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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)
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)
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.
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.
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
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
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!
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.
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.
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.
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!
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!
My son is normal walking and active since this morning. He had trouble walking just yesterday.
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