Diane

[Guest guest]

-

I have 's second appointment to a rheumatologist scheduled for this

week. However, I'm not comfortable with this particular doctor treating her.

I just talked to her pediatrician about it. He suggested I take her to a

different rheumatologist here in Phoenix (even though he is not board

certified in pediatric rheumatology) because his reputation is so good. He

suggested that if I am still not comfortable with what this doctor says, I

take her out of state (Albuquerque, Las Vegas or LA). He thinks it may not

be necessary to do this immediately -- maybe her arthritis will not be that

severe. So the answer is NO -- I STILL DON'T KNOW WHAT I'M DOING. I do plan

to schedule an appointment with the other rheumy (whom we've discussed

before) ASAP -- after I hear what the first Dr. has to say on Wednesday. The

doctor everyone recommends is not on 's insurance plan, so I'm eating

the cost for now.

Did Skyler see a pediatric rheumy when he was first diagnosed? I know

you were running into the same problems I am and were seeing an " adult "

rheumy for a while. I'm still conflicted about what to do. I don't think

it's terribly practical for to see someone out of state on a regular

basis, so I'm hoping it won't be necessary. But on the other hand, I don't

want her condition to get worse because I stalled on this.

Is Skyler doing better since his trip to California? How about you?

Sounds like you found a new job. By the way, how old is Skyler?

Diane

[Guest guest]

Diane,

I feel your Dr. is correct. For the time being a regular Rheumatologist that regularly treats children should be just fine. Though if you have someone you personally feel is not serving your needs, look for a new one. With any luck will respond to just Motrin and you may never need to have to do the traveling. I firmly believe that any Dr. will use the same progression as I have experienced on Skyler. They allways try the least hazardous drugs and hope there will be a remission. Then they progress with DMARD's and try to find the right recipe'. Every patient has a different case and responds differently.

As I mentioned last week, the Rheumi. we see in Phoenix is a very good man and able in treatment, even for children. He will still be our main Dr. here in Phoenix. UCLA will stay in contact with him and we will go to CA quarterly for review.

To answer some of your other questions:

Skyler will be 3 on December 23rd.

I have not been able to go back to work as Skyler can not go to daycare in his current vulnerable immune condition. I Filed unemployment (for the first time in 15 years) last week and hope to get some work at home, but nothing yet.

As fpr Skylers condition, I am about to send off an email to the Dr. at UCLA; though the prelone dose calmed his flare at the hospital we are starting to see bad signs the last few days. :-(

His rash is returning, he is complaining more and more of joint pain. His fever has not returned (knock on wood) but it seems like a war. Each time we think we gain ground it seems as though the disease tries harder to get to him!

I am desperately trying to get on a normal sleep schedule. He is awake frequently and I end up having to nap from exhaustion during the day and not be tired until 1 AM. I have really discovered how important a good night sleep is to deal with stress.

Well, I must go.

Take care,

- I have 's second appointment to a rheumatologist scheduled for this week. However, I'm not comfortable with this particular doctor treating her. I just talked to her pediatrician about it. He suggested I take her to a different rheumatologist here in Phoenix (even though he is not board certified in pediatric rheumatology) because his reputation is so good. He suggested that if I am still not comfortable with what this doctor says, I take her out of state (Albuquerque, Las Vegas or LA). He thinks it may not be necessary to do this immediately -- maybe her arthritis will not be that severe. So the answer is NO -- I STILL DON'T KNOW WHAT I'M DOING. I do plan to schedule an appointment with the other rheumy (whom we've discussed before) ASAP -- after I hear what the first Dr. has to say on Wednesday. The doctor everyone recommends is not on 's insurance plan, so I'm eating the cost for now. Did Skyler see a pediatric rheumy when he was first diagnosed? I know you were running into the same problems I am and were seeing an "adult" rheumy for a while. I'm still conflicted about what to do. I don't think it's terribly practical for to see someone out of state on a regular basis, so I'm hoping it won't be necessary. But on the other hand, I don't want her condition to get worse because I stalled on this. Is Skyler doing better since his trip to California? How about you? Sounds like you found a new job. By the way, how old is Skyler?DianeFor links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Happy Birthday Diane!

Hope it was a good one for you.

*hugs*

Helen wrote:

> HAPPY BIRTHDAY DIANE!!

>

> Hope you had a grand birthday!! No pain was allowed on this day. Hope

> you succeeded!

