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Old 09-24-2005, 08:15 PM   #1
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serinity HB User
juvenille dermatomyositis

Anyone with a child that has dermatomyositis?

 
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Old 10-28-2005, 10:24 AM   #2
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Re: juvenille dermatomyositis

My daughter was diagnosed in August of 1996 with JDM.She has been in remission for 6 years.She is now 13.She was 4 at diagnosis.It changed our life , there were a lot of ups and downs.Like you we were devastated everything changed and my poor helpless daughter this wasnt her fault or ours.I kept asking myself why why her.I will never forget how helpless I felt.At that time her and only a few others had this in the whole state of Florida.It was scary.My daughter was started immediatley on solumedrol IV.Within a couple of weeks she was getting her strength back,but we were far from being done with this disease.I planted myself at the library, internet and anywhere else I could find info on dematomyositis. With the high dose steroids there came problems.She was emotional, she got huge,she grew hair everywhere,then she started getting fractures,apparentley the steroids softened her bones up so it started out with a hairline fracture in her knee from just being a kid and running around and then a couple of weeks later she had back pain.She started kindergarten wearing a backbrace.The steroids also caused high blood pressure .She was started on rocaltrol wich is a calcium supplement for her bones.She developed a kidney stone from the build up of calcium in her kidneys.I took her for a second opinion but we ended up staying with our doctor and he took her off of steroids because of the problems and we started her on methotrexate(which is a drug for cancer)but the benefit of this drug outweighed the risks of not being on it.They also added naprosen for her arthritis symptoms.She did good and everything was looking up.We slowly took her off all meds and shes been in remission ever since.She now is so atheletic you would never know she had this disease.She still goes in once a year for bloodwork and a checkup.She has however been comlaining of arthritis like symptoms lately and she goes back to the specialist in November.Im praying its just growing pains but I always wonder in the back of my mind if it will come back,the doctor said there was a very slim chance it would.Anyways Im sorry for ramblin on I just wanted to let you know it isnt the end of the world,there is remission and when children are diagnsed with this , it usually does go into remission and you will have your happy healthy daughter back.

 
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Old 09-15-2006, 03:35 PM   #3
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Re: juvenille dermatomyositis

I don't have a child with Dermatomyositis but I was one.
Dx at age 6. Tons of Cortisone, tests, PT, a 6-week stay in hospital, etc. Remission at age 8. I am now 37 and it has not come back though I do still have weaker muslces than the norm and have some RA symptoms that are most likely the leftover result of the DM.

 
Old 09-29-2006, 01:25 AM   #4
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Re: juvenille dermatomyositis/Daughter has it

Hi Serinity
I have a Daughter who became very ill in April last year, she was rushed to the Hosiptal with a CK of 16,000 and a rash and unlarged liver and in alot of pain in the legs and back. They told us it was the above. She has been pushed from pillow the post ever since.
In New Zealand there are only 5 other kids with this, so the Specialists don't know what to do. She has had 3 and now has a Nuero.
Her Ck has been high over the past year with all the other symptoms. 4 months ago she had a EMG which without doubt that the muscles are dying in her body. 1 month ago she had a Biopsy and we are still waiting for results. She is a teenager and has been unable to go to school for most of this year. It breaks my heart to watch her suffer like this.
Please contact me if you want to know anything else.
Julie

 
Old 11-30-2006, 04:38 PM   #5
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Re: juvenille dermatomyositis

kiwi girl
can you tell me what the doctors are treating her with?when my daughter was diagnosed they treated her with solumedrol iv every other day and then started her on oral prednisone.

