medical advice needed

[Guest guest]

Thanks, Priscilla. janet

>

> Your email for this mother didn't work so here's what I wanted to

> post to her if you could send it on:

>

> In regards to your letter below, two things came to my mind --one,

> was she vaccinated recently? And two, have you been to any

> alternative-type docs -- you know, like naturopaths, chiropractors,

> detox docs? They sometimes have answers when the mainstream

medical

> folks don't. I kinda wondered if she could have gotten anything

> poisonous in her system that she can't shake? In that case,

detoxing

> might help but you usually either want to research lots or go with

an

> alternative doc who knows his stuff.

>

> Mainstream docs will hardly ever admit vaccines could be the

culprit.

> Or I recall a cousin of mine around age 2 having very weird

symptoms

> way back and gained weight and was sick and puffy, etc. I think

they

> thought she might have gotten into rat poison but they never did

> know. She did eventually -after a year or more get better

but . . .

> they never did know what caused it all, even thinking it was

leukemia

> at one point but it wasn't.

>

> Priscilla K

>

> >>>>> Medical Advise Needed

Posted

> by: " Janet Romo " romojanet@...

> romojanet Sun

Apr

> 1, 2007 5:18 pm (PST) Can you read the

> symptoms below and email the mother, Kim

> kim.newman@... if you know anything that might help? She is

> unable to find out what the diagnosis is with her 2 year old with

> DS. We are all stumped here in Arizona. Janet Romo president of

> DSNetwork romojanet@...

>

> Kairi just turned 2 on the 14th and it was a sad birthday because

she

> was sick and actually has been sick for 8 weeks now. Every morning

> she wakes up feeling pretty good and eats ok but as the day goes on

> she starts to get hives and the hives get worse and worse. As the

> hives spread she starts to get a fever and sometimes joint pain in

> her

> hips. By the end of the day she is covered with hives and has a

fever

> ranging anywhere between 101 to 103.4 and is completely miserable.

> Once or twice a week she will get a runny nose but never much else.

> This went on for 7 weeks through many doctor appointments and

tests.

> They admitted her last week and only kept her for 3 days because

> after

> more tests could not find anything and want us to work with the

> pediatrician to figure it out. While in the hospital they did so

many

> tests including a chest x-ray, Hplyori, respiratory tests, stool

> cultures, rhumatology tests, CMV, Valley Fever, IGE for allergies,

> HIV, Kawasaki disease, Micro-plasma and many basic blood tests and

> all

> were negative. After we got home we both came down with the flu

from

> being in the hospital so she stopped eating and drinking. She

> actually had stopped eating and drinking the last day we were in

the

> hospital and they still sent her home. Yesterday the most I could

get

> her to drink was 4 oz and some of that I actually forced her to

drink

> through a syringe and she ate maybe 10 bites of food through the

> whole

> day. We are taking her to get an echo today to make sure there is

no

> infection in her heart since she had the VSD repair but don't

expect

> much.

>

> I am desperate to help her, she had completely regressed in all

ways.

> She was so close to walking and had mastered crawling and was even

> starting to drink from a sippy cup and eat with a spoon and fork.

Now

> she won't even hold her own bottle because she is so weak and won't

> stand and never crawls. She is only happy watching Elmo or with me

> holding her and reading books to her. Anyone have ANY ideas? The

> first three years are so important and I feel like she has

struggled

> through the first two to get where she is and now she is falling

> backwards. She is now at 8 weeks of daily hives, fevers and being

> miserable and I am going crazy, HELP!

>

> Thanks

> Kim

>

> I actually have talked to Dr. Leichtman once about this and he

told

> me to do some things that we were already doing. We have seen an

> Pumonologist as well as an Allergist as well as GI, Immunology,

> Hem/Onc, Rhumatology, and Infectious disease and still no one can

> help her. I am very worried about the fact that she won't crawl

or

> even hold her own bottle any more. She has lost weight and just

> won't drink more than 4 oz a day and barely eats. I know she will

> end up back in the hospital soon and am getting sick of no one

> knowing what to do. I know they are all trying to help her but

> nothing is happening. I did have a parent from our group contact

me

> who is a doc and he is being wonderful to help us and has given me

> some new ideas to try.

>

> She has had an abdominal ultrasound and chest x-ray as well as a

> bone scan and nothing has come up.

>

> The problem is now along with the occasional joint pain in her

hips

> her finger joints are swelling and she seems like it hurts her to

be

> picked up a little bit. She still is barely eating or drinking

and

> has lost some weight. Monday we are checking labs again. I sure

> wish it was something like her ears so at least we knew how to fix

> it. It may turn out to be something like that that they just

missed

> and we can fix, I sure hope so. >>>>>>>>

>

>

>

>

> Priscilla Kendrick, married 29 years to Darrel and parents of 9

kids including Evan, 10, born with Down Syndrome and Spina Bifida

>

> " My strength is made perfect in weakness. "

> " My grace is sufficient. " II Corinthians 12:9 KJV

>

>

>

>

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[Guest guest]

Hello-

I just read your post and can offer a suggestion.

My youngest daughter (21 mo. she does not have DS) was just

diagnosed with JRA- Juvenile Rheumatory Arthritis. The way they

diagnose this is by ruling out everything else it may be. I know

they ruled out TB & Lupus first. Her symptoms were similar to your

daughters in some respects. She had hives at the onset, but does not

have hives everyday. She had fevers at the onset as well, but again

not everyday anymore. She now has joint pain & swelling and her left

knee feels hot to the touch. Her middle finger on the left hand is

also affected. She was running before all of this and now she has a

hard time walking due to the pain.

There are three types of JRA. We believe th at our daughter has

Pauciarticular JRA. I know that you said that you saw a rhematologist

already, but here is what systemic onset JRA is described as on the

mayo clinic website:

Systemic JRA. Also known as Still's disease, systemic JRA affects

many areas of the body, including joints and internal organs. This is

the least common form of JRA.

Signs and symptoms of juvenile rheumatoid arthritis may include:

Joint swelling, with pain and stiffness. This may be more pronounced

in the morning or after a nap. Commonly it affects the knees and the

joints in the hands and feet. Children may complain of pain, or you

might notice them limping.

Fever and rash. These can be associated with many medical conditions,

but if they are persistent, they may signal systemic JRA. Fever and

rash caused by systemic JRA may appear and disappear quickly.

Swelling of lymph nodes. This sign may occur in children with

systemic JRA.

Eye inflammation. This problem, which occurs mostly in children with

pauciarticular JRA, produces no signs or symptoms in most of those

affected. Routine eye examinations are recommended because eye

inflammation may result in blindness.

Like other forms of arthritis, JRA is characterized by times when

symptoms are present (flares) and times when symptoms disappear

(remissions).

Best of luck in determining what your daughter has. You will be in

our prayers.

Michele