So Scared and Frustrated

susiestar

Roll With It
It seems insane to me to not try to stop the tremors or deal with the pain. You would have thought I asked the doctor to share his left nut with us when I insisted that he prescribe something to help with the pain. He got very scowly and said with some heat that he WOULD. NOT. prescribe any opioid pain medications. When I was fine with that he got confused. He was happy to prescribe soma and when I didn't argue he settled down.

I very much feel that PTSD and depression and stress play a part. Sadly most of the docs want to say it is the only part or the major part and to stop looking after that. That sort of thinking drives me batty.

I think it is worse because she is a female. Once the docs see there is PTSD etc... they just want to chalk it up to female hysteria and be done. Pushing them to see past it is a task that I am so angry about dealing with. The anger comes because none of them would treat Wiz like this. Or my dad or brother.

Wiz had a reaction to abilify and his arm and head and neck all contorted and held that bizarre position for about an hour. When I called the doctor it was a HUGE deal. The docs made a fuss, the neuro (the one who refused to see Jess) worked him in the next day and was upset we couldn't get to his office that day, all sorts of fuss.

Now, when it is my daughter, they all just want to say it is PTSD.

The PTSD contributes. It adds to everything some days. She is doing better and it is not ruling her life the way it did the first couple of years, but it is not a reason for the docs to just say "hmmm...." and do nothing else.

Just in my opinion. I am off the soapbox. I know you all understand and have been there done that on this.

Thanks so much. JEss says thanks also. She told me it gives her something to hang onto at night, knowing that all of you are keeping her in your thoughts and prayers.

Hugs to all.
 

Hound dog

Nana's are Beautiful
Susie, you could also request the doctor do a genetic screening for a wide range of disorders. Just because there is no history on either side......well, the combo of you and husband's gene's together could have combined to bring into play something you wouldn't ordinarily see in family history.

When I was quite literally at the end of my rope with Travis..........neuro did such a screening........as well as tests for everything else under the sun no matter how far fetched it seemed. Anything that could be done with a blood test was done.......they took alot of blood from the boy. Which is why when the polycythemia symptoms popped up......doctor went ahead and did the test without question. We already knew he didn't have the whole gambit of other things, no need to look there. Know what I mean??

If I remember right they did a toxic screening to see if it was something in her environment.........how about for pesticides, insecticides, weed control substances.......such things are neuro toxins and could possibly cause such shaking symptoms maybe. Heck, maybe they aren't at toxic levels, but she's super sensitive to them..........

Betsy made me think of that last one. She can't use frontline.......level isn't toxic......but OMG does it make her sick.....she vomits, shakes, well...acts like she's dying. Super sensitive to it the vet said, like an allergic reaction.

So thought I'd toss that out as well.

I know PTSD and anxiety can cause alot of very real physical symptoms. But I'm having trouble thinking Jess's issues stem from this. I think docs tend to over diagnosis for both when they can't easily find answers........sort of like when they used to give the excuse "women's issues" or some such nonsense years ago when they couldn't readily find the cause.

Personally, I'd rather a doctor say I don't know than give me some phoney reason.:mad: We've got a lot of "new" disorders popping up in the last 20 or so years. Maybe it has to do with what we put on our crops.......maybe it has to do with other unknown factors........but wussing out and blaming it on anxiety isn't going to find answers. Wasn't that long ago that fibromyalgia was considered a "all in your head" disorder........now they're finally paying attention. No they still don't know the cause and such.......but enough people present with the same symptoms that now they can't say........it's anxiety, depression, a case of the vapors or whatever other excuse they want to pin it on.

I'll hop off my soap box now. lol
 

mstang67chic

Going Green
I have no suggestions as to where to look for answers...I think you've gotten some good ones already. I do wonder though....and I don't know how feasible this would be given her age or if you could get someone to prescribe anything but....at least to help control the shaking for now, what about muscle relaxers? Or is that what Soma is?
 

