Lucy up-date May 2012

[Princess Fiona]

So Lucy had her OT Assessment back in February, I got the report back 2 wks ago. At the end of the Assessment the OT told me Lucy would be getting referred to see a Pead, PT and to the Orthotics people to see whether her having some specialist insoles would help save her shoes.

The Report came through everything that was spoken about in the meeting was documented, down to the fact she couldn't use a knife and fork, had sensory issues bla bla bla, but there was NO mentions of ANY referrals of any kid. SOOOOO I called them up, after almost an hour on the phone the OT told me I should just take her to the GP, they don't think they can help any further, I swear HOW I never swore at her is beyond me.

I mentioned about "hyper mobility" as this was "mentioned" in Lucy's 1st Assessment back in 2009 when she was just 4, it was not documented in that report and it was sort of mentioned by the PT at the assessment as a comment rather than a diagnosis, it didn't seem like they were concerned about it, so its never been followed up, they didn't urge me to take her to the GP and its never been mentioned in any of their paperwork etc.

Recently Lucy has started Gymnastics and is absolutely fantastic at it and the coaches adore her and think she's amazing considering she's a relative new member of the team. The Head Coach works at the hospital as a Pead and after 3-4 sessions took me to one side and said "we've put Lucy under constant supervision in case of dislocations?? Why didn't you let us know she was hyper mobile" I explained that she hadn't been diagnosed as yet and that we were in the system. She urged me to see the GP. Also in the meantime Lucy has been getting locked joints, knees and elbows mainly, so I've read up on HM like mad and it seems to be a symptom as suffers get older.

ANYWAY after all this I took her to the GP last night, he is referring her onto all the places the OT was going to, and said the Meadow Centre (which is where she was seen) has a reputation for not following up on more complicated cases and tend to pass the buck (no shit sherlock). Whilst in the appointment Lucy did the performance of a lifetime, she could not have acted any less 'un-normal" for her age (which sounds bad) she was hanging off the chair, climbing on the couch whilst I was talking to the Dr, she fell off the bed and ripped his curtain down, she was trying to go through his drawers, emptied his bookcase and refused to put the stuff back, and basically acted pretty much as she would at school which I was pleased about in a way because it meant he sort of got an insight of what school are trying to deal with and why they're finding her very disruptive at the moment and don't really know what to do with her?? I'm pleased she didn't just sit there and listen although that would have been slightly less stressful I have to say. Anyway he has also given me a referral form to complete for Emotional and Mental Health as he said she is very immature for her age and he think she needs to be seen asap. He could not understand why NONE of this behaviour had been documented by the OT but I think thats because she didn't really display that usual behaviour in the Assessment she was surprisingly compliant that day for some reason.

Sooo Have filled in that form and passed it back to the GP today, so its another waiting game I suppose???

She's still ongoing with speech therapy but tomorrow is her last session and I have a feeling she will be discharged even though I'm not entirely happy with that.

[joanne62]

Thank goodness your GP sounds on the ball. I hope you get an appointment soon. Great news that she's enjoying the gymnastics, it's great for their confidence when they're good at something and the coach sounds brilliant.

[parkejm]

that sounds really hard, and a terrible worry for you. I agree that the gymnastics sounds brilliant for confidence building and channelling energy although the dislocation thing sounds awful Hope your referrals don't take too long

[Lilacgirl]

That sounds so frustrating. I really hope that you get the help you need soon for her. x

[Poppopity]

I think it must be just a general uselessness through lack of funding within Occupational Therapy Departments.

W. had his assessment yesterday for hyper mobility and sensory issues (Aspergers) and I came out of it feeling very frustrated. He is already under a Paed so OT will just keep his file open and we / school can contact them at any time for advice with regards to managing his sensory issues. Apart from that all they gave me was a list of items I can purchase to help him.

Have you had a CAF meeting regarding Lucy? A friend of mine who has been through similar has advised me that this is the best course of action to take in order to get everyone involved together and on the same path.

[Velvet Chain]

Thank goodness that you have a decent GP there and that he saw Lucy in a true light, it really does seem that the buck is being passed here there and everywhere and it is you and your daughter that is suffering. Hopefully, with these recommendations from your GP that things will now move a little faster for you.

With regard to the HM - DS has this, he had to have special things in his shoes for a year or so when he was younger (he was 3 at the time it was diagnosed and he had his assesment at the hospital within a week and another week later had his special thingies fitted) and he wore then for just over a year and it righted the problems that he was having - he is extremely flexible and is really good at gymnastics but not interested in it unfortunately. So far no problems with dislocation and I also have it but have only dislocated my shoulder and that was when I fell of a garage roof. So don't worry too much about the dislocation thing.

[Amelya]

It must be incredibly frustrating being passed from pillar to post so glad GP is being helpful.

I have hypermobility (as does my daughter) and neither of us have had any problems with dislocation - so I agree with Velvet - don't worry too much about that.

[Faith]

The thing with gymnastics though is serious gyms will do a lot of stretching through a huge range of movement. I am not hypermobile, but during my years in the gym my joints now stretch as far as anyone with HM syndrome. To push a normal child that far is OK as they physically can't push much past their capability, so it's a slow stretching process. But if you are HM your ligaments are extremely loose, so there isn't the natural brake, and asking a child to push as far as they can on a stretch, or try and increase the flexibility, can lead to increased dislocation risk. Especially on some things like reverse grips on bars and extreme strength/flexibility moves where you are using your strength against the joint.

Out of interest PF which club is she at? Is it rhythmic or artistic? I know your area very well Glad that it's helping her. As you know my DD was similar to Lucy, bouncing everywhere and falling off stuff, but gym (and ballet) has been the making of her.

[Cerise]

I have a DS with hypermobility and whilst a physio was fascinated, the consultant at the hospital managed to assess it without even watching him walk. (He was only 2 at the time). I was warned though about him being more prone to injury generally because of that 'lack of brake'. I have to stop DD pushing him into bridge and stuff now because he's only little and she doesn't know what she is doing. It sounds like the gym know what they are dealing with though and are on the ball so is there a plus side that she will naturally be very good at it?

[RealGoneKid]

I'm hypermobile, as is DH. I've never had a dislocation (touch wood) whereas DH can dislocate his shoulders at will without any discomfort!