Still up and down!

Submitted by Kitty on Wed, 07/07/2010 - 19:03.

It's been a while since I blogged. As usual, things are a bit up and down in our house.

Our youngest has been having some bowel problems that GOSH have said is a flare up. We have been advised to try some medication changes and see how we go. He is also suffering really badly with his joints - it's horrible when he's in pain as there's so little I can do. I just rub them or put hot water bottles on them. He's starting hydrotherapy again in a few weeks so I'm hoping that helps.

His physio said it may be worth ruling out arthritis but this requires blood tests during a flare up. I haven't a clue how to go about this as I know my GP doesn't do blood tests in children. He's also dure blood tests at GOSH in September and I'm worried that if I get the arthritis test done now will the experience be so awful that he refuses to have it done again in September?

I do worry a bit that when they grow out of using the buggy (at 3 and 6 they are almost too big already) that we won't be able to go places with much walking as they (both have joint problems) can't manage it. I hope it won't limit their lives too much.

Our eldest son has been struggling - he has lost some weight and is constantly ill! he has had 5 sets of antibiotics since April! He's missd lots of school unfortunately. He hasn't been able to play with his school friends at lunchtime as much as normal because he says he is tired. We are trialling another supplement - Neocate Advance- to see if it gives him some energy. Although he objects to the taste, the dinner lady said he was a different child today and managed to run round with his friends! I'm so pleased. Just wish he didn't mind the flavour as it takes ages to get him to agree to drink it and I'm worried he'll suddenly refuse it like the last one.

He is also so tired as he keeps getting up so so early and we cant work out why. most mornings it's 5am but sometimes it's 4.30 and last week he got up twice at 3.30am! (which is quite tiring as our 3 year old gets up in the night). He just can't go back off to sleep. Poor thing.

Can't wait for the summer holls so we can all have a rest from the rush of the school run!

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Submitted by Anonymous on Thu, 07/08/2010 - 11:40.

Hi Kitty

Sorry to heat things are still difficult. Any signs of the increased medication helping?

With regards to the hypermobility I would ask your gp to refer the boys to the hypermobility service c/o rheumatology dept at GOSH. Tell him to advice they have been seen locally and the local physio has concerns. That way to get to see a rheumatologist, OT and phyiso at once. They could rule our arthritis and if they think appropriate put the boys in their 2 week intensive rehab programme. You could ask your local physio to write too. Iz was referred and seen within 2 months so not a long wait. They are very anti buggies however!

I wouldn't worry too much about him refusing blood tests later if he has them now. Try bribery! GOSH good at giving them no choice!

Hope there are some ideas of what to do to improve things in Septemeber.

love Helen

Submitted by Kitty on Fri, 07/09/2010 - 19:46.

hi Helen

not sure if its the medication working or not but he's been a bit more settled today and has eaten quite well. although he was awake lots last night but i guess taht could be the heat. Neither of my boys like the heat and prefer to hide away from the sun. are your 2 like this?

thanks for your advice on the hypermobility - i've made an appointment with my doctor (although they are fully booked for 3 weeks!) to discuss it and discuss the blood test too.

How are things with you?

Submitted by shell74 on Thu, 07/15/2010 - 08:58.

Hi Kitty,

So sorry that you are still have problems, our three suffer with major joint pains and callum has artheritis he has a major buggy also but as he is 11 he hates it and we cant get a wheel chair until he reaches 50kg which is stupid. Both Joshua and Callum dont sleep very well Josh is often up by 3-4am but it has a knock on effect as by 4pm hes ready to goto sleep. He was on melatonin to help aid natural sleep but his body still found a way of counteracting to it. I am glad to hear that the neocate advance is helping, cant you use nesquick or crusha in it to make it taste better.

I agree we cant wait for the summer holidays to arrive either.

all the best,

Love Michelle xxxx

Submitted by Kitty on Sat, 07/17/2010 - 19:05.

Hi Michelle

I'm sorry to hear your 2 have joint pains too. have you found anything that helps? we are trying hydrotherapy but our 3 year old still complains most days and at night and I worry it will affect him when he starts school.

Do you know if the arthritis your son has is linked to his EGID?

thanks for the information on melatonin, I think I will ask our consultant about it in September when we next see him. Our 6 year old got up at 4.40am again today and was so tired all afternoon - and he still struggled to go off to sleep tonight though!

I hope you have a nice summer,

Kitty