Andy

Active Member
Have you looked at fibromyalgia? google it and check out the symptoms.

Not sure that is an answer but maybe it has things to look at? Maybe this is a branch of it?

I hope you find an answer soon.
 

Wiped Out

Well-Known Member
Staff member
I'm sorry Jesse is in so much pain. It seems to me the docs should be doing everything they can to find out what is wrong. I've had Jesse in my prayers daily for many months and will continue to do keep her in my prayers. Hugs to you both.
 

TPaul

Idecor8
Dear Susie,
Is she in any other sorta of pain or distress? I personally have had seizure like episodes that went on for days that where caused because of my bodies reaction to pain that was above my high pain tolerance. I was hospitalized on two seperate occasions and went through a whole panel full of test. Every showed no other cause for the seizures. At one point I would have them about every 15 to 20 minutes non stop for over 48 hours, unless I was able to some how fall asleep soundly. During that time they would stop for an hour or two. They would start again as soon as I came out of any deeper sleep.

They tried the standerd seizure medications to no availe. On rare occasions, ones nervous system can react in this way. When they would finally stop, my body would be completely drained and because of my condition it took quiet a while for me to recover. My condition is not like your little one so I am hoping that when they stop that she should recover rather quickly.

I am hoping that this could be what is going on with your little one. I surely have compassion for her. They are not fun, by no means, but tell her that someone you knows understands what it is like and that it gets better!!

Thoughts and hugs
T. Paul
 

susiestar

Roll With It
T-Paul, not sure that it is what you are describing. But she does have other health problems.

To be totally honest I think she may have fibromyalgia and/or some rheumatoid problems, especially given the family history. She just has some of the beginning signs but the docs all just want to ignore it and hope it goes away.

Each time we go in with a problem they want to treat it like a brand new problem, not as part of a larger whole. I think this may wind up stopping that.

I had to push to get the 7 panels of testing done that the neuro did, but I will push for more testing when we see him next.

I just do not know what to think. I DO think that they are minimizing it the way they did any problem a woman had in the past. That "female hysteria" thing, Know what I mean??

I probably wouldn't be as upset and frantic if I had a husband who was helpful. He worries, but he doesn't know half the problem cause he refuses to talk about it or listen to her when she describes it. He also will not wake up at night to help her for any reason. During the day he comes to me and gripes about her - how she is doing this, or isn't doing that, but other than some sniping at her under his breath he won't talk about this with her. Partly he is scared he will hurt her and mostly he just isn't a strong enough person to cope. That is all I can conclude given his behavior.

Thanks for asking about medications to help the symptoms. Soma is a muscle relaxer. Docs don't want to rx muscle relaxers, but she has already been through the milder ones with no help from them. She says M&M's are more effective than skelaxin or flexeril, LOL.

Every suggestion helps. I really like the idea of running every single test possible. Esp now while we still have insurance that will pay 100% of all labwork. I will have to push that one.

We are going to start her on a calcium and magnesium supplement, even though her levels of these were "normal" according to the doctor. We had not been giving her calcium supplements because the doctor said it wasn't needed given her diet. Right now I am adding it because it may help. I doubt it will fix anything, but it cannot hurt.

You are all so wonderful. Jessie and I each feel much less alone with all of you looking out for us!
 

GoingNorth

Crazy Cat Lady
I'm surprised the doctor would prescribe Soma since it is extremely addictive. Some would consider it to be as much of a problem as opiate derivatives.
 

graceupongrace

New Member
Susie,

I am so sorry for Jessie's pain and your worry. It's awful to feel so helpless when our kids are hurting. I don't have any advice, just lots of gentle hugs for you both. Lifting you two up in prayer.
 

susiestar

Roll With It
The pediatrician has run Jess through the other muscle relaxers with no success. Soma is the only thing that works for her unless we go to a benzodiazepine or try baclofen or phenobarbital.

No one wants to try those. The severity of the pain is the reason they prescribed soma.
 