> Warm Hugs

> Helen

>

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even, if it's a long way from here. Hold on to your life, even if it's easier to

let go. " - Pueblo Prayer

[Guest guest]

Diane,

You mentionned that Kristy's eyes roll back and that sounds like seizures

to me. Has she had an eeg or seen a pediatric neurologist? My son Brook,11

yrs, has had 3 different kinds of seizures, but they are controlled by

medication for which I am very grateful. He has had myoclonicseizures, petit

mal and generalized petit mal. There are so many different kinds of seizures

and some don't look anything like what you would expect or what your child

has had in the past.

Marisa,

Mom to Miles 14, Brook 11, and Genevieve 3 yrs

[Guest guest]

Hi Leah,

We are presently living in andria, VA. We expect to be here indefinitely.

It's been almost 6 years. It's nice here, no complaints. Just don't have any

family about. They are all in the North East. Made some good friends though

almost like family. It almost seems like some of you are family to each

other.

This year has been the year of research to see what is going on with our

Rochelle. We hope to piece meal these evals and recommendations to come up

with some kind of plan that will work for her. So far so good this year. Last

year was a diseaster. Maybe it was a wakeup call for us.

Hope I can keep in touch. Sometimes I just read and read and appreciate the

dialogue but only write when I feel I have something to contribute. So many

knowledgeable people here and on other listserves. I've learned alot already.

Diane (mom to Rochelle ds5 and Danny 7) in Virginia

[Guest guest]

diane,

we lived on fort belvoir for four years and bought a house in

stafford couty, right past woodbridge...are you in alex city schools

or fairfax county???? are you a member of pods with judi?? i used to

be but didn't really quite fit in, then again that might be because i

am so looney!!! :-)

about the family i understand, mine are all in oklahoma, so its the

same for me..inlaws dont count because they dont love ashton and

accept her.... > We are presently living in andria, VA. We expect

to be here indefinitely.

please do keep in touch..i can give you my number i just don'tlike

plastering all over the web...lmao take care leah

]

[Guest guest]

Hi Diane,

I also invite people over sometimes so I will be forced to clean! I,

too, am totally addicted to this group. It's about time I found something

that makes me feel so good - it's a bit like chocolate or a good bottle of

wine!!! LOL. When I first joined this group (about a year ago) I lurked for

about 2 months. I was very hesitant to start posting because I thought I

would get so emotional when I saw my name in print with people from all over

the world writing to me & offering me support. Well, I have cried, laughed,

been really angry & had my heart warmed many times. I've experienced every

emotion imaginable, but I usually feel better afterwards - inspired to keep

going. Anyway, I know how you are feeling. Keep posting & we will all

continue to enjoy each other as we learn & support one another.

Love,

(from Waterloo, Ontario)

[Guest guest]

Thank you, I am really enjoying being a memeber and learning things too!

[Guest guest]

Hi Diane, Where have you been wanting to go too???

Feeling the walls closing in is a terrible feeling (

My Love I send you...Please talk to us when you are up to it...It does help at times...

{{{ Many, Many Special Hugs }}}

Helen

Hi and everyoneWell, it is almost a year since I have been diagnosed with pulmonary sarcoidosis and I hate it... I understand the wanting to go out an just scream, or run away... I feel those things at least 2 or 3 times a week... I have been on prednisone twice now along with almost a dozen other medicines... I really feel like not taking any at all and letting what happens happens... I quit my job Aug. 24th... I used to be a rural carrier for the post office and the shit I went through their would make your hair stand on end... I am glad I am not working an do what I can around the house, which isn't much... So stand up an yell, or take a walk, or even go away for a day or two, which is what I am going to do real soon... For the walls are closing in and I am off the preds for now, but still feel that way... Sometimes there is no place to turn...Thanks and I wish everyone peaceDiane ( won2keep )

[Guest guest]

In a message dated 2/5/2002 12:15:47 PM Eastern Standard Time,

dben937342@... writes:

> I'm tired of being the

> watch dog.

Hi Diane,

I hate to be the bearer of bad news but that's your new and permanent job and

your not allowed to quit LOL

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 2/5/02 1:31:16 PM Eastern Standard Time,

charlyne1121@... writes:

> Hi Diane,

> I hate to be the bearer of bad news but that's your new and permanent job

> and

> your not allowed to quit LOL

> Charlyne

> Mom to Zeb 9 DS/OCD ?

