Dr appt tomorrow, Major Stress, and ordering Bonnie's Vitamins

[mom2three]

I feel so overwhelmed!!!

 

I just wanna cry, or scream, or run away..

 

I feel like doors are just being slammed in our face. Everytime I feel like we are making some progress we are forced 10 steps back.

I know this won't be like this forever but it is so hard to get through it.

I have no one to talk to about all this because no one I know has gone through this.

 

My poor daughter is going through so much right now.

I've posted before but I will just sum it up in case someone is reading my posts for the first time.

 

(short version) My daughter started ticing in 2nd grade.. We didn't notice at first, assumed they were just annoying habits etc.. It wasn't until 4th grade that we had her properly diagnosed. 4th grade was our worst year. She had lots of "big" tics that were very noticable and she had a very rough year being teased and adjusting etc.. (yes she was diagnosed with tourettes)

 

That was when i found this board. I did research on some vitamins and took some free advice from many of you.

The vitamins really helped.. for the past (almost) 2 years she has been doing really well. (90% tic free)

 

She is currently in 6th grade and was doing very well until about 3 weeks ago. She started with some tics but nothing major. Each day they seemed to be getting more intense and were the type that really tire out and hurt her muscles.

On New Years eve day I tried giving her some Rescue Remedy to calm her a bit.. Well something in it affected her and she went crazy with the tics. So badly I thought I would have to rush her to the hospital.

 

She looked like she was dancing, doing the twist or something..

Over the past few days/weeks it has be cycles of this. Bad tics only stopped by her clenching up all her muscles..

 

I immediately came back to these boards to find help. (thank you to all of you) I really thought it was the PANDAS. She was sick and we have been around others who had strep, although she never actually had it.

I had her blood tested and her results were within normal range. The doctor said they were read correctly.

 

She had all the symptoms for pandas except the urinating problem.

 

Her moods have been off the chart lately, which is understandable considering the amount of pain her poor body is in. But she is also very hard to reason with sometimes, she is very VERY clingy.. She also has gone from acting older (more teen like) to reverting to being much younger. (acts very baby like - cute-sie etc) also MAJORLY OCD about quite a few things.

 

Tomorrow we have an appt with the allergist. I really am praying that most of this is some sort of reaction to an allergy. I am not sure WHAT to ask them to specifically test for, although I have made a list of things/tests that I found on this board.

 

I also am waiting for the neurologist to get back to us regarding an appt. I want them to do more testing on her to rule out other causes as well.

 

Tonight I placed an order for Bonnie's vitamins.. The most expensive amount of money i have ever spent on vitamins but I have to find something that will help her. It kills me to look at her in such pain from the violent way her muscles are contracting and not be able to give her some relief.

 

I ordered the TS plus control, the TS mag tauratte, and the epa/dha

She recommeded that I order the control, and epa/dha.. I decided on my own to go with the taurate since she is waxing so badly now.

 

For those of you using these vitamins how many do you give your child and do you break them up into doses, do you mix them with food or just let the child swallow the pills? (curious as to what works best since they have to take so many)

 

Sorry to write such a book here but I am just loosing my mind.

Many of my so called friends don't understand what we are going through right now.

They see my daughter who appears to be perfectly normal on the outside and think I am making this stuff up. They can't understand how she clenches her muscles while around others so they can't see her tics.. They don't see her at night when she has her melt down and her poor little body shakes and shakes..

They don't deal with the tears and pain she is in..

Her moods are very affected by all this and these "friends" think I am spoiling her since I don't "Yell" and discipline her the same way I do my boys (who don't have these conditions)

 

I am so frustrated in my life now.

I am inches to just packing our lives up and running away to some big ranch in montana.. (okay not really serious, but sometimes I just want to get away from extended family and so called nosey friends)

 

I know this also could be hormone related since she is 11 and could be getting her monthly cycle soon. I know from reading this board that her age is a "HUGE" ticing time..

 

I just feel like we are never going to get through this time.

Again thank you to all of you for your advice and allowing me to vent.

