Update on !

[Guest guest]

Nikki - You definatly learned a lot at the conference!!

is a lovely young lady, she is going to be a great help for you

with Kelsey! You sound right on with your 'diagnosis' with Kelsey, now of

course you have to go to the next step of finding a therapist for her! Did

you get a chance to speak with Dr. Bruce Hyman? What about universities? Tom

just began this week with a new graduate from the Ph.D. psych program from

one of the universities here. He knew exactly what we were looking for and

is young enough to still be enthusiastic and creative!

I too enjoyed speaking with Dr. Mansuetto. I had a chance to talk to him

after his presentation and was impressed with his generous information

sharing and attitude.

You wrote:

>Also I learned at the conference from Dr. Mansuetto that when >a

>person is on the impulsive side of the spectrum instead of the >compulsive

>side they usually do better with Paxil and clonadine and >things like that

>instead of the SSRI'S like prozac, zoloft and Luvox.

Tom fits into this catagorie so I looked over his med records. We tried

all of the above in various combinations. At the moment he is taking

anafranil/clomipramine and serzone. He was on respiradol for some time which

slowed him down so he was less impulsive, but he was also sleepy most of the

time. He began to fight it and that made him worse as he was not only tired

and cranky, he was more aggressive trying to 'outwit the meds'! His ocd

prevents him from taking Buspar; cant figure out that one!!

Take care, you are a great mom! wendy in canada wb4@...

________________________________________________________________________

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[Guest guest]

HI Nikki:

IT was great to meet you and at the OCF, I only wish we had had

more time to be together.

We are also getting ready for school next week. Steve does not seem too

thrilled but I guess that is pretty typical for 8th grade and he has had a

very fun summer, lots of travel, lots of museums, lots of stimulation, etc.

IT is my understanding that Imipramine is not considered effective for OCD.

The OCD meds are Anafranil, Prozac, Luvox, Paxil, Zoloft, and Celexa as

far as those which have been found effective through peer reviewed

published scientific research. Clinical experience points to Effexor as

also having anti-obsessional effects. Even the ones that don't seem to

work for OCD can sometimes be effective for specific individuals but this

is less likely. Typically docs augment the medication.

I am so pleased that made a friend at the conference. This is such

a normalizing experience for our kids. After his first conference Steve

really stopped feeling so sorry for himself and so angry and grieving about

how his life had changed. It was wonderful to see.

Do you think Kelsey's anxiety is in the normal range for a new kid in

Kindergarten? If you think it is probably hanging in there while she

adjusts is the way to go. If you feel it is excessive you might want to

have her assessed for school phobia or a related anxiety disorder. These

are highly treatable and anxious kids often slip between the cracks at

school as their behaviors are not disruptive to the classroom although they

are very disruptive to the sufferer.

I hope to see you again in Denver next summer and of course, meet you here

on the list often. Take care, aloha, Kathy (H)

kathyh@...

At 10:09 PM 08/16/2000 -0400, you wrote:

>Hi everyone! I just wanted to give an update on since we've been

back

>from Chicago! She started school on Mon. and everything was fine and then

>yesterday she started complaining of bad headaches, chest pains, and

weakness

>and pain in her upper legs and back.I kind of thought maybe a virus or

>fatigue but then she complained even more last night and this morning she

>wanted to stay home from school and she never wants to miss school. I gave

>her a advil and sent her, well I called home to check messages and she had

>called and said mom Im feeling worse and my chest really hurts and my head

>and legs. I got concerned that maybe it was her meds so I called her

>pediatrician as I figured he would tell me if it was related to meds or not

>and then I could call the Psychiatrist so he confirmed that he thought it

was

>meds and to contact her other doc, I called right away and he called me back

>within 1 1/2 hrs (I thought that was pretty good) he said to stop the

>wellbutrin (which she takes 1 100mg a day) and continue the Luvox (2 50mg a

>day). And he will see her next week and we will go from there he was

confused

>at why she would start having side effects after like 2 1/2 months on

this. I

>also suggested to taper the Luvox and he wasnt crazy about that and said it

>would lose its affectiveness.I told him about the conference and that we had

>met a child who took 50mg a day of luvox because at 100mg she was violent

and

>kicking, biting, hitting and running away. He talked about switching to

>anafranil which I informed him she spent 15months on already and had to keep

>going up and up and then gained alot of weight which really bothered her.

>Zoloft made her spin in circles like the Tazmanian devil and rock back and

>forth. So he spoke of Ipramine does anyone have experience with this one.

