HELP for jess, PLEASE!

[susiestar]

I need your wisdom and ideas. Jessie is scaring me. NOT on purpose, and she can't help it.

She started out on Wed with muscle spasms in ehr legs. NOT uncommon, but she was back to using her hands braced against her things to keep from falling. With her hands braced she stays upright, otherwise her legs give out somehow.

By Wed night I gave her half of one of my stronger muscle relaxers. She has an rx for a weaker one, but it was not helping. She HAS been rx'd these muscle relaxers I take, and rx'd a whole one with the medications she has now. I gave her half to see if that would help. It let her get some sleep, but seh woke up with the spasms (they woke her up in pain).

Thurs am the spasms were in her legs, back, arms, chest, simply everywhere. The muscles will VISIBLY spasm, they get so tight and painful it is incredible. They feel like rocks.

I called the neurologist yesterday and when I didn't hear back called the pediatrician in late afternoon.

Today she was no better. The pediatrician FINALLY called late this afternoon and said to call the neuro. Will not recommend anything.

The neuro never called (my one gripe about this doctor is that his staff can take up to a WEEK to get back to you if they don't think it is urgent.) and so I am here, on fri evening, with a kid in pain and no clue as to what to do.

The spasms don't hit at regular intervals, and by now the muscles never totally relax. Her back is especially bad.

Does ANYONE have ANY experience with anything similar, or any ideas what to do for this?

We have tried flexall, biofreeze, capsaicin, hot packs, and cold packs. The hot packs help best. Keeping warm helps (I keep telling her to put on long pants and a long sleeve shirt or sweatshirt. But when she goes to lay down she is uncomfortable in pants so she takes them off and then gets cold.)

anyway, I am open to pretty much ANYTHING. If it is worse tomorrow I am paging the neuro (there is a steep fee for this because so many people do it for minor things, but it will be worth it if it helps.)

 

[Jena]

Hi

I'm sorry to hear Jess is still in pain. It's a bit crazy now. I know you have probably already tried this, yet have you brought her to a chiropractor yet??

 

[klmno]

Wow, I have had this before although mine might have been milder than what she is experiencing. The dr told me to just take motrin, but take 2 instead of one. He said that the prescription dose would be the same as doubling the otc dose. (I'm not suggesting you do that with Jess- this is just what I was told). Then he said to lay down, straight, and not give into urges to move certain ways or to put heat on it. He said I just needed to relax everything and be still. Actually, this is the same that I was told for a strained muscle.

It didn't sound like very useful advice, but it did help.

 

[mrscatinthehat]

Has she tried stretching. I know it might not be easy when in pain but has she tried to see if any stretching will help. Next is she dehydrated. Or is she lacking in calcium. Have they checked her thyroid. Or her kidneys. I know I am just throwing things out there but at this point figur it can't hurt. Is it a reaction to some other medication she is on. I am trying to think or find some other ways that might help relieve this at least temporarily to get through the weekend.

beth

 

[Andy]

If you take her to ER, would they contact the neuro for you?

Then, next time, call every 1 1/2 - 2 hours. Bug them and tell the nurse that she is in extreme pain and can not wait a week for an answer.

 

[Jena]

Try this site i found,

http://stanford.wellsphere.com/wellpage/Body-spasms

 

[susiestar]

Thanks so much. When we get into the doctor I will ask about those things Beth. I know she is not dehydrated. Here in OK you learn young about how important water is. She is drinking quite a lot, as usual.

I don't know if her regular medications could be causing this. It is not the first time it has happened, but no one has ever given us any answers.

Our ER will give her benadryl and tell us she is fine. That is SOP there for most anything. We would be lucky if they hung a bag of fluids. But if it doesn't get better we will go there or to the urgent care clinic.

We have rx strength aleve for her. And are keeping her on regular doses, as well as having her listen to meditation and relaxation tapes while laying flat or while I massage her. But it isn't helping.

Jen, I am off to that website, thanks!

 

[Abbey]

I'd be in the ER by this time. Figure it out or I'm not leaving.

Abbey

 

[Marcie Mac]

Does she take magnesium? Its a muscle relaxant - SO used to cramp up really bad and it was a lack of magnesium that caused it. They also use it on him in the ER via IV when he has a bad attack - his throat spasims and it brings him out of it in a minute.

You may want to call the pharmacy first to see if any medication reaction before you give it to her..

Marcie.

 

[flutterbee]

Have her electrolytes checked and a pulsating, warm shower is all that helped me. The muscle relaxers do nothing except make me sleep.

 

[nvts]

I remember once hearing that some medications deplete your potassium levels which causes severe muscle cramps.

I'd try the ER or a banana and hot shower.

Sorry the poor thing's feeling so terrible!

