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Date: 19.07.2007
From: gina harfield

Subject: my daughter age 10 recently diagnosed with jra now about to start methotrexate

I have a daughter, Hope, who is 10 on the 29th of this month
>
>She has spastic diplegia which was diagnosed at 8months old.
>In addition she can not extend her right arm, which is due to a fixed elbow
>joint (still no answer as to how or why), not a contracture, which
>unfortunately several junior drs fail to recognise!!!
>Along with the cp she has night seizures which are now very sporadic,
>hearing reduction mainly in her left ear and also a heart murmur which to
>date has needed no treatment, however, the palpitations she encounters are
>being investigated at this moment.
>She was diagnosed with uvetis and cataract last year, after I noticed her
>pupils were unequal, and then had subsequent blood tests for juvenile
>arthritis, which she has now been diagnosed with as chronic.
>Hope is in mainstream school, but is behind with her learning, and retention
>
>of work she has learned is poor. She is in her last few weeks of year 5 and
>is struggling with year 2 work.
>
>Previous treatment for the CP has been Botox injections to the length of
>both legs, with no positive effect, to be honest the weakness that followed
>initially wasn't worth the pain of the injections and extra physio we had to
>
>make Hope endure for very little in the way of results, I honestly feel the
>extra physio input was the factor in any slight improvement in tone.
>Night splints are still in place, and she has recently been allowed off
>wearing the splints during the day, however, I feel that this is going to
>have to be reconsidered as her legs are turning in a lot more than before;
>again her right side is more marked with this.
>An arm splint which was adjusted every couple of weeks to try to extend her
>right arm was used, until it was thought that the angle of the fixture was
>at a reasonable degree, so as to allow Hope to feed herself and also that it
>
>did not become straight and fixed, rendering it useless.
>
>Future plans for surgery to her hips (the tendons/muscles at the front are
>tight, causing Hope to pull back to stop herself falling forward, creating
>an arched back)
>And also surgery to her ankles and calves are plans for her through the
>surgical consultant when she grows more!(he has foreseen the surgery to
>start approx age 12)
>He is unsure as to whether surgery to her right arm will be of any
>significance, and is still unclear as to his intentions towards treatment
>there.
>Her cataract can not been removed surgically until the uvetis is under
>control.
>
>A wheelchair assessment has been done and we are still waiting for the chair
>
>to be built, as after continuous calls to enquire as to how long we have to
>wait, I discovered the order is still on the computer due to staff shortages
>
>and has not been actioned through oversight. Arrgh!
>
>An OT assessment of Hopes bathing requirements at home has been undertaken,
>and a wet room has been advised in place of our bath, our landlord (a
>Housing Association) refuse financial assistance but will allow works to be
>carried out in the property, we have applied for a Disabled Facility Grant,
>but I am now considering asking to be re housed into a property that has
>disabled facilities in as we will probably gain that quicker than waiting
>for funding.
>
>Hope has just undertaken a perception test with the OT and several areas
>need addressing such as, with her ability to reconstruct simple objects on a
>
>page, retention of facts, and her pencil grip and use of cutlery need
>assistance as does her ability to undo buttons etc.
>
>First question, is all this "normal" to have as secondary/alongside cp or is
>
>it just cruel fate that the medical book landed on everything we can throw
>at her, when Hope was born!?!
>
>Secondly, Hopes ophthalmologist has asked the rheumatology consultant to
>consider, METHOTREXATE treatment, for the arthritis and uvetis, do you know
>anything about this treatment and how it may effect Hopes cp and other
>conditions? And more so for my little girl, who dreams of being a Mummy one
>day, will it make her infertile or reduce her chances of conceiving as
>methotrexate was primarily a cancer treatment.
>
>We take Hope to Hydrotherapy and carry out physio at home, at present Hope
>walks independently, but has many falls and when she is stiff (not known if
>cp or arthritis is the cause of the stiffness, or both) she can only walk a
>few steps and fall over, only to get up and repeat the same. She has a
>rollater for her very "bad" days, but finds it cumbersome and extremely
>difficult over grassed areas or uneven ground.
>
>I am worried that when the arthritis is flared up, (her knees are effected,
>mainly the right leg and also her right elbow) that physio is compromised as
>
>resting the swollen joint is advised during the flare up, and exercise when
>it isn't, how will this effect her CP in the long run, if physio becomes
>something we cannot do regularly?
>
>I'm sorry for such a long winded email, but it just feels that all the
>effort my little lamb has made and the pain of physio to start with when she
>
>was a baby, has all been worthless if another condition could render her
>unable to walk as independently as she does now. The wheelchair was to be an
>
>"as and when needed-thingamy" is it likely to become a permanent fixture?
>
>Lastly, is there anything else I should be aware of that "could" potentially
>
>crop up along with this?
>
>I appreciate that CP has been kinder to Hope than to many and I am sorry to
>enforce my grumblings on to you, I just don't know where to go to get
>answers to all that we have to learn about her needs and what ever pops up
>next.
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Date: 02.09.2007
From: Cherie Cliff

Subject: Re: my daughter age 10 recently diagnosed with jra now about to start methotrexate

Hi Gina, just read your posting - sorry it's taken so long to reply. It would be very inappropriate of me to subject you to more advise as Hope's diagnosies are too complicated for me to comment on. What I can do is to tell you that I have taken Methotrexate without negative side effects - i did feel a bit weird for a few weeks but that feeling passed. Methotrexate is used for the treatment of some forms of cancer but in much larger doses than it is used for Arthritis.

I was diagnosed with CRA at 13 years old and have & continue to have a brilliant life. I have the same ups & downs as everyone just with the added extra of having arthritis. Don't get me wrong it's not been easy but some brilliant things have happened to me & i've met some fantastic inspirational people as a result of having arthritis.

I think that you need some support as well as good information - for support try the Arthritis Care website they also have a helpine. There is a link from this site.

The developments & progress being made for the treament of arthritis has come on in leaps & bounds. Joint replacement surgery is excellant & improving all the time. I speak from first hand experience.

Regarding the purchase of equipment - you could try your local Arthritis Care Branch who may have some funds available to provide some assistance & there are a lot of charities who provide grants for the purchase of equipment.

The Arthritis Care Helpline staff could point you in the right direction. If you feel you need more medical information please go back to your GP/Consultant.

Finally, don't apologies for grumbling - in my experience most people grumble if their hair's not right, & lets face it - sometimes it feels good to ave a good old grumble...

Let us know how both you & Hope are doing.

Cherie
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