B.A.D. Night - MRI tomorrow

[susiestar]

Last night was the worst one yet. She finally, for maybe the second or third time since this all started in early July, broke down crying. The shaking was just soooo violent and her muscles were soooo sore.

She sat on a chair, not the recliner, and shook so much she shook herself out of the chair. Of course, with the jerking, she couldn't catch herself. Just one more ache and it was the final straw. I finally got to sleep around 7. Then husband woke me up at 8 because he didn't want to open her pill box for her. He wasn't sure if she should be taking her reg medications with the MRI tomorrow.

I called the doctor and found where we are to go for the MRI (I lost the directions - my bad). I got the full run down of events for after the MRI. Looks like the Sam's outing Jessie wants to do is fine if she feels up to it.. We need to go afterwards if we can but we don't need as much as expected. My mom was at Sam's yesterday when I called her to see if one of her friends had grandkids who needed a violin with that deal I found yesterday. Mom got the cold stuff we needed so if Jess isn't up to it tomorrow we can just skip it. That takes a BIG load off of tomorrow.

Please continue to keep good thoughts in your mind and heart for us, esp for Jessie. Through ALL of this she STILL apologizes if she thinks she has snapped at any of us, STILL tries to do chores and schoolwork, and actually THANKED me for staying up all night with her lately, reassuring her, giving her backrubs etc....

I was flabbergasted. It never even occurred to me that I wouldn't do those things. I was surprised by the strength she continues to have.

Jessie is closer to the end of her rope than I have ever seen her. I don't know how much more she can take.

She had a bump on her leg she thought was a zit. Being 14, she looked at it and popped it. There was a BUG inside it. I didn't see it but she is usually right on target when she says things. No reason to think she is wrong. The bump has only been there since Saturday, so it is not a cause for this shaking, but it really upset her. I was upset FOR her and husband was so grossed out he looked like he wanted to hurl.

I made sure it was cleaned out, used peroxide and then put some bactroban on it. Then I went and told husband about it, and about how fragile she is today. He is "on call" to keep her comfortable and keep her sitting down for as much of the day as possible.

If ANYONE has heard of the bug thing, or has any suggestions for us, they are appreciated.

Thanks for listening. And helping.

Susie

 

[Shari]

I am so sorry Jessie continues to struggle. I wish they could find some sort of answer for her. For you all.

No idea on the bug. I've heard of things like that, but only in places like South America, etc, not here. Poor girl.

 

[nvts]

Hey! Has she taken clarinex at all? Take a look at this website:


http://www.drugs.com/sfx/clarinex-side-effects.html

When I did the search I just typed in "parasite reactions uncontrollable shaking" and quite a few sites also had stuff about malaria. Since this started in June could she have been infected by a mosquito?

I think you need to investigate this potential parasitic issue. Stranger things have happened (I watch that show on discovery channel). If something infected her with a teeny-tiny parasite, it could easily take a few months to crop up (grow & travel in the system) and make "bugs" show up under the skin.

This could be a HUGE piece of evidence to see what's going on with Jess.

Beth

 

[ThreeShadows]

Susie, can you describe the bug? Did you keep it?

My father had malaria and his symptoms were not similar.

 

[Star*]

The bug is HUGELY significant - have her draw/sketch it.

Hugs....

 

[susiestar]

I agree that this may play a role, but I have a STRONG feeling getting a doctor to help is going to be difficult.

Here in OK it is not terribly uncommon for a tick to do this. We have ticks like the rest of the country sprayed a tick aphrodisiac by crop duster around here. I have had several ticks do this, esp if the jaws/mouth break off with-o releasing. The body just reacts to it like it is a foreign body and the sore is the normal reaction to something like that.

I have a call in to an entomologist I know (The blessings of an adopted Gpa who was a statistics guru and did ALL kinds of research with the bug dudes!) and he will call when he gets a chance. He will know, or will find out before he calls, if there are any similar reactions to an insect that would cause her symptoms.

I would be a lot more worried if I hadn't had this happen myself. Sadly, unless I can find concrete evidence that it caused something, the docs are going to take that symptom and say I am just searching for something to be wrong with her. been there done that with strange symptoms with Wiz and myself.

But I won't forget this, will get her to draw the bug and will search to see if I can find ANY sign that the bug could be related to her symptoms. I am NOT discounting it, but from experience the docs will use it to say it is just a one more sign that Mom is a hypochondriac. Docs did that with Wiz as a toddler when I KNEW something was wrong, and with me when my own health spiraled out of control. I had to MOVE to get a doctor to really LOOK at Wiz and not write his differences off to "mom wants attention". I cannot risk them discounting the severity of Jessie's symptoms and writing this all off as my imagination.

She has not ever taken clarinex. The only allergy medication she will take is benadryl - and that only rarely. She often prefers to just let it run its' course unless it is very very severe.