>Also I learned at the conference from Dr. Mansuetto that when a

>person is on the impulsive side of the spectrum instead of the compulsive

>side they usually do better with Paxil and clonadine and things like that

>instead of the SSRI'S like prozac, zoloft and Luvox. Any input from anyone

>who knows anything that may help please send it my way because I know as

soon

>as we stop the Wellbutrin we are going to be peeling her off the walls again

>because it causes serious over stimulazation. Im really for tapering off and

>letting a little bit of symptoms surface so that we can focus more on cbt as

>right now she's symptomatic free. What do you think. I was so amazed by

>everything I learned at the conference that I still havnt processed it all I

>havent really had a chance yet. It was INCREDIBLE being there. I am going to

>start saving now for Denver. met a girl 10yrs old like her with OCD

>named and that was undescribable how much that meant to her. She is soo

>positive about her ocd now and know s she's not alone. We are still worried

>about my 5yr Kelsey as she seems to have alot of anxiety and starting Kind.

>has been awful for her she is having stomach problems and crying until her

>eyes are swollen before school. she makes it through the day fine and seems

>sooo happy when she comes home and says shes not going to cry anymore and

>then the next morn. starts worrying all over again and can't eat, drink and

>only cries and sobs. It breaks my heart I talked to her alot this morning

and

>found out all her fears, getting sent to the principals office, them giving

>her work that she doesnt know how to do, her friend not being there that

day,

>etc etc. We talked about each issue and talked about what the worst thing

>would be if that situation happened and then I told her what she could do if

>it did but like the principal thing is highly unlikely but I reassured her

>that she could never do anything that we would not love her anymore (she is

>very perfectionistic and puts alot of pressure on herself to be the best in

>class, the best at gymnastics, the best in sunday school). She seemed better

>but fell apart again when we got there.Her teacher was wonderful this

>afternoon with reassurance about every issue. I hope that I am handling this

>right, I try to down play it as much as poss but feel like I cant have her

>there with no coping schools as to what to do when shes feeling this way.

I f

>anyone has dealt with this please let me know as Im sure many have. Thanks

>for your continued support and I will write more about the conference when

my

>mind is not so jumbled with my kids. Cya Nikki in Orlando P.S. Kathy H. we

>are sooo enjoying the candy from Hawaii it is sinfully good. Thank you that

>was so thoughtful to bring treats all that way I loved meeting everyone it

>was wonderful!!!

[Guest guest]

In a message dated 8/16/00 8:12:32 PM Mountain Daylight Time, ANGELO5@...

writes:

<< Also I learned at the conference from Dr. Mansuetto that when a

person is on the impulsive side of the spectrum instead of the compulsive

side they usually do better with Paxil and clonadine and things like that

instead of the SSRI'S like prozac, zoloft and Luvox. Any input from anyone

who knows anything that may help please send it my way because I know as

soon

as we stop the Wellbutrin we are going to be peeling her off the walls again

because it causes serious over stimulazation. >>

My daughter, Leigh,(age 12) is more on the impulsive end of the spectrum than

the compulsive side. At this time she is doing well on a combination of

Clonidine (half of a .1 mg skin patch per week) and Zoloft (100 mg ea.

morning and night (total 200 mg day). She also takes Loxapine for Tourettes

and paranoia problems. I like the Clonidine skin patch better than the pills

because we were seeing too many " peaks and valleys " with the pills. Her

system could not metabolize it evenly and she would go from bouncing off the

wall to lethargic and practically comotose. This was not compatible with

school or any other life activities! The patch delivers just the right

amount of medicine to her blood stream. The zoloft is absolutely essential,

I wouldn't even think of taking her off it without something to replace it.

Jay in Colorado

[Guest guest]

HI Nikki:

Way to go on the detective work about what was upsetting !! I am

reading Dr. Penzel's new book and it has a lot of interesting information

about meds and comorbidities. OF course he very carefully reminds people

to check with their psychiatrist, but since he has treated so many people

with OCD (over 600) he has seen many of the different responses to meds and

has some very interesting comments.

HOpe you have had a great weekend. Take care, aloha, Kathy (H)

kathyh@...

P.S. Steve is sooooo goodnatured on the Luvox. He and his brother are

horsing around like a couple of bear cubs (please excuse the mixed

metaphors), it is so wonderful to see their fun and happiness. Steve was

up in the roof today and still has the same shirt on as he wore up there.

He has not taken a shower and is very calm even though he went there to

look for rats' nests. K.

At 11:00 AM 08/26/2000 EDT, you wrote:

>Hi all, happy Saturday to you!! I wanted to update you all about ! We

>figured out what was causing the Meltdowns and Deppression type behavior

this

>week. It was the Zyrtec long acting antihistamine that she was taking for

her

>cold her ear infection. A friend of mine and our Pharmacist suggested which

>meds to stop first and as soon as we didnt give it to her yesterday morn.

she

>had a super day and said she felt much better. I started thinking back to

the

>last time she took a med like this and it was in July. Some of you will

>remember the Awful camp experience she had and thinking back she was

taking a

>once a day Claritan. My friend who was at camp as a counselor said what she

>obbserved from Tiff looked like depression. As soon as she got back it didnt

>stop after a few days I talked to her doc and he upped the Wellbutrin it

went

>away. But that was also when we stopped the claritan. So I think we know

now.

