Re: Re:NOMID Syndrome

[Guest guest]

hello kate! i have finally seen someone in this group who also goes to texas

childrens hospital in houston! my son tristan is almost 3 and has poly-JRA.

we also have seen dr warren, in fact it was he who suggested the joint

injections in both of tristans knees and ankles. he is doing so much better

now! tristan's primary rheumy at TCH is dr perez and martha curry is

presently seeing my son because dr perez is on leave at the time. i am very

pleased with everyone at TCH and always leave there feeling even more hopeful

each visit. i hope they take as good care of your son as they do mine.best

wishes cheri

[Guest guest]

Welcome Kate! I'm mother of a 3.5 year old little girl (July 18th) who has

poly-JRA. I also have two other kids (2 year old boy and almost 9 month

old girl). *never a dull moment in our household* =)

I hope you find this group helpful! But if nothing else I hope we can just

be support for you.

Amy

[Guest guest]

Thank you Amy and Cheri for your notes, it's nice to be around people who

understand the effect these diseases have on us all, is such a happy

little

man and I sometimes wonder how infact he functions on a daily basis, but I

guess

if pain is all you know it's normal. We are now finding that because the

medications

give some relief he is now much more unable to cope when things go wrong.

I want to know if any of you use any herbal remedies to treat your children,

I have been e.mailing a mother of a NOMID child and she is using Colchicine

on her child and is now able to reduce her oral steroids to half. I have also

heard that Cats Claw is very good for immunosuppressed diseases and has

been used for centuries.

Kate Barton

[Guest guest]

Re: Re:NOMID Syndrome

> From: Kate and Barton <jkbarton@...>

>

> Thank you Amy and Cheri for your notes, it's nice to be around people who

> understand the effect these diseases have on us all, is such a happy

> little

> man and I sometimes wonder how infact he functions on a daily basis, but I

> guess

> if pain is all you know it's normal. We are now finding that because the

> medications

> give some relief he is now much more unable to cope when things go wrong.

>

> I want to know if any of you use any herbal remedies to treat your

children,

> I have been e.mailing a mother of a NOMID child and she is using

Colchicine

> on her child and is now able to reduce her oral steroids to half. I have

also

> heard that Cats Claw is very good for immunosuppressed diseases and has

> been used for centuries.

>

> Kate Barton

>

>I just wanted to warn everyone to please be careful using herbal remedies.

I recently attended a nursing seminar on herbal tx. These rememedies are

not recommended for use in children. From what I learned there are no safe

doses for children and there safety in children is unknown. Herbal remedies

are not recommended for anyone under 18. Someone please correct me if I am

wrong, but this is what we were told.

Tracey

>

>

> ---------------------------

[Guest guest]

Hi Kate,

I just wanted to say hello and welcome you to our group. Thank you for

explaining your son's condition. What exactly do the initials NOMID

stand for? This is a form of arthritis that I'm not familiar with. Well,

as there's over 170 different types, there are actually quite a few I'm

not familiar with It sounds like little is a wonderful child.

And it sounds like you are a wonderful parent, doing a terrific job of

learning about this illness and coping with the day to day ups and

downs. I think it's great that you and the other parents have started up

a support and information group. If you have a related web page, please

send the URL as I'd be interested in reading more about this. Also, I'm

glad that you have found our list and hope you will feel right at home,

here. Welcome!

Aloha,

Georgina

Kate and Barton wrote:

> Hi to everybody, my name is Kate and I am the mother of a very cute 3.5year

> old

> called who has a very rare form of Arthritis. Infact he is one of 50

> children in

> the world with this dreadful disease.

> The symptoms are very much like JRA but does not effect the hip of shoulder

> joints.it has an added bonus of causing almost systemic lupus like symptoms

> as

> well and unfortunately is fatal.

> was born at 39 weeks with a very uncomplicated pregnancy, he weighed

> 7lb 2oz and was 19.5 in long. we noticed a rash at delivery that got very

> much

> worse over the next 6 hours to the point that by the time I went to the

> nursery

> he looked like he had been put in boiling water.He spent the next18 hours in

> the

> NICU as they had no clue as to what was wrong. We were given a diagnoses

> of Mastocytosis at 5am the following morning by the Dermatology team at

> Baylor University. Well we took home this very irritable infant with a very

> angry

> rash later that day with no follow up. spent the next year either

> screaming or

> sleeping which as a first time mother and nurse who had worked with babies

> before

> some concern. Well all I got from the Doctors was that I was a first time

> mother

> and that I would get over it.