 
Old 12-01-2006, 10:25 PM   #6
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Re: juvenille dermatomyositis

Hi Serinity
Our problem is that she is still not on any Meds. I really don;t know how one can treat a sick child like this.
Because it is so rare, the Docs in NZ don't know what to do. she has had all the test that show it is Derma, but still nothing. She recently had a biopsy which showed the cells, but still that was not good enough, they have now sent it to Australia and will take 4 months. My daughter will not take steriods know matter what.
Is the IV treatment the one that is made from blood products? I have heard that this is better for the kids.
How is your Daughter? How did her appointment go?
Please keep in touch with me and let me know about your child.
Kind regards

 
Old 12-02-2006, 08:01 PM   #7
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serinity HB User
Re: juvenille dermatomyositis

kiwigirl
Can I ask why your daughter will not take steroids?Derma needs to be treated or it will continue to get worse.
Sending good wishes your way

 
Old 12-02-2006, 10:44 PM   #8
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Re: juvenille dermatomyositis

Hi, I guess it is mainly because of the side affects, if they had started treating her when she was only 13 it might have been different. Now she has recently turned 16 and has done some research, she said to me she could not stand to take steroid, because of what they do. She is scared too which is understandable.
That's why i asked about the IV blood product treatment. From what I have found out, they usually use this if kids don't respond to steroids, but I have not seen anything that says they won't use this first. Also my research said that the kids on the blood product treatment don;t have many side affects and they get better much quicker.
How's your daughter?
I am thankful for any advice you can give me. Talk soon

 
Old 12-03-2006, 06:59 AM   #9
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Re: juvenille dermatomyositis

I totally understand about the steroids and their side effects and your daughter not wanting to take them. In my daughters case the benefits outweighed the risks.I feel if she hadnt started the steroids she would of gotten worse because with no treatment the musles deteriorate more and more.After a couple of weeks of being on the steroids my daughters cpk went down and she was able to climb up the steps again.It was just wonderful to watch her go from being so weak and in pain back to a healthy child again. Yes the steroids had the side effects ,but I would do it all over again for her to get better.She is now in remission and playing sports which is something I thought Id never see.
I have never heard of the blood product, which Im sure they have come along way since my daughter was diagnosed back in 1995.
I want to tell you good luck and I hope they hurry up and get your daughter on something.
Sending good wishes your way

 
Old 12-09-2006, 06:04 PM   #10
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kiwi girl HB User
Re: juvenille dermatomyositis

Hi serinity
I saw my daughter's doc the other day and she said that she rung her specialist and had a talk to him, he told her he does not think it is Derma........ but thinks that she does have a muscle prob, but does not know what.
I think this guy is nuts, how can it be that all her test show Derma and he is still saying no, i'm at my wits end. The test from Aussie has not come back yet, it sux living in a small country sometimes. You have to deal with Doctor's that dont know what they are doing.
Thanks for listening

 
Old 09-21-2007, 01:44 PM   #11
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Re: juvenille dermatomyositis

Quote:
Originally Posted by shilowmyangel View Post
we where just told my dauther has it and i would really like to talk to you i need to talk to other people who are going through this the fear i feel is just to much to handle alone and to share ideas and stories i think would help to feel not so alone thank you
Hi, I had dermatomyositis at age 18 which isn't considered the adult form which occurs in 40 to 50 year olds more often. Actually I had no idea what I had was dermatomyositis until today I heard on the radio about a singer who had it, and I was like "That is what I had." So I looked it up on the internet, and now I've been reading all these post of parents with children who have it, and I feel for you. But I'm here to say it's going to be ok.

If anyone would like to call me and ask questions or anything, please just feel free to call me my name is Chris and my number is 919-607-1712. Really feel free to call anytime.

