Re: redipred (prednisone)

September 16, 2001

Hi Jodie,

Prednisone gives one a voracious appetite. I've been on it for 8 or 9 years, and I still have a great deal of trouble controlling my hunger. I can't imagine having to tell a child "no" to food when you know that child is really feeling the hunger pangs.

I try to keep raw carrots, radishes, celery, etc. in the fridge at all times. It's not really what I want, but it does help take the edge off. The only real trouble I have is after dinner at night. I can't seem to deny myself the hunger is so overwhelming.

Maybe you could try celery with a little peanut butter on it for your daughter? I try to eat that at night.

I wish you and your daughter well... This is such a difficult disease to figure out and to control.

My thoughts are with you both. Annette

-----Original Message-----From: jodie and glenn Sent: Sunday, September 16, 2001 7:48 AMTo: OurMyositis Subject: redipred (prednisone)

Hi everyone

I don't post a message very often but i read each and every email that you's write i look forward to the great ideas and help that is offered in this group.

My daughter Madeleine who will turn 3 in november has Juvenile Dermatomyositis and the doctors have started her on redipred, which she has been on for 3 weeks.My problem is that i am having big problems with her mood swings, she gets very emotional and cries for the least thing and the other is weight gain she has put on a heap of weight, especially in her belly and her face is starting to as well, i know that these are the side affects but i did'nt expect her to put it on so quickly . She is always hungry and asking for something to eat all the time , it breaks my heart to see how upset she gets when i have to say no to her eating everything in site.When she started the pred i cut out all foods that were not healthy for her , i am lucky that she loves to eat fruit and she eats some vegetables , but if i buy yogurt and put it in the fridge she will want to eat the whole lot of it in one day and she does'nt understand why i say no you can't eat all 6 of them.

I'm so scared that she is going to keep putting on weight, i went shopping today to buy her some clothes and i had to buy her 2 sizes bigger than i would normally buy her.

Anyway i was wondering if anyone had any ideas to help me with this , hope to hear from you's soon

from Jodie , mother of Madelein

Australia

September 16, 2001

Hi Jodie... it's so good to hear from you. So, Madelein is eating you

out of house and home... I can relate to those days. How much of the

Redipred is she on and how long has she taking it? I'm not sure if Cari

would know about that drug, maybe has been on it. As for the mood

swings.... those might level off as she take's the drug a little longer.

If not, then I think it would be best to call the doctor and let him

know. He might want to give her a smaller dose or space them out. I

know how heartbreaking it is to see your child cry for no reason at all

and there is nothing you can do.

I also put on the bloated belly and full face right away after I started

the Prednisone. I seemed to just blow up within a few weeks. It's

great that she likes to eat fruit, vegetables and yogurt. No matter

how hard you try, she's going to gain some weight and you've already

rid your cubbies of junk food so your on the right track.

Maybe Cari can best answer your questions on Madelein gaining weight.

has been through it all and is now on the road to recovery so she

might give you some tips to calm Madelein down and even some eating

tips.

Hang in there Jodie, it will get better... give Madelein a hug for me.

Vicki

September 17, 2001

Vicki

Thanks for you'r kind words of encouragement.

I thought i would put a picture of Madeleine up for you's to see .This is a picture of Madeleine in october last year where she was a flower girl for her aunty.

God Bless

Jodie

Re: redipred (prednisone)

Hi Jodie... it's so good to hear from you. So, Madelein is eating youout of house and home... I can relate to those days. How much of theRedipred is she on and how long has she taking it? I'm not sure if Cariwould know about that drug, maybe has been on it. As for the moodswings.... those might level off as she take's the drug a little longer.If not, then I think it would be best to call the doctor and let himknow. He might want to give her a smaller dose or space them out. Iknow how heartbreaking it is to see your child cry for no reason at alland there is nothing you can do.I also put on the bloated belly and full face right away after I startedthe Prednisone. I seemed to just blow up within a few weeks. It'sgreat that she likes to eat fruit, vegetables and yogurt. No matterhow hard you try, she's going to gain some weight and you've alreadyrid your cubbies of junk food so your on the right track. Maybe Cari can best answer your questions on Madelein gaining weight. has been through it all and is now on the road to recovery so shemight give you some tips to calm Madelein down and even some eatingtips. Hang in there Jodie, it will get better... give Madelein a hug for me.Vicki

September 17, 2001

Hi Jodie,

You may remember that my was also 3 when he began Prednisone. He also

became very puffed up and very hungry, especially at night. He ate from 8

to 10 in the evening, non-stop. Way past bedtime but he would be too hungry

to sleep. We had to purchase elastic waist pants for comfort. The

puffiness seemed to be worse after his afternoon naps. His face would be so

puffy you could hardly see his eyes. You have done all of the right things.

