Update on

March 26, 2010

So great to hear a good message. Thanks for letting us hear of your son's

success.

Dianne Grandma to Nora 15 and Emmy 13 Poly JIA

>

> Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to as

the " R " word for a long time - as in the past when would really seem to

be improving we would drop the steriods 1/2 cc and bam he would have a horrible

flare and end up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the next flare and

for so very long, we never seemed to have to wait long. The reality now is that

it has been over two years since 's last flare. It has been about 4 years

since his last hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last cyclosporine

dose & 6 months since his last methotrexate shot!!!!!!! That's right - my boy

has been medication free for 6 months!!! (With the exceptiion of the very rare

motrin.) The rheumy is using the " R " word - but I am not quite ready for

that... He does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing to be

vigilant. We still have concerns - his growth, his bone density, his back

issues related to the compression fracture - but I am really starting to believe

in that light at the end of the tunnel!! Those of you who have been around

awhile remember well how much struggled - and as much as I was afraid to

say out loud how well he is doing (like when he went a whole school year without

being hospitalized for the first time - I didn't say anything til the last week

of school!) - but there is hope - and there can be better times ahead!

>

> Val

> Rob's Mom (12, systemic)

>

March 30, 2010

Yes , he certainly is!

Val

Re: Update on

God is good. (n, 21, systemic)

n Mar 25, 2010, at 11:53 AM, carneyval@... wrote:

>

Hello dear friends. I thought it was about time to let you guys

know how incredibly well has been doing. I have avoided

using what I refer to as the " R " word for a long time - as in the

past when would really seem to be improving we would drop

the steriods 1/2 cc and bam he would have a horrible flare and end

up back inthe hospital and then on doses increasingly higher than

he had ever seen before. I always felt like I was waiting for the

next flare and for so very long, we never seemed to have to wait

long. The reality now is that it has been over two years since

's last flare. It has been about 4 years since his last

hospitalization!!!! And now - are you ready for this???? It has

been 9 months since his last steriod dose, 9 months since his last

cyclosporine dose & 6 months since his last methotrexate

shot!!!!!!! That's right - my boy has been medication free for 6

months!!! (With the exceptiion of the very rare motrin.) The rheumy

is using the " R " word - but I am not quite ready for that... He

does have the rare stiff morning and ocassional ache - but the ache

is so rare that it may be from PE or baseball - but I am continuing

to be vigilant. We still have concerns - his growth, his bone

density, his back issues related to the compression fracture - but

I am really starting to believe in that light at the end of the

tunnel!! Those of you who have been around awhile remember well how

much struggled - and as much as I was afraid to say out loud

how well he is doing (like when he went a whole school year without

being hospitalized for the first time - I didn't say anything til

the last week of school!) - but there is hope - and there can be

better times ahead!

Val

Rob's Mom (12, systemic)

March 30, 2010

Thanks LIz! We are trying to work it into our schedule - has a

tournament the weekend of the walk - I am working on getting more details on the

tournament schedule so that we can participate.

Val

Update on

Hello dear friends. I thought it was about time to let you guys know how

incredibly well has been doing. I have avoided using what I refer to

as the " R " word for a long time - as in the past when would really

seem to be improving we would drop the steriods 1/2 cc and bam he would have

a horrible flare and end up back inthe hospital and then on doses

increasingly higher than he had ever seen before. I always felt like I was

waiting for the next flare and for so very long, we never seemed to have to

wait long. The reality now is that it has been over two years since 's

last flare. It has been about 4 years since his last hospitalization!!!! And

now - are you ready for this???? It has been 9 months since his last steriod

dose, 9 months since his last cyclosporine dose & 6 months since his last

methotrexate shot!!!!!!! That's right - my boy has been medication free for

6 months!!! (With the exceptiion of the very rare motrin.) The rheumy is

using the " R " word - but I am not quite ready for that... He does have the

rare stiff morning and ocassional ache - but the ache is so rare that it may

be from PE or baseball - but I am continuing to be vigilant. We still have

concerns - his growth, his bone density, his back issues related to the

compression fracture - but I am really starting to believe in that light at

the end of the tunnel!! Those of you who have been around awhile remember

well how much struggled - and as much as I was afraid to say out loud

how well he is doing (like when he went a whole school year without being

hospitalized for the first time - I didn't say anything til the last week of

school!) - but there is hope - and there can be better times ahead!

Val

Rob's Mom (12, systemic)

April 30, 2010

Alyssa,

I dont know if you are able but 1-2 weeks before casting day i "quarantine" my son. I keep him at home and limit the people that can come over and i always make sure they are healthy first. This may not be an option for you but so far it has worked really well for us.

