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543981 tn?1322213648

Recurrent Childhood Myositis

Hi, I am a rather concerned parent looking for some advice.  December 2010 my then 5 year old son began complaining of "aching legs"...I simply thought he'd been running around in the school yard more than usual and that it was nothing out of the ordinary. This continued for 3-4 days and then that weekend it was his birthday party.  Again he complained about aching legs but this did not stop him from enjoying the play area with his friends.  However, when he woke up the following morning and fell on the floor as he tried to stand up I was very alarmed but again, trying not to over react I pacified him by telling him he probably just had cramps from all of the running around he'd done the day before.  By lunch time however he was completely unable to put any weight at al on either leg and was crying with the pain.  When I palpated his calves he winced and cried out because the pain was so bad.  At this point I sought medical advice and to cut a long story short he was admitted to hospital for antibiotic treatment and observation as his Creatine Kinase levels were elevated enough for the Doctors to be concerned about muscle breakdown causing kidney damage.

My son was left laying in the bed for 3 days with no physical therapy or other treatment other than medication.  Due to my own (all be it limited medical training) I decided to try massage on my sons legs in order to prevent the joints ceasing up and to try to ease up the tightening that had occurred in the muscles.  This was very painful for him but I did see an improvement....and with regular massage and stretching I had him standing by day 2 and walking (short distances) by day 3....enough that the Doctors were happy for him to be discharged home.

My son then had a recurrence of the same symptoms about 4 months ago, following a general cold.....they started exactly as the first time (in both calves)...mild but enough for him to tell me about them.  So I went to the Emergency Department and advised them of what had happened the last time and they tested his Creatine Kinase; the levels at this time were "not high enough to warrant concern" so we were sent home and advised to treat conservatively with Ibuprofen and Paracetamol and I was told to do the same massaging treatment I had done before.

This flare up lasted about 3 days, resolving on it's own, and did not get as bad as the first time.

My worry is that my son was complaining of a sore throat last night and has woken up this morning with the sore throat plus bi-lateral calf pain.  I have palpated both calves and the pain is in the same place as the last 2 attacks.  Although he can still walk at present he is not as steady as usual so I called my local Doctor for advice.  I was advised to treat at home conservatively (again) and see if things get worse in the next 12-24 hours.  If so, I am to take him to the Emergency Department again for blood tests.

Since my sons first attack of myositis I have spoken to numerous people about it and none had ever heard of it it's so rare.  What I am now wondering though is, if it is such a rare thing (especially rare for it to be recurring in the same place in the same child) then why?

Could there be some underlying immune issue I am unaware of?

I understand from the research I have done that there are some "childhood diseases" that can cause it to flare up but I cannot pin this down to anything like that....yes my son has had Chicken Pox and Scarlet Fever (both at the same time) but these illnesses were not in the same time frame as the myositis attacks, nor were they even within a few weeks/months of one another.

I am very concerned that this is going to happen every time he picks up a virus...and if it does, is it doing any possibly lasting damage to the muscles or nerves in his calves?

Any advice would be most appreciated as at this point I can not seem to get any answers from anyone, other than it's quite rare.