>Thanks for all your input and support, it was a rough week but I think we

>have a handle on it now and we go see the Pychiatrist on Tues. I hope he

>will give us the ok for Clonidine to help with sleep and concentration. Have

>a blessed weekend. Nikki in O'town

[Guest guest]

Hi Nikki:

Thanks for the upbeat update on . SHe is doing so well as coming

off meds can be an incredibly rough ride as their bodies adjust. Being

able to boss back at this time is extra impressive!

She is so lucky to have such a caring and dedicated mom helping with the

school issues as well as the OCD at home. Take care, aloha, Kathy (H)

kathyh@...

At 09:20 AM 09/22/2000 -0400, you wrote:

>Hello to all! I wanted to update you on . She has been off of her

meds

>a week today is doing soooo much better. Im not saying it has been a smooth

>road but I almost imediatley (within 48hrs) started to see my child coming

>back. She has had alot of mood swings like a roller coaster, dizziness and a

>few melt downs. But she is able to sit at the dinner table with us without

>feet on the table, standing on her head etc. She is able to concentrate much

>better in school (not perfect but better) and she seems happier, laughing

>joking and being her silly self. She is seeming to enjoy life. She is

bossing

>back OCD when she needs to and seems more in control. We had a 504 plan

>meeting at school yesterday and got that into effect it gives her some great

>accomadations if she needs them. So things are going really good and just

>wanted to share the good news with my wonderful support system. God Bless

>all of you and know that I think of you all and your precious little ones

>everyday. Nikki in O'town

[Guest guest]

Nikki,

Isnt it wonderful how your instincts pay off??!! You were right about

giving up the meds to cleanse her system!! The more you have learned

the easier it is to handle situations since you are more prepared. This

reinforces just how helpful the reading, the conference, and this list can

be for all of us!!

Stacey,

Great report from the doc. Once again, validation of what you instinctvly

know has helped you handle a potentially overwhelming situation. Know that

you know what to do, you will be a terrific cheer leader. I have treated

young children (actually, I work with the whole family) and find that the

sooner the exposure becomes a lifestyle the easier it is to manage in the

long term. My philosophy is to confront things head on and dealing with

anxiety as a tool for their future.

Angie - welcome!

You are right on about your observation on obsessions and compulsions.

Yes, the kids dont want to be so clingy, but its easier than dealing with

the discomfort of the thoughts that are going on in their heads. Slowly

working on the separation, describing and imagining the worst case scenarios

help with dealing with the anxiety of 'what if' situations.

Take care all - wendy, in canada

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[Guest guest]

Lorilee,

I know this time is very hard right now but the pred has done it's job.The

fevers are gone and the rash is slight.Pred is reserved for the sickest children

to prevent complications.

At 15mg a day it is still normal for there to be morning stiffness and pain

in the mornings.Usualy after a couple hours after giving, the pain is not as

severe but still there only to get worse again in the evening.

I assume you mean .6ml of injectable MTX which would be 15mg(1ml =25mg)Three

weeks is not enough time to see results for most and once it does start to

work it takes another 12 weeks to reach maximum effectiveness for that dose.

Please do not give up hope or faith.There is no quick fix,it takes several

months and a bunch of trial and error to find the right drug or combo of drugs

to control that mean Arthur kid.

My son could barely function with anything under 9mg of Pred and in the first

several months even 30mg would not take it all away.It wasn't until after

being slowely raised to 25mg MTX that the systemic symptoms went away.They added

another DMARD at max dose and he could finaly get to 6mg pred before it got

nasty again arthritis wise.They added the 3rd DMARD Enbrel and within 9 days

everything just went away.They took him off the Plaquenil, tapered him off the

pred after 21 months,tapered him off of his NSAID then very slowely tapered his

MTX,leaving just the Enbrel.Turned out he needed the MTX but in just small

doses and we were able to give it as 3 little pills(7.5mg).

There is no quick solution and it does take time but complete control can

happen.

If you Google Larson you will find his link to patient stories at

Cincinatti Childrens Hospital.

Just hang in there and vent as much as you need too and ask as many questions

that you want.

