Myositis Community
Recurrent Childhood Myositis
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WELCOME TO THE MYOSITIS COMMUNITY: This Patient-To-Patient Community is for discussions relating to Myositis which is an inflammation of skeletal muscles, which are also called the voluntary muscles. These are the muscles you consciously control that help you move your body. An injury, infection or autoimmune disease can cause myositis.

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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)
Tags: myositis, childhood myositis, recurrent myositis, recurring myositis, worry, child
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15 Comments Post a Comment
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168348_tn?1379360675
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~
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543981_tn?1322217248
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 :-(
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1972289_tn?1325881410
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!
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Avatar_f_tn
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 :)
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Avatar_m_tn
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.
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Avatar_m_tn
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.
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Avatar_m_tn
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.  
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543981_tn?1322217248
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.
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Avatar_m_tn
contact me if you would like to discuss ABCM (myositis) I am in the same situation.
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Avatar_f_tn
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.

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1793142_tn?1315382976
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.
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Avatar_f_tn
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.  
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Avatar_f_tn
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!



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Avatar_f_tn
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?
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9460910_tn?1404683902
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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