LOLOLOL Charlyne!!!!!!! Yep, I was thinking the same thing!!!

But hang in there Diane!!! You'll also have some really wonderful moments

thrown in htat will sustain you, I promise!!!! Just wish they could be more

often rather than few and far between, ya know????

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}

Donna

[Guest guest]

Thankyou for the Card...

Diane

[Guest guest]

Diane,

I wanted to tell you that I recently purchased a sheepskin to sleep on to

help with the pain at night. It has really made a difference in the quality

of my sleep. I plan on buying one for if he has to undergo surgery

this summer. Just a thought for you.

Sandi

[Guest guest]

Hi Diane,

I usually have the most pain on the side I am sleeping on--I am a side

sleeper, too. But the sheepskin eases the pain. I also have begun to use an

electric blanket (they say it's not too good for you, but at this point I

don't care). That way, it eases the pain when I switch sides. The sheepskin

eases the pain on the side I am laying on, and the warm blanket on the other.

They have both made such a difference--sometimes I sleep all the way

through. That was impossible before the sheepskin.

Good luck and let me know!

Sandi

[Guest guest]

Hi Sandi!

Thanks for your prayers. It has been a rough patch lately. I don't think

I am a pid adult, I mean, I rarely get sick (in fact haven't even had a

cold all winter). But, I do have a lot of the symptoms for Lupus, the

main ones being fatigue and awful joint pain. They do come and go, but

have stayed pretty steady now for 3 months. I won't really know too much

more until I see a rheumatologist the end of this month. I do feel

guilty though, because I do think Kody got his pid from my side of the

family (history suggests that) although in all fairness, my hubby was

adopted so who's to know? Anyway, I do appreciate your prayers! I'll

keep you posted!

Diane, Kody's mom

[Guest guest]

Sandi,

Funny you should mention the sheepskin . My husband and I have been

talking about different mattresses, featherbeds, etc. I do have so much

trouble sleeping. My back, shoulders, and elbows give me the most pain.

And naturally I am a side sleeper! I can't even move when I get up in

the morning! I never thought of sheepskin though. I will have to look

into that. What do you like about it?

Diane

[Guest guest]

Diane - have they tested for mono? This could cause the same symptoms you

describe.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

[Guest guest]

Thanks!

Charlyne

[Guest guest]

Diane,

I do think that the Di diagnosis will make a difference to them.

They are kind of like dinosaurs, and anything newish, like PID makes them

nervous. Part of the reason Bri was turned down was because their " staff

Ped " ordered him to have a Pulmonary Insufficiency test, which of course, he

passed. This test measures lung function, not heart function. We had just

seen the Cardiologist, and so he wrote a letter explaining to SSI that they

had performed the wrong test. Ridiculous!!! Also, I was advised to stress

everything that goes on with your child. Even the things that you don't feel

have a bearing on his disability. So that's what I did. Just make sure you

draw them a very strong connection with Di and his learning problems,

or general state of health. Sometimes, I think they need a road map.

is doing okay. He has surgery in a week (ear tubes)--but doesn't

seem bothered by it at all. This is his tenth surgery, and the only thing he

is saying is he doesn't want to breath from the mask. What a trooper! I'm

not sure if you read my original post, but his Cardiologist feels that he

will probably need a pulmonary valve this summer. So that is hanging over my

head BIG TIME. I know what open heart was like the first time, and I am

dreading it. But the truth is, I just need to trust, and to realize that I

will never be ready for another heart surgery. Mentally, Bri is sharp as a

tack, so with him being home, I have my hands full!!!

Good luck to you, too. I have a huge feeling SSI will go through this

second time. 's file at the Ped's office is (no exaggeration) and inch

thick. You'd think they would get a clue--not a good sign for a nine year

old!

I hope you're having a great day--

Sandi

[Guest guest]

Sandi,

Definately wishing you luck!! I think you have a much better chance with

anyway because of his heart. I am waiting until Kody's testing is

finished so we have a more exact diagnosis before I reapply for him. We

have new information too, apparently I was wrong, and Kody does have a

variation of Di Syndrome. And apparently his siezures aren't under

control, we have to do another EEG in April and then either change his

medication or adjust the doseage. Also, today he is being tested for

problems with his fine motor skills and sensory integration issues. And

as if that isn't enough, Kody is really, really struggling academically.