I know it is hard for a child to express how they feel so I'll explain my experience. I was a senior in high school when I got sick. I went to high school in Japan, and was on the varsity basketball team at my school so I was in really good shape. The first symptom I had was an itchy back. Me and a friend skipped school to watch the Super Bowl, and that morning driving my car, my back started to itch. So I put some calamine lotion on, and it helped a little but not really. So as the days went on the rash wasn't really going away, so I just dealt with it. Then one Saturday morning I woke up and my muscles were sore all over. It's the same sore feeling you get after lifting weights no different, except it never gets better you just get more sore. So my muscles were sore, but I just sucked it up, and kept playing basketball and going to school. Finally my muscless became so weak that one morning it took me 10 minutes to get out of bed. I am a pretty strong guy 6' tall and well built, and it took all my strength to roll over on my side. I would sit there and visualize my next move. Muster up the strength and throw my leg off the edge of the bed. My bedroom was upstairs so I slowly inched my way down stairs and told my dad I think something is wrong I could barely move. So that's when he drove me to the doctor. The doctor had no clue what was wrong with me, and he never figured it out, but he said it looked like my immune system was thinking my muscle protein was a virus(viruses are protiens) so it attacked the muscle as if ti was a virus. So basically he said we are going to shut your immune system off by overdosing it with steroids, and hopefully that will stop it from eating away all your muscles. So he prescribed my prednisone and slowly reduced the dosage over a few months. And finally it went away. The whole thing lasted about 4 or 5 months. I am 24 years old now and have never had a problem with it since.

Now the prednisone helped my symptoms, but that is not what got me through it. This is my personal advice, and I'm sure many people will not agree with this tactic. But I know for a fact that above all what helped me recover so fast and so quickly was my father. Now my dad and mom are both United States Marines so they are a tough bunch. Plain and simple they had no sympothy. Now later on they told me they were scared to death, and afraid I was going to die, and distraught like any other parent would be. But they never showed it because then I would had picked up on that negative energy and started feeling sorry for myself. My parents never helped me get out of bed, never helped me down or up the stairs never did anything. My dad would simply stay "Stop faking it boy!", and "You better dig down and grab ahold." Which basically means find the strength to get up no matter how bad it hurts. Don't get me wrong he wasn't a jerk about it. But simply he wouldn't let me give up he made me fight. When he came home from work I would be sitting in his recliner, and he would say "Get your *** outta my chair." I would reply "I can barely walk." simply he'd retort "Than you shoulda never sat there." Honestly he could care less I was sitting in his chair that wasn't the point. The point was I was sitting on my *** all day sick watching T.V and like in battle if you lay day when your injured you die. And this disease is a battle and you can't let your children lay down and let it beat them. Now I know boys are different from girls, and 18 year old is alot different from a 5 or 6 year old so obviously you can't use the same language and tactics. But you can provide the same motivation. You can feel sorry for them, and you will, but don't show it. But instill in them the motivation to keep going, and work past it. While I was sick I was out of school for months, but I was elected homecoming king somehow, and I really wanted to play in the homecoming basketball game because it was the last game of the season, and the last game of my high school career so I fought my way out of bed, showered walked down stairs drove to school, and that night played in the game. I scored only one basket and was the most awful game I ever played, I was slow clumsy, and basically just sucked. My muscles were on fire, and I thought I was gonna die, but I got that last game in. And if I didn't have my dad pushing me to not succumb to the disease I would have just watched my last year of high school pass me by. My senior year in highschool I was taking college calculus, college chemistry, and college physics, and college english so I had a tough schedule, and my teachers where like you've missed an entire quarter you'll never catch up. Well I wasn't about to repeat a year so I had them assign me all the months of back work, and I busted my but and taught myself the entire curriculum, as well as learned what they were teaching at the time, and passed with honor roll got into Virginia Tech and lived happily ever after.

So I tell you all that, and I know it sound like I'm praising myself but I don't mean to sound that way, the truth is my father pushed me, and I prayed and asked God for strength, and he gave me what I needed. And it was only by his grace that I recovered 100%. Now I know it's not fashionable to talk about God, but I really don't care. I'm just telling you that for me. I know that God afflicted me with the disease, and he cured me of the disease to teach me a valuable lesson. One that taught me the strength of belief. What He spoked to me was "I'll take you to the very edge of death, but I'll never forsake you. And there is no fear in dying if you know I am here." Now I'm not trying to tell you what God is trying to say to you or whatever. That's not my place, and I doubt God is trying to teach a 5 or 6 year old child something. But your child's sickness may be for your own growth. Don't believe that your child will be ok. Know he/she will be ok. Because they will. Even if they don't make a 100% percent recover they will be ok. And as long as you don't nurture their sadness, and weakness. They won't nurture it either.