Hugs

Becki and 7 systemic

[Guest guest]

Ok, Thanks so much for the insight here. Being so new to this I didn't know if

there was supposed to be sooner results or if things were going to take more

time to work themselves out. My husband is so impatient and he keeps saying he

wants to see some improvment with him. I tell him its going to take awhile but

he's not listening...lol MEN! I will just take things one day at a time like I

have been and hope we find that right combo to at least make him appear to be a

normal kid again...

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: Arthurnator@...

Lorilee,

I know this time is very hard right now but the pred has done it's job.The

fevers are gone and the rash is slight.Pred is reserved for the sickest children

to prevent complications.

At 15mg a day it is still normal for there to be morning stiffness and pain

in the mornings.Usualy after a couple hours after giving, the pain is not as

severe but still there only to get worse again in the evening.

I assume you mean .6ml of injectable MTX which would be 15mg(1ml =25mg)Three

weeks is not enough time to see results for most and once it does start to

work it takes another 12 weeks to reach maximum effectiveness for that dose.

Please do not give up hope or faith.There is no quick fix,it takes several

months and a bunch of trial and error to find the right drug or combo of drugs

to control that mean Arthur kid.

My son could barely function with anything under 9mg of Pred and in the first

several months even 30mg would not take it all away.It wasn't until after

being slowely raised to 25mg MTX that the systemic symptoms went away.They added

another DMARD at max dose and he could finaly get to 6mg pred before it got

nasty again arthritis wise.They added the 3rd DMARD Enbrel and within 9 days

everything just went away.They took him off the Plaquenil, tapered him off the

pred after 21 months,tapered him off of his NSAID then very slowely tapered his

MTX,leaving just the Enbrel.Turned out he needed the MTX but in just small

doses and we were able to give it as 3 little pills(7.5mg).

There is no quick solution and it does take time but complete control can

happen.

If you Google Larson you will find his link to patient stories at

Cincinatti Childrens Hospital.

Just hang in there and vent as much as you need too and ask as many questions

that you want.

Hugs

Becki and 7 systemic

[Guest guest]

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in. Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of the day,

and terrible that you can;t control the pain yet. But hang in there. Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for the next

step just in case. But it's great that the fevers and rash have dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she said to

try asprin up to 3 for pain. Not doing much of anything either. He can make it

thru most of the day at school but once we get home or even before we get home

he's limping or walking on his knees. I did get a script for folic acid and

some other pain reliever (but haven't picked them up yet). Am I just looking

for to much here or should he be having mostly pain free days here? His fevers

are pretty much gone and the rash is only in small patches if any. But he still

has the pain and swelling in his ankles and feet (mostly the right one lately).

So tell me am I expecting to much to soon or should he be doing better then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

Thanks for the info. I'm guess I'm trying to justify my not being a total B!tch

about not having and results yet. Sometimes I feel like maybe I'm not pushing

hard enough for him or something. Is that a normal response to all this

waiting.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: Colleen <bookissmom@...>

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in. Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of the day,

and terrible that you can;t control the pain yet. But hang in there. Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for the next

step just in case. But it's great that the fevers and rash have dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she said to

try asprin up to 3 for pain. Not doing much of anything either. He can make it

thru most of the day at school but once we get home or even before we get home

he's limping or walking on his knees. I did get a script for folic acid and

some other pain reliever (but haven't picked them up yet). Am I just looking

for to much here or should he be having mostly pain free days here? His fevers

are pretty much gone and the rash is only in small patches if any. But he still

has the pain and swelling in his ankles and feet (mostly the right one lately).

So tell me am I expecting to much to soon or should he be doing better then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

Hi Lorilee-

Totally normal! As a matter of fact - the worrying about it and the fact that

you are watching it so closely shows that you are ready to be aggressive if

necessary.... It's hard to wait because it is such a helpless feeling. But

don't beat yourself up about it! You're obviously a great mom and a great

advocate for your son....

colleen

lorileedare@... wrote:

Thanks for the info. I'm guess I'm trying to justify my not being a total

B!tch about not having and results yet. Sometimes I feel like maybe I'm not

pushing hard enough for him or something. Is that a normal response to all this

waiting.

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

-------------- Original message --------------

From: Colleen <bookissmom@...>

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in. Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of the day,

and terrible that you can;t control the pain yet. But hang in there. Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for the next

step just in case. But it's great that the fevers and rash have dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she said to

try asprin up to 3 for pain. Not doing much of anything either. He can make it

thru most of the day at school but once we get home or even before we get home

he's limping or walking on his knees. I did get a script for folic acid and

some other pain reliever (but haven't picked them up yet). Am I just looking

for to much here or should he be having mostly pain free days here? His fevers

are pretty much gone and the rash is only in small patches if any. But he still

has the pain and swelling in his ankles and feet (mostly the right one lately).

