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)

[ChitChatNine]

Hi

I happened upon your post and wanted to say hello and was wondering if you have found any answers for your son?

Happy Holidays,

C~

[Enigma279]

Hi, no as yet we are still in the dark.  I am basically a neurotic mess especially at this time of year with the cough and cold season upon us.  I'm literally checking his every sniffle in fear that he'll have a flare up again :-(

[garrettandelsasmom]

Ugh - that is so hard! I'm sorry you're having to go through that.  I'm not very familiar with this issue but just noticed this and wanted to send my well wishes!

[naz721]

My son had a Myositis incident last year when he was 2 years old.  He had a fever, cough, runny nose and he couldnt put any pressure on his feet, he couldnt walk at all.  This was so diffucult for us to see our son this way becasue he is SUPER ACTIVE.  We took him to the doctors and they had advised to give him Tylenol and sent us back home.  Just before bed time he was walking again!!!!

Just yesterday he had a runny nose and cough, and then again he couldnt walk or put any pressure on his feet.  He is now 3 years old.  Again he started walking before bed time.

I am also really concerened.  Will this be a chronic condiction?  Is this a genetic disorder?  Autoimmune disease?  Will this lead to disability?

My son is currently seeing a specialist, we have another appointment in a few days with all his test results in.

I'll let you know what happens.

Best of luck to you & your Son :)

[mustangmom]

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.

[mustangmom]

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.

[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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[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.