My is Flaring and I need help

[Guest guest]

Hi guys, I haven't written in a long while because (my 7 y.o.

son) was doing very well. He's having some issues lately and I took

him to see Doc Sinnott again in late November and he had the series,

however he is still in pain, sometimes pretty bad. I am reluctant

to take him to the rheumatologist, and I thought I would check with

you all and list some of his symptoms, old and new, and see if maybe

someone can help me figure out what to do. I am ultimately going to

have to go see someone, I can barely stand to see him in so much

pain.

Old symptoms:

Finger knuckle swollen at first joint next to hand

He has stiffness in feet and ankles, swelling and pain

Stiffness in knees, swelling and pain

Toe pain

Hand and elbow pain

Occasional chest pain

eczema like patch on penis which does not hurt or itch

New symptoms:

Back pain

More frequent chest pain (he says he thinks it's his heart)

Neck pain

Stomach pain

Shoulder pain

Headaches

Pain in arms and thighs

Two new finger knuckles swollen big in middle joint

Sometimes these new symptoms will cause him to grimace and cry in

pain. I give him naprosyn, but he usually declines saying the pain

will subside. He takes eyrthomycin (is that spelling right?) daily,

probiotics occasionally, supplements, apple cider vinegar (he loves

it!) He still has the old symptoms, but it seems that the new ones

hurt him more. He also tries to use the pain as a reason to stay

home with me and play video games instead of going to school, but I

think (hope) I have it down pretty good to know when he truly is in

need of a day of rest, which is rare but does occur.

I have a bit of " rheumatiz " as they used to say, but I have never

been completely crippled by it, as was at 16 months. As bad

as the prednisone, methotrexate and naprosyn are, he did get back to

walking after being on them. I took him off the prednisone after

several months and off the methotrexate when his fingernails started

turning black and falling off when he was about 4, that was our

first trip to Ida Grove. It worked wonderfully, now, less than two

months since our last trip, he wants to go back for another

treatment.

You are all in my prayers, and I thank you for all your advice.

Diane in St. Louis

[Guest guest]

Hi 's mom. My heart breaks when I hear that children are in pain. He

sounds very brave. The first thing I would do is take him to a pediatric

cardiologist if he is having heart symptoms. Heart damage can be ruled out with

several tests. Next, check with a pediatric

pulmonologist and then check with a pediatrict Rheumatologist. I don't know

where in the country you live, but if you go to the roadback foundation bulletin

board, someone will direct you. Ask! there are people there with sick

children. I don't know if they put children on Minocin. I know they put

teenagers on it for acne. Check with the pharmaceutical company Triax and see

what the rules are for dosing in children. Triax is the company that

manufactures the antibiotic. Have his B/P and P checked when he is complaining

about his heart. That is my scariest symptom. I chew Benicar for that and it

releaves the achiness, chest pain and pressure in my heart. Benicar is an ACE

inhibitor. Check it out! Dolores & Mike

dmrpd <dmdailey@...> wrote:

Hi guys, I haven't written in a long while because (my 7 y.o.

son) was doing very well. He's having some issues lately and I took

him to see Doc Sinnott again in late November and he had the series,

however he is still in pain, sometimes pretty bad. I am reluctant

to take him to the rheumatologist, and I thought I would check with

you all and list some of his symptoms, old and new, and see if maybe

someone can help me figure out what to do. I am ultimately going to

have to go see someone, I can barely stand to see him in so much

pain.

Old symptoms:

Finger knuckle swollen at first joint next to hand

He has stiffness in feet and ankles, swelling and pain

Stiffness in knees, swelling and pain

Toe pain

Hand and elbow pain

Occasional chest pain

eczema like patch on penis which does not hurt or itch

New symptoms:

Back pain

More frequent chest pain (he says he thinks it's his heart)

Neck pain

Stomach pain

Shoulder pain

Headaches

Pain in arms and thighs

Two new finger knuckles swollen big in middle joint

Sometimes these new symptoms will cause him to grimace and cry in

pain. I give him naprosyn, but he usually declines saying the pain

will subside. He takes eyrthomycin (is that spelling right?) daily,

probiotics occasionally, supplements, apple cider vinegar (he loves

it!) He still has the old symptoms, but it seems that the new ones

hurt him more. He also tries to use the pain as a reason to stay

home with me and play video games instead of going to school, but I

think (hope) I have it down pretty good to know when he truly is in

need of a day of rest, which is rare but does occur.

I have a bit of " rheumatiz " as they used to say, but I have never

been completely crippled by it, as was at 16 months. As bad

as the prednisone, methotrexate and naprosyn are, he did get back to

walking after being on them. I took him off the prednisone after

several months and off the methotrexate when his fingernails started

turning black and falling off when he was about 4, that was our

first trip to Ida Grove. It worked wonderfully, now, less than two

months since our last trip, he wants to go back for another

treatment.

You are all in my prayers, and I thank you for all your advice.

Diane in St. Louis

---------------------------------

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[Guest guest]

Hi Diane,

I am so sorry isn't feeling well. As you know, he's too young for the

Minocin, do you think the erythromycin helps? Do you think Sinott would do IVs

of antibiotics? It sounds like this is evolving, and maybe he should be

evaluated by an expert- maybe at one of the Washington University affiliates?