N

Nomad

Guest
I'm so very sorry.

Perhaps it would be a good idea to take her to a new neurologist or a rhematologist whatever specialist you think could address e the problem.

Since the therapist doesn't think depression is part of the problem, DON'T mention the depression.

If your child is taking medications for depression, downplay the depression and call it "mild depression.i"

Get their minds off of this and onto looking at medical concerns... I also like the idea of them running tests.

Although this really is upsetting, please do your best not to show your anger/worry in front of your child (not easy to be sure). Instead, show concern, empathy and optimism that all will be better soon.

Sending good thoughts and well wishes.
 

Andy

Active Member
Susiestar, If you do suspect that Fibromyalgia may be part of what is going on, try to find a support group in the community. There is a National Fibromyalgia Association (google Fibromyalgia Support Group). I would contact a leader - perhaps see if there is a special children's branch of the group - and discuss the symptoms to see what they think. That person may have more ideas as to how to get the doctors to look closer at this. Maybe there is a national free clinic for the kids?

Same with anything else you may suspect - goggle it with "support group" after it to find another resource of help to get help.

Maybe one of these groups can find a doctor nearby with experience in whatever Jessie is going through? Someone that will really know that what Jessie is feeling is real and treatable.
 

Steely

Active Member
OMG Susie, I had no idea Jess was going through this. I am SO sorry for her, and for you. I wish I had even an inkling of an idea for you and her.

The only thing that comes to my mind is potassium levels. I had an episode on my move out to AZ where my entire body did what you are describing. It seized completely up, and I was shaking uncontrollably. Then they found that my potassium level was dangerously low. In addition I had been hyperventilating so I got an overdose of oxygen in my body, which also can lead to muscle seizures. The hospital had me breathe in a bag which increased my levels of co2, and gave me potassium, and it seemed to bring my body into control. Could any of this be a part of what is happening with Jess?

I think in my situation, and possibly Jess' as well, once my muscles became rigid, then I did have a panic attack. I also was highly anxious about the move, however, I took Xanax and it did nothing for my physical problem. I think the hyperventilation piece was crucial. I did not realize that you can OD on oxygen to the point that your muscles seize. And since that episode I have had to stay on a Potassium supplement for this problem.

I guess all of this to say, Jess' problem could be multi faceted. Have you taken her to the ER when she is in the middle one of this spasms? I think I would.

Again, I am so so sorry. Many hugs and prayers.
 

Mattsmom277

Active Member
I take bacolfen for muscle problems associated with my MS. I can truthfully say that the side effects are minimal. I did initially feel a tiny bit weak and more tired than usual but it didn't last beyond a couple of weeks while my body adjusted. I now take a larger dosage as time goes by but that is due to the worsening of symptoms. For me, it has helped enormously. It can really help the muscle pain in a way pain medications can not. It isn't something you can quit without weaning, however I've had no problem weaning off and going back on when needed, I don't take it between flares. Just in case it comes up again in the future, thought that might be helpful.
Still hoping for answers and a solution for her. :(
 

rlsnights

New Member
I too am very sorry to hear of Jessie's plight. You have received many, many suggestions which sound potentially helpful. And having a new neurologist on board who seems willing to follow through and rule out serious causes or complications is great.

I really understand your desperation to help your daughter and to find the cause of these extreme symptoms. Hopefully, the neurologist will find a way to help. It's tough to just rx something off the cuff when a child has seizures since they do not want to provoke more seizures or a new variety. Since I am no expert on seizures I won't offer any advice but it sure would be great if a short term solution to her symptoms could be found.

After going back and reading through your previous posts about Jessie's symptoms I was reminded a bit of the reactions of our doctors to our difficult child 1's severe unexplained symptoms when he was 14. After that experience, we have a much better understanding of why doctors may tell you that a physical symptom is being caused by anxiety. I thought I would share our story in case it was helpful to you.

