New with lots of questions

February 26, 2005

Kathy,

The test you absolutely must have done is Free T3 and T3. You need to have

an idea what is being taken up at CELLUAR level in your tissues, not just

what is in the bloodstream. Get educated about your condition, so you can

ask more informed questions of any doc or endo.

Now just reading recently medical students - at least in the U.K.- stopped

studying the thyroid after 1975. Endo's are more versed in diabetes and know

next to nothing of any help to a suffering hypo patient, much less care

about your symptoms. I beg you, please don't allow your doc to treat your

BLOOD TEST RESULT and not YOU!

Get your knowledge from people who are patient advocates, because they are

sufferers too, and give you the benefit of their experience of the disease.

Get onto the website About.com and look up Shomon's newletters you wont

be disappointed.

Best of luck and God Bless you in your quest for better health.

New with lots of Questions

>

> Hello Everyone !! I was told by one physician that I had

> Hypothyroid problems. I am Cold alot, Have a hard time getting warm,

> Sluggish, Hair is thin & brittle....etc. Well then we moved out of

> state, Hubby got transferred & insurance changed. So I go to

> another Dr. She says I am Insulin resistant....but sends me to have

> a T3 thyroid test done. It shows up borderline normal. My grandma

> had to have her thyroid removed at a relatively young age ....along

> with a bunch of my Aunts, having problems. Is there any other tests

> than can give me more accurate results, any info ..insight is

> GREATLY appreciated !! Some days I feel like I don't have enough

> energy to make it till Noon . Is there anything I can take ? any

> tests I can request ? PLEASE HELP !!

> Thank you so much

> Kathy P.

>

October 18, 2009

Maya -

My daughter Lucy is 7 and has jra. She was diagnosed last Thanksgiving. I

don't remember all of the tests they ran, maybe someone else can help us

out. JRA is really a disease of elimination in kids. Lucy tested

negative for rhematoid factor, but then most kids do. They checked to see

if she had an infection in her joints and tested her white blood cell

count. Everything looked good except she had stiff and swollen joints. An

MRI showed inflammation in her wrists. She had gone the required 6 weeks

with pain and stiffness and after ruling everything else out they told us

she had jra. Since then it has spread to all of the large joints.

She is on Enbrel, one shot a week. She takes Mobic, a NSAID (non-steroidal

antiinflammtory drug) which is in the same class as Motrin and Naproxen.

She started out taking naproxen, but had a lot of stomach troubles. She is

still having the problems with Mobic, but not as bad. She takes prevacid

for the heartburn and stomach pain. She takes 0.5 ml of prednisone a day.

The combination is working pretty well for her in that the rheumy can't find

any signs of inflammation in her joints, but she still has days where she

hurts a lot. The things that work best for her are hot baths and a heated

mattress pad. She also meets with an occupational therapist 3 mornings a

week before school to stretch and flex and get her joints moving. That has

been a godsend.

Good luck with your daughter. Keep us posted of the test results.

Amy and Lucy (7, poly

On Sat, Oct 17, 2009 at 2:45 PM, Maya <maya.israel09@...> wrote:

>

> Hi Everyone. My name is Maya. I have a 7 year year old daughter, Kayla, who

> is being tested for rheumatoid arthritis. She already has an autoimmune

> disorder called eosinophilic gastrointestinal disorder (EGID) which causes

> her not to be able to eat ANY food proteins. At the moment, she is getting

> her nutrition from a specialized formula and is doing really well--we've

> been dealing with EGID for a bit over a year now. Our journey into looking

> at arthritis is just beginning, but has has been complaining about joint

> pains in one of her hips and both of her knees for a long time. We kept

> hearing that she is having " Growing Pains " , so I didn't do too much about it

> until recently. Now, I am learning that if someone has one autoimmune

> disease, they are much more likely to have others as well. Long story short,

> I have a few questions:

> 1) What kinds of tests do kiddos get to test for rheumatoid arthritis? Our

> doc had us do some blood work, but Kayla has had the flu for over a week, so

> we haven't yet taken her to the lab.

> 2) When your kiddos have joint pain, what are some suggestions to help with

> the pain? We give Kayla children's motrin, which helps. Is there anything

> else?

> 3) Kayla recently got glasses, but we went to a regular optometrist to

> check her eyes. From my reading, though, it sounds like, if Kayla does have

> RA, we should have a more specialized eye examination. What types of eye

> exam is required?

>

> Thanks for your help. It seems like I am finally getting my bearings with

> Kayla's EGID and now we are exploring a whole new area of medical care!

