Does anyone know anything about "Dermatomyositis"

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jay5
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Date Joined Mar 2005
Total Posts : 144
   Posted 11/18/2005 11:45 PM (GMT -7)   
Hi this is Jay4,Does anyone anything about "Dermatomyositis" any info would be helpful.thanks

Howlyncat
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   Posted 11/19/2005 4:21 AM (GMT -7)   
Hi Jay I just put the Dermatomyositis in the "Search Site " and came up with quite a bit of info ..........Have a look see .....take care and God Bless ....Lyn
 
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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 11/20/2005 8:56 AM (GMT -7)   
Hi Jay,
I'm looking through some of my medical texts...when I gather up a good chunk of info, outcomes, and manifestations I will post them for you.
Do you suffer from this currently?
Take care Jay & speak to you soon
Erin

jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 11/22/2005 6:47 AM (GMT -7)   
Erin,any info would be great,my granddaughter was Dx with this in Oct,this DD seems to be moving very fast.I want to learn more about this to help her parents and her.She is only 5 yrs old and we all are very concerned and worried.any help would be great.Thank you so very much.Jay4

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 11/22/2005 7:43 AM (GMT -7)   
Hey Jay4-
 
This is what I've found so far:
 
Dermatomyositis is one of a group of acquired muscle diseases called inflammatory myopathies. The disease, which has a somewhat severe onset, affects both children and adults. Females are more often affected than males. Dermatomyositis is characterized by a rash accompanying, or more often, preceding muscle weakness. The rash looks like patchy, bluish-purple discolorations on the face, neck, shoulders, upper chest, elbows, knees, knuckles, and back. Some people may also develop calcium deposits, which appear as hard bumps under the skin. The most common symptom is muscle weakness, usually affecting the muscles that are closest to the trunk of the body. Eventually, people have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, muscles further away from the trunk of the body may be affected later in the course of the disease. Problems with swallowing (dysphagia) may occur. Occasionally, the muscles ache and are tender to the touch. Affected individuals may also feel fatigue and discomfort and experience weight loss or a low-grade fever.
 
Treatments:
 
Prescribing a steroid drug, such as prednisone, is usually the first line of treatment. Immunosuppressants, such as azathioprine and methotrexate, may help those for whom prednisone is ineffective. Further treatment with intravenous immunoglobulin was shown to be effective and safe. Physical therapy is usually recommended to preserve muscle function and prevent muscle wasting.
 
Most cases of dermatomyositis respond to therapy. The disease is usually more severe and resistant to therapy in individuals with cardiac or pulmonary problems.
 
What is her doctor doing for her?  Is she on any meds?  Good luck to you and please keep up posted... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel

Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant

Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
 
Current Meds -  Enbrel/Prevacid/Synthroid
 
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 11/22/2005 8:10 AM (GMT -7)   
Ducky,Yes this started with the rash,we all noticed it on Oct ,7th,thought maybe new soap or something,they took her to Dr. and he thought lupus,sent her to childrens hospital for blood work,test came back neg.then went to skin Dr,and they Dx with this.more blood and then sent to Rhummy doc.she is on Pred and methotraxate,she was on 4mg of pred and the other she takes once a wk.she has the rash on face,elbows,knuckles and on the back of her neck.she is hurting very bad,hurts to even touch her.they raised her pred to 8mg this last w/e.she is having trouble eatiing,they cut everything up very small,and when she drinks anything it comes out of her nose.she is very week,not sure if she will be going to school much longer.she is hurting so bad,as a grandpartent i just want to do everything to help her and her partents,to say the least we are all very upset and just want to learn as much as we can about this DD to help.thank you so much for this info.we are in this far already,not knowing what is next is the point.thanks again for your help.Jay4

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 11/22/2005 8:41 AM (GMT -7)   

Hey Jay4 -

I found more info... hope this helps...

Chronic abdominal pain is a common nonspecific finding which may also necessitate a higher corticosteroid dosage.

In most situations the corticosteroid dosage can be monitored by following serial CPK or aldolase levels. The treating physician must be aware that prednisone themselves may cause muscle weakness (steroid myopathy). If the patient is becoming weaker without a corresponding increase in the muscle enzyme levels, it may be necessary to rapidly taper the corticosteroid dosage. However, this may be associated with a disease flare. 'IV bolus' prednisone are useful if a rapid response is need for critically ill children with dermatomyositis, but are associated with potentially severe side effects.