I am NOT suggesting that Jessie's symptoms are "all in her head". Rather I am giving you an example of the kinds of things doctors sometimes see that can cause them to say "anxiety" when confronted with symptoms that make no sense to them based on their understanding of human physiology and anatomy.

Our oldest difficult child 1 is extremely physically disabled by a congenital bone disorder - Osteogenesis Imperfecta. He has never walked and uses a power wheelchair for mobility. His bones are very fragile and he has had countless fractures - from micro to major - including fractures in utuero. So difficult child 1 is, understandably, extremely anxious. He cannot grapple with his anxiety in any conscious way.

When he was 14 he had an accident with his wheelchair - ran into a heavy bookcase - because of a malfunction of his chair. If things had gone differently and the bookcase fell on him he would have been killed. That didn't happen but what did happen was difficult child 1's subconscious anxiety was intensified to an intolerable level.

Shortly after that accident he attempted suicide. His pediatrician hospitalized him in the medical ward at a local hospital because the pediatrician psychiatric wards were all full. During the stay he was, of course, perfectly fine. Model citizen. So they sent him home and again he attempted suicide. This time he went to the psychiatric hospital but was released after just a couple days because he was "fine". He stopped attempting suicide at home after that hospitalization.

Instead he developed what appeared to be full blown grand mal seizures. The EMT's who responded to our call the first time were sure he was having a seizure. But mysteriously, when they started to intubate him on the way to the ER he came out of the seizure. He was fine when they got to ER. So they sent him home after arranging for an outpatient EEG.

difficult child 1 had 3 more rounds of seizures like the first that sent him to ER. His EEG showed no abnormalities of any kind. That was the first time a doctor suggested to us that our son's physical symptoms might be symptoms of anxiety. We simply could not grasp the idea that unconscious anxiety could be causing these extreme physical symptoms - it was so far beyond our experiences with anxiety you know? We didn't know what the answer was but could not believe it was anxiety. Of course NO ONE including our son's psychiatrist (a major jerk) bothered to sit down and really talk with us about this - they just said "anxiety" shrugged their shoulders and told us not to bring him to ER again for this.

I know you understand our incredulous and angry reaction. We're supposed to keep him at home when he has what appears to be a grand mal seizure? For one thing he could fracture during one of these.

But before we could really go to battle with the docs over this advice he stopped having seizures. Instead he fell out of bed (perhaps on purpose?) and said he had lost all sensation in his lower body. So back to ER we went. After a 3 day hospitalization that must have cost $200,000 plus from all the tests, the neurologist said - nothing wrong with him physically to explain his symptoms. It's anxiety. Take him home today.

It was still unreal to us, partly because it had all happened so fast - within a matter of 10 days. We could not take it in. But we brought him home. Still no psychiatrist or regular doctor sat down with us and tried to help us process this or figure out what to do. difficult child 1 had one more seizure at home after that. We didn't take him to ER we just waited it out. That was scary let me tell you.

But no more seizures after that. None. And no other sudden-onset dramatic physical ailments took their place.

Instead he began attempting suicide again. But instead of quiet, subtle attempts like wrapping the cord from the hospital bed around his neck and lowering the bed in a bid to strangle himself he made his attempts in a way that was a clear bid for attention. He also became extremely aggressive and hyper-sexual toward us. Repeated psychiatric hospital along with issues at school ended up with him in a TFC placement and ED school program 500 miles away after 2 local TFC placements failed because of his aggressive behavior toward other children and adults.

I encourage you to keep pursuing a medical diagnosis for your daughter. Having a good neurologist to work with is a blessing.

But I would also say to you - be open to the possibility that her symptoms to some extent are an extreme expression of subconscious psychological processes and conflicts.

Our son did not do these things on purpose. There was no conscious attempt to manipulate us or the doctors. Despite therapy and a loving family willing and available to listen and help, it was the only way his mind could find to express his extreme psychological distress.