Beth

 

[Hound dog]

Susie sweetie, get that child to the ER asap. I don't say it lightly. Something is terribly wrong when her muscles all over are visibly spasming.

This is what I would do :

Take her to the ER immediately.

Give them the full history, and I mean everything and every medication within the last month or two.

Don't let them send you anywhere until they've done a FULL blood work up, most especially for electrolites and mineral deficiencies.

Do not let them slack off on the mineral deficiency one, as while it sounds minor it can cause lethal reactions in the body.

Ask them to check her creatinine levels and calcium levels while they're at it.

Do not leave until both the family/pediatrician doctor and neuro have been notified of her condition. They can think of way more tests than I can after having my nose in a book while watching a 2 year old.

Susie, I'm not trying to scare you to death. But spasms like that are no minor matter. Jess needs checked now. Not when it's convient for the docs.

(((hugs)))

 

[susiestar]

We will go to the doctor in the am. She is finally sleeping and I really don't want to wake her up.

I think you guys are right. I just live with muscle spasms all over my body and I didn't think of them being that serious.

We did the bananas. It didn't work. I don't have magnesium, but will get that to try also.

Thank you all so much. I will keep updating as we progress through this.


Did I mention I HATE having her go through this? I would go through 10 times what I am now if this would just go AWAY!

 

[flutterbee]

Susie, I live with them, too - mostly in my back. But, when my electrolytes were off a couple months ago, I was getting them all over like you described with Jess. Bulges that you could actually see and they were hard as a rock. The only thing that would relax them was putting the shower head, pulsating, right against them.

I called my doctor and told her and she called in a muscle relaxant, which didn't help me. But, it was like a week later when I told them that you could actually see them - that they were bulging - and they were surprised. I thought that was understood, but until I said, "It looks like I have 2 rows of boobs" they didn't understand. They hear muscle spasms and think a little discomfort.

I hope you are able to figure out what's going on and that Jess feels better soon.

 

[Hound dog]

Susie

Don't give any vitimens or minerals until those blood tests are back. You want those tests to be accurate and if you're giving them to her over the counter they're not going to be.

Next time it starts......go straight to the ER.

Hugs

 

[totoro]

I didn't see an update? How is she feeling today? I hope you guys can figure this out soon!
Huge hugs

 

[Star*]

Susie -

WHAT IS GOING ON WITH MY JESS????? OMG - please update......

I hate to guess- but it sounds like some mineral or vitamin deficiency. ???????

Hang in there Jess
Hugs & Love
Auntie Star

 

[SearchingForRainbows]

Susie,

Thinking of Jess this afternoon. How is she? Were you able to get anything to help her at the ER? I know this is a tough day for you - Update when you can.

Hugs, WFEN

 

[susiestar]

Jess is a bit better today. She is trying to move around more, and she is stretching to help loosen things up. Since she was better today we haven't headed to the ER, mostly because our ER is SO BAD. Most all we would get would be chart notes that she had muscle spasms.

and benadryl.

Cause they truly think that fixes EVERYTHING - I am so not joking. (I just got the records of when I had the seizure and that was the first think they gave me. There is NO reason why they would give a patient in that state benadryl. It was clearly not an allergic reaction., but anyway, I ahve NO faith in them.)

If she gets bad again I will page the neuro and if needed head into the city 1 1/2 hours away and go to an ER there. Just because our ER won't help at all.

The pediatrician said flat out they won't do anything for her. They did strongly suggest I take her to a therapist. NOT a physical or occupational therapist, but a social worker or psychologist type therapist.

she has one. We like her. But she can't do ANYTHING with muscle spasms. She was mystified that anyone would suggest it.

Jess is wanting fruit and veggies, and we are letting her eat what she wants of htem. She is also drinking a LOT of water, so if any lactic acid is released from the spasmed muscles it won't make things worse.

I am sticking with fruit and veggies, and not giving her magnesium or anything. They can mess with the epilepsy, well, some supplements can. I don't know which ones, so I will wait for hte neuro.

Thank you all. I really appreciate you. and I am NOT ignoring your advice about the ER. I am just hoping to get someone who will give us answers, and our ER isn't that. (Plus I am having some flu bug again, or an IBS flare, and can't get too far from the bathroom.)

Hugs to ALL of you!

 

[nvts]

Hi Susie! I'm sorry if I'm being a dork, but what I did was search symptoms on less frequently diagnosis'd illnesses (looking for the zebra if you will). Here are two that caught my eye:

Myotonic Dystrophy: muscle spasms or stiffening after use, hand weakness, foot drop etc. Might be worth contacting the Muscular Dystrophy Assn. about.


or, believe it or not:

Tetanus! Did you know that the symptoms can show up months and months after the cut, scratch or injury. I'd take a look at WebMd and see if there might be some sort of information available. So many of her symptoms seem to fit!

Hope she's feeling better!

Beth