Chase

[Guest guest]

Deadra, My son had his adenoids removed at age 6. He sleeps normal

now. He also would wet the bed, before he got his adenoids out.

After he got them out, he NEVER did it again. I think you will see a

big difference. Good luck. (n, 17, systemic)

On Oct 26, 2006, at 6:57 PM, Deadra Dunbar wrote:

> Chase has had another flare. His uveitis is back as well. Dr.

> upped his Remicade to 500mg but the gastroenterologist that does

> his infusions said that due to his weight, he would be giving him

> 600mg, because if he only gave 500mg, it wouldn't help. We also had

> the results from his sleep study test. He stopped breathing 26

> times per hour. I asked what the usual was for an 8 yr. old, and he

> said less than one. They are going to schedule him for a

> tonsilectomy and adnoid removal. They also said that it should help

> with his bedwetting. I don't know how many of your kids bed wet,

> but we have tried everything, including medication, and nothing

> worked. The doctor said that 50% of the kids that get this

> operation stop wetting the bed, so that will be a plus also. I

> remember when Chase went to camp this summer that the dr. said over

> 50% of the kids were bedwetters, and it got me wondering if JRA has

> something to do with that as well. Well, I've rambled on long

> enough. Hope

> all of you are doing great. Happy Halloween.

> Deadra and Chase 8 pauci and uveitis

>

>

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

> Get your own web address for just $1.99/1st yr. We'll help.

> Small Business.

>

>

[Guest guest]

Deadra,

I am glad you got the Sleep Study done. Saddened by the result's though.

But glad you found out. Sleep Apnea runs in my Family. Most of my Siblings

have been tested and came out resulting in having it. is the 3rd

Generation with it. I am not sure if JRA plays a Bigger role in it or the

Inherited factor. What I have done is set up a Intercom in her bedroom and put

the

other in my Bedroom. If she has any trouble she can smack it or I can hear her

breatheing. My Sister sleeps in room when she comes over. This has

helped a lot.

Now the bedwetting. has had few problems with that. When she did

the Dr told us that it was due to the Bladder having spasms. We had a Test

done and it showed some damage. This Dr related this to the JRA and Connective

Tissue Disease. as CTD attacks the muscles.

Hoping the Surgery will help him more and stop what is going on.

Robbin

[Guest guest]

-Deadra,

Im sorry to read that Chase has been flaring. It seems a lot of our

little ones have been flaring recently.

Thats a huge dose of remicade, how many mg does he get per kg??

I hope hes feeling better soon and thr surgery helps solve more than

the one issue.

hugs Helen and (9,systemic)

-- In , Deadra Dunbar

<fortheloveofmyson1998_5@...> wrote:

>

> Chase has had another flare. His uveitis is back as well.

Dr. upped his Remicade to 500mg but the gastroenterologist

that does his infusions said that due to his weight, he would be

giving him 600mg, because if he only gave 500mg, it wouldn't help.

We also had the results from his sleep study test. He stopped

breathing 26 times per hour. I asked what the usual was for an 8 yr.

old, and he said less than one. They are going to schedule him for a

tonsilectomy and adnoid removal. They also said that it should help

with his bedwetting. I don't know how many of your kids bed wet, but

we have tried everything, including medication, and nothing worked.

The doctor said that 50% of the kids that get this operation stop

wetting the bed, so that will be a plus also. I remember when Chase

went to camp this summer that the dr. said over 50% of the kids were

bedwetters, and it got me wondering if JRA has something to do with

that as well. Well, I've rambled on long enough. Hope

> all of you are doing great. Happy Halloween.

> Deadra and Chase 8 pauci and uveitis

>

>

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

> Get your own web address for just $1.99/1st yr. We'll help.

Small Business.

>

>

[Guest guest]

Deadra,

Both of my kids were bedwetters. It was fun when they both wet their beds on

the same night. lol. Both kids have now outgrown it. Josh stopped bedwetting at

age 10 or 11 and at age 7 or 8.

Teri

Chase

Chase has had another flare. His uveitis is back as well. Dr. upped his

Remicade to 500mg but the gastroenterologist that does his infusions said that

due to his weight, he would be giving him 600mg, because if he only gave 500mg,

it wouldn't help. We also had the results from his sleep study test. He stopped

breathing 26 times per hour. I asked what the usual was for an 8 yr. old, and he

said less than one. They are going to schedule him for a tonsilectomy and adnoid

removal. They also said that it should help with his bedwetting. I don't know

how many of your kids bed wet, but we have tried everything, including

medication, and nothing worked. The doctor said that 50% of the kids that get

this operation stop wetting the bed, so that will be a plus also. I remember

when Chase went to camp this summer that the dr. said over 50% of the kids were

bedwetters, and it got me wondering if JRA has something to do with that as

well. Well, I've rambled on long enough. Hope

all of you are doing great. Happy Halloween.