Thanks,

Lisa (mum to amazing 6 year old boy)
28 Responses
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Avatar universal
Has anyone been able to find the reason behind these recurring infection induced myositis?
Helpful - 0
1 Comments
My daughter is having this issue as well...in April 2016 she had a high fever followed 2 days later by the severe pain in her legs.  Pediatrician ordered lab work which showed elevated CPK.  We were simply told to push fluids and symptoms resolved within 24 hours.  Earlier this week she had a high fever (104.4) but no other symptoms of flu...she was eating, drinking & active. Today, 3 days later, she woke up unable to bear weight on her legs.  Pediatrician again ordered labs to check CPK as well as labs to check renal function and I'm waiting for the results.
I am also extremely concerned about the recurrence as this seems so rare and the only answer we've received so far is that it "should resolve on its own within a few days".  Does anyone have further information or have you been referred to a specialist?  
Avatar universal
I have a son who is also having the same issue. His episodes of myositis are recurring for the third time this year and each time it has followed after an episode of fever and cold.
I am afraid as it it's going to recur every time after an infection it could make some permanent damage to his calf muscles
Any help on this please ,??
Helpful - 0
1 Comments
My son too has this same recurrence after he has a fever or infection. Both of his calves hurt so badly that he can not stand up for a day or so. Doctors haven't seemed to be very concerned. Should I be?
Avatar universal
My grandson that lives with me woke one morning and was unable to walk (3 yrs ago) , I took him to the hospital and after blood tests , confirmed it was Myositis and admitted him and he also developed influenza B , for 6 days he was unable to walk and extremely ill.
This week he came down with a virus and started complaining and crying that his legs were aching and sore again, just like before.
It seems that each time he gets ill the myositis returns to some form, however trying to convince a doctor is almost impossible.
The first time he couldn't walk they tried saying that it was just a behavioural issue and he just wanted  attention and I had to demand to see the head paediatrician before they would even do a blood test and that's when it showed "Myositis". So sometimes it pays to really stand your ground with some of these idiot doctors and demand more, as they don't know the child as well as we do.
Helpful - 0
Avatar universal
My grandson that lives with me woke one morning and was unable to walk (3 yrs ago) , I took him to the hospital and after blood tests , confirmed it was Myositis and admitted him and he also developed influenza B , for 6 days he was unable to walk and extremely ill.
This week he came down with a virus and started complaining and crying that his legs were aching and sore again, just like before.
It seems that each time he gets ill the myositis returns to some form, however trying to convince a doctor is almost impossible.
The first time he couldn't walk they tried saying that it was just a behavioural issue and he just wanted  attention and I had to demand to see the head paediatrician before they would even do a blood test and that's when it showed "Myositis". So sometimes it pays to really stand your ground with some of these idiot doctors and demand more, as they don't know the child as well as we do.
Helpful - 0
Avatar universal
hello sai, how is your son now?
Helpful - 0
Avatar universal
HI Enigma,

I read your comments and others, reading all this all i am lot worried.
But before i tell about myself want to know as to how your son is doing?
I new to this group.

I too have a son he is 5.5 years old he has always been energetic & fun loving, always on a run.
It was on last Saturday he had a fever and lasted for 3 days he was normal after that,after that he was fine rather he went to his school and on same day at night again he had fever, and was complaining about his legs and was not able to move them.
In our family no one every had such a situation and neither my son had ever raised a concern on his calf pain.
But yes from last 8-9  month he was complaining about hand and legs getting pain but not on this calf muscles.
That time also I consulted my family pediatrician doctor, according to him these are growing pains, we started giving him calcium syrup.
As long as I was giving me the syrup he never complained about the pain.

But it was after he had the fever he complained about the joint pain & was not able to walk, me & my wife are both very concerned about his health.
After the Diagnosis it was detected as "Viral Myositis" ,its initial report showed its CPK more than 1000 , no special medication was given but yes after 48 hours he was started walking and his CPK came down to 400 and his Red & White cell count was back to normal.
Me & my wife bit worried as to what is the solution of it, reading the above articles he are more concerned about it.
Has any body have solution to this problem.

1. Can anybody tell me under which condition this happens?
2. Are you giving any special medication or Physical exercises.
3. Any doctor that can help it?
4. While this remains for life time?
5. What worse it can do?
6. Will every time if he has a fever or cold this situation will arise.

Please Please ! let us know if any one has a remedy to it.

Sai.
Helpful - 0
Avatar universal
HI Enigma,

I read your comments and others, reading all this all i am lot worried.
But before i tell about myself want to know as to how your son is doing?
I new to this group.

I too have a son he is 5.5 years old he has always been energetic & fun loving, always on a run.
It was on last Saturday he had a fever and lasted for 3 days he was normal after that,after that he was fine rather he went to his school and on same day at night again he had fever, and was complaining about his legs and was not able to move them.
In our family no one every had such a situation and neither my son had ever raised a concern on his calf pain.
But yes from last 8-9  month he was complaining about hand and legs getting pain but not on this calf muscles.
That time also I consulted my family pediatrician doctor, according to him these are growing pains, we started giving him calcium syrup.
As long as I was giving me the syrup he never complained about the pain.

But it was after he had the fever he complained about the joint pain & was not able to walk, me & my wife are both very concerned about his health.
After the Diagnosis it was detected as "Viral Myositis" ,its initial report showed its CPK more than 1000 , no special medication was given but yes after 48 hours he was started walking and his CPK came down to 400 and his Red & White cell count was back to normal.
Me & my wife bit worried as to what is the solution of it, reading the above articles he are more concerned about it.
Has any body have solution to this problem.