In our son's case an apparently minor incident triggered a major and lengthy episode of extreme somatization. If you think your daughter's symptoms might in part be an expression of anxiety or extreme internal conflict, perhaps you can look back and find a triggering event or anniversary that might give you a clue about why it started and what is going on with her psychologically.

Many hugs and strength for your journey. Your daughter has one terrific mom.
 

BusynMember

Well-Known Member
I hate, hate, hate when physical disorders are blamed on anxiety. If you dare tell a doctor you have any mental illness and they can't find the physical cause right off the bat, they always seem to attribute it to nerves. been there done that and it's horrible.

I searched "chronic tremors" and couldn't come up with anything. Your poor little girl. I hope they can find something to stop the shaking and then get down to the business of looking at things they may not have thought of. It's time for them to go way outside the box. I believe your girl is sick, poor thing.
 

Josie

Active Member
Susie,

I am in the same position you are with the fear of will my daughter ever get well and how to treat it. We have a treating doctor but the treatment is controversial and it is hard to be certain it is the right path when so far it isn't working. She's been housebound for 2 years due to a severe headache.

Here is my advice as another mom going through this:

Both of you should consider going to a therapist. Not because I think her problem is anxiety in any way, but it would give her someone to talk to about it, without worrying about your feelings. For you, because it would be someone else for you to talk about it with. I recently went back to our old therapist because I need to talk about our situation and husband doesn't want to talk about it as much as I do. Other people don't really get it and imply she should just get on with her life and/or we need to just crack the whip and she will hop to. This therapist listens and is supportive.

You might try looking at Integrative Physicians. I like to go to MD's or DO's that provide traditional medical care when needed but also alternative medicine. If you do this, try to find out what alternative methods they use so you know if you are comfortable with that. Not that I think her problems will be solved by taking supplements, but I think these doctors will be less likely to say it is anxiety and look for the cause. My daughter had a disabling headache for a year and it took an out of mainstream doctor that ordered her MRI. I know your husband is between jobs right now, so this might not be a feasible idea since most Integrative docs don't take insurance. For us, even though some of our doctors are not on our plan, the tests they order are covered by insurance if done at the appropriate place.

I know you are not happy with your local ER but I don't remember if it is possible to go to another one. I just took my daughter to the ER and the docs have now sprung into action even though they just treated the whole thing very casually before. The admitting doctor recommended another neurologist and made sure we were able to see him. I had requested a change to this doctor before and was told it is very difficult to change and that he didn't specialize in headaches. Not true, according to the people in the ER.

Hugs to you and Jess.
 

susiestar

Roll With It
Thank you to everyone.

The neuro we saw recently IS a new neuro to us. He also tried to blame this on depression. We insisted he look for other solutions first. Said we will agree that it may play a part, but it isn't the cause.

He is doing lab work, and then the MRI before he does anything with medications other than rx'ing what the pediatrican had given her for the pain of the muscle spasms. If the tests show nothing then I am pushing for him to run every single test he can think of. Blood tests, I mean. Or lab tests.

I just hate fighting each time she has a problem because the docs see a female and assume it is depression or anxiety. I get that enough for my medical problems. Jess does NOT deserve substandard care from docs just because she is female.

Not ALL female problems are caused by depression or anxiety.

If males got this anxiety business from doctors there would be a lot of doctors out of business. Cause the men would be howling long and loud about idiot doctors.

Time for us females to start howling!!!

Anyway, thanks for all the ideas. As we learn new things I will post them.

In the last week it has gone from having breaks between periods of shaking to having no breaks. She can suppress it for 10-30 seconds at a time but it comes back hard.

Hugs to all.
 
Susie,

Even though I'm much more of a "lurker" than a poster now, I try to keep up with what's happening here. I'm so sorry to hear about Jessie - My heart breaks for her, for you...

You've gotten some really good advice from the others. I can't think of anything useful to add. I just want you to know I'm keeping your daughter and you too in my thoughts and prayers... Hugs... SFR
 
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