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Need help - Tic explosion and not sure what to do


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My daughter has had tics for a few years. Pretty mild considering and we've been treating with magnesium (natural calm) B complex, calcium etc...

Over the past year or two she's been doing great.

 

A few days ago tics started coming back. She also has a slight head cold.

Yesterday I gave her rescue remedy after reading how much that has helped other's tic on this board and others.

Within 10 minutes she exploded into a multitude of tics.

It was as if I were watching someone with severe parkinsons disease.

 

I didn't know what to do.

She was crying in pain. As most of the tic cause her to clench her muscles very tightly.

I popped her into the tub in an epsoms bath.

 

About an hour or two later she started calming down a bit almost to the point where the tics would stop.

But then all of the sudden they would start up again as intense as before.

It was like cycles. They never stopped completely but would calm a bit, then a while later go nuts again.

 

This morning when she woke up she was still doing them although not as intensely. However, she had developed 2 more new tics to go with the other ones she had.

 

By this evening she was back to the intense tics that she experienced yesterday.

Tonight it go so bad I thought I would have to rush her to the hospital. (from the pain of her muscles)

 

I called her doctor who of course are NO help as they don't have experience with this.

They told me I should give her advil for the pain.

That if I took her to the hospital they would probably give her haldol? Not sure if that is what the doc said. It sounded like that.

which would probably make her calm but doped. (which I didn't want) and that tomorrow I should call the neurologist.

The same neurologist we saw a few years ago that wanted to dope her up on all sorts of medications even when her tics were next to nothing.

 

I am at the end of my rope here. I don't know what to do. I feel like my arms are cut off. She looks at me with those tiny eyes full of pain and just begs me to help her as her poor little muscles are in so much pain.

 

Then she tells me "its okay mommy, I can handle it" She tries to be so brave but her poor little body is in so much pain.

 

I wish I could find someone experienced with this that could give me the bottom line.

I am so terrible at figuring out what to give her or who to see about this.

I have tried alternative doctors, I have tried neurologists. I have tried reading books. I just never know what to believe or what to do.

 

I have an appointment in feb to see yet another doctor that may or may not be any help. The office assures me she (the doc) has other patients with tourettes/tics and has experience with it. She will also be seeing an allergist while there to get tested.

 

I am not sure if anyone can do anything to help her or not.

Basically I just want to know if all this "explosion" stuff started because of the rescue remedy (as it seems) or if that was just a concidence.

I am afraid to give her anything at this point. Could she have been allergic to the rescue remedy? Is that possible?

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I am sorry you are having such a hard time. I am just learning as well, but I hope someone can come along that will help. If it was the Rescue Remedy it should cycle out of her system in a few days. If you think the epsom salt bath helps, I have heard of people doing them am and pm. I think that everyone agrees that a DAN dr., environmental, or Integrative are the ones that deal with these alternatively. Perhaps ask around to find one with experience. I pray that things settle down quickly and someone else will come along with more substantial advice.

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I'm not sure if I can help you sort out what you should best do for your daughter, but I wonder if Rescue remedy has an ingredient that acted as a catalyst? Is this the first time you gave her this? I checked the ingredients online and they listed several flower varieties and alcohol:

The original Bach Rescue Remedy

 

* Impatiens: For those who act and think quickly, and have no patience for what they see as the slowness of others. They often prefer to work alone. Teaches empathy and understanding of and patience with others. We've found it very fast-acting in alieviating an impatient attitude and lowering stress.

* Star of Bethlehem: For trauma and shock, whether experienced recently or in the past. Teaches the ability to recover from traumas and to integrate them into the present life.

* Cherry Plum: For those who fear losing control of their thoughts and actions and doing things they know are bad for them or which they consider wrong. Teaches trust in one's spontaneous wisdom and the courage to follow one's path.

* Rock Rose: For situations in which one experiences panic or terror.

* Clematis: For those who find their lives unhappy and withdraw into fantasy worlds. They are ungrounded and indifferent to the details of everyday life. Teaches one to establish a bridge between the physical world and the world of ideas; may foster great creativity. Is also used to bring clarity and alertness to the present moment.

Perhaps the alcohol is a problem? Have you tried to contact their customer service to find out all their ingredients and how they were derived? How it was distilled, etc... http://www.bachflower.com/index.html

 

I will share with you a little of my experience last spring about something completely different. It was Easter weekend and we were celebrating with family. Tigger was given four coconut macaroons and within 10 minutes he began a head shaking, nodding tic that was multi-stepped and methodical in nature. He continued to do this for two days and had difficulty sleeping as a result. I thought it was the coconut, but three weeks later we discovered that he had a severe corn allergy (through the ALCAT, a delayed food intolerance test that measures white blood cells). Those cookies had maltodextrin, a sweetener made by processed corn. Alcohol is also generally made from corn, but not always. It is my opinion that when Tigger's immune system is low his antibody levels rise against wheat and corn. If he eats a severe allergen I will see a flare up, but since we changed his diet we have never seen anything as severe.