Removing all junk food and providing only healthy alternatives. It is

impossible to tell a child who is so hungry that they cannot eat. ,

like many others on this site, had a great craving for carrots. He would

dip them in ranch dressing by the bag full. I was afraid he was going to

turn orange! The good news is that, with children, the puffiness and

weight gain can increase greatly at first and then it starts to taper off.

Each time we lowered the Prednisone, unswelled a bit. At about the

one year mark, his weight was normal for his age. The first 3 months were

the worst as far as weight gain. I think that if she is hungry she needs to

eat. Listen to her cravings as children are still so intune with their

bodies. It is telling her what she needs.

also went throught the drastic mood changes. I wish I had some advice

for you here. All I can offer is that I understand what you are

experiencing. It always seemed to be worse, after a dosage change. It

would hit about day 3 and then last about 7 days. It was hard when one of

his sisters would be the brunt of an angry outburst. Their age doesn't

help. Are they having a temper tantrum because they are 3 or is it really

out of their control? would also get very weepy. I made sure the

shows he watched weren't of a sad nature or he would just cry and cry.

Disney movies are the worst for being tear jerkers. Even when we got down

to very low dosages, I would see behavior changes for a week or so. I would

wake up and just tell myself that I would accomplish nothing that day and

that was OK. experienced a lot of Obsessive Compulsive behavior. That

also would pass and then reappear with another dosage change.

I don't think I have been very helpful to you. Just wanted you to know that

what Madeline is going through is " normal " for Prednisone.

I have never heard of redipred so I have no experience with it.

I loved the pictures of Madeline! She is beautiful. Is that you in the

picture with her on the bottom?

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: redipred (prednisone)

>Date: Sun, 16 Sep 2001 21:48:00 +1000

>

>Hi everyone

>I don't post a message very often but i read each and every email that

>you's write i look forward to the great ideas and help that is offered in

>this group.

>My daughter Madeleine who will turn 3 in november has Juvenile

>Dermatomyositis and the doctors have started her on redipred, which she has

>been on for 3 weeks.My problem is that i am having big problems with her

>mood swings, she gets very emotional and cries for the least thing and the

>other is weight gain she has put on a heap of weight, especially in her

>belly and her face is starting to as well, i know that these are the side

>affects but i did'nt expect her to put it on so quickly . She is always

>hungry and asking for something to eat all the time , it breaks my heart to

>see how upset she gets when i have to say no to her eating everything in

>site.When she started the pred i cut out all foods that were not healthy

>for her , i am lucky that she loves to eat fruit and she eats some

>vegetables , but if i buy yogurt and put it in the fridge she will want to

>eat the whole lot of it in one day and she does'nt understand why i say no

>you can't eat all 6 of them.

>I'm so scared that she is going to keep putting on weight, i went shopping

>today to buy her some clothes and i had to buy her 2 sizes bigger than i

>would normally buy her.

>Anyway i was wondering if anyone had any ideas to help me with this , hope

>to hear from you's soon

>

>from Jodie , mother of Madelein

>Australia

_________________________________________________________________

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September 17, 2001

Hello Jodie,

FYI, Redipred is an oral liquid form or Prednisone.

Mood swings are very tough with Prednisone. would go from

laughing one minute to bawling the next, for no apparent reason.

She did gain control over time, even though her dose was high,

and as her dose was reduced, it got better and better. Still, it

was hard at times to know what was a Prednisone mood swing, and

what was normal kid behavior. I admit that we were sometimes

too impatient with , which we regret immensely.

Yes, I can witness, too, that our kids' appetites will grow almost

out of control for a while. With , it was literally within

24 hours that her appetite went nuts. Previously, she was a very

slow and picky eater - she would barely finish half of a typical

kid's meal at a restaurant, and only with severe prodding. After

Prednisone (oral tablets, 40mg/day at first, which she had learned

to swallow when she was 4), she would devour her meal and then

start picking off of our plates! It was unbelievable.

It might be a good idea to get your daughter involved. was

(and is) very disciplined, and when we laid down the eating rules

(controlled portions, no snacking EXCEPT fresh fruit and veggies,

skim milk only, no juices (calories), minimal sodium intake, etc),

she pretty much followed them. We asked her what would be a good

way to limit her food intake, and she made some good suggestions.