Deadra and Chase 8 pauci and uveitis

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

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

[Guest guest]

What kind of test do they do to show the CTD? I mentioned this to my husband and

he was wondering if we contact the rheumy or the pediatrician for this?

Thankyou.

Deadra

Robbin40@... wrote:

Deadra,

I am glad you got the Sleep Study done. Saddened by the result's though.

But glad you found out. Sleep Apnea runs in my Family. Most of my Siblings

have been tested and came out resulting in having it. is the 3rd

Generation with it. I am not sure if JRA plays a Bigger role in it or the

Inherited factor. What I have done is set up a Intercom in her bedroom and put

the

other in my Bedroom. If she has any trouble she can smack it or I can hear her

breatheing. My Sister sleeps in room when she comes over. This has

helped a lot.

Now the bedwetting. has had few problems with that. When she did

the Dr told us that it was due to the Bladder having spasms. We had a Test

done and it showed some damage. This Dr related this to the JRA and Connective

Tissue Disease. as CTD attacks the muscles.

Hoping the Surgery will help him more and stop what is going on.

Robbin

[Guest guest]

Chase's tonsilectomy and adnoid surgery has been cancelled. His doctor just

called and said with the medications that it would be too fragile. He had the

solumedrol push this weekend, and a rheumy appt. on Monday. I kept him home from

school yesterday because he was saying that his upper back and shoulders hurt so

much. He never complains of pain, so I knew he must have been hurting. I tried a

heating pad, which he said helped a little. Last night when I was tucking him

in, I hugged him and he cried out that he was hurting again. Has anyone heard of

a new clinical study in Bethesda, land that requires 12 months of infusions,

once monthly? Chase's rheumy told us about it, and was going to e-mail the

physician that is doing it. It is for kids with chronic uveitis, JRA who haven't

responded to previous medications. I asked her the possible side effects, and

she said it is the same for other chemo drugs, possible leukemia when he is

older, etc. We go to Boston to see Dr.

tomorrow, so I will be bringing it up with him. Take care.

Deadra and Chase 8 pauci and uveitis

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

Everyone is raving about the all-new beta.

[Guest guest]

Hi Deadra - Chase just isn't getting a break is he? I know things are tough

right now, I wish I had some more answers or some hope. We are praying for you

guys though.

Yes, the NIH is running that study. Caroline's rheumy wanted her enrolled,

but she is not old enough. I think it's for age 6+.

Alia and Caroline, age 4, poly and uveitis

[Guest guest]

I told him and he said THANK YOU!!

Beth Yohnk <yohnkmom@...> wrote: Tell Chase Happy

Birthday!!!!

Beth & Hannah (10, unspecified arthritis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

Chase

We had a doctor appointment in Boston with Dr. and Chase has cells again

in both eyes. I figured he was having a flare because all last week he

complained of bad hip pain when he woke up, and even soaking in a warm bath and

the heating pad didn't help. He had another dose of IVIG and got sick on the

second day from that. It was the same symptoms that he had after the second day

of his three day dose in December. Dr. thought that maybe the rate was

given too fast, but I told him it was given for 3 days in December, and only 2

in Feb. and Chase experienced the same symptoms. He was sooooo sick and his head

was hurting him so much that he couldn't even lift it off the pillow for 2 days.

I told Dr. that I was not going to put him through that anymore. I asked

if there was any more oral medications that Chase could take, but unfortunately

we are at the end of the line for that. Dr. and his pediatric rheumy want

us to try Humira. I know this comes in

pen form, so that is the way we will go. Chase used to take Mtx. sq, and would

always vomit when he saw the needle, not to mention that my husband used to hold

him down while he was kicking and screaming for me to administer the shot. Has

any of you had any experience with the Humira pen? Does it work similiarly as

the MTX. as far as injecting it at a 90 degreee angle? The doctors also said

that it burns afterward. How much? What should I be prepared for? We are

supposed to start it next week as Chase just started taking azithromycin for a

cough that he has had since December. He was on Nasonyx spray for 2 weeks, but

that did nothing. His pediatrician thinks he may have sinusitis. If the cough

doesn't clear up in 2 weeks, we go back again. Just when you think things are

going good, Arthur comes back with a roar to put you back down.

I look forward to hearing from anyone who may have experience with Humira.

Chase turned 9 today, so we will be celebrating his birthday!

Deadra and Chase (now 9!) uveitis and pauci JRA

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

Any questions? Get answers on any topic at Answers. Try it now.

[Guest guest]

Deadra,

I am sorry to hear Chase is going through a flare and bad reaction to IVIG. I

wanted to ask, has the dr ever had Chase try a different brand of IVIG? What

brand does he receive? Has subQ been considered?