1. Can anybody tell me under which condition this happens?
2. Are you giving any special medication or Physical exercises.
3. Any doctor that can help it?
4. While this remains for life time?
5. What worse it can do?
6. Will every time if he has a fever or cold this situation will arise.

Please Please ! let us know if any one has a remedy to it.

Sai.
Helpful - 0
Avatar universal
Hi Mindycaub,

How is your child? I took my son to the Cleveland Clinic last night after what we think is a 5th viral myocitis. His CK was slightly elevated and he also was getting over a fever, had a rash on his arms, runny nose, etc.

I am curious to hear how New Orleans was. I am currently trying to find a pediatric rheum that specializes in myocitis.

Christy
Helpful - 0
Avatar universal
Hi, my daughter who is 10 came down with influenza B last week.  She started out with a cough and fever and the fever lasted for three full days which I thought was odd because her fever usually just last for 24 hours.  Anyway, the morning after her fever broke she woke up with achy calves but she could still walk.  By evening she was in a lot of pain and I gave her ibuprofen and I did push the fluids.  At 4 a.m. she had to go to the bathroom and she was in so much pain she had to crawl and by then we were very alarmed.  We took her to the doctor and the doctor said that she had seen 4 cases of this within the past 6 months.  Her ck level was at 1360 and then went high to 1996 and then this past Mon. she got retested and it went down to 166.  They said it is mildly elevated and they see no more need for testing.  I'm still a little concerned though and wondering about seeing a natural doctor maybe it's related to allergies or maybe she is gluten intolerant. She does have a high sensitivity to dairy.  Anyway, has anyone done any follow ups with their child, if so, what did the results reveal?  Thanks so much!
Helpful - 0
Avatar universal
Hi all,
My son is 5 years old and we are on our second bout of myositis within 14 months. Both times he was hospitalized. Thankfully our pedi has experience with it and knew with our first experience what it was.

Both times it has followed a severe viral infection. Our pedi is perplexed that he has it again as he doesn't know of any other children who have had it recur.

We are being referred to a rheumatologist in new Orleans for further testing. All of your posts have been super helpful.

To those whose Dr's have not acted, always request a CK blood test (creatine kinase ). One of the most helpful things is IV fluids to flush the excess myoglobin out of the system and keep the kidneys from shutting down.

This is still not readily understood nor studied.

Hang in there!  We're all in it together.
Helpful - 0
1 Comments
I didn’t get a chance to read all of the previous comments but you definitely need to get a muscle biopsy. I had this done to show that I do have myositis and yes it is very very rare. The treatment for this would be something like steroids since it is an auto immune disease where drugs that shut down your immune the immune system are given.
7592732 tn?1407252265
Hi amylw5,
just saw your post, sorry to hear about your daughter.  The red purple rash can be related to several auto immune disorders, not just lupus.  About the myositis, there is no underlying cause, it is a rare auto immune disease, much like lupus.  As a matter of fact, many that have myositis will develop lupus.  curious as to the test that was done on your daughter.  Most children with either Dermatomyositis or Polymyositis can not be diagnosed with lab work alone.  MRI's are needed, EMG's and or muscle biopsy.  My daughter was finally diagnose from the muscle biopsy, the site was located from the EMG test.  

I know the prednisone has a lot of side affects but it does save lives. Prednisone isn't the only med., all that I know of are also on chemotherapy and other meds.  My daughter was.  

You may want to get a second opinion from the Childrens Hospital in Cincinnati, I know several families who's children are treated there for JDM. (Juvenile Dermatomyositis)

hope all goes well and you get answers!

Helpful - 0
Avatar universal
My son is normal walking and active since this morning. He had trouble walking just yesterday.
Helpful - 0
Avatar universal
Hello,

My 9 year old son, early 2005 born, has gone through similar episodes at ages 5, 7 and as recently as yesterday again. First time it happened right after he was coming out of flu like illness and, we were really in shock and we even doubted ourselves if we missed any important vaccines such as polio :) He was not even able to stand and was having hard time to take a step. We had called up our pediatrician before going to ER. Pediatrician consulted her circle of experts and after tests confirmed it as Benign Acute Myositis. We spent a day in ER just to observe his recovery and CK levels etc. No antibiotics, just tylenol and Iboprofene helped him deal with pain and next day he was was walking normal again. Second time at age 7 when it repeated, once again after flu, we were little worried about recurrence but waited it out to pass on its own. As we had hoped it lasted for couple of days only but docs told us the recurrence is very rare.

