Not a good week

Submitted by helenb8man on Sat, 10/10/2009 - 18:30.

We've not had the best news this week. After seeing our local paeidatrician with Izzy on tuesday and her wanting to start her on sulfasalazine she then rang on weds to say she'd spoken to GOS. They didn't want to give her sulfasalazine yet and have put her on 3 weeks of steroids. It seems they are finally coming round to the idea that she does have EGID too! Depending how she responds they will decide what to do next.

Earlier in the day we had taken Ben to the community paediatrician involved in the statement process. It was funny at one point as she was assessing his developement and tried to get him to do a 4 piece puzzle. He thinks it is fun to pretend he can't and she was looking concerned. He did it and she gave him another puzzle with a load of shapes on it and he completed it in the time she'd expect a 7 year old to manage! That's my boy! He can do a 60 piece puzzle on his own.

She was watching him with a pen and paper and said his grip didn't look good. I said the dietician had mentioned hypermobility. She examined him and found he was hypermobile in his fingers, wrists, elbows, knees and ankles. Didn't look anywhere eise. So that may acount for some of the foot pain and lethargy but not something we wanted to hear.

I am left handed and she thinks he probably is too and wants us to encourage him to be so as he had better strength that side.

We then went to their swimming lesson and he fell over and smacked the back of his head on the side of the pool. I didn't think the day would get worse til we got home to the phone ringing about Iz needing steroids!

Trying to be positive it looks already like they are helping a bit.

Still haven't heard re the panel decision. The hypermobility will help if we need to appeal. Having a look round the school at open day on thursday. he will go there as it is where Iz goes but I want to look from his perspective and ask questions relating to his needs. Good news is they've just put in a massive disabled toilet so at least there are changing facilities there.

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Kitty's picture
Submitted by Kitty on Sun, 10/11/2009 - 19:52.

hi helen
what a week! how is ben's head?

i just wondered what this hypermobility is? just in case it's the reason why my 2 have feet and leg pain?

when do u think u might hear from the panel?

I'm glad the steroids are starting to work. Does this mean it's even more likely that she has EGID too?

Kx

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Submitted by helenb8man on Mon, 10/12/2009 - 14:48.

Hi Kitty

Hypermobility is where the joints have a greater range of movement than they should eg little finger can flex beyond 90 degrees. It is something that is fairly common in "normal" children and doesn't have to be a major problem. However, it can cause joint pain and muscIe weakness and you end up needing physio. A friend of mines son with EGID and hypermobility has just gone into GOS for 2 weeks of intensive physio. I have found out it is common with EGID so it may explain your boys joint issues.

Ben's feet are a lot worse. I got his shoes checked today and they are fine so I assume it is the hypermobility. Our dietician said it would explain some of his symptoms and account for some of the tiredness. I will mention it when we got to gos in 3 weeks as they have a hypermobility clinic run by a physio who specialises in it.

If you look on fabed you will see some replies to my post on it.

We haven't heard about the panel yet. I rang today to tell them about the hypermobility and they said his file was in processing so couldn't tell me anything. Most annoying!

Steroids seem to be helping so points to the EGID diagnosis I've always thought she had. Maybe she was in remission when she had her scopes or they just didn't get enough good biopsies. Something else to discuss at gos.

Hope you are ok.

Love Helen

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