> At the age of 11 months I noticed that was not using his RT leg at all,

> I

> contacted the PCP and was told that it was nothing.I persisted and

> eventually

> blood was taken indicating that he had an infection ? osteomylitis. We then

> spent

> the next six weeks in and out of hospital on IV antibiotics. He had a total

> of three

> central lines in that time due to clotting off, we also went through two

> bone biopsies

> because they wondered if he had a tumour.(he does but we are not sure if it

> is

> cancerous or not. Chondroma RT Knee) We left the Hospital with no diagnoses

>

> not even the Mastocytosis as this had been eliminated due to the fact that

> his rash

> came and went ( I had been telling them this for the past year). The Doctors

> at

> Texas Children's Hospital even had a round table to discuss 's illness

> because

> they could not come up with any answers.On the 15th May 97 we went to see

> Dr R Warren (Rheumatologist) who gave us the news and prognoses of 's

> disease and we came away with the feeling that we has been hit by a train.

> The next few weeks were taken up with more tests to verify the diagnosis.

> has the following: Skin rash, papilledema, Adenopathy, high fevers

> (103+)

> hepatomegaly, arthritis, perisosteal changes (growth plates close very

> early),

> CSF pleocytosis, persistent open fontenelle, hearing loss, increased head

> size,

> very small stature, Chondroma, chronic meningitis, and chronic anaemia. He

> is

> however very bright and with the help of steroid injections into his RT knee

> was

> able to walk at the age of 23months. We are very lucky to have such a bright

> child

> as they are usually failure to thrive.

> I am incontact with 5 other families now and have just stated up the

> NOMID?CINCA syndrome newsgroup, but since his illness and that of JRA are

> almost the same and we all share the same types of medication I wanted to

> get

> involved with this group also.

> I hope that I haven't goon on too long

>

> All the best to you and your families Kate Barton

[Guest guest]

Georgina wrote:

> What exactly do the initials NOMID

> stand for?

Hi Georgina, I'm so sorry for just using the term but NOMID stands for Neonatal

Onset Multisystem Inflammatory Disease.

It is a sub group of JRA. But it is found at birth, it has CNS involvement (

has

chronic meningitis) and although the joints are effected it does not wear out

the

cartilage. The growth plates fuse very early on and as in 's case the

patella's have

already ossified. These children don't usually live very long and have a

tendency

to

go malignant with some very strange cancers. has a chondroma to the rt knee

which is watched very closely.

There is about 2inches of information in one Rheumatology book and all the

research

done so far (1985) basically reads the same story but with different kids. There

are 50

children worldwide and nothing on the internet hence the web page which I will

let

you all see one we have got it to my liking (could be March).

I wish you all could meet he really is something very special and so old

for

his age. His latest saying is " I'll think about it o.k " .

Take care love Katexxxxxxxx

[Guest guest]

Hi Kate,

must be a very wonderful child. Reading your notes, it sounds like

you two have a very close, special bond and are very intuned to one

another. He's very lucky to have such a warm, loving and knowledgable

parent. I bet he brings lots of sunshine into your life

This may sound strange but I think I know what you mean, about some

children seeming to have older souls ~or being older in some ways than

their chronological years. Some children just seem so settled, so at

ease with things. Not necessarily more mature but as if they have

emotional reserves of experience, more than their short lives would

suggest they should. Oh, I'm not able to put the right words to what I'm

thinking but I do think I know what you mean. is like that. Even

since before the JRA. Others have commented on it, too.

Well, I wish you the best in your web page project. Can't wait to visit

the site when it's done

Aloha,

Georgina

> From: Kate and Barton <jkbarton@...>

>

> Georgina wrote:

>

> > What exactly do the initials NOMID

> > stand for?

>

> Hi Georgina, I'm so sorry for just using the term but NOMID stands for

Neonatal

> Onset Multisystem Inflammatory Disease.

>

> It is a sub group of JRA. But it is found at birth, it has CNS involvement

(

> has

> chronic meningitis) and although the joints are effected it does not wear out

the

> cartilage. The growth plates fuse very early on and as in 's case the

> patella's have

> already ossified. These children don't usually live very long and have a

tendency

> to

> go malignant with some very strange cancers. has a chondroma to the rt

knee

> which is watched very closely.

>

> There is about 2inches of information in one Rheumatology book and all the

> research

> done so far (1985) basically reads the same story but with different kids.

There

> are 50

> children worldwide and nothing on the internet hence the web page which I will

let

>

> you all see one we have got it to my liking (could be March).

>

> I wish you all could meet he really is something very special and so old

for

> his age. His latest saying is " I'll think about it o.k " .

>

> Take care love Katexxxxxxxx