So tell me am I expecting to much to soon or should he be doing better then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

Hi Lorilee,

I agree with the others - the mtx does take some time to begin to show

improvement - If he is functioning with the increase to 15mg of the pred -

that's good, though I wouldn't be too leary if the Doc wanted to take the pred

up to 20 - for a short time with a plan to begin tapering right away. This may

shock some of the parents here who know Robbie's history and all the problems of

his prolonged high steriod doses, but that's why I suggested a short time - even

a pulse or two (one time high dose either IV or PO) may be all it takes to make

a difference. Robbie always needed high doses (27mg and higher) - as young 4

years old, to pull him out of a flare - but that would be a severe systemic

flare, high fevers, lethargic, unable to move or do for himself. I would hope

that going that high wouldn't be necessary - especially as your son is already

on the mtx.

Even before thinking about raising the pred anymore - have you tried Motrin?

Motrin, as needed for pain can make a difference to back up the other meds.

I am surprised that the doc suggested aspirin - because of the risk of Reyes

syndrome - but the doc is probably weighing every thing, and acting on his or

her knowledge of 's med history.

Sometimes it takes the higher pred doses to pull a kid out of a systemic flare,

but avoid high doses - particularly long term if at all possible. Good luck, I

hope that improves quickly!

Val

Rob's Mom (8,systemic)

Re: Update on !

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in. Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of the day,

and terrible that you can;t control the pain yet. But hang in there. Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for the next

step just in case. But it's great that the fevers and rash have dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she said to

try asprin up to 3 for pain. Not doing much of anything either. He can make it

thru most of the day at school but once we get home or even before we get home

he's limping or walking on his knees. I did get a script for folic acid and

some other pain reliever (but haven't picked them up yet). Am I just looking

for to much here or should he be having mostly pain free days here? His fevers

are pretty much gone and the rash is only in small patches if any. But he still

has the pain and swelling in his ankles and feet (mostly the right one lately).

So tell me am I expecting to much to soon or should he be doing better then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

Val - I was thinking along the same lines with some type of NSAID to

help relieve the pain, something perhaps other than aspirin. Michele

Re: Update on !

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in.

Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I

don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of

the day,

and terrible that you can;t control the pain yet. But hang in there.

Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for

the next

step just in case. But it's great that the fevers and rash have

dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has

up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's

up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she

said to

try asprin up to 3 for pain. Not doing much of anything either. He can

make it

thru most of the day at school but once we get home or even before we

get home

he's limping or walking on his knees. I did get a script for folic acid

and

some other pain reliever (but haven't picked them up yet). Am I just

looking

for to much here or should he be having mostly pain free days here? His

fevers

are pretty much gone and the rash is only in small patches if any. But

he still

has the pain and swelling in his ankles and feet (mostly the right one

lately).

So tell me am I expecting to much to soon or should he be doing better

then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

OK we are a point where we had to be creative alittle. He was on Motrin thru

most of the orginal flare that got him dx'd. But in December he developed an

allergy to either that or the Amoxi he was on also. So motrin is outta the

question. That's when we had to go to tylenol for pain relief but that wasn't

working at all. He was also giving Naproxen but his stomach wouldn't tolerate

that at all. Every time I gave it to him he threw it up. So you see we have

had to turn to other alternatives. BUT I think we may of found one. His dr.

has put him on Sulindac orally. He's taking 150 mg tablets twice per day and

its a NSAID also. So far its working wonders. He had one last night and one

this morning so far and he hasn't complained of pain yet. So please keep your

fingers crossed with me that it continues to help keep his pain away.

Also along with this is the fact that he has learned to take small pills all by

himself now. He can swallow both the Pred. and the Sulindac. I hate the fact

that he had to learn this so early in life but am so proud that he's progresses

so fast. My little monster boy is turning into my big monster boy....

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Healthy Thank God}

18 {Asthma}

~~~~~~~~~~~~~~~~

--------- Re: Update on !

HI Lorilee-

Just to concur with Becki... the MTX takes some time to kick in. Generally 6-8

or even 10 weeks is what the docs say. And with 15mg of pred a day, I don't

think you want to go much higher. If he is able to go to school that is

fantastic! I know that it's hard to see him so wiped out at the end of the day,

and terrible that you can;t control the pain yet. But hang in there. Hopefully

the MTX will start to help....I'm sre your doc has a plan of action for the next

step just in case. But it's great that the fevers and rash have dissipated....

Take care and I hope things turn around soon!

Colleen (mom to Cailtin, 7, systemic)

lorileedare@... wrote:

Ok I have spoken with 's Rheumy twice this last week and she has up't his

Pred. from 5mg to 15mg. Which I haven't seen any improvement from. He's up to

his .06ml of MTX 3rd week now. Tylenol did nothing for his pain, she said to

try asprin up to 3 for pain. Not doing much of anything either. He can make it

thru most of the day at school but once we get home or even before we get home

he's limping or walking on his knees. I did get a script for folic acid and

some other pain reliever (but haven't picked them up yet). Am I just looking

for to much here or should he be having mostly pain free days here? His fevers

are pretty much gone and the rash is only in small patches if any. But he still

has the pain and swelling in his ankles and feet (mostly the right one lately).

So tell me am I expecting to much to soon or should he be doing better then

this?

--

Lorilee