Let her keep track of things herself, if possible. Something to

give her some ownership of the problem.

Fortunatly, within a couple of months, 's appetite got somewhat

under control and we could retire as Food Nazis. You have to

remember that even with perfect diet control, weight gain is still

likely with Prednisone. It's probably not a good idea to do

total depravation of goodies; a kid still has to be a kid. Just

keep it reasonable - an occasional treat. I'd suggest NOT using

food treats as rewards for eating well, it's the wrong kind of

reinforcement.

Remember, too, that this is temporary, and as the Prednisone dose

is reduced over time, so too will the appetite be reduced. In the

longer term, the weight will come off eventually. Believe me, I

know how hard it is to see your child putting on weight seemingly

without limit ( added about 20 pounds to her then 60 pound

frame), but use common sense and patience and it will be all right.

Ralph

> My problem is that i am having big

problems with her mood swings, she gets very emotional and cries for

the least thing and the other is weight gain she has put on a heap of

weight, especially in her belly and her face is starting to as well, i

know that these are the side affects but i did'nt expect her to put it

on so quickly . She is always hungry and asking for something to eat

all the time , it breaks my heart to see how upset she gets when i

have to say no to her eating everything in site.When she started the

pred i cut out all foods that were not healthy for her , i am lucky

that she loves to eat fruit and she eats some vegetables , but if i

buy yogurt and put it in the fridge she will want to eat the whole lot

of it in one day and she does'nt understand why i say no you can't eat

all 6 of them.

> I'm so scared that she is going to keep putting on weight, i went

shopping today to buy her some clothes and i had to buy her 2 sizes

bigger than i would normally buy her.

September 17, 2001

Hi Cari

You have been helpful, now i know what to look for when she has her does put down and it is good to hear that it will get easier.

It is so emotionally draining for me.I'll tell you a little bit about Madeleine.

When i was 6 months pregnant with her i had a scan and it showed up that there was something wrong with her lung , they suspected that it was Cyst Adenomatiod Malformation which is cysts in her right lung, i had scans every 2 weeks to make sure that they were not growing because if they were and got to big her lung could have started to crush her heart and they were going to deliver her early. I had her two weeks early , when i saw her she was blue and i thought the worst , there was a team of pediatric doctors waiting in the delivery room to work on her and she was taken straight to intensive care . she spent 3 days in intensive care.

Madeleine had to have x-rays and see a lung specialist every two weeks and then at 6 months of age she had half of her right lung removed, they sent it off to be tested for cancer . When we got the results back it was good news, she did have a cyst in there but the main problem was that there was no breathing tubes going to that part of the lung and to my relief it was not cancerous.

After the operation she spent 3 days in intensive care again and one in the normal ward ( it is amazing how little kids bounce back after such a big op). It was so frightening to see her after the op she was in a lot of pain , i was physically sick , it just rips at your heart to see a child like that, she was on a lot of pain relief.

After she came out of hospital she had monthly x-rays and after a while it went to 3 monthly, about 12 months after the op the doctor said he thought something else had shown up on the xray , but it could only be scar tissue.After another 3 months of worrying showed that it was only scar tissue.

So about 4 months ago she was given the all clear with her lung and doesn't have to have another xray for two years .

When i thought everything was fine now she has Juvenile Dermatomyositis.

I often wonder if the two are linked in some sort of way .

Any way i think ive rambled on enough

from Jodie

redipred (prednisone)>Date: Sun, 16 Sep 2001 21:48:00 +1000>>Hi everyone>I don't post a message very often but i read each and every email that >you's write i look forward to the great ideas and help that is offered in >this group.>My daughter Madeleine who will turn 3 in november has Juvenile >Dermatomyositis and the doctors have started her on redipred, which she has >been on for 3 weeks.My problem is that i am having big problems with her >mood swings, she gets very emotional and cries for the least thing and the >other is weight gain she has put on a heap of weight, especially in her >belly and her face is starting to as well, i know that these are the side >affects but i did'nt expect her to put it on so quickly . She is always >hungry and asking for something to eat all the time , it breaks my heart to >see how upset she gets when i have to say no to her eating everything in >site.When she started the pred i cut out all foods that were not healthy >for her , i am lucky that she loves to eat fruit and she eats some >vegetables , but if i buy yogurt and put it in the fridge she will want to >eat the whole lot of it in one day and she does'nt understand why i say no >you can't eat all 6 of them.>I'm so scared that she is going to keep putting on weight, i went shopping >today to buy her some clothes and i had to buy her 2 sizes bigger than i >would normally buy her.>Anyway i was wondering if anyone had any ideas to help me with this , hope >to hear from you's soon>>from Jodie , mother of Madelein>Australia_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