Most children will recover completely with prednisone alone. However, some will have persistent, active disease or develop unacceptable corticosteroid side effects. Methotrexate is often beneficial for these children. Low dose oral methotrexate at 10 mg/M2, has been relatively ineffective for childhood dermatomyositis. Larger doses of methotrexate (0.1 mg/kg gradually increased to 1 mg/kg) administered weekly, intramuscularly or intravenously, have been associated with a dramatic improvement. Hepatic toxicity and white blood cell levels must be monitored carefully. Intravenous methotrexate therapy in this dose range may also be associated with significant nausea, which may be reduced by premedication. For most children the maximum necessary dosage of methotrexate is 1 mg/kg (with a maximum of 50 mg). However, higher doses have been used successfully in selected cases.

New studies suggest the etanercept (Enbrel) or other agents which block tumor necrosis factor (TNFa) may be less toxic and more effective in treating children with dermatomyositis. 

In addition to medical management, patients with dermatomyositis or polymyositis require an ongoing program of physical and occupational therapy to prevent continuing weakness and the development of contractures. Passive range of motion and icing are of benefit even during periods of active muscle inflammation, but active range-of-motion and isometrics should be withheld until the muscle enzyme levels are declining.

What is the long term outlook?

The long term outlook for children with dermatomyositis is good. Although some children do have very severe disease most will eventually recover nearly full function.

 Ok, we may have to have Erin interpret that for us... but the outlook seems great... just sounds like it's at it's worst in the beginning... Let us know how she is doing, my heart goes out to her... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel

Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant

Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
 
Current Meds -  Enbrel/Prevacid/Synthroid
 
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/22/2005 9:03 PM (GMT -7)   
Dear Jay4,
Oh your poor little grandaughter.  What a terrible thing for kids to go through. 
The info Ducky provided was quite accurate.
 
The thing with dermatomyositis is, that where the heck it springs about from or what triggers it is still unknown and baffles docs.  Be secure in knowing that she is under a doctors eye right now which is a good thing, and has started some meds.
 
This disease can be acute, subacute or even chronic too (which means it may re occur).
 
In the hospital or as a caregiver, I would treat the patient with this disease as follows:
monitor her swelling if any, her rashes, weakness and pain. 
check for fevers.
She'll be in a lot of discomfort and maybe very weak too.  To make sure she maintains range of motion in her joints (we're preventing joint contractures here) slow steady motion exercises can be performed even while in bed.  Go easy on the pelvis and shoulders as they may hurt a lot.  Gentle exercise while resting will help prevent muscle atrophy.
Keep her in good alignment when resting and help reposition her for comfort.  By keeping the head of the bed @ 35 to 45 degress with pillows will aid in chest comfort and help lung expansion.
Also, to help the dysphagia...sit up at 90 degrees while eating and do not lay down for at least over an hour to prevent reflux.  Also, avoiding drinking while eating will help too.  Save a drink for after a meal and avoid carbonated liquids.  Small snacks may be better.  Nothing too fatty.
Warm baths and light massage help ease the pain (add in some soothing music too!  lifts the spirits).
Analgesics are given.  Is she taking a pain reliever??
For skin pruritis, try tepid sponge baths and compresses.  Try to avoid scratching and maybe ask for an antihistamine if bothersome.
Keep her diet low sodium to prevent swelling and discomfort.
 
It's important for her to feel in control too.  Maybe have her pick out her snacks, get new PJ's, a few videos.  Encourage her independence as much as possible.  She may come to you expressing worries, concerns and fears...encourage her to talk about it!  And let her know there are  a lot of little boys and girls and adults too that go through this.
 
The prognosis of this is favorable.  May take time though.  Be persistant with the docs and if ever unhappy...seek another opinion.  The good thing is that doctors do tend to take children VERY VERY SERIOUSLY, so this is a reassuring feeling.
 
Be careful though with the liquids and drinking.  Aspiration is priority to watch for.  Tiny Tiny sips at a time.  Maybe trying to take some small bites of watermelon would help...it's semi solid and contains lots of water.  We want to prevent dehydration.  Keep some pediaLyte on hand.
 
I know you must feel so much for your little girl!  Keep her happy.
Hey, even read this to her to let her know how many people are thinking of her....post any time you want!!!  Any concerns, questions...someone's always here.
Prayers are with you 
take care, I hope this was of some help.
sincerely,
erin   

Post Edited (erin kachmar) : 11/22/2005 9:06:30 PM (GMT-7)


jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 11/23/2005 4:44 AM (GMT -7)   
Erin and Ducky,Thank you for all the info,It means a lot to me and to her family.My hubby and I watched grace and her little sis last night just to get her mom some free time while daddy  was a work,Grace seems to be talking through her nose,it is hard to understand her sometimes.She really seems to be hurting,she is givin motrin for the pain.she seems very restless.thanks again for all the info.Please keep us in your prayers.wishing you a very happy holiday.thanks Jay4

