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)

[AllRwell]

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

[arbro27]

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.

[kcarroll42]

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.

[amylw5]

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?

[5daughters]

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!

[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.  

[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.