And thank you to anyone who can answer my question on the vitamin dosage (bonnie's vit)

 

i am one stressed out mom

[bmom]

Im sorry that you are going through this. I went through it around a year ago and within 2 months I had lost 15 pounds because I was so distraught. After going to UCLA for Tics and Tourettes and many more doctors, the thing that got the ball rolling was the Kids Calm. It sounds like you are already doing magnesium, is it citrate, taurate, or oxide? Oxide did not help my son at all. I just started my son on Bontech 1 1/2 weeks ago and I give it to him 3 seperate times a day as a feel it is better to break it up. with breakfast, after school, and bed. Just know this too will pass. Although my son is doing great, the thought of moving to Montana after this outbreak has crossed my mind many times-the simple life. Hang in there and pray for guidance. I did and it passed and I still pray everyday that God is guiding me. Believe me, I was never real religious, but I feel he has guided me. It may be hormones and I hope it passes quickly. I still have to question the strep though. Why everything at once. Did he do a throat culture? I have the email to Dr. Murphy at Shands who is a specialist in the PANDAS field-actually it is her assistant, but they have been very informational. I could private message her or you could google Dr. Tanya Murphy in Florida. Her assistant spoke with me for about a half an hour and they are the top in the PANDAS field. Perhaps it is viral, not strep. They could discuss this all with you-they did me. Good luck.

[CarolynN]

Mom2Three,

 

I can only imagine how overwhelmed you are. I wanted to attach an two old posts I found similiar to your situation. Both these people who posted had their children come up with negative tests for PANDAS but PANDAS was still the suspicion. I thought you might find it interesting http://www.latitudes.org/forums/index.php?showtopic=1894 and http://www.latitudes.org/forums/lofiversio....php?t1826.html . Do you know about the subset of PANDAS called PITANDS?

 

Also I was thinking about what kind of things could cause a reaction where you did not see one before. I remember reading of a boy who had a sudden onset of bad tics. They were able to track it back to newly layed carpet at his school. The fumes from the new carpet were triggering him. Perhaps did you buy a new vehicle that would have new carpet in it or any new carpet at home?

 

I was thinking, just a long shot, but have you had a lot of rain in your area where there could be the possibility of mold that grew all of a sudden in your home that she could have had a reaction too? Did she start using a new body wash, soap, or did you switch laundry detergents? Can you think of any new scents like candles or airfreshners?

 

One other thing to consider, and I don't know if you read my MSG information I just posted, but I was thinking lets assume x,y,z triggered her body (whatever it is). Lets also assume, because I don't know, she normally has a fairly high tollerance for MSG or artificial food dyes. At this point one way or another, because of her original trigger, her neurotransmitters are not in balance. So lets assume what ever triggered her is no longer necessarily affecting her directly but other things that affect the nervous system (like MSG and artificial food colorings) would be continuing on the reaction and not allowing her neurotransmitters to come back into balance. Because these foods naturally excite the nervous system they would be carrying out an additonal reaction in her. Even if these foods normally, when her body is not taxed, did not bother her. I see this with my own son when his tics are elevated. Here is my post on what foods to look for that contain MSG http://www.latitudes.org/forums/index.php?showtopic=2598 .

 

If you think it is an underlying bacterial infection, whether it be strep or something else, I wanted to share with you what my Naturopathic Doctor told me to do for my two sons when they had perianal strep (strep that grows in the intestional track and out the bottom - very painful!) and I had strep throat recently and it worked for me. Since strep is a bacterial infection, this should work, in theory, for other bacterial infections too. I don't think it would do much for a viral infection. As a side note, my one son had been on two forms of good old anti-biotics for the perianal strep and it did not get rid of it but the below remedy did.

 

She told me to have my sons (at the time they were 3 and 5) take grapefruit seed extract (125 mg tablets) twice a day. Also to take collodial silver twice a day (I buy a brand called Sovereign Silver supposably it has the smallest partical size) and a good quality probiotic. She told me to do this for 10 days. The grapefruit seed extract is a very powerful natural antibiotic. It cleared up both cases of perianal strep.

 

Now when I had strep I also got liquid grapefruit seed extract and put two or three drops in about 6 or so ounces of water and gargled. Within about 2 hours, and I am not joking, after I started gargling with it I noticed a big difference. By the next evening it was a vast improvement. The problem that I ran into is I over did a good thing. Grapefruit seed extract is VERY bitter. I should only have gargled a couple times a day and I was doing it at least every two hours, and also when I would wake up at night. So with that said I ended up with a blocked salvia gland. If you read on the internet about using grapefruit seed extract, in not such high doses as I did of course, you will see that it is very effective against strep and I can certainly attest to it! One easy way to get children to swallow the liquid form is put it in lemonade it does a pretty good job of disguising the taste.