Also, i dont know if the steroids are the same kind my son had after his brain surgery but if so be prepared...she may eat everything in sight and have trouble sleeping. Those were the side effects we really noticed from it. It may be a different kind though.

I hope all goes well and she gets better and stays well so she can be casted!

From: Alyssa <rogersalyssa12@...>Subject: Update on infantile scoliosis treatment Date: Thursday, April 29, 2010, 6:18 PM

We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa

April 30, 2010

Aw! That is so disappointing! I hope the meds will clear things right up. I'll be praying the third time will be the charm. Hang in there! Hugs, ,mommy to Todd

On Apr 29, 2010 7:19 PM, " Alyssa " <rogersalyssa12@...> wrote:

We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed.

Somedays I feel like I have the worse luck. Alyssa

April 30, 2010

We try to "semi-quarantine" Bex for about a week before each cast, especially the five days right before. But he would go stir crazy if we never left the house. We just try not to take him to indoor classes, playrooms or enclosed spaces with other kids who could be sick. We still take him outdoors and to the park, and just steer him away from kids with a cough or runny nose (screaming, ha), then use antibacterial gel and wipes more diligently than usual. Hope this helps. Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: <missikay10@...>infantile scoliosis treatment Sent: Thu, April 29, 2010 4:26:26 PMSubject: Re: Update on

Alyssa,

I dont know if you are able but 1-2 weeks before casting day i "quarantine" my son. I keep him at home and limit the people that can come over and i always make sure they are healthy first. This may not be an option for you but so far it has worked really well for us.

Also, i dont know if the steroids are the same kind my son had after his brain surgery but if so be prepared...she may eat everything in sight and have trouble sleeping. Those were the side effects we really noticed from it. It may be a different kind though.

I hope all goes well and she gets better and stays well so she can be casted!

From: Alyssa <rogersalyssa12>Subject: [infantile_scoliosi s] Update on infantile scoliosis treatment @groups. comDate: Thursday, April 29, 2010, 6:18 PM

We went to see a pulmonologist today and after many questions we think we have an answer. He thinks she is always sick because of daycare and because she has eczema that her chest congestion is worse. I was not putting two and two together so he explained. Just like the inflammation eczema causes on the skin it also causes inflammation of her lungs. He gave us steriods to get rid of the congestion and I called to have the next cast scheduled. She has to be on the medicine for 1 week so I was trying for this Thursday which would be 3 weeks in a row but the cast Dr is going to be out all week so it looks like 2 weeks for us. I really hope she doesn't get sick again. Fingers crossed. Somedays I feel like I have the worse luck. Alyssa

April 30, 2010

If it is prednisone it can have varying effects - it can make them moody and

kind of crazy - even when I take it as an adult my family asks me when I'm going

to be done taking it (I guess it kind of makes me a little edgey - to put it

nicely) It does not effect my son that way though so hopefully you will have

good results. If she happens to have severe allergies, which Londynn seems to -

we went thru all the over the counter allergy meds - we were finally approved

for Singulair - and that has helped tremendously. Good Luck we will be thinking

of you.

>

> >From: Alyssa <rogersalyssa12>

> >Subject: [infantile_scoliosi s] Update on

> >infantile scoliosis treatment @groups. com

> >Date: Thursday, April 29, 2010, 6:18 PM

> >

> >We went to see a pulmonologist today and after many questions we think we

have an answer. He thinks she is always sick because of daycare and because she

has eczema that her chest congestion is worse. I was not putting two and two

together so he explained. Just like the inflammation eczema causes on the skin

it also causes inflammation of her lungs. He gave us steriods to get rid of the

congestion and I called to have the next cast scheduled. She has to be on the

medicine for 1 week so I was trying for this Thursday which would be 3 weeks in

a row but the cast Dr is going to be out all week so it looks like 2 weeks for

us. I really hope she doesn't get sick again. Fingers crossed.

> >

> >Somedays I feel like I have the worse luck.

> >

> >Alyssa

> >

>

April 30, 2010

We are in our first cast - but the application of it got postponed due to

illness the first time it was scheduled - so we kept her home from daycare the

weekend and few days before casting just because we were afraid she would catch

something. We did go with a runny nose and cough but we knew it was allergies -

they were hesitant when we got there - but every doctor in the place checked her

out and her lungs were clear - so they went ahead with the casting. We are

scheduled to go back next week for our second cast - I can't believe it has

already been 8 weeks.