>

> Maya

>

October 18, 2009

Maya,

Welcome to our group. I hope that they will determine that you daughter does not

have JRA but if she does this list will serve as a great resource for you. My

daughter Jaye began this journey four years ago with swelling in one

ankle which quickly moved to both ankles and knees within the first three

months. When we got our diagnosis one of our Pediatricians came to us and said

that looking back she was certain that Jaye had the JRA for quite a long

time. There were many times we went to the doctor with one ailement or another

and she had complaints of achy joints, her neck her back her body all over but

the swelling was minor and so we dealt with her more pressing health concerns at

that time and we figured that she was having growing pains. For the most part

prior to her JRA diagnosis the Ibuprophin or Naproxin would work to help her so

we dismissed it. I wish I had known then what I know now. When Jaye had

her problems in 2005, the ped's in the office both checked her out and within a

month we were hooked up with a rheumy. I am not sure how we were able to get

her diagnosis so quick but assume it had to do with all her history of being in

and out of the doctor's office and all of their documentation. We had a

tentitive diagnosis in 3 weeks with a firm diagnosis in 3 months. At least that

is how I remember it now it has been a while and we have dealt with alot. I

actually think that a quick diagnosis like ours is rare. Jaye's labs

have always been pretty normal, she had a sed rate that was elevated in the

beginning but all other labs have been good until she was diagnosed with having

a vitamine D deficiency. Jaye has been on many of the NSAIDS but they

were not enough, she is now on a handful of meds. Daily she takes Mobic, Folic

acid, Prevacid, Keppra, & Hydroxichloroquine, and then she takes the

Methotrexate injections once a week. She was on the Vitamine D suppliment but

has now been taken off so we can test her in a couple of weeks to see if those

levels are any better. Jaye sees the Opthamologist every three to six

months depending on the outcome of her tests. She has never had inflamation in

her eyes but she has other problems that they watch for as well and it keeps us

going back. I would recommend that you take Kayla to a pediatric opthamologist

that has dealt with others with JRA, also I hope you are seeing a pediatric

rheumatologist. I am not sure where you are located but hope you can find good

doctors close to where you live. So many people have to travel long distances

to see the specialists they need. We are in Kansas and only have to travel 3

hours to get to our rheumy and opth. Others on this list have to travel much

farther. Jaye also has a seizure disorder that is well controlled and

asthma that is doing good at this time only her JRA at present is our

frustration.

Veri & Jaye 15 poly

New with LOTS of questions

Hi Everyone. My name is Maya. I have a 7 year year old daughter, Kayla, who is

being tested for rheumatoid arthritis. She already has an autoimmune disorder

called eosinophilic gastrointestinal disorder (EGID) which causes her not to be

able to eat ANY food proteins. At the moment, she is getting her nutrition from

a specialized formula and is doing really well--we've been dealing with EGID for

a bit over a year now. Our journey into looking at arthritis is just beginning,

but has has been complaining about joint pains in one of her hips and both of

her knees for a long time. We kept hearing that she is having " Growing Pains " ,

so I didn't do too much about it until recently. Now, I am learning that if

someone has one autoimmune disease, they are much more likely to have others as

well. Long story short, I have a few questions:

1) What kinds of tests do kiddos get to test for rheumatoid arthritis? Our doc

had us do some blood work, but Kayla has had the flu for over a week, so we

haven't yet taken her to the lab.

2) When your kiddos have joint pain, what are some suggestions to help with the

pain? We give Kayla children's motrin, which helps. Is there anything else?

3) Kayla recently got glasses, but we went to a regular optometrist to check her

eyes. From my reading, though, it sounds like, if Kayla does have RA, we should

have a more specialized eye examination. What types of eye exam is required?

Thanks for your help. It seems like I am finally getting my bearings with

Kayla's EGID and now we are exploring a whole new area of medical care!

Maya

October 20, 2009

Thanks for the answers! Well, we got Kayla's blood work results and her

sedimentation rate is high (26, where normal is 0-10) although I am not sure

exactly what that means. The pediatrician referred us to the rheumatology

department at Cincinnati Children's Hospital, which is where Kayla is treated

for her EGID. I expect that it is a good department as it is a REALLY great

children's hospital. At least I know we are in good hands, but this is a bit

overwhelming. We finally got settled with treating her EGID and now we are

exploring a whole new autoimmune disorder. In any case, if you have any advice

on questions to ask when we get to Cincinnati Children's, I would appreciate

your sharing with me.

Take care,

Maya

April 18, 2010

I have 2 sons that I suspect may have PDD-NOS. The oldest (12) has a hard time

starting a discussion even with family members. He doesn't start them with kids

at school at all, that I know of. His teacher's say that he will answer the

kids' questions however. He does not have friends that he does things with. At

recess he will sit and watch the other kids but he will not join in. He has

always avoided gatherings of people. When he was little he wouldn't even open

presents at our Christmas gathering because there were 2 people there that he

wasn't very familiar with. He went into another room and sat there. I have

noticed that when we try to talk to him, even casually, he tenses up and starts

moving his tongue around in his mouth. A lot of times he avoids making eye

contact with others who try to talk to him. He also will sit and pick at his

socks while reading or watching t.v. until there are holes in them. Does this

sound like an anxiety issue or possibly PDD? His bone growth was also delayed

when he was younger.

My other son (7) has to be in control of everything. If something happens

differently than he thinks it should he throws a tantrum. He doesn't get his

way when this happens so I don't believe he's just " acting up " . He has certain

ways he thinks that things should be done. He uses certain dishes and cups. He

gets very upset if someone sits in the " wrong " seat at the table or does

something out of order.

Is it possible that l-carnitine could help my boys? I've also been reading

about a clay bath that will extract metals. Are these things safe to use if my

boys don't have PDD?

Any ideas, experiences or suggestions are welcome, as we are in new territory.

April 19, 2010

> My other son (7) has to be in control of everything. If something happens

differently than he thinks it should he throws a tantrum. He doesn't get his

way when this happens so I don't believe he's just " acting up " . He has certain

ways he thinks that things should be done. He uses certain dishes and cups. He

gets very upset if someone sits in the " wrong " seat at the table or does

something out of order.

This was mostly B12 deficiency at my house, altho anti-virals and anti-fungals

helped also.

Dana

April 19, 2010

Why don't you take them to a children Psychiatrist?it is very dangerous to try

diagnosing and healing all by yourself. there is so many illness other than

autism in the world. why not they have (I hope not)one of them...

>

> I have 2 sons that I suspect may have PDD-NOS. The oldest (12) has a hard

time starting a discussion even with family members. He doesn't start them with

kids at school at all, that I know of. His teacher's say that he will answer

the kids' questions however. He does not have friends that he does things with.

At recess he will sit and watch the other kids but he will not join in. He has