 

Just very quickly, I know there has been some press on side effects of collodial silver. If you take it in a manner where you manufacture it at home you can end up with a condition, using it over a long period of time and in VERY rare circumstances, where the skin turns a silver type color. But if you read up on it you will quickly see it is not related in with the reputable manufacturers and by using it according the the correct directions. I, personally although many people do take it every day, only use it during times of illness to take any remote possibility of risk away.

 

Also if your daughter has a metal allergy I don't know how that would effect her taking the collodial silver or if she has a citrus allergy would she react to the grapefruit seed extract? Just something to consider.

 

My son has been on Bonnie's vitamins for right at a year. They are very expensive but for us they have been worth every penny. The ONLY way I can get them in him is to mix them with peanut butter. I make the "peanut butter balls" just small enough that he can swallow them without having to chew it. The vitamins have a really bad flavor (it is the B's portion of the vitamin that gives it the yucky flavor) and it is hard to disguise. I tried everything else I could think of to mix it in. Any liquid form I tried mixing it in made him really gag. But the peanut butter really hides the flavor fairly well. But your daughter is old enough she might be able to swallow the pills. My son is 7 now and we give him 5 in the morning and 5 at night.

 

Keep up hope. Obviously something triggered her. This strong of a reaction did not just come out of no where.

 

I will be praying for you and your daughter.

 

Carolyn N.

[P_Mom]

Hi,

Sorry you are going through such a tough time, I do understand. When my son first exploded with ocd/tics, I was a mess and had amny days I felt like I wanted to run away. So, you are not alone. It sure does sound like PANDAS, did you have her blood tested when she was symptomatic, or, were the tests done later when things calmes down? Also, remember, other viruses/illness can cause the explosion, not just strep, like mycoplasma, etc. What kind of illness did she have????

[mom2three]

Thank you for all the support.

 

We had the first allergy visit this morning.

It went well.

 

They did the tests on the skin today, the doctor said that is where he likes to start but assured me he will keep testing her until we find what is triggering her. (if its allergy related)

 

the foods were fine. No symptoms at all for any dairy, fish, yeast, soy, etc.. But I don't think it is foods. Maybe chemicals (like msg) etc... but not foods, so I wasn't surprised that nothing jumped out there.

 

What really developed was ragweed, she had a very strong reaction to that and also to dustmites as well as molds and various other trees, pollens etc..

He also said she was still suffering from her cold.. (running nose, post nasal drip etc).. I had taken her to the doc but they said it was only a virus and to let it run its course etc.. But he said since its been 3-4 weeks and she still has it he would put her on an antibiotic. Also, he said her nose and throat were very red and aggitated.

He also gave her allerga (spelling?) for her allergies.

 

We came home and cleaned her room from top to bottom.. I threw out all the old dolls, stuffed animals, old pillows and piles of junk she had accumulated in her room. We did the windows, fans, scrubbed the walls, pictures, bedding, book case, etc.. now all is nice and clean..

I am also going to get the bedding wraps for her mattress and pillows.

 

He gave her an allergy dose while we were there and just a few hours later she is feeling much better.. I am crossing my fingers that this is the right direction..

I am to nervous to truely be happy yet as this could just be a fluke and she could be back to ticing badly later.

 

For now he is having her on the allerga as well as the singular and the flonase..

Then as things improve he will decided whether or not to take her off the singular or allergra based on her improvments.

 

I also told him about the vitamins and bonnie's vitamins that I ordered.

He suggested having the peditrician test her blood to make sure all her vitamin levels are within a good range since to much of certain vitamins can lead to problems as well.

 

I am happy with the visit over all.

I feel like this is the first time we've had some progress in the right direction.

 

We go back in 2 weeks to see how she is doing and to get further testing.

 

I think this is the first day in weeks that I didn't feel like my head was going to burst from stress or worry.

thank you all again for your suggestions and help.

[bmom]

That is great that you got the antibiotic! That alone has sometimes helped a child. Did he prescribe all three allergy meds in one day? I would start each one slowly if so to see what is helping. My son actually had a reaction to antihistamine-I know, not what you want to hear. The other thing that some people have a reaction to is the EPA/DHA. You may want to start that sometime after the vitamins seperately so you can determine what is making a big difference. Glad you made some progress and in my humble opinion the antibiotic may be a biggie although some do not have it as helpful. Hope it is for your daughter!!!!!

[CSP]

m2three,

 

Funny Montana was the first place I thought about packing up and moving to. It can be so overwelming. I hope you have good results with the stuff you have done today.

 

Keeps posted,

C.P.

[faith]

I would have said Mexico--I hear they have some good tequila...

