New Member...second try at posting

[Guest guest]

Hi there, I am Jane in London UK and have been a member for about 3 weeks

now.

My granddaughter Maia was diagnosed with Juvenile Polyarthritis 2 months

ago, which was a bit of a shock as we had all thought that she has a couple of

ganglions on her hands up until that point. In fact she had had ultrasounds and

visits to the specialists at the Royal Free, who felt it was a wait and see

situation.

I wasn't happy about her consequent stiffness in her fingers and inability

to straighten more fingers than there were ganglions so i asked for a

referral........that was the result.

She is a very stoical 9 year old, who tolerates elbow blood tests without

pain relief, and who deals with her own medication.

She is on Methotrexate, folic acid and Ibuprofen, with a slight anorexia and

queasiness only. She had sight, blood and consultation again in the week

before Christmas for possible rheumatoid and uveitis, but the rheumatoid came

back negative and she doesn't have the protein in her blood for uveitis.

It's funny, but it seems such a relief that she 'only' has JpA, that it

seems a bearable thing to live with. She has deformities in her fingers and her

right elbow, but as such it hasn't affected any joints outside of her arms and

hands.

Reading about all the symptoms and struggles of the dear familes here, I

coumt my blessings that Maia is not so afflicted.

Her life has been sadly traumatic with the break-up of her parents, being an

only child and having to bear the pain of her father who can't hide his

feelings, and the irritability of her mother towards him and her.

I strongly feel that sometimes dis-ease occurs in the place that affects you

most. In her case it is the joints, as she 'carries' the pain of her

parents, and indeed has to parent them. She is so grown up but is in such

emotional

pain. She has wet the bed for ever, and was prescribed some melts to counter

this. They work fairly well, but the miracle is that we bought her a hypnosis

tape which she plays every night, and now she actually gets up and goes to

the loo when she needs to. She has gone from 5 out of 7 nights wet, to 1 out

of 7.......amazing, and it worked the first night....such a sweet tape.

Make me think that other things could be overcome or eased with hypnosis. Am

going to try to get her immune system back on track with a combination of

hypnosis and naturopathic treatment. I already do Reiki on her, which she says

helps......

Long message I know......anyone in the Herts or London area please get in

touch. BTW Barnet Hospital Trust is EXCELLENT......we are so privileged to have

free medical care in this country, and we don't appreciate

it...................... Kindness and love Jane

[Guest guest]

Hi and welcome Jane, although we are always sad to hear of another child

diagnosed. I am sorry your granddaughter is having such struggles. It is

wonderful you were proactive and asked for the referral. I have not

heard of a blood test for uveitis however. The kids here in the states

go to the eye dr and have a slit lamp test done, where they dilate the

eye and actually look for inflammation. You may want to consider that

for Maia (beautiful name by the way!). Just a thought. My son too is RH

negative but he is ANA positive. That is common - having arthritis but

testing negative.

Anyway, feel free to post often and ask any questions you may have. We

do have many members on the list from all over the world, some in your

area I am sure. This list has been a wonderful support for so many of us

here; you have found a group that truly understands what you are going

through.

Michele ( 20, spondy)

________________________________

From: [mailto: ] On

Behalf Of PetSpectrum@...

Sent: Wednesday, January 16, 2008 7:30 AM

Subject: New Member...second try at posting

Hi there, I am Jane in London UK and have been a member for about 3

weeks

now.

My granddaughter Maia was diagnosed with Juvenile Polyarthritis 2 months

ago, which was a bit of a shock as we had all thought that she has a

couple of

ganglions on her hands up until that point. In fact she had had

ultrasounds and

visits to the specialists at the Royal Free, who felt it was a wait and

see

situation.

I wasn't happy about her consequent stiffness in her fingers and

inability

to straighten more fingers than there were ganglions so i asked for a

referral........that was the result.

She is a very stoical 9 year old, who tolerates elbow blood tests

without

pain relief, and who deals with her own medication.

She is on Methotrexate, folic acid and Ibuprofen, with a slight anorexia

and

queasiness only. She had sight, blood and consultation again in the week

before Christmas for possible rheumatoid and uveitis, but the rheumatoid

came

back negative and she doesn't have the protein in her blood for uveitis.