My daughter has been on IVIG (now subQ) for 11 months for a primary immune

deficiency (CVID) and I am part of an immune deficiency forum - IVIG being the

only treatment, there is continual exchange if info on IVIG/products, reactions,

what works, what doesn't etc. There is a difference between products, as some

add different, or more or less " fillers " (sucrose, etc). Some kids may have

problems with one brand, say Carrimune, but do fine with Gammunex. Rate is

important. How many grams does Chase receive each infusion? It is a higher

dosage for autoimmune, I know. My daughter was just diagnosed with jspa but her

rheumy said the IVIG isn't generally a good treatment choice for it so

increasing her dose likely would not help. Anyway, with subQ, sometimes the

side effects are greatly diminished or go away... has migraines and the

subQ does not aggravate them like IVIG because, while you infuse more often, it

is less volume per infusion and absorbed more slowly.

There are other factors that can help with a successful infusion - being well

hydrated is really important. Have you used benadryl and advil prior to

infusions?

It still may not be the treatment for Chase, and I know you don't want to have

him suffer each treatment. Just some things to consider before IVIG is

completely written off...

If you have any questions or anything, you can e-mail me off list or here...

mom to , 16, CVID, jspa, fibro, migraines

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

We had a doctor appointment in Boston with Dr. and Chase has cells again

in both eyes. I figured he was having a flare because all last week he

complained of bad hip pain when he woke up, and even soaking in a warm bath and

the heating pad didn't help. He had another dose of IVIG and got sick on the

second day from that. It was the same symptoms that he had after the second day

of his three day dose in December. Dr. thought that maybe the rate was

given too fast, but I told him it was given for 3 days in December, and only 2

in Feb. and Chase experienced the same symptoms. He was sooooo sick and his head

was hurting him so much that he couldn't even lift it off the pillow for 2 days.

I told Dr. that I was not going to put him through that anymore. I asked

if there was any more oral medications that Chase could take, but unfortunately

we are at the end of the line

for that. Dr. and his pediatric rheumy want us to try Humira. I know

this comes in

pen form, so that is the way we will go. Chase used to take Mtx. sq, and would

always vomit when he saw the needle, not to mention that my husband used to hold

him down while he was kicking and screaming for me to administer the shot. Has

any of you had any experience with the Humira pen? Does it work similiarly as

the MTX. as far as injecting it at a 90 degreee angle? The doctors also said

that it burns afterward. How much? What should I be prepared for? We are

supposed to start it next week as Chase just started taking azithromycin for a

cough that he has had since December. He was on Nasonyx spray for 2 weeks, but

that did nothing. His pediatrician thinks he may have sinusitis. If the cough

doesn't clear up in 2 weeks, we go back again. Just when you think things are

going good, Arthur comes back with a roar to put you back down.

I look forward to hearing from anyone who may have experience with Humira.

Chase turned 9 today, so we will be celebrating his birthday!

Deadra and Chase (now 9!) uveitis and pauci JRA

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

Any questions? Get answers on any topic at Answers. Try it now.

[Guest guest]

I forgot - please tell HAPPY BIRTHDAY!!!

&

Deadra Dunbar <fortheloveofmyson1998_5@...> wrote:

We had a doctor appointment in Boston with Dr. and Chase has cells again

in both eyes. I figured he was having a flare because all last week he

complained of bad hip pain when he woke up, and even soaking in a warm bath and

the heating pad didn't help. He had another dose of IVIG and got sick on the

second day from that. It was the same symptoms that he had after the second day

of his three day dose in December. Dr. thought that maybe the rate was

given too fast, but I told him it was given for 3 days in December, and only 2

in Feb. and Chase experienced the same symptoms. He was sooooo sick and his head

was hurting him so much that he couldn't even lift it off the pillow for 2 days.

I told Dr. that I was not going to put him through that anymore. I asked

if there was any more oral medications that Chase could take, but unfortunately

we are at the end of the line

for that. Dr. and his pediatric rheumy want us to try Humira. I know

this comes in

pen form, so that is the way we will go. Chase used to take Mtx. sq, and would

always vomit when he saw the needle, not to mention that my husband used to hold

him down while he was kicking and screaming for me to administer the shot. Has

any of you had any experience with the Humira pen? Does it work similiarly as

the MTX. as far as injecting it at a 90 degreee angle? The doctors also said

that it burns afterward. How much? What should I be prepared for? We are

supposed to start it next week as Chase just started taking azithromycin for a

cough that he has had since December. He was on Nasonyx spray for 2 weeks, but

that did nothing. His pediatrician thinks he may have sinusitis. If the cough

doesn't clear up in 2 weeks, we go back again. Just when you think things are

going good, Arthur comes back with a roar to put you back down.

I look forward to hearing from anyone who may have experience with Humira.

Chase turned 9 today, so we will be celebrating his birthday!

Deadra and Chase (now 9!) uveitis and pauci JRA

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

Any questions? Get answers on any topic at Answers. Try it now.