~~~~~~~~~~~~~~~~

Ken 47 {PolyRA}

6 {Systemic JRA, Eczema},

Kayla 15 {Eczema}

18 {Asthma}

~~~~~~~~~~~~~~~~

[Guest guest]

Hello Everyone!

is a few days away from being 8 months old!

It has been a while since I have posted regarding . I am

taking 3 classes so it gets kind of hard.

But good news!

has graduated from his Ballert Helmet on Feb 6, 2007. He has

made major improvement but the orthotist says that he still has some

more to fill out in the back but that will change with his growth.

He still has some facial assemetry, but not like before.

Everything else is still the same. Still not sleeping any better.

His eating has improved a little. He goes for a follow-up appt with

his ped. neuro. on March 5th.

Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES

YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.

Thanking you in advance,

Tequisha

Mother to , 7 1/2 months old

[Guest guest]

Congratulations on 's graduation!!! Sorry he is not sleeping any better. It is hard when discussing milestones. I have 4 kids. One walked at 12 months, one at 10 months and one at 14 months. The same was trrue for crawling. One at 6 months,one at 7 and one at 8. My son did everything early but he was very very active and he still is at age 7. My oldest crawled the latest but she was happy just sitting with toys. Please let us know how the 5th goes.

Angie and jenna(STAR grad)

Update on !

Hello Everyone! is a few days away from being 8 months old!It has been a while since I have posted regarding . I am taking 3 classes so it gets kind of hard.But good news! has graduated from his Ballert Helmet on Feb 6, 2007. He has made major improvement but the orthotist says that he still has some more to fill out in the back but that will change with his growth. He still has some facial assemetry, but not like before. Everything else is still the same. Still not sleeping any better. His eating has improved a little. He goes for a follow-up appt with his ped. neuro. on March 5th. Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.Thanking you in advance,TequishaMother to , 7 1/2 months old

[Guest guest]

Congrads Tequisha!!

Sounds like made great progress!

My son is 13 mos old, at 8 mos he was sitting up, just starting to

crawl some, babbling, rolling over (not often though).

Good luck w/things!

>

> Hello Everyone!

> is a few days away from being 8 months old!

> It has been a while since I have posted regarding . I am

> taking 3 classes so it gets kind of hard.

> But good news!

> has graduated from his Ballert Helmet on Feb 6, 2007. He

has

> made major improvement but the orthotist says that he still has

some

> more to fill out in the back but that will change with his growth.

> He still has some facial assemetry, but not like before.

>

> Everything else is still the same. Still not sleeping any better.

> His eating has improved a little. He goes for a follow-up appt

with

> his ped. neuro. on March 5th.

>

> Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES

> YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.

>

> Thanking you in advance,

> Tequisha

> Mother to , 7 1/2 months old

>

[Guest guest]

at 8 months my daughter was sitting on her own, rolling over, babbling, holding her own bottle, picking up objects, but not crawling and not pulling herself to standing. candice, nytequisha_w <tequisha_w@...> wrote: Hello Everyone! is a few days away from being 8 months old!It has been a while since I have posted regarding . I am taking 3 classes so it gets kind of hard.But good news! has graduated from his Ballert Helmet on Feb 6,

2007. He has made major improvement but the orthotist says that he still has some more to fill out in the back but that will change with his growth. He still has some facial assemetry, but not like before. Everything else is still the same. Still not sleeping any better. His eating has improved a little. He goes for a follow-up appt with his ped. neuro. on March 5th. Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.Thanking you in advance,TequishaMother to , 7 1/2 months old

Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

My son is one week shy of 8 months. He is doing all the things that 's daughter was doing. There is such a HUGE range of what is considered "normal." Baby Center has developmental emails that I get each week that say what he should be doing at what age and when to ask the ped. Hope that helps. PHX, AZ Dumerlin <candicedumerlin@...> wrote: at 8 months my daughter was sitting on her own, rolling over, babbling, holding