Yesterday  it happened again and I thought of checking if anyone else has recurrences and found your experience. Bit relieved to know we are not alone but, concerned about repeats. We have not taken my son to doc yet and hoping that it would pass by end of today. I'll post an update.

Cheers
Helpful - 0
1 Comments
My son, born 2003 has had four episodes of "myositis".  Each time he has a flu like illness accompanied with fever it occurs.  He has pain in his calves until he cannot walk; and, his CK levels are elevated.  We are awaiting test results for CACNA1S gene mutation.  The doctor at the Neoromuscular Disease and Disorder Clinic has now determined that another boy with the exact same episodes has this gene mutation.
9460910 tn?1404680302
I live in a small town called Tazewell, approx an hour north of Knoxville TN. We have an appointment with a Rheumatoid specialist in Nashville TN at Vanderbuilt. My issue is the fact that his Doctor has done all kinds of blood work to check for JM. He suspects JM because a lot of my son's symptoms mirror the symptoms of the Doctors own daughter, who died from JM. I guess what I'm trying to say is, I want to know but I don't want to know. However, this all started after a tonsillectomy when he was 3 year old. He came to me and said " my heat beeps funny" we told his Pediatrician  and he was referred to a cardiologist. We began to notice the palpitations seemed to be accompanied a fever. She examined him and done a lot of test, and said his heart was fine, but his Blood pressure is high. She also stated that according to his records his BP had been running high for a while. He began passing out and becoming very fatigue around age 4 1/2, and the Cardiologist saw him again. She ordered a stress test and my son couldn't complete the test ( he got too tired ). the Cardiologist still insisted his heart was fine but it was abnormal for a child to get tired that fast. She later gave another stress test and he couldn't go as far as the previous test. She referred him to Neurologist, and they couldn't find anything. by age 7, along with the chest pains, heart palpitations, fatigue, and syncope, he began having extreme pain in his neck, arms, hands, back and legs, that were accompanied with migraines. By age 7 1/2 his joints began to swell, and looked red, and were hot to touch (at times). By age 8, he started having problems with chewing and swallowing food, because of pain ( this is also about the time the red rash began to appear on his cheeks). His frequent fevers have been present since we first noticed them, but his blood work is often, but not always, fine ( no abnormal WBC) We can't remember when we noticed, but his hands are always in a fist position, and he can't coordinate his fingers to tie his shoes.
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Avatar universal
Hi , my daughter has the same issue that we have been very frustrated with for the last two years. She is fine one day and then wakes up in such severe pain and will not walk at all for days on end and then it will eventually start to get better. Some of these episodes have also been accompanied by a reddish purple rash on her face around her eyes and nose. It almost looks like burns and is the typical rash accompanied by lupus. We have seen every specialist at Childrens Hospital from infectious disease , to rheumatology , to specialist in the hemotology and oncology dept and all have told us that she does not have lupus yet she still keeps getting these episodes. They prescribe prednisone but i try to use it sparingly as I am not a big fan of it and it has bad side effects. They have said that she has myositis but dont know the underlying cause. It seems clear to me but i cant seem to get a diagnosis from the doctors. It is so hard to see your healthy daughter wake up in such pain and not walk for days and yet the doctors dont seem to know what to do. Just curious if any of the other children with this have an extremely low white blood count also? Has anyone else had any luck with other specialty doctors and a medicine that will help this?
Helpful - 0
7592732 tn?1407252265
AUGGGGGG! So frustrating!  All these post sound like JM, Juvenile Myositis, a rare auto immune disease, which attack the muscle cells, causing severe weakness, this is CORE WEAKNESS, not so much hands, gripping, this type, but neck, shoulders, legs, hips.  Climbing stairs almost impossible, getting up from a seating position without help also almost impossible.  CK elevation should be a red flag for these Drs, but doesn't sound like they are fully aware of this disease.  I know most Drs have never heard of it. We went through many physicians, specialist, till we finally got a diagnoses, unfortunately the meds are many and strong.  Your child should be in the hospital when they start them.  If you feel you are getting a run around from your child's provider, then it's up to you to speak up and find one the will listen, and not tell you just to alternate with Tylenol /ibuprofen, and that they have NO advise for you!?!?  First thing.......never take "no advise for you " or "I don't know"   We received these answers too!  That doesn't work!   I pray this is not the disease,  but in the previous post Myositis was said to be the diagnosis.  

