Recurrent Childhood Myositis

[Enigma279]

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)

[mustangmom]

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.  

[Enigma279]

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.

[tyler333]

contact me if you would like to discuss ABCM (myositis) I am in the same situation.
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[LANA2012]

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?

[LANA2012]

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?

[bb1119]

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.

[21tulips]

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.

[cbajhouston4]

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.