help for child

[mgfc]

My 7 year old son has a diagnosis of restless leg syndrome.  He was weaned off his meds lately due to possible side effects; however, the symptoms have not gone away and we are now awaiting MRI's and blood work.  He began by telling me he had pain in his feet- tops and bottom and then began complaining of severe pain at the leg joints.  When the pediatrician checked him out, he also reported pain in his legs (NOT JOINTS).  The ped looked up his meds and thought it could be a side effect hence the decision by the nuerologist to wean him off and then re-check.  The pain not only did not go away, but he is now also reporting pain and tingling in his feet and hands and often comes to me saying his hands are shaking.  He is now also complaining that his scalp feels like it is stretching and he is getting headaches on the top and sides of his head (not common headache places).

I would appreciate any thooughts anyone may have.  We are very worried.

[mdhatton]

I totally agree and have been there where Jerzee Java has been.
  They diagnosed my son with restless leg and he has clonus and chronic pain that started in Sep.07. Everything is getting worse also. They are testing him for a bacterial infection that can have these syptoms called Mycoplasma.  We have been told everything and put on all kinds of meds and then I found out this Mycoplasma is common in school kids but some kids with low immune system can not fight it off.  
My sons pain is never calmed by any meds and we have been on big time meds.  Mycoplasma is worth looking up. One thing about it everything my son has been through maybe a bacteria could cause this.
Hope this helps.Maybe your Neurologists would check into this for you. Only test for Mycoplasma show for this problem. All other tests will come up normal. Also only certain antibiotics help.
Good luck.
Good luck

[ggreg]

Dear Mgfc,
I posted a reply to your earlier separate post, about two pages back from this one, maybe something I said in there will help you.
GG

[mgfc]

He was diagnosed through an all night sleep study.  Sounds like we're a bit alike.  i have four children, all with medical and special needs.  As much as I would like to believe this will go away, I've seen too much.  I actually asked his pediatrician if there was anything else he rarely sees in children that he was looking to study because i was sure we could work that in for him.  The nuerologist is definately concerned and she has children and often says, if this was my child, this is what I would do.  Thankfully she would not ignore it.

I appreciate your thoughts and will defiantely take him to ER if we can't get the MRI right away.

Becky

[bugbarb]

jerzeejava made me think of something that I have done, as an adult that may help your son communicate his symptoms and also may be therapeutic emotionally.
I have neuropathic pain.  Pins and needles are not descriptive enough.  Pricklies are part of it. Gremlins are good. I had an electric centipede with spiked feet running around my back for a while.  I am good with words, but I like to doodle.
I have drawn what I feel like, what the pain feels like.
I have drawn individual pictures of each type of pain.  I name them. I give them shape.  
I took an "Art as Therapy" course, upper division college credit.
We used clay, finger paints, had to keep a "doodle journal" where we drew how we felt daily.  I believe he will benefit greatly from  something like this.  When you look at his drawings and ask him questions, you may be able to find out valuable information helpful to a diagnosis!  I will go to my profile and see if I can download the picture of how the pain feels. Check it out.

[JerzeeJava]

You didn’t say how the doctor determined that it was restless leg syndrome. I don’t know if there are test for that and even if there is, do those test definitively rule out any and all other possibilities?  Not a doctor hear but honestly, but there are many causes behind many symptoms and its possible the original diagnose was not accurate It’s also possible that what ever it is, could get worse. Because you really have no way of knowing, you might have more thorough evaluation and faster results in an ER, where they are not inclined to send your child home without knowing the cause-even if it means he is to stay over night.

If you take him, express concern of your child being at home due to the risk of falling down or someway becoming unconscious. I am not suggesting this will happen but the mere possibility is a strong enough concern to warrant admission to a hospital. For all you know, the symptoms could suddenly and rapidly progress and not knowing what it is frightening for you, and your child. It would not be good if this situation rendered itself worse and you were not prepared or able to get fast enough help.

I was never wrong in any of my concerns and when something was not taken seriously enough, something worse happened every time. I am not trying to alarm you, but I have a child with multiple, medical problems (ex-preemie) and I have experienced more than most parents and seen my share of neglect or complacency and outright neglect.
Medical professionals develop tunnel vision or make a diagnosis based on experience…good thing-bad thing. But sometimes they can overlook something because of this and lose sight to other possibilities. It is my opinion from my experience that the medical profession becomes more mechanical & technical while due to restraints placed upon them by the insurance companies. For the sake of compliance, compassion is lost and thus the human factor is forgotten or at the very least, taken for granted.

I have had to make demands that most parents would not be comfortable doing. I’ve never regretted it, but I would have regretted not fighting for my child, who is too young to fight for himself.  Children don’t always know how to express when something is going on. He may have other symptoms that he doesn't realize he has or doesn’t know the words to describe to you (such as tingling, dizziness, confusion) Remember, you may not have MD after your name but you do have M.O.M. and as one of my son’s doctors told me, you have a degree in knowing your child better than anyone and you need to be heard when your child cannot speak up for himself. ). You are your child’s advocate and no one will ever fault you for that. R


If you decide to take your son to the ER and they won't admit him...ask if it was their child would they want him to be sent home….and then if necessary, tell them if something happens to him as a result of being sent home, you will hold them accountable. I guarantee that will work.


It’s not the way we should ave to go about getting what we need for our children but unfortunately we often are left no other way. This is your precious baby and what’s in his best interest if first and foremost.