You

don't necessarily have to stick with them for treatment, but going for a

thorough evaluation could give you some answers on exactly what you're dealing

with.

For pain, I have found the epsom salt and peroxide baths to be so helpful, as

well as drinking a peeled lemon blended in water with a dash of olive oil. Do

you think food allergies could have anything to do with this - is he worse

within a day of eating certain things? Very best of luck to you- I hope he gets

a

reprieve very soon.

Emma

**************

Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Hi Diane,

I feel so bad when little ones are sick. It is very hard to know when they

are just making things up and I wish I had been more patient with my

daughter when she was little.

First of all why don't you call Sennett back and talk to him? From hearing

other people talk about him he does very good on the phone. Also maybe

needs to take the erythromycin MWF instead of daily.just a thought. but you

should ask Sennett. He may also need a different antibiotic. Don't let him

hang up till he does something different :-)

Naprosyn is horribly bad on the stomach. Maybe Sennett can order something

else for the pain. I would stay away from antinflams if at all possible. I

know there are homeopath things that are good. Things like cats claw and

Quercetin (sp). I have no idea what strength to use for children. I have a

compounding pharmacist that may help you. Here is her email. You can ask her

questions. M@... tell her Cooky told you about her.

needs probiotics everyday when he is on antibiotics. If he does not

take them he may have leaky gut and this in itself may cause joint pains and

other things. sells a probiotic lozenge that my granddaughter loves. I

am not pushing her products .just trying to help. She can send them in the

mail to wherever you live. I have them delivered to my daughter in Ohio.

Ice is very good for joint pain.

I don't know how long has been on antibiotics but he should see some

relief in a reasonable time or he needs a different regiment. I hope he

feels better soon. Lets us know what happens and whatever you do try not to

revert to a rheumatologist and the killing drugs.

Hugs to and you.

Cooky

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of dmrpd

Sent: Wednesday, January 09, 2008 1:02 AM

rheumatic

Subject: rheumatic My is Flaring and I need help

Hi guys, I haven't written in a long while because (my 7 y.o.

son) was doing very well. He's having some issues lately and I took

him to see Doc Sinnott again in late November and he had the series,

however he is still in pain, sometimes pretty bad. I am reluctant

to take him to the rheumatologist, and I thought I would check with

you all and list some of his symptoms, old and new, and see if maybe

someone can help me figure out what to do. I am ultimately going to

have to go see someone, I can barely stand to see him in so much

pain.

[Guest guest]

Hi, Diane:

There are situations that can require extensive testing to find it, but I wonder

whether has ever had giardiasis. This can mimic many of the inflammatory

arthritides, especially AS (ankylosing spondylitis), but AS/Reiter's does not

seem to be the specific situation.

I can only suggest things to do " If he were my own son, " and I don't want to

have you do unnecessary tests, but I would consult with a physician whether a

course of Flagyl (metronidazole) would be appropriate, followed by a different

antibiotic agent. And, these might be followed with some anti-candidiasis and

probiotic measures.

Hope his health can be restored soon--

dmrpd <dmdailey@...> wrote: Hi guys, I

haven't written in a long while because (my 7 y.o.

son) was doing very well. He's having some issues lately and I took

him to see Doc Sinnott again in late November and he had the series,

however he is still in pain, sometimes pretty bad. I am reluctant

to take him to the rheumatologist, and I thought I would check with

you all and list some of his symptoms, old and new, and see if maybe

someone can help me figure out what to do. I am ultimately going to

have to go see someone, I can barely stand to see him in so much

pain.

Old symptoms:

Finger knuckle swollen at first joint next to hand

He has stiffness in feet and ankles, swelling and pain

Stiffness in knees, swelling and pain

Toe pain

Hand and elbow pain

Occasional chest pain

eczema like patch on penis which does not hurt or itch

New symptoms:

Back pain

More frequent chest pain (he says he thinks it's his heart)

Neck pain

Stomach pain

Shoulder pain

Headaches

Pain in arms and thighs

Two new finger knuckles swollen big in middle joint

Sometimes these new symptoms will cause him to grimace and cry in

pain. I give him naprosyn, but he usually declines saying the pain

will subside. He takes eyrthomycin (is that spelling right?) daily,

probiotics occasionally, supplements, apple cider vinegar (he loves

it!) He still has the old symptoms, but it seems that the new ones

hurt him more. He also tries to use the pain as a reason to stay

home with me and play video games instead of going to school, but I

think (hope) I have it down pretty good to know when he truly is in

need of a day of rest, which is rare but does occur.

I have a bit of " rheumatiz " as they used to say, but I have never

been completely crippled by it, as was at 16 months. As bad

as the prednisone, methotrexate and naprosyn are, he did get back to

walking after being on them. I took him off the prednisone after

several months and off the methotrexate when his fingernails started

turning black and falling off when he was about 4, that was our

first trip to Ida Grove. It worked wonderfully, now, less than two

months since our last trip, he wants to go back for another

treatment.

You are all in my prayers, and I thank you for all your advice.

Diane in St. Louis

---------------------------------

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