Again I'm sure my views may be a little radical for some, but I've lived through what your children are living through and came out the other side unscathed. And I know how you feel. The uncertainty, the fear. I honestly thought I may die. Mainly because the doctor told me, "Be prepared you may die, because I have no idea what is going on with you." So I know while your "in" the bad times right now there is a bright future, and soon you'll be sitting back talking about "You remember how sick you got back in 06' 07'. Yea that was scary but look at you now."

One last thing about the symptoms. The fighting to get of bed, and walk and brush my teeth went on for months. I never had a wheel chair or crutches, and I don't recommend them. I just made due. And let me just say when your child complains of itching. LISTEN. Now don't baby them, but that itch is the most intense and agonizing itch I've ever felt. The only thing about having that disease that bothered me was that itch. I can take alot of pain, but that itch is pretty much unbearable. I can't even describe how agonizing it is to me it felt like I million fire ants were biting my back all at one, and the multiply that pain and itch, by a trillion. And the bad thing about it is the more you scratch the worse the itch gets, it's like if you scratch it it just intensifies. It's very hard to explain. It's really that bad. I tried calamine, and didn't work. And the doctor never prescribed me anything. So what I would do (and I don't recommend this unless your kid is tough as nails.) I would get in the shower and turn the water on to scorching hot just the hottest I can get it, and just burn my back or whatever other part itched, and that heat would sooth the itch. It would burn, and hurt but the pain canceled out the itch so it was worth it, because the itch is that bad. The water burned but didn't do any damage to my skin. But I know children's skin is much more sensitive so that may not work that well unless they are teenagers, and can handle a little pain. But it worked well for me. Now maybe a less drastic measure may work I dunno. I'm just telling you what worked for me. Because I was 18 and couldn't describe how bad that itch was, so I know a child must just be crying because they don't know what else to say. BUT don't nurture it, just try to find a solution calm, and cool. Don't let them see you panic or they will panic. So help them fight through it.

Sorry this is so long, but this is the internet, and chances are the person that find this post useful won't find this post for 3 years, so by them my number will probably be different, and I'm just trying to give as much advice as I can in one sitting.

Again feel free to call me if you have more questions or want some details about the sickness, or just need a friendly ear. I'll listen. Again my name is Chris and my number is 919-607-1712

One final final final note. What causes this?? I have no idea, but for me I remember two distinct events that happened to me right before I got the sick. In the same day, my girlfriends mother gave me some vegetable I never had before. This was in Japan so you probably won't run into it here, sorry I don't remeber the name but it was a green much like spinach. And the second thing I had an Iranian friend who had and Iranian tea house and hooka bar, and I had some tea there, and smoked a hooka with some Iranian tobacco. I'm not a smoker so I don't know if it was the tea, smoke, or vegetable, but I always believed one of those things was the culprit. In reality it could be anything.

Last edited by crankin; 09-21-2007 at 02:45 PM. Reason: typos

 
Old 02-19-2008, 12:07 PM   #12
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Re: juvenille dermatomyositis

Our son was diagnosed with this not quite a year ago. We are having a really rough time with this. He is now six and he cannot get into remission. He has been on 20ml of predisone for almost the full year with pulse steroids once a month. He is also doing the IVIG treatments once a month and we were one of the very few that have undergone the rutuximine treatments. He is on so many different meds and is now having stomach pains daily. I try to keep a good outlook on everything but it is very difficult. We are very lucky in the fact that we are in St Louis and we have one of the best hospitals in the world, but we still live with fear daily. What keeps us going is my son is the happiest kid ever and only gets down when he has to get his weekly methotrexate shot. He is the bright spot in our lives and i keep my fingers crossed that all will be well soon. If there is anyone else out there that has any other advice on how to cope I would love to hear from you.

