can still say its not it based on something that is not part of the essential diagnostic criteria! lol

Im pretty much over EDS lately and over the battles to get anyone to help my poor little guys. Poo is our issue recently, up to our elbows in it and not winning the battle.

Anyway sorry to whinge and whine! I hope you have more luck with therapists soon. We found that public therapists just didnt understand and we had to pay for private to get some resemblence of a service at all.

[itsaboysworld]

Im finding it all a bit frustrating with Jakey right now too. He scored 8/9 on the Beighton Scale for hypermobility and has over 15 degree hyperextension on his large joints.

Its been recommended that Jake has a rest day at least once a fortnight from school as he is just so tired. He gets very emotional and frustrated that he cant run around and participate with his friends and no one seems to take it all very seriously.

Can I ask where to order theratogs from? I was going to apply for funding for it especially as now we are approaching winter, he finds them so supportive but I have struggled to find somewhere to provide them nearby.

[Myprincesses]

Itsaboysworld- welcome to the group here. I'm not sure if you have been on our posts before but you have certainly found people who understand the issues surrounding BJHS/EDS.

I'm not sure where you live. But in NSW I am getting our new set of theratogs through Milestones Therapy. They are a mobile OT that specialist specifically in theratogs only. They try to work with therapists to train them in the use. However, they can come out to your house. They are a Sydney based service. They have a website and do delivery Australia wide. I am not sure if anyone else stocks them in Australia. Our last set was purchased direct from the states due to huge issues with the distributor at the time - let's just say they no longer stock them!

[Therese]

Of course it's ok to start a support group in here Once it gets too long, I will open another one for you in the same way as I do for the other groups in here too.

[HoneyMurcott]

Hi All,

Bec - thanks for establishing a group. I was sitting a few nights ago drafting a post asking all sorts of questions about what I need to be thinking about to get ready for school next year. In the end I didn't post it. I couldn't get the tone of it right when our DD will only face physical / fatigue / absenteeism issues next year. Cognitively and behaviourally school is going to be right up her alley. But with the other issues I'm struggling.

For example how am I going to 'convince' the school about how challenging her BJHS is and how actively it needs to be managed? When people meet her they are completely unaware that she has any problems and when we tell them how much therapy she needs / how much assistance she needs to complete certain tasks / how long it has taken for her to learn to do something as 'simple' as jump everyone looks at us in disbelief.

When they see how capable she is on her 'good days' they can't imagine that on other days she can't get out of bed. I have no idea how on earth she is going to manage the repetitive task of learning to write? Her motor planning skills are terrible and on her bad days they are non-existent. The amount of repetition she needs to learn a new skill ..... well there is no way she's going to get that in a normal classroom...... so how do I manage her teacher's expectations about what is reasonable for her to achieve. AAGH!!! And what happens when she's too tired to walk from her classroom to the hall for assembly

::I will now stop rambling::

I have just PM'd you the details of our OT. Let me know if it doesn't come through. Sorry I can't help on the PT / Theratogs issue. We use a public physio through our local hospital who is just fabulous - as was their OT who did our initial assessment. I'm so sorry you're having such trouble getting a good team of therapists established here in Sydney. You'd think with all the 'choice' out there in this huge city that would be easy but it's not. I wonder if you ring the Connective Tissues Dysplasia team at Westmead if they could give you a list of private physios that use Theratogs? Do you have an appointment yet with CTD? Have you started with your speech yet?

Cat - you have so much experience. Thank you for sharing all your knowledge with us. Interesting about your DH and the 'non stretchy skin' issue and the rheumy's interpretation of the diagnostic criteria. Our DD appears to have quite good skin - not overly elastic and she certainly doesn't scar badly. For that reason our paed questions whether she'll get an EDS diagnosis. But from my reading (and from previous comments from you) my understanding is that it's a spectrum. Our DD scores a 9 on the Beighton, has hip dysplasia and a family history of everything else EDS under the sun (migraine, severe varicose veins, brain aneurism) and yet she might be ruled out on non-elastic skin? Mmmmm. In the end if she doesn't have it of course that's fine but for long term prognosis and management I would like to know ....... particularly if there's a chance she has vascular EDS.

