need suggestions for my 6yr old

Avatar for amandakenne
iVillage Member
Registered: 06-28-2004
need suggestions for my 6yr old
15
Sat, 11-26-2005 - 5:32am

Hello all

My 6yr old daughter (Bridgette) was diagnosed with JRA last week and whilst we wait for our next pediatrician's appt (19th Dec) to find out more, she is in much pain a lot of the time. Cold packs, panadol and her anti-inflammatory tabs (Inza) is all we are doing at the moment. I started her on a fish oil supplement a few days ago but when she is crying in pain I feel so helpless.

I look forward to reading any and all suggestions you might have for us.

regards

Amanda

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Avatar for amandakenne
iVillage Member
Registered: 06-28-2004
Wed, 11-30-2005 - 8:06pm

What a morning ! A shouted argument about breakfast (Bridgette not wanting any and me saying she had to so she could have medication), both of us in tears and she finally giving in and having some grapes after her dad told her she had to eat .... Since dropping the kids at school I have been feeling down and not wanting 3 more weeks of this until we see the Dr.

I rang the Pediatrician and his receptionist is squeezing us in TOMORROW!! (I think she could detect the wobbly voice of desperation).

There is only one Rheumatologist that sees children and he is booked to March next year, however his receptionist said for urgent cases (and children) he will do an after hours appointment for us. So I will prob ring her back after our pediatrician appt tomorrow.

Bridgette was crying yesterday as it was painful for her to hold her pencil (even with the triangle grip on it) to do her homework, so I am glad I am being pushy and moving up the appointment.

I will report what happens :)
Thanks for letting me blurt out my worries :)

Amanda

iVillage Member
Registered: 05-01-2005
Thu, 12-01-2005 - 1:17am

(((((((Amanda & Bridgette)))))))

I am praying that the Pediatrician can get you in to see a rheumy soon. March is just too too long of a wait!

Hugs,
Vicki

iVillage Member
Registered: 03-25-2003
Thu, 12-01-2005 - 7:09am

Dear Amanda,

I have posted a few Austrlain links for you on JRA. Be prepared for a long learning curve, you will gradually get to understand this disease, and ways you can assist and teach your young daughter.
I myself have found I have found out more tips and hints on how to manage my disease just by participating in this board. As you would be aware a docotrs appointment is only so long 20 mins if you are lucky and it will really be up to you to learn about this disease and its management. Short of obtaining a medical degree you will gradually get to understand all the terminology, tests and what they mean, medications, analgesia use etc etc etc.......it all just takes a little bit of time, and is just totally confusing at first, especially when all you need to do is stop you daughters pain.

I would suggest you bookmark the below links and use them as a reference, when you need to figure out something, or find Australian sources.

http://www.arthritisaustralia.com.au/
http://www.cyh.com/HealthTopics/HealthTopicDetails.aspx?p=114&np=304&id=2360
http://www.rheumatology.org.au/rheumatologists/links.asp
http://www.ahta.com.au/

I would recommend is if you can look into taking your dauighter to the local physio or gym for sessions in the hydro pool, even if she cannot swim yet the heat of the water will help he pain a lot, even just lying in your arms.
It may also be safer since she is only little to get some proper standardized wheat packs from the chemist to reduce the risk of burning her. Home made packs have been know to explode in the microwave as well as cause skin burns on people who are compromised.

I would ask you when they diagnosed your daughter did they also test her for rheumatic heart disease ? Just a query as my sister was 6 when they thought she had arthritis from he painful legs & joints. And it was in fact rheumatic heart disease.

Well thats is it from me.........but.........

(I will warn you if you if you hang around in here too long you get a bit of lingo-stress
they all talk this foreign english language ? , even the drugs are different and the medical tests are called something else) ....But the advantage is.......I get to know about these new drugs before they are even approved for use in Australia, as you may not be aware our FAD and TGA is so strict on drugs it can take yrs before they become available here, and a few more before the PBS will allow them for the lower cost...eg my Enbrel ( arthritis injection drug costs about $2000 per month but under the PBS I get it for $23 per month )

Lell.

iVillage Member
Registered: 11-03-2003
Thu, 12-01-2005 - 4:58pm
(((((((((((( Amanda and Bridgette )))))))))))))))).

Molly

Avatar for amandakenne
iVillage Member
Registered: 06-28-2004
Thu, 12-01-2005 - 11:32pm

Thanks Molly and Lell for your answers.

Lell, I have bookmarked all those sites - thank you kindly for listing them for me.

I have made a new thread on how we went with another question for you guys - I will continue to check back and keep you posted.

Much thanks for the support received so far.

((hugs))
from
Amanda

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