Breaks my heart to see him try so hard and just not get it. So after

conferring with his teachers, and with his pediatrician and neurologist,

we have come to the conclusion that he needs to be tested for a learning

disability and his IEP needs to have special education added in to it.

Right now he is POHI (physically and otherwise health impaired) which

qualifys him for special ed services, but it needs to be spelled out in

his IEP. So he will go on to the first grade next year, but with special

ed support. Not sure at this point if he will have to go to a completely

special education classroom (Oh God, I hope not!!) or will jsut be taken

out of a regular classroom for part of the day in special ed. I am

wondering if having a Di Syndrome diagnosis will make a difference

with SSI, as compared to IgG sub. def? Especially since his ped feels

that Kody's learning disabilities are a part of hte Di. Guess I'll

have to do some more research on Di so that when I fill out the

forms I can have as much information as possible at my finger tips!! How

is doing lately??

Diane, Mom to Kody, age 6, Di Syndrome, Epilepsy, Asthma, and GERD

>

>

[Guest guest]

In a message dated 4/3/2002 9:09:51 PM Eastern Standard Time,

dben937342@... writes:

> . It's interesting

> that she wets herself at 1:00 everyday.

>

> The aides have no experience and have no training. How is that suppose to

> benefit my daughter.

>

Hi Diane,

Is Rochelle usually home at 1:00? She may still be on a schedule. Would the

school know to bring her to the toilet at 1:00? As far as the aide situation,

many aides have very little training. Just keep writing notes and hope that

they get it.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 4/3/02 11:11:35 PM Eastern Standard Time,

charlyne1121@... writes:

> Would the

> school know to bring her to the toilet at 1:00? As far as the aide

> situation,

> many aides have very little training. Just keep writing notes and hope that

>

> they get it.

>

Hi Charlyne, thanks for the imput. Yeah they bring her as many times as I ask

them. I just think that is around 1:00 or when they finish up whatever is

before that. I am thinking about giving them a timer so Rochelle can hear it

and start getting ready for toileting. but most timers only go 60 minutes.

Gotta go.

Diane

[Guest guest]

In a message dated 4/6/02 8:30:11 AM Central Standard Time,

dben937342@... writes:

>

> Hi Charlyne, thanks for the imput. Yeah they bring her as many times as I

> ask

> them. I just think that is around 1:00 or when they finish up whatever is

> before that. I am thinking about giving them a timer so Rochelle can hear

> it

> and start getting ready for toileting. but most timers only go 60 minutes.

> Gotta go.

> Diane

>

>

>

Diane,

A travel alarm or a watch is what I used to keep myself from forgetting to

take while training.

Karyn

[Guest guest]

In a message dated 4/6/2002 12:11:39 PM Eastern Standard Time,

KVanRyzin@... writes:

> Diane,

> A travel alarm or a watch is what I used to keep myself from forgetting to

> take while training.

Another thought, I bought Zeb a timer on a rope at Radio Shack that you can

set for whatever. I think it was about $10.00. He never would come in from

recess so I bought this so he could tell the teacher when recess was over. He

doesn't need it anymore so I forgot about it.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Thanks Sandi. No, I'm not okay with the sinus surgery. But I can't

discuss it with our pediatrician who feels the same way I do because he

is out on medical leave for three months! ( I can see though that if

the scar tissue is blocking the sinues from draining where that would be

beneficial for Kody just to help get rid of this infection. They will

culture it, that was part of the discussion too. You should have seen

Kody play his first teeball game! He got on base every time, and scored

every time he was up! He was so excited! At Walmart the other day we saw

a kid with a baseball uniform on (must be an older little league kid)

and Kody very proudly told him that he plays baseball too! The kid was

so sweet to Kody, most teenagers are not so thoughtful, but he stood

there and talked baseball with Kody and gave him pointers for a long

time. Kody was so impressed, you would think he met Babe Ruth! LOL Oh

here's a Kody-ism for you all....on our way to the immuno's office we

went by our neighbors garage sale and Kody, who has envied their

trampoline forever, announces that " hey the neighbors have a for sale

sign on the trampoline! " , I told him the sign said " not for sale " , and

he insisted that it was for sale. Finally, I asked him how would he

know, he can't read and he says " I can read trampoline, I just can't

read books! " )

Diane, Mom to Kody