 

 

Mom2three,

what kind of allergy dose was that? Is it a neutralization spray, where its supposed to be minute amounts of the stuff alergic to? What did you mean by feeling better -- from what symptoms? The tics or other like the cold/virus? When we did that last year (intradermal testing), my son also had reactions to those (ragweed, mold, dustmites, and cat). I never saw anything to believe he was alergic of any kind before. However I did as you say and cleaned up and covered matress and allery pillowcase. We did not do foods, for I did that with the Alcat later on.

 

But I'm glad at least you will have a trial with the antibiotic. Could you let us know what the symptoms were more presently and if you note anything after a week or so? Glad you are feeling more hopeful.

 

Faith

[Jeff]

Mom2three, For what it's worth, the symptoms you described - hard to reason with, OCD, - sound similar to symptoms my daughter exhibits when she's had too much corn syrup. That stuff is evil. She gets very irritable, loses focus, and her OCD symptoms are stronger. As she's gotten older, she can tolerate more, but for a while there, we really had to be vigilant about the CS. And, unfortunately, it's in so many things. We buy Coke in bottles, from Mexico, 'cause they use cane sugar, not corn syrup.

Stick to your guns. We've probably all been considered loony by others at times, but we know best what's happening with our children.

Jeff

[lmcgill]

As much as I feel so sad for your situation, I also feel some comfort knowing that I am not the only one that goes through the same thoughts and helplessness/hopelessness as other people.

Trust me, I have thought of running away...but by myself! Of course I never could, for the same reason as everyone on this board, we love our children and would gladly take their situation on ourselves if that was an option.

Back to reality and your situation, I just ordered our 3rd batch of Bonnies supps.. Since we have had our son on them, he has never had a major explosion of tics like he had before them. He will be 9 in a few weeks, and he has had tics for almost two years this June. We also give him 1 tsp of Kids Calm at night. He takes 6 in the morning and 6 at night of the control, and one of the EPA morning and night.

We also watch his diet and take him to a NAET Dr a couple times a month. As I mentioned before, I am still not completely sure about this. I am hoping to treat him for Soy (big time positive on his IGg test) but at the rate she is going, it could take years and several thousand $$!

We are doing pretty good right now, I want so bad to be able to stop the anxiety I have wandering how he will be when he comes home from school today, tomorrow next week next year! This whole experience has not been good for me at all. My whole life has been affected negatively by it, and the friends you mentioned as well as close family all think I am the one with the problem. They didn't see him shaking his leg and body so bad he had a tough time staying on the couch. Or when he saw me emotional one time and thought it was his fault.

I am trying my best to change my attitude, if not for me, for my son. Kids have a way of picking up on your feelings. One day at a time, and as much prayer to give me the faith I need.

[patty]

Mom2three,

 

My heart goes out to you & your daughter, as i have been in your shoes about a year and a half ago. But i do have to tell you that your daughter will get better, even though it is hard to see it right now as you are overwhelmed and not know where to start.

 

I contribute my son's recovery to a comprehensive approach, including emotional, physical and environmental factors. I believe when one's nervous system calms down, then it can be more responsive to the appropriate treatments. In our experience, in the beginning, there wasn't one particular thing we did that made an obvious improvement, but as we get into various treatments, that's when we start to see substantial improvement.

 

So, do as much as you can possibly handle without driving yourself & your daughter insane. Unfortunately, the process takes time. However, your perservance will paid off and you will look back one day and be able to advice others on this board your experience.

 

In the beginning, i did find acunpuncture helpful. But we had to stop due to my son's fear of needles. Since my son was born with asthma and later developed nasal allergy, I decided to use NAET to desensitize him from his allergies. As a result he is asthma free. It also got rid of his chronic bloody nose. In regard to his tics, i didn't see substantial improvement until we treated some of the environmental allergies. In addition, chiropractic adjustment also helped reduced his tics. I suggest you try CST, because it is noninvasive and gentle and my son has good result from it. The key is to find a good practitioner who know what they are doing and with good intentions. I believe that is so crucial to one's healing.

 

Good luck and may you find the answer you are looking for soon.

 

Pat

[mom2three]

An update..

 

I still feel like I am in the same boat only I have calmed down inside a bit more. I am no longer freaking out.

 

My daughter is still the same. I am not even sure if they are tics? I mean I know they are but they aren't the kind she used to have.

 

She is still clenching her muscles very tightly. she is as stiff as a board.