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 11/23/2005 4:56 AM (GMT -7)   
You and your family will be in my prayers... the poor baby... please keep us posted on how she is doing... Have a blessed holiday... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel

Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant

Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
 
Current Meds -  Enbrel/Prevacid/Synthroid
 
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/23/2005 5:39 AM (GMT -7)   

Dear Jay4,

Glad you got time to spend with her!  My grandmother is my hero!  She kicked end stage colon cancer's BUTT!!!!  complete remission.  yeah Here's to grandmothers! yeah

When you say restless, is she just having like "cabin fever"? and frustrated with everything, or is she physically restless?  like tossing and turning, restless legs, uncomfortable, dizzy, headache?  Clinical restlessness can be brought about by edema/swelling. Take notice if her hands and arms and feet twist inward whe lying down and turn stiff.  Just for caution.  Unlikely, but swelling near the brainstem can cause increases pressure around the brain causing restlessness. Let me know.  This I have never heard of with what she has, but with kids NEVER LEAVE A STONE UNTURNED I'm sure you feel the same way.

Is she sounding nasal?  The "talking through her nose" can be from irritation to the sinuses from the reflux caused by the dyshagia.

I meant to ask, some kids get mouth ulcers with this making it MORE painful to eat.  Salt water swishes help with that.

What are her days like now???  Is she able to get about a little???

  :-)   :-) Tell Grace we at HW say "Goodmorning! and We're thinkin' of ya!  Hang in there sweetheart!" :-) :-)

Take care Jay4


jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 11/23/2005 12:06 PM (GMT -7)   
Erin,thanks for your reply,Grace had a hard time getting comfortable trying to sleep.just tossed and turned.I told her mom and she gave her something.Her hands do not look swollen.Her rash is looking some what better too.Yes she is talking nasal,sometimes you can't understand what she is saying.She is drinking from a straw and very slowly which seems to help.Grace is still going to school,her teacher is letting her sit-lay in a bean bag chair when she gets tired.She has no ulcers in her mouth but she says everything is spicey,she ate popcorn last nite after it sat for a while.I'm not sure how muxh longer she can go to school it is making her so weak.all she wants to do is lay and we help her lay down or get up.she has to have help to change clothes because she can't raise arms and can not bend down.she is very senetive,will cry at the drop of the hat.we will keep you up dated,thanks for all your help.Jay4

oreo
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Date Joined Feb 2004
Total Posts : 528
   Posted 11/24/2005 12:58 PM (GMT -7)   
Jay4, my heart goes out to you and your family. What an awful crisis to go through. I will keep all of you in my prayers. I can't offer any other suggestions that haven't already been made. Just know that you are not alone in this. We will all support you here. Emotionally we are with you.

May God grant you the courage to face this head on and get through it. Lean on your hubby and God through this. God will get you through it.

Oreo
God will never give us more then we can handle, I just wish that God didn't trust me so much.
 
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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/25/2005 3:16 PM (GMT -7)   
I was thinking today...is it possible for her to have a "at the home teacher"? for a while?? When my best friend broke her leg our sophomore year in high school, she had the teacher come to the house a few days a week for a few hours so that she wouldn't get left back a grade.
Jay4, have you any idea if her school offers this? or perhaps they're too young for it? I'm not sure if it's just a high school or grammer school offering, not sure for kindergarten.
My friend had to stay lying down most of the day, but was able to continue school.
Are there social workers for the school? There has to be some committe in the county school system that can definitely help you out...to at least devise a curriculum to pass her along without having to leave her schooling.
Perhaps your local congressman or mayor!! Mike Bloomberg in NY developed a program for ONE child with autism because he had no where to go, and the child was abe to go to kindergarten. Belive me, things get paid attention to when ya call in the big guns!!!
I think that's good that the staff is working around her special needs. But I think in the end...your grandaughter will know if she is capable of schooling. Kids want there school so bad, and it takes a lot for them to stay away from their friends....as long as she shows a drive and motivation to still do it, that's all that matters.
I pray things get a little better so a decision of having to leave school doesn't have to be made at all.
GodBless,
Erin

jay5
Regular Member


Date Joined Mar 2005
Total Posts : 144
   Posted 11/25/2005 10:51 PM (GMT -7)   
I can't thank you all enough for all your support,It means so very much to my family and me.I'm going to help my kids and granddaughter anyway I can,and I talked to gracies mom and Dad and they are going to check to see if she can get some help with the schooling.thanks again,its means alot to me for all your help.God Bless you all.Jay4
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