Thanks for ideas and thoughts and everything else. I AM keeping a log off all of this so that if I find any correlations I can use them to get help for her. but our docs like to grab onto one symptom that they feel is attention seeking or unrealistic and use it as "evidence" that a parent is looking for drama. I cannot take that risk with as debilitating as this problem is for Jessie. I will stick with the entomologists searching for bugs that can do all of this and let the docs focus on the doctoring - THEY will NOT see a connection. GRRRR.

You ladies are truly my sanity in a strange and sometimes frightening reality.

 

[KTMom91]

Sending hugs and prayers. I would freak out if I popped a bump and a bug came out! Hope you find some answers soon so Jessie can get some relief.

 

[DammitJanet]

Susie...I was watching the tv show today called The Doctors and Montel was on there with this young woman who had dystonia and when the young woman was shown I could only stare in shock. She looked much like I imagine you describe Jessie's shaking. It is almost a parkisons type shaking but the muscles look much more rigid. She actually went to Mass General with Montel. If you go to the episode from today you could get the info and watch the episode on the computer I bet and see for yourself.

 

[rlsnights]

Extrapyramidal symptoms including muscle rigidity, contractions, twitching and tremors can be a symptom of untreated Lyme disease. While Lyme disease is unusual in OK it has been found in small numbers of ticks.

For more info you could try this website. It seems to have the most research-based information on chronic Lyme disease symptoms of several I checked.

http://www.lymenet.org/

 

[susiestar]

She has had very few ticks bites, though this might have been one. We live in the country and are pretty meticulous about checking for ticks. She has had few of the traditional symptoms of lyme. I am going to have bloodwork done for it anyway.

As I said, knowing the entomologists can be helpful.

She HAS had extrapyramidal symptoms after a few days on amitryptiline, given to prevent migraines. It stopped within a few days of stopping the medications. There were no medication changes at the time of this shaking going on.

Janet, I am going to look up montel right now. Hopefully the show will be helpful. If not I may send Oprah and Montel a few emails asking for help. At this point I will try anything.

I am NOT brushing off the idea of Lyme disease. She just does not have symptoms that really "fit" the disease. I will insist on having the tests run anyway and if the docs don't like it they can just get over it.

Thanks!

 

[DammitJanet]

Susie...the show to look up is THE DOCTORS

http://www.thedoctorstv.com/

 

[susiestar]

Thanks Janet!!

OMG!! That person, Alex, who was a dance teacher adn ballerina? I saw her on the intro 58 second video that popped up when I opened the link.

It is EXACTLY what Jessie is going through! I am searching for more info.

Finally SOMEONE who has the same symptoms!

Can you IMAGINE trying to do schoolwork while your body did that? Trying to eat or drink? Jessie is afraid to see any of her friends because she "looks so scary and like a freak".

Sigh.

Thank you SO MUCH for your help - all of you!

 

[gcvmom]

Hope the test tomorrow gets you closer to an answer for her and a treatment plan. That poor kid is a saint

 

[GoingNorth]

There's no question that Jess has some sort of 'dystonia'. That just means abnormal muscle tone. In her case that is abnormal contractions.

The problem is that dystonia is a SYMPTOM and can be caused by a variety of conditions.

Have you asked the docs about doing a muscle biopsy? Some muscle problems can be picked up this way.

The muscle biopsy sounds a bit gruesome, but I've had one done and all they do is give a local anesthetic and use a punch needle to take out a tiny sample of the muscle tissue.

Once the local wears off you just have a sore spot and a bit of a bruise. My gut is telling me that this might be endocrine instead of neurological in origin. There are a lot of dystonias that are due to abnormal storage/metabolism of glycogen and a lot of those kick in in the teens.

Docs can often see the cause on the biopsy sample.

 

[Wiped Out]

Susie,
Nothing more to add but wanted to let you know Jesse continues to be in my prayers daily.

 

[flutterby]

(((hugs))) and sending many good thoughts for answers, answers, answers!!!

 

[susiestar]

I had not heard of the muscle biopsy. I will push for that also.

I found the head of the Parkinsons and Movement Disorder Research Center at a major university hospital here. I emailed him.

Not sure I will get a response but it cannot hurt.

Anyway, thanks all. I will push for the things you have all suggested - including an endocrinologist exam!

 

[busywend]

Hugs to Jess and to you!
I hope they can get this figured out soon. I would for sure mention the bug to the docs. Although, this started way before the bug - who knows maybe it was with her the whole time. Was it alive still?

 

[DammitJanet]

On that show yesterday, they said that this dystonia thing can start in childhood and be very debilitating. I dont want to get ahead of myself but there is treatment that this woman is going to get that uses deep brain stimulation. Very interesting. I think I heard about this with another young boy before...maybe on one of the Medical Mystery shows.