She is so sensitive to everything. if you touch her or brush against her she reacts so strongly as she doesn't like to be touched at all. She says it hurts because her muscles are very sore. Which of course they would be since they are clenched tight constantly.

 

I noticed the other day that she was brusing very easily. She was sitting on the bench at her basketball game and just leaning her elbows on her knee area. When she stood up she had light bruises where her elbows had been.

 

I took her to the peditrician monday and they ordered up a bunch of blood work for her to figure out if something else is happening as she shouldn't bruise so easily.

I worry about what it could be if anything. Seems like everything we try leads to a dead end.

 

The doc ordered a test for her muscles too, to see if anything is off there as well.

 

To answer some of the questions that have been posted here,

 

She was diagnosed by a neuroligist to have tourettes syndrome back when she was in 3rd grade (around that age)

by then she had been ticing for well over a year both motor and vocal tics.

 

For the past few years things have been good. Tics were very mild or non existant.. She had been taking 300 mg of magnesium as well as a B-Complex 50 and an extra 50mg B6 vitamin as well as a good multivitiaman.

 

Then this fall she started ticing again. Mild at first but getting more and more as the weeks went by. I tried uping her vitamins as her body weight was more then when I had origianlly calculated the doses. But that didn't seem to help.

On NYE day she went into tic convulsions (not sure whatelse to call them) Her whole body was twisting as if she were dancing.

It was a HORRIBLE week after that.

She then began this terrible muscle clenching where she pulls her whole body stiff and holds it constantly.

She is very VERY moody.

She acts very young now, cries alot, is impossible to reason with and is very VERY OCD about so many things now that she really didn't care about before.

 

I have had her tested for strep, (yes blood titer tested) I have had her allergy tested for foods and eviromental stuff. She didn't show any allergies to food, but showed a lot of enviromental allergies.

We have her on allergy medication now and have tried to eliminate any of the allergy triggers but that has made NO difference.

 

I purchased the vitamins offered by Bonnie and she has been on them for almost 2 weeks now. This has made NO difference.

 

I am waiting on the blood work to comeback and if that doesn't show anything, I am not sure where to go from here.

 

I am not sure if taking her to a neurologist would help? What would they do for her? I don't want her on of medication if I can help it.

I have also thought of taking her to a child psychristist to see if that would help? maybe with the OCD stuff? Maybe with helping her relax?

But not sure if that would help or make things worse?

 

Basically we are just living one day at a time.

thankfully though I have my husband here who has been a big help when I have my melt downs (lol)

And I thank GOD everyday that both my boys don't show any signs of having these problems.

 

Hopefully we figure something out soon.

 

I have a thought though, If anyone is even still reading this (lol).. Sorry its so long.

Here is my thought..

 

She is 11 yrs old (12 in 8 weeks) Could this be hormone related due to puberty?

Could this onset and jump in tics be so excessive due to her getting ready to get her period? Her body hasn't really started to develop yet though so I don't think she is quite ready for the period yet.. But the hormones could be there right?

 

Oh I don't know..

I wish I had a magic book of answers.. This is all so frustrating.

 

Thanks to everyone who read this post and all who have offered their advice and help to me.

[colleenrn]

Hi. My daughter is 11 and was diagnosed with PANDAS at the age of five. The way they "discovered" PANDAS was studying Syndenham's Chorea, which is very similiar to PANDAS, but instead of just tics, there are more exagerated movements, possibly what you are describing with your daughter. The thing with Syndenhanm's Chorea is that is can show up months after a strep exposure and the blood titers for strep would be negative at that time. The behavioral issues are the same as PANDAS also. Just thought I would mention this in case you have not explored that possibility. Godd luck with everything. I know how stressful it is. Here is one link with more info.

http://www.wemove.org/syd/

 

Colleen

[itsme]

Hi Mom2three,

 

I read over your posts and i didn't see whether or not you "cleaned up the diet"?? Does your daughter get any msg's , additives, artificial anything?? She may have candida which is what me and my 2 sons have. This can exacerbate ts symptoms. Also, we use Bonnies vits, they can take several weeks before they actually start working.

[mom2three]

Hi Mom2three,

 

I read over your posts and i didn't see whether or not you "cleaned up the diet"?? Does your daughter get any msg's , additives, artificial anything?? She may have candida which is what me and my 2 sons have. This can exacerbate ts symptoms. Also, we use Bonnies vits, they can take several weeks before they actually start working.

 

She does get some things with those additives in there.

I haven't totally "cleaned" her diet up but I don't give her a lot of things either.