IBW- sorry to hear Jake is struggling with fatigue. I think a 9 day fortnight sounds like a good idea. With school for our DD next year I'm trying to get my head around how to manage fatigue. Lucky for us we're only talking about kindergarten.

Now must get back to work .....

[itsaboysworld]

Sorry, should add I live in Vic, in the Barwon South Western region. Our service providers tend to have narrow ranges of recipients. There is Gateways for children with autism, ADHD etc and then there is Scope for children with physical disabilities and II but rarely any sort of crossover so Jakey tends to fall through the cracks a little.

He does have a physio program at school and we are going through the very lengthy application process via DHS for individual support packages, but there is a 5 year average waiting list for them.

[Cat©]

Yes HoneyM, I think that Rhumy like many others just has no clue.

Many manifestations of EDS have no issues with skin other than
possilby a bit velvety. All my boys are velvetty and oh so soft, and super super thin skin, you can see all the viens through it on the chest, and head like there is little skin there, and the rest of the body the skin just looks a bit see though.
I have found a big difference between EDS suffererers, for example some are like my boys and have the unusual ears (pointy super large sicky outy, not well formed etc) and others have normal ears or mostly normal. Same with toes my boys have the whackiest toes, bent all the wrong way, some joined, hamer toes and some toes bent sideways, where as others I have talked to despite dislocating all the time have perfect toes! lol

So there are so so many types out there, and as yet no testing (except vascual and I think one other type) they do have a test that will pickup some other types of EDS but apparently its hit and miss and only picks up abput 10% of the EDS population so they ont use it as its so hit and miss.

the one good thing about the fatigue also is that it does get better with age, at least until around puberty then it can go backwards, then improves again, then can also go backwards again in the 30s onwards and that usually doesnt bounce back. My DS, when I look back at him and his photos etc he was just so so fatigued all the time - his face was so saggy and he had permanent ptosis. Now altough he still cant handle much walking he is much better than he was as a child. He stopped having the constant choking issues (only happens a few tiems a week now as opposed to multiple times a day), he has learnt to chew where as he couldnt at all before. He can walk without falling over - where as up till about 6 he used to fall constantly (he started walking at about 2 yrs of age).

So there will be some improvement, certianly not running marathons, but the fatigability should improve a little with age.

[HoneyMurcott]

Bec - I saw your post in the FYOS section and was just wondering about the recommendations you've had for part-time schooling. Do you know how you go about negotiating PT school? Is there a Dept of Ed policy on it ('cause I can't find it!)? We will homeschool next year if required but our DD is such a sociable little girl she will be devastated of she can't go to school. She is desperate to go. Part-time school might be the answer.

Thanks

HM

[Myprincesses]

HM- I'm not really sure of the process as yet. But I am heading to a session on Thursday night about starting school with a child with special needs in NSW. They are going to have people from the dept of Ed, catholic schools and independent schools there to discuss things like that. So will talk to them and let you know what I find out.

So far the therapist and school have not been particular open to the idea. They just keep telling m that school is a long way off and lots can happen in that time.... Doesn't really help with planning now though.

I have spoken o a few friends who are teachers and most recommend half days, but the issue is that she will then miss subject like HSIE, art music PE all the time ( mst schools do literacy and maths before lunch.) it is really hard to know what will be the best. She is also really social and is talking about going to big school. At this point we plan to see how he goes with the orientation program at the end of the year, but be ready to do homeschool if necessary.

The other option we are considering is distance Ed due to medical grounds.... Same as homeschool but you don't have o set the curriculum and you have plenty of support.

Maybe if we both homeschool we should set up monthly excursions together? That way they are things appropriate or our dtrs and they can have some social get togethers!