SCARED for Jessie

[susiestar]

I have been calling the local PT places on our insurance on a DAILY basis. I went to one and the person who could schedule me was "out" for the day, so I couldn't make an appointment.

I have been trying for WEEKS to get Jessie seen for PT for her muscle spasm. They are getting worse.

Has anyone had or heard of spasms that come in waves or roll over the body? Her back and thighs get these terribly strong spasms that are not only painful but visible to the eye - sometimes even THROUGH her clothing! Of course they can always be felt. It is the strangest thing to have the muscle underneath your hand get hard in almost a rhythmic way.

The neuro says it isn't related to neuro stuff.

The pediatrician says see a PT first.

The ortho says see a PT first.

The insurance says see 1 of these 3 practices - 1 is closed, 1 only sees patients after they see the docs in that practice, and the other one won't return a phone call or let me make an appointment.

We took her to Sams with us thinking that an outing would help her spirits and she hadn't been (and it is kinda fun). She used one of the motorized carts because she could barely get into the store.

She was a real trooper, esp when I wouldn't let her buy $20 worth of candy bars (but it is MY money!!! Yes, but it is MY Sams card dearie. Can you see the HUGe eyeroll? I thought they were coming out and going to roll around on the concrete floor!))

But last night was TERRIBLE. She was in agony. It is the first time in a long, long, long time she has just wanted to be held by me while she tried to cope. Usually she wants to be alone. It was so hard to hold her and feel the muscles go into spasm, relax just a little bit, and spasm again harderr - over and over constantly.

I am going to have to make calls for PT in Tulsa, hoping SOMEONE can get us in soon. It has been 2 MONTHS that I have been trying to get an appointment here for her.

 

[Kjs]

What if you took her to the ER due to extreme pain. Here they give us a list of doctors and say we must follow up within so many days. Would that work for you?

What about soaking in epsom salt, or a whirlpool, Ben-gay, heating pad? Does anything help? Muscle relaxers? Maybe even just swimming/ hanging out in a pool. Would it make it easier for her to move around? A warm pool?

Hope she feels better.

 

[Wiped Out]

Sounds incredibly painful. I hope you are able to find a pt very soon. I'm sorry your choices are so limited. Do hot baths help at all? The reason I suggest this is one time after doing some incredibly stupid fast pace walking I got horrible spasms in my shins. The only thing that could stop the spasms was soaking in hot water.

I have actually been keeping Jessie in my daily prayers due to her health issues. I will now be praying that a pt is found quickly and she gets major relief!

 

[trinityroyal]

Susie, I'm so sorry that Jessie is going through so much pain.
Saying prayers that you find a pt soon, and sending healing thoughts Jessie's way.

Trinity

 

[Andy]

Maybe a wacky idea - if you have a chiropractor you normally go to, you can call that office just to ask if this is something they might be able to help with?

The one I see has some type of massage machine so when my neck/back gets really bad. It has been a long time since I have used one but know there were two types that I could choose from.

A call won't hurt anything just to see what they say.

 

[ML]

This is not right. Our Jesse should not be allowed to be in this much pain. I am praying that someone will see her soon and come up with a plan, something, anything to help her. I'm so sorry she is going through this, and mom too. Big hugs xoxoxo ML

 

[Josie]

Would one of the doctors that recommended PT be able to call and get her in more quickly? Or at least a call back?

Magnesium is supposed to help with muscle twitches. You could research this and see if it is worth trying.

I think you are doing the right thing in calling PT's in other cities to get help.

I hope you can get an appointment and some answers soon.

 

[mrscatinthehat]

The poor thing. She has been going through this stuff so long. Sending good thoughts that one of the pt's gets off their duffs and gets things moving so she can get some relief.

hugs
beth

 

[Hound dog]

Holy smokes Susie, that's pretty darn serious!

I'll tell you what I'd do if it were my kid......

1. Get a 2nd opinion (3 or 4) if necessary from another neuro. Doesn't sound like this guy has ever seen such a thing before.......BUT that doesn't necessarily make it not neuro related. Just means HE hasn't seen it before.

2. Get her in to fam doctor asap. I'd have a tantrum until someone did blood tests to check her blood calcium and potassium levels. Those are what causes muscles to contract and relax. If fam doctor won't see her.......Get thee to another fam doctor who will.

This could potentially get serious. Ok so are they gonna wait until it starts to effect her smooth muscles (organs) and heart muscle before they figure out what in hades is going on???!!!!

Oh, and has Jess ever had any kidney issues?

Sounds like you're gonna have to go into full blown warrior Mom mode and start yelling and stepping on toes to get someone to sit up and pay attention.