her own bottle, picking up objects, but not crawling and not pulling herself to standing. candice, nytequisha_w <tequisha_w > wrote: Hello Everyone! is a few days away from being 8 months old!It has been a while since I have posted regarding . I am taking 3 classes so it gets kind of hard.But good news! has graduated from his Ballert Helmet on Feb 6, 2007. He has made major improvement but the orthotist says that he still has some more to fill out in the back but that will change with his growth. He still has some facial assemetry, but not like before. Everything else is still the same. Still not sleeping any better. His eating has improved a little. He goes for a follow-up appt with his ped. neuro. on March

5th. Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.Thanking you in advance,TequishaMother to , 7 1/2 months old Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Autos' Green Center.

[Guest guest]

Congratulations ! It must be so nice to see his sweet little head again. Sorry to hear nothing else has improved. As far as developementally, Tiernan started crawling around eight months. Every baby is different though, so it's not necessarily something for you to worry about if he isn't yet. Candace, AZ mommy to Tiernan, 9 mos tort, plagio Hanger helmet 12/05/06 and Ethan, 3.5 yrstequisha_w <tequisha_w@...> wrote: Hello Everyone! is a few days away from being 8 months old!It has been a while since I have posted regarding . I am taking 3 classes so it gets kind of hard.But good news! has graduated from his Ballert Helmet on Feb 6, 2007. He has made major improvement but the orthotist says that he still has some more to fill out in the back but that will change with his growth. He still has some facial assemetry, but not like before. Everything else is still the same. Still not sleeping any better. His eating has improved a little. He goes for a follow-up appt with his ped. neuro. on March 5th. Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.Thanking you in advance,TequishaMother to , 7 1/2 months

old

Don't pick lemons.

See all the new 2007 cars at Autos.

[Guest guest]

hi there,

i have two kids...Audrey is 2.5 yrs. old and is 15.5 months.

Audrey didnt do any milestones at the appropriate time. At 9 months

she was evaluated b/c she wasn't crawling or even rolling over. she

barely qualified and by the time the therapist was assigned to her

she was practically walking. she walked at 11 months and crawled

after that. she self-fed by 9 months. she didn't sit up unassisted

until after 8 months.

is currently in docband and will graduate in a few weeks, no

tort, though i had him evaluated several times to be sure. he

pathetically army-crawled at about 7 months, rolled over about 7

months too, sat up unassisted about 8 months, didnt self-feed until

11 months, took first steps at 10.5 months. he didnt successfully

crawl until after he turned 13 months (after he started seeing chiro).

Every baby is so different, but i think they all get to where they

are supposed to by 2 or 3 (at least that is what i heard). good luck!

>

> Hello Everyone!

> is a few days away from being 8 months old!

> It has been a while since I have posted regarding . I am

> taking 3 classes so it gets kind of hard.

> But good news!

> has graduated from his Ballert Helmet on Feb 6, 2007. He has

> made major improvement but the orthotist says that he still has

some

> more to fill out in the back but that will change with his growth.

> He still has some facial assemetry, but not like before.

>

> Everything else is still the same. Still not sleeping any better.

> His eating has improved a little. He goes for a follow-up appt with

> his ped. neuro. on March 5th.

>

> Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES

> YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.

>

> Thanking you in advance,

> Tequisha

> Mother to , 7 1/2 months old

>

[Guest guest]

> Hello Everyone!

> is a few days away from being 8 months old!

> It has been a while since I have posted regarding . I am

> taking 3 classes so it gets kind of hard.

> But good news!

> has graduated from his Ballert Helmet on Feb 6, 2007. He

has

> made major improvement but the orthotist says that he still has

some

> more to fill out in the back but that will change with his growth.

> He still has some facial assemetry, but not like before.

>

> Everything else is still the same. Still not sleeping any better.

> His eating has improved a little. He goes for a follow-up appt

with

> his ped. neuro. on March 5th.

>

> Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES

> YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.

>

> Thanking you in advance,

> Tequisha

> Mother to , 7 1/2 months old

>

>

>

>

>

>

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