Now, my son Tigger has never had such a severe reaction as you have described here. I certainly think you are right to take your daughter to see a specialist.

 

I just wanted to share my little bit of experience so that you can mull it over and possibly get something out of it to go on.

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mom2three,

 

I just wanted to add that i was trying to quickly search the ingredients also. One thing that caught my attention was that rock rose is a polyphenol. It also contains tannins according to one site. You may want to search tannins and phenols and see if you can connect any other foods or substances that may trigger an increase in symptoms that are high in phenols and do a little research on tannins. I remember someone posting about a supplement once, that the concern was regarding tannin. I can't remember which one it was though.

 

I know how upsetting this must be. Just remember that most reactions that are tied to the more natural remedies, usually are shorter lasting than an adverse reaction to something like HALDOL :angry: I can't imagine that a mild muscle relaxer wouldn't be considered before a medication like Haldol, in an emergency room situation.

 

I'll be praying things improve quickly.

 

Kim

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Sorry to all--I'm a newbie here and trying to figure out this reply thing.....

 

Anyway, mom2three, have you ever checked into PANDAS? If not, it is a disorder of tics that are exacerbated by strep infection. My son, age 7, was diagnosed with this over the past 2 weeks, and clinically the tic symptoms get better and worse with the amount of antibodies in the child's bloodstream. The treatment for the tics in these kids is antibiotics, which helps their tics or OCD or ADHD--whichever they show while their levels are high. Last week, before starting the antibiotics, he had NO usual signs of strep, has mild to moderate tics constantly, but his blood titer was 4 times the normal kid without strep.

 

Don't have any advise for how to otherwise control outbreaks, though. And, as an ex-ER nurse, I can tell you Haldol is what we gave physically out of control psychiatric patients, and it REALLY sedates. We called it a chemical restraint.

 

Anyway, here's a link to the PANDAS info: http://intramural.nimh.nih.gov/pdn/web.htm.

 

Emily

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Mom2three,

 

I am so sorry to hear what is happening to your daughter.

 

What i found in the past that is helpful is the magnesium cream made by Kirkman. You can order it from www.kirkmanlabs.com or 1800-245-8282. I would apply the creme to the trouble areas after an epsom salt bath.

 

Also, i would like to add my experience regarding natural remedies. Although my son did not have adversed reaction to the Rescue Remedy, but he reacted to the Unda #s, a form of homeopathic remedy. The good new is that the affect did not last long. Once the remedy stops, the tics would subside slowly over the course of about 2 weeks to 1 mos.

 

My son is back on the Unda #s. This time he is taking the remedy twice daily and once a week and he is not having any problems as when he was taking the Undas 3X daily and everyday.

 

Good luck and i will pray for you & your daughter.

 

Pat

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Thank you to everyone who replied.

I just grow so frustrated with the lack of help i have experienced with the doctors I have tried.

I wish this condition was more well known.

 

I do have a tiny ray of hope today. I found the number of a woman who runs a support group for families with this.

She has a child, now grown, who has it. She spent years and years researching it and gathering information etc..

Hopefully I will be able to get a hold of her today and she can recommend someone in my area (or where ever) that I can take her to.

Or recommend other things that I could do to help my daughter.

 

Hopefully this will not be another dead end.

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Hi mom2three

i already replied on the thread you started on Bach's rescue remedy that your daughter may have sensitivity to one of the ingredients and linked you there to Bach's website.

 

Does your daughter have a tourette diagnosis? if so, this could be a waxing phase that could be related to internal matters like hormonal changes if she is that age, or an illness.

As you say the tics began increasing BEFORE the Bach's, I would assume it wasnt the Bach's that caused the waxing, only exagerated it.

 

we have learned over the years with my son, who does have genetic Tourette Syndrome, that sometimes waxing comes with no clear explanation of the trigger

At times like that, he finds the epsom baths and acupuncture/reflexology/etc to be the most instantly calming

 

Are you continuing with the supplements that were helping before? I do hope so as removing them could also be contributing to the waxing. The Bs and magnesium are so important at waxing times!