Oh, take some videos if you can of these spasms. Docs are probably listening to you thinking *oh....yeah, mild twitches/spasms, patient doesn't really know what they're saying.....exaggerating the incidents....ect* And docs/medication professions do tend to think that unless you can somehow prove differently. Unless you're lucky enough to find one that can think outside the box, or admit.....Hey, I dunno what this is maybe we need to find out.

Susie, I'm scared for Jessie too. And with all my training/experience I don't scare easily. I'll be praying hard for you both. And wishing I could be there in person to back you up warrior Mom style. I've had to do this so many times with Travis I've got it down to an art form.

(((hugs)))

 

[DammitJanet]

I actually have some experience with this. I get this in a milder form but Cory and Jamie both get back spasms that you can actually see and feel. I always attributed Cory's to the fact that he had major surgery on his back at age 4 so he is just weird but when he gets spasms you can see the muscles bunch up and contract and roll like waves. Up and down his back. We have him take muscle relaxers and use the epsom salts/hydrogen peroxide hot bath soaks.

Jamie hurt his back during his tour in the Marines. It just went out again a couple of weeks ago and he ended up in the ER. Same rolling spasms. They gave him the muscle relaxers and pain medications and I told him to use the soaks.

 

[klmno]

((HUGS)) to you and Jess. She shouldn't have to live with this pain and I hope you can find some relieif for her soon. I wonder if she has an intermittent pinched nerve.

 

[Josie]

I agree with Daisylover. Call around for other opinions.

You might have to go out of network to get someone to really help. We have found the most help from out of network docs because they can afford to spend the time to listen and try to figure things out and they are not bound by insurance agreements. Depending on your plan, you might be able to submit the expenses afterwards and get some of it reimbursed.

I think you need someone who will take this seriously. It doesn't sound like you have found that person yet.

 

[Lothlorien]

What about taking her to a local Children's Hospital ER? That's pretty serious. If she's having total body muscle spasms, it could effect her organs, like her heart.

 

[Star*]

I'm with Daisy -

GET THEE TO ANOTHER FAM DOCTOR!!!!!

NOW......

DRIVE 100 miles and just take her rolling spasmatic body IN somewhere and let a doctor or nurse SEE this.

Hugs for our baby!

 

[rejectedmom]

This might sound like an odd question but it is relavent, Does her hands or feet sweat alot? There is a syndrome where the nerves become over stimulated due to an injury and do not shut off thereby causeing muscle spasms. It often is acompanied by sweaty hands and feet. It is one of the things my PT investigated with my muscle problems.

Also is your drinnking water florinated and/or has she taken Cipro or any chemo type drugs ever? Floride toxicity will cause muscle spasms and other symoptoms that are similar to hypothroidism.

Two other things that should be tested and your GP can order are Magnesium levels and Vitamin D dificiency.

I hope you can get to the bottom of this soon. I know how awful this is for her. I had days I couldn't move the pain was so unbelievable. I had fingers and toes pulled out of alignment and had a muscle rupture and cause a large hemotoma. I never got a diagnosis but am doing better with Magnesium, vitimin D, vitiminB complex and herbal supplements including Valerin root and Ashwagunda. Also I only dring water that is either distilled or filtered by reverse osmosis . Britta and refigerator filters will not remove floride I also now use a nonfloride tootpaste-RM

 

[susiestar]

We have seen three pediatricians in the pediatric practice. We have also been to the Urgent Care Clinic. All they do is give her 20 tylenol 3's to take 1 every 4 hours. So it is not even 6 days worth. And they are a little bit of relief but not much.

We have a chiro I totally trust and he says that chiro won't fix this. She is taking calcium and magnesium supplements per the docs. It hasn't made any difference.

We have well water, non-flouridated, so flouride overdose is not possible. At her age the dentist says that brushing with reg toothpaste is enough flouride, no supplement needed.

I have calls in, it is a very long trip to a children's hospital. We may do it, but I doubt that they will do much. Last time they told us this was because she had been on elavil. Well, it has been many months since she was on elavil, and this just started again. The pain level never went down much, though she is moving a bit better.

I have put her on toradol, the heavy duty nsaid, 1 every 4 hours for 3 days at the doctor's OK, today is her last day. I also have been giving her muscle relaxers. Witht he doctor's OK for 4 days worth. She is taking prilosec for her stomach to prevent the toradol from causing any problems.

I just HATE seeing her hurt.

hot water only helps while she is in it. She gets so cold when she gets out that it ends up being worse. Even with heat on in the house, and I ran the bathroom heater for 30 mins before she got in the shower, she STILL was too cold when she got out of the shower. So we bundled her on the recliner and won't push the hot water treatment much.

I am using capsaicin lotion on her back every 6 hours. THAT seems to make a difference. She puts a rice bag on the area if it stops being "hot" and that re-energizes the stuff, so itis the best we have found.

I just want my little girl fixed. No more broken Jessie.