> Finding fabulous fares is fun.

> Let FareChase search your favorite travel sites to find

flight and hotel bargains.

>

HEY EVERYONE MY DAUGHTER RILEY IS 8 MO OLD ON 02/15 SHE STARTED

SITTING ON HER OWN@6MO BUT SHE HATES TUMMY TIME WHEN I PUT HER ON

HER TUMMY SHE CRIES LIKE SOMEONE IS KILLING HER SHE WILL JUST GIVE

UP SHE WILL NOT ATTEMPT TO CRAWL SHE GRABS THINGS SHE HOLDS HER OWN

BOTTLE BUT I JUST CANT GET HER TO CRAWL SHE ROLLED OVER ONCE ONLY

AND NEVER AGAIN MY HUSBAND SAYS IM PARANOID AND EVERYTHING AT ITS

DUE TIME BUT WE JUST HAD SOME GOOD FRIENDS OVER AND THERE SON IS

2WKS OLDER THAN RILEY AND HE IS PRACTICALLY RUNNING HE CRAWLS ALL

OVER THE PLACE HE STANDS IF HE IS HOLDING ON TO SOMETHING I DONT

KNOW MAYBE SHE'S OKAY AND IM OVER REACTING

ALEJANDRA LA CA

[Guest guest]

chili- try not to worry. i am sure your daughter is fine. madison did not crawl until 10 months. she also hated tummy time. i would get so discouraged when i saw other babies crawling around who were way younger than her, but one day she surprised us all and just started crawling. some doctor's don't even consider crawling to be a developmental milestone anymore. they say that plenty of babies just go straight to walking. candice, nychili1207 <chili1207@...> wrote: > Hello Everyone! > is a few days away from being 8 months old!> It has been a while since I have posted regarding . I am > taking 3 classes so it gets kind of hard.> But good news!> has graduated from his Ballert Helmet on Feb 6, 2007. He has > made major improvement but the orthotist says that he still has some > more to fill out in the back but that will change with his growth.

> He still has some facial assemetry, but not like before. > > Everything else is still the same. Still not sleeping any better. > His eating has improved a little. He goes for a follow-up appt with > his ped. neuro. on March 5th. > > Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES > YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.> > Thanking you in advance,> Tequisha> Mother to , 7 1/2 months old> > > > > > > ---------------------------------> Finding fabulous fares is fun.> Let FareChase search your favorite travel sites to find flight and hotel bargains.>HEY EVERYONE MY DAUGHTER RILEY IS 8 MO OLD ON 02/15 SHE STARTED SITTING ON HER OWN@6MO BUT SHE HATES TUMMY TIME WHEN I PUT HER ON HER TUMMY SHE CRIES LIKE SOMEONE IS KILLING HER SHE WILL JUST GIVE

UP SHE WILL NOT ATTEMPT TO CRAWL SHE GRABS THINGS SHE HOLDS HER OWN BOTTLE BUT I JUST CANT GET HER TO CRAWL SHE ROLLED OVER ONCE ONLY AND NEVER AGAIN MY HUSBAND SAYS IM PARANOID AND EVERYTHING AT ITS DUE TIME BUT WE JUST HAD SOME GOOD FRIENDS OVER AND THERE SON IS 2WKS OLDER THAN RILEY AND HE IS PRACTICALLY RUNNING HE CRAWLS ALL OVER THE PLACE HE STANDS IF HE IS HOLDING ON TO SOMETHING I DONT KNOW MAYBE SHE'S OKAY AND IM OVER REACTINGALEJANDRA LA CA

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[Guest guest]

Thank you for the reply. I will be patient and see how things go.chili1207 <chili1207@...> wrote: > Hello Everyone! > is a few days away from being 8 months old!> It has been a while since I have posted regarding . I am > taking 3 classes so it gets kind of hard.> But good news!> has graduated from his Ballert Helmet on Feb 6, 2007. He has > made major improvement but the orthotist says that he still has some > more to fill out in the back but that will change with his growth. > He still has some facial assemetry, but not like before. > > Everything else is still the same. Still not sleeping any better. > His eating has improved a little. He goes for a follow-up appt with > his ped. neuro. on March 5th. > > Anyone who replies to this, CAN YOU PLEASE TELL ME WHAT MILESTONES > YOUR LITTLE ONE HAS/HAD ACHIEVED AT 8 MONTHS OLD.> > Thanking you in advance,> Tequisha>

Mother to , 7 1/2 months old> > > > > > > ---------------------------------> Finding fabulous fares is fun.> Let FareChase search your favorite travel sites to find flight and hotel bargains.>HEY EVERYONE MY DAUGHTER RILEY IS 8 MO OLD ON 02/15 SHE STARTED SITTING ON HER OWN@6MO BUT SHE HATES TUMMY TIME WHEN I PUT HER ON HER TUMMY SHE CRIES LIKE SOMEONE IS KILLING HER SHE WILL JUST GIVE UP SHE WILL NOT ATTEMPT TO CRAWL SHE GRABS THINGS SHE HOLDS HER OWN BOTTLE BUT I JUST CANT GET HER TO CRAWL SHE ROLLED OVER ONCE ONLY AND NEVER AGAIN MY HUSBAND SAYS IM PARANOID AND EVERYTHING AT ITS DUE TIME BUT WE JUST HAD SOME GOOD FRIENDS OVER AND THERE SON IS 2WKS OLDER THAN RILEY AND HE IS PRACTICALLY RUNNING HE CRAWLS ALL OVER THE PLACE HE STANDS IF HE IS HOLDING ON TO SOMETHING I DONT KNOW MAYBE SHE'S OKAY AND IM OVER REACTINGALEJANDRA LA

CA

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