 
Old 02-25-2008, 11:33 AM   #13
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Re: juvenille dermatomyositis

How to cope??? We never talk in front of our daughter about our worries or concerns. When people ask us how she is doing (in front of her) we always say she is doing great! And getting stronger and stronger everyday. Our we lying to our daughter? Not really because we noticed with all the positiveness it elemenates some negitive. We have an afirmation we say to her on her bad days "We are going to do anything and everything it takes to get through this."
My 10 year old daughter was diagnosed with Dermatomyositis in September 2007. We noticed her weakness in August, we thought she was just being lazy. She responded very well to treatment (IVIG, Salumederal (1000 mg pulses), predisone (60mg) Elivil and methotrexate) She had been in a wheelchair since her diagnosis in September. She was walking, doing cartwheels and skinning her knees from riding her scooter the first week in November, so we thought we had her Dermato under control. In February she was down to 7.5mg predisone.

Three weeks ago she started crawling up the stairs again. The doctor pulsed her with salumederal 250mg for three days and increased her predisone to 20mg. She complains every morning and every night that she is in pain. Her doctor thinks this is more emotional than Dermato.

I wish you all the best, it kind of helps knowing that we are not alone in this....

 
Old 07-29-2008, 08:35 AM   #14
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Re: juvenille dermatomyositis

Hi My Daughter Was Diagnosed With Jdm Last November And I Am So Glad To Hear Other People Are And Have Gone Through The Same As Us As We Really Have Felt So Alone In Our Quest For Information And Help For Our 7 Year Old Daughter. Thankfully Though 10 Months On Our Daughter Is Flying In That She Is Doing All She Wants To Do. She Really Is A Star Patient , She Does Get Very Tired Though And Emotional. She Is Currently Getting 12.5mg Methotrexate Every Friday By Injection In Her Stomach Which I Have Gotten Used To Giving Her Myself- I Did Dread It To Begin With Though- And We Have Her Down To 3mg Of Oral Steroids Daily And Our Aim Is To Have Her Off Them In September / SHE WILL HAVE BEEN ON THEM FOR 11 MONTHS THEN. We Have A Superb Team Of Doctors + Nurses Looking After Her Care.we Travel A Round Trip Of 550 Miles Every 6 Weeks To See These People Who Are Specialists In This Field And Will Continue To Do So As Long As We Have To. They Have No Plans In Ever Taking Her Off Methotrexate Only To Increase The Dose With Age/height/weight. The Benefits Of This Really Have To Out Weigh The Side Effects . I Have No Doubt In My Mind That In Time With The Huge Amount Of Research Being Done In This Field They Will Find A Cure For All Our Children.[/center][/center]

Last edited by ANGIE32; 07-29-2008 at 08:38 AM.

 
Old 10-27-2008, 12:06 AM   #15
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Re: juvenille dermatomyositis

Quote:
Originally Posted by kiwi girl View Post
Hi, I guess it is mainly because of the side affects, if they had started treating her when she was only 13 it might have been different. Now she has recently turned 16 and has done some research, she said to me she could not stand to take steroid, because of what they do. She is scared too which is understandable.
That's why i asked about the IV blood product treatment. From what I have found out, they usually use this if kids don't respond to steroids, but I have not seen anything that says they won't use this first. Also my research said that the kids on the blood product treatment don;t have many side affects and they get better much quicker.
How's your daughter?
I am thankful for any advice you can give me. Talk soon
Hi, I am an adult with DM who has tried IVIG (blood product). I can only tell you from my own experiences that I have not experienced any major side effects aside from a bit of nausea and headaches immediately after the treatment but usually lasts no more than a day. I have tried almost every medication and IVIG seems to work best for me however it seems that my rash and itchiness seems to have come back after several months of the little or no symptoms.

 
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