It's funny, but it seems such a relief that she 'only' has JpA, that it

seems a bearable thing to live with. She has deformities in her fingers

and her

right elbow, but as such it hasn't affected any joints outside of her

arms and

hands.

Reading about all the symptoms and struggles of the dear familes here, I

coumt my blessings that Maia is not so afflicted.

Her life has been sadly traumatic with the break-up of her parents,

being an

only child and having to bear the pain of her father who can't hide his

feelings, and the irritability of her mother towards him and her.

I strongly feel that sometimes dis-ease occurs in the place that affects

you

most. In her case it is the joints, as she 'carries' the pain of her

parents, and indeed has to parent them. She is so grown up but is in

such emotional

pain. She has wet the bed for ever, and was prescribed some melts to

counter

this. They work fairly well, but the miracle is that we bought her a

hypnosis

tape which she plays every night, and now she actually gets up and goes

to

the loo when she needs to. She has gone from 5 out of 7 nights wet, to 1

out

of 7.......amazing, and it worked the first night....such a sweet tape.

Make me think that other things could be overcome or eased with

hypnosis. Am

going to try to get her immune system back on track with a combination

of

hypnosis and naturopathic treatment. I already do Reiki on her, which

she says

helps......

Long message I know......anyone in the Herts or London area please get

in

touch. BTW Barnet Hospital Trust is EXCELLENT......we are so privileged

to have

free medical care in this country, and we don't appreciate

it...................... Kindness and love Jane

[Guest guest]

Welcome Jane! I'm sorry to hear about your granddaughter's struggles but glad to

hear that she has a treatment plan and things seem to be helping. The

deformities should lessen with the right medicine and therapy. I am glad to hear

that you have found something helpful for the bedwetting. I bet she is relieved

too. Does she live with you? It sounds like you are very active in her life and

that is a lucky gal to have you. I'm not sure if there is anyone here in your

area. I know there is Australia and Scotland but can't remember for sure if

others. Welcome to the group.

e, mom to " joe " 21 poly/lupus

PetSpectrum@... wrote:

Hi there, I am Jane in London UK and have been a member for about 3 weeks

now.

My granddaughter Maia was diagnosed with Juvenile Polyarthritis 2 months

ago, which was a bit of a shock as we had all thought that she has a couple of

ganglions on her hands up until that point. In fact she had had ultrasounds and

visits to the specialists at the Royal Free, who felt it was a wait and see

situation.

I wasn't happy about her consequent stiffness in her fingers and inability

to straighten more fingers than there were ganglions so i asked for a

referral........that was the result.

She is a very stoical 9 year old, who tolerates elbow blood tests without

pain relief, and who deals with her own medication.

She is on Methotrexate, folic acid and Ibuprofen, with a slight anorexia and

queasiness only. She had sight, blood and consultation again in the week

before Christmas for possible rheumatoid and uveitis, but the rheumatoid came

back negative and she doesn't have the protein in her blood for uveitis.

It's funny, but it seems such a relief that she 'only' has JpA, that it

seems a bearable thing to live with. She has deformities in her fingers and her

right elbow, but as such it hasn't affected any joints outside of her arms and

hands.

Reading about all the symptoms and struggles of the dear familes here, I

coumt my blessings that Maia is not so afflicted.

Her life has been sadly traumatic with the break-up of her parents, being an

only child and having to bear the pain of her father who can't hide his

feelings, and the irritability of her mother towards him and her.

I strongly feel that sometimes dis-ease occurs in the place that affects you

most. In her case it is the joints, as she 'carries' the pain of her

parents, and indeed has to parent them. She is so grown up but is in such

emotional

pain. She has wet the bed for ever, and was prescribed some melts to counter

this. They work fairly well, but the miracle is that we bought her a hypnosis

tape which she plays every night, and now she actually gets up and goes to

the loo when she needs to. She has gone from 5 out of 7 nights wet, to 1 out

of 7.......amazing, and it worked the first night....such a sweet tape.

Make me think that other things could be overcome or eased with hypnosis. Am

going to try to get her immune system back on track with a combination of

hypnosis and naturopathic treatment. I already do Reiki on her, which she says

helps......

Long message I know......anyone in the Herts or London area please get in

touch. BTW Barnet Hospital Trust is EXCELLENT......we are so privileged to have

free medical care in this country, and we don't appreciate

it...................... Kindness and love Jane