 

I do agree that something like a strep or other infection could be contributing to the explosive tics and would sure rule that out if I were you

 

hoping things wane soon and that you manage to locate a good doctor

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Hi M2three,

 

How old is you DD? I just wanted to add my son had his first explosion at 12, with a body gone out of control. It is so scary and such a feeling of hopelessness. I did see in my son a bad reaction to a B-vit his Dr. gave him, and also fish oil. my son has an allergy to dandelions so I stay away from products with flowers.

 

I had to start over twice with his vit. because I could not get to a point where I saw any relief for him.

 

I do feel he was at his puberty stage the year of his 12th -13th b-day.

 

I pray things will calm down soon for her.

God Bless,

C.P.

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she is 11.

Hey can someone tell me where I can find information on what doses of vitamins I should give based on weight.

I figured it out once before when she was younger about how much mag and how much B etc to give her but now that she is older and bigger I am sure the dosage would be more.

Also, I give her mag, B complex, and sometimes calcium as well as a multi vit. SHould I be giving her more?

 

THanks

 

Hi M2three,

 

How old is you DD? I just wanted to add my son had his first explosion at 12, with a body gone out of control. It is so scary and such a feeling of hopelessness. I did see in my son a bad reaction to a B-vit his Dr. gave him, and also fish oil. my son has an allergy to dandelions so I stay away from products with flowers.

 

I had to start over twice with his vit. because I could not get to a point where I saw any relief for him.

 

I do feel he was at his puberty stage the year of his 12th -13th b-day.

 

I pray things will calm down soon for her.

God Bless,

C.P.

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Mom2three,

You mention your daughter was doing great for a while, right? And now some real waxing is occuring? Did it gradually come on over a period of weeks? Interesting you say she is eleven -- (okay, I am a little fixated on the vaccine thingy!) - could I ask if she has had any recent vaccines or boosters, I believe this is the time for that. What grade did she just enter, sixth? Are you still following much of what you have done in the past as far as supplements and diet? Also, as CSP has suggested, this is the time of maturity, so maybe her hormones are kicking in - did she start the period recently?

 

Faith

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Mom2three,

You mention your daughter was doing great for a while, right? And now some real waxing is occuring? Did it gradually come on over a period of weeks? Interesting you say she is eleven -- (okay, I am a little fixated on the vaccine thingy!) - could I ask if she has had any recent vaccines or boosters, I believe this is the time for that. What grade did she just enter, sixth? Are you still following much of what you have done in the past as far as supplements and diet? Also, as CSP has suggested, this is the time of maturity, so maybe her hormones are kicking in - did she start the period recently?

 

Faith

 

 

she hasn't had any recent vaccines. She got a few last year at age 10 then will get the rest she needs soon.

she also hasn't gotten her monthly yet and hasn't really starting developing yet but again that could be just around the corner and hormones can be playing a big part.

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mom2three,

thanks, my feelings are along the lines of vaccines just further insulting the systems and things seem to go awry shortly after. So she didn't have them this year in '07, do you mean a whole year ago or could it be just six months or so ago?... I don't say its the "cause" but an "instigator". This whole mercury/gut/brain thing is my little punching bag right now. :angry:

 

Thanks

Faith

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Dear mom2three,

I posted an update to my daughters condition, see http://www.latitudes.org/forums/index.php?...art=#entry19158

Since we started with a gluten free diet, her tics have been very mild.

I feel so bad reading your post- we have also gone thru so much pain, on stand by to go to emergency room for the most of Sept and Oct of this year. My daughter's tics began right before her 12th birthday, no shots, no antibiotics, nothing at that time. I am so hopeful now that we are on a right path and I really hope that you will find soon what is causing your daughter's tic explosion.

I did not beleive it when I kept on reading here that it gets better, but it seems that it really does.

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I know shortly after we vaccinated the one year shots our tics exploded along with a strep infection for the first time. Then last year after five year old vaccines and flu shot they all exploded again. I agree with Faith an already taxed immune system just seems to go over the edge after the shots. Dr. Demio says Andrew has high levels of metals. There is definately a gut brain connection here. I just hope research will prove this soon. Now Ava will be one in Feb.and I am dreading shots and the decision I will have to make.

Michele

Dear mom2three,

I posted an update to my daughters condition, see http://www.latitudes.org/forums/index.php?...art=#entry19158

Since we started with a gluten free diet, her tics have been very mild.

I feel so bad reading your post- we have also gone thru so much pain, on stand by to go to emergency room for the most of Sept and Oct of this year. My daughter's tics began right before her 12th birthday, no shots, no antibiotics, nothing at that time. I am so hopeful now that we are on a right path and I really hope that you will find soon what is causing your daughter's tic explosion.

I did not beleive it when I kept on reading here that it gets better, but it seems that it really does.

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