I hope to hear from you soon, I am very interested in how your children are doing and if you have received the proper help.
Best wishes to you both!



Helpful - 0
Avatar universal
I am having the same problem here. My 5 yr old gets this every time he has a cold. Last year he had the flu and they almost did a tap (withdraw fluid from his hip with a huge needle) to see if the fluid he had in his hip was the cause of it. When we went in for ultrasound the doc that was going to do the tap said that he wouldn't because he didn't think it was his hip causing the pain...that ER doc was ignorant. It ended up being the flu and therefore we still didn't have any answers. They sent us home with the instructions to alternate between tylenol and ibu. I finally got in with his regular doctor and she did blood tests and said his CK level was extremely high. At that point he was getting better so we just kept with the alternating tylenol and ibu. He gets this so often I wonder if this is causing any lasting damage. I am really concerned that there is an underlying problem that is making him susceptible to this. Any thoughts...I am desperate.  
Helpful - 0
1793142 tn?1315379376
I know your post was 2 years ago but I was wondering how your son was and if you have any answers?  My son has been diagnosed with fibromyositis(fibromyalgia) since he was 7 and This is how it started, except it never went away.  His pain and weakness has waxed and waned over the last 4 years and it has now spread to most of his body.  His diagnosis was made easier because I have many health issues but started with fibromyalgia in the same way (legs seized up and I fell in pain while jogging).   My son has much help from cymbalta.  He says he still has the pain, but he not as weak and is able to ride bikes and run for short periods of time.

Hope you and your son are doing well.
Helpful - 0
Avatar universal
Hi, my five year old woke up this morning crying and saying he calfs were hurting him and he couldn't walk. I took him to the doc and they said he has myositis. He had 3 days of fever which finally broke yesterday morning. Pediatrician explained his leg pains are similar to sore muscles during a flu. She made my son hop on each leg, tickled the bottom of his feet to test for sensitivity, and also asks for any other muscle pain. She then advised that the pain should go away in 5 or 6 days. She said blood work was not necessary because his condition at this time doesn't require it.

My husband and I are not so sure. He's never had this kind of pain with all his other fevers in the past. We did some research online and I feel quite worry due to the characters of myositis. The autoimmune part sounds scary to us. We are hoping his leg pain will go away in a few days.

Helpful - 0
Avatar universal
contact me if you would like to discuss ABCM (myositis) I am in the same situation.
***@****
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2 Comments
Help!  I am dealing with this after bouts with Strep throat.  This is the 2nd time this has occured with my 4 year old.  The doctors have no reassuring information.  Just send us home with an anibiotic and tell us to give him tylenol.  His CPK levels were in the normal range.  Any advise or info?
Help!  I am dealing with this after bouts with Strep throat.  This is the 2nd time this has occured with my 4 year old.  The doctors have no reassuring information.  Just send us home with an anibiotic and tell us to give him tylenol.  His CPK levels were in the normal range.  Any advise or info?
543981 tn?1322213648
No, as I said previously we have not yet been given any advice as to if this will be an on-going thing or if it was just a random thing.  I have to say however that I keep a very close eye on him and at the slightest hint of a fever I ensure I deal with it asap or get him to the Dr's for antibiotics to hopefully avoid any repeats.
Helpful - 0
Avatar universal
I just posted to enigma about my daughter...you can read below....have you heard anything else?  I too am scared this will be a more chronic issue and don't know if I should take her in to see someone else?  It has happened about 3 months prior with her not being able to walk on only her right leg.  If you know of anything, I would like to hear from you also.  
Helpful - 0
Avatar universal
I just came upon your post and my daughter was diagnosed with this just yesterday.  They too told me to give her ibuprofen, even when she is better, 3 times a day. (which to me was weird) I live in a small town, so am debating on if I should take her to a bigger hospital?  Google was kind of scaring me as it could get worse!  Have you heard anything more?  If so, I would love to hear from you.
Helpful - 0
Avatar universal
I just came upon your post and my daughter was diagnosed with this just yesterday.  They too told me to give her ibuprofen, even when she is better, 3 times a day. (which to me was weird) I live in a small town, so am debating on if I should take her to a bigger hospital?  Google was kind of scaring me as it could get worse!  Have you heard anything more?  If so, I would love to hear from you.
Helpful - 0
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