Another flare

littlemummy2

Hi all,
Had Phoebe to see Dr Horden at dewsbury hospital today on checking her a couple of joints have flared up again. We thought she was doing well her methotrexate went up from 10mg to 12.5mg and from 8th December 15mg. Think I need to find out if it's now long term. She gets better and they talk about stopping her meds then something like this happens.To top it all off she has to have a brace with review to having a fixed one. We'd been turned down for DLA for this time so phoned them up and it's going to a tribunal. Don't need anything else to go wrong now.

Michelle A xx

barbara12

Hello Michelle
Gosh I do feel for you, I hate to see children poorly, and when its your own..its so much worse.
Has for them turning you down for DLA well this seems to be the norm, there are so many on here going to appeal.
I really do hope that the tribunal goes in your favour, and more than anything hope that Phoebe improves very soon, please let us know how you get on xx

stickywicket

I'm sorry. It must be quite a rollercoaster if your hopes of stopping the meds are raised then lowered again. I think, in your situation, I'd just be forgetting about coming off stuff for a while. If they're working then that's good. If they need raising, it happens to us all at times. The main thing is to get it stabilised for some time before thinking of the next step.

I'm not sure what you mean by a brace. Is that a leg brace? A caliper? I wore a caliper for years and it helped a lot.

littlemummy2

Hi
Phoebe went to wait for her sister in her playground when she came back with her sister she was hobbling and complained of her right ankle hrting when she walks, not had her complain like this in a while. Her brace is for her teeth had nothing but problems since been on methotrexate. One of the other reasons I'm appealing for Dla is that a friend of mine has a son with a slight speech inpedimant and he has kept his Dla. Phoebe has had arthritis for about 5-6 years. Kids with arthirits need to be cared for more than a child without it. I hope that anyone going through the same with Dla gets a positive out come from their appeals xxx

Michelle

stickywicket

The hobbling doesn’t sound good. Is this ankle one of the two joints that the consultant said was flaring last week? Did he suggest anything for it?

I’m afraid I’ve no idea if methotrexate can cause teeth to grow in a manner requiring a brace. I know some meds can affect teeth but I haven’t heard anything about meth in that respect.

DLA is a bit of a mystery to me. It might be that the boy in question has more difficulties than just a slight speech impediment. I wish you luck with your appeal.

Soretoe2

Hi Michelle, having had the dreaded RA since I was very small I just wanted to offer you my sympathy.
Please do not give up on the DLA, they are a rum lot and very erratic as to who they award to. Also most tribunals award the claimant so there is a good chance you will be awarded it when the time comes.
The system awards points for each part of the persons condition. For instance, you get points for asthma,speech impediment,deafness,eye troubles, arthrits in it's different forms etc; Then points for how the condition(s) affects your everyday life and actions. Then they add them all up and come up with the magic figure that puts you in the boxes of award/care. If you don't get enough points there is no award.
I also had to wear calipers and braces for many years as a child but was able to give them up in my twenties for special footwear.
I can't comment on the teeth but it may be worth asking the consultant specifically next time you see her, or even give them a ring and explain your worries. Especially with a child they are usually quite helpful.
Thinking of you and Phoebe and hoping that things improve for you both and that the DLA come to their senses and make an award soon.