September 17, 2001

Hi Ralph

You mentioned no juices, Madeleine has make up juice which is 35 % juice, I know it is not good but she wont drink water . Do you have some suggestions on what to give her to drink instead of juice.

thanks for you'r reply to my letter you have been a great help in me understanding that I am not alone in what im going through and it is good to know that it is going to get better

from Jodie

Australia

Re: redipred (prednisone)

Hello Jodie,FYI, Redipred is an oral liquid form or Prednisone. Mood swings are very tough with Prednisone. would go fromlaughing one minute to bawling the next, for no apparent reason.She did gain control over time, even though her dose was high, and as her dose was reduced, it got better and better. Still, itwas hard at times to know what was a Prednisone mood swing, andwhat was normal kid behavior. I admit that we were sometimestoo impatient with , which we regret immensely.Yes, I can witness, too, that our kids' appetites will grow almostout of control for a while. With , it was literally within24 hours that her appetite went nuts. Previously, she was a veryslow and picky eater - she would barely finish half of a typicalkid's meal at a restaurant, and only with severe prodding. AfterPrednisone (oral tablets, 40mg/day at first, which she had learned to swallow when she was 4), she would devour her meal and then start picking off of our plates! It was unbelievable. It might be a good idea to get your daughter involved. was (and is) very disciplined, and when we laid down the eating rules(controlled portions, no snacking EXCEPT fresh fruit and veggies,skim milk only, no juices (calories), minimal sodium intake, etc),she pretty much followed them. We asked her what would be a goodway to limit her food intake, and she made some good suggestions.Let her keep track of things herself, if possible. Something togive her some ownership of the problem.Fortunatly, within a couple of months, 's appetite got somewhatunder control and we could retire as Food Nazis. You have to remember that even with perfect diet control, weight gain is still likely with Prednisone. It's probably not a good idea to do total depravation of goodies; a kid still has to be a kid. Justkeep it reasonable - an occasional treat. I'd suggest NOT usingfood treats as rewards for eating well, it's the wrong kind ofreinforcement.Remember, too, that this is temporary, and as the Prednisone doseis reduced over time, so too will the appetite be reduced. In thelonger term, the weight will come off eventually. Believe me, Iknow how hard it is to see your child putting on weight seeminglywithout limit ( added about 20 pounds to her then 60 poundframe), but use common sense and patience and it will be all right.Ralph> My problem is that i am having big problems with her mood swings, she gets very emotional and cries for the least thing and the other is weight gain she has put on a heap of weight, especially in her belly and her face is starting to as well, i know that these are the side affects but i did'nt expect her to put it on so quickly . She is always hungry and asking for something to eat all the time , it breaks my heart to see how upset she gets when i have to say no to her eating everything in site.When she started the pred i cut out all foods that were not healthy for her , i am lucky that she loves to eat fruit and she eats some vegetables , but if i buy yogurt and put it in the fridge she will want to eat the whole lot of it in one day and she does'nt understand why i say no you can't eat all 6 of them.> I'm so scared that she is going to keep putting on weight, i went shopping today to buy her some clothes and i had to buy her 2 sizes bigger than i would normally buy her.

September 17, 2001

Hi Jodie..... I LOVED the pictures of Madeleine..... especially the one

in her little dress sitting in the chair. She's a cutie and I can see

how it must be very hard to say no to her....

Hope you'll have a better day...

Hugs

Vicki

September 18, 2001

Jodie... Madeline is an adorable little girl! Annette

Re: redipred (prednisone)

Hi Jodie..... I LOVED the pictures of Madeleine..... especially the one

in her little dress sitting in the chair. She's a cutie and I can see

how it must be very hard to say no to her....

Hope you'll have a better day...

Hugs

Vicki

September 18, 2001

Jodie... That poor child has been through so much! You're right...it IS amazing how children bounce back from such serious surgery, and thank God they do. Keep your strength. Annette

-----Original Message-----From: jodie and glenn Sent: Monday, September 17, 2001 6:18 PMTo: OurMyositis Subject: Re: redipred (prednisone)