thank GOD for this site

[powerofprayer]

It has been an exhaustive day!! I found this forum today and have spent so much time on it. What a wealth of info! I am a little overwhelmed. Let me give you a background and maybe someone could send suggestions on where to start!

My 4 yr old daughter JUST started displaying a facial tic last week. It got much more aggressive as the week went on and now she opens her mouth to clench her teeth together as well as blinks her eyes really tightly and holds for a second. These tics happen OFTEN.....like every couple minutes now. I myself have sufferred from tics since i can remember. but it was never discussed in my home and therefore i have always been too embarassed to tell a dr. I am pretty sure I have full blown tourettes but who knows! right now i am not concerned about myself, just my daughter.

I have taken her to the ped who is referring us to a ped neurologist. (that may take 2-3 months though) any suggestions on things i can try in the meantime?

I have a question about magnesium....the kids calm i've read about on here. is that dosage the same for every child? Has anyone on here had success with only that? I've read a lot of Jeff's posts and feel he is a kindred spirit since he too suffers from tics all his life.

I have ordered the book that is recommended on here...forget the name now.....the one by Sheila Rogers (i think)

Should i talk about this with her at this stage? I thought since I suffer too and she obviously has seen me tic, that it may make her feel alright about herself.

This is probably a longshot.....those out there with lots of background in PANDAs.......I do want the testing done but am i wasting my time and getting her pricked for no reason if she hasn't had a strep infection in the past? As an adult could my tic/tourette problem have always been a PANDAs issue. i apologize for sounding soooooooo naive.

SOrry this post is all over the place. i know you all know the amount of stress i've dealt with these past few days and i'm exhausted. i think i'll try to get a good night's sleep and get back on here tomorrow to hopefully see some much needed suggestions.

 

Nadine

[lmcgill]

I believe Kids Calm has worked for us. We have had our eight year old on it for about six months and he does not tic that much now. We give him about half a teaspoon at night, he is only fifty lbs. He does get a little loose, but it is not a big deal. They say to start with a little less until their stool firms up and then give a little more.

This site has helped me get my sons life as well as mine back to almost normal. Of course I believe I didn't just stumble on it either. Now I feel strong enough to try and help others. We also have our son on b12 as well as L carnitine and taurine. I am not sure if they are all necessary, but he is doing so good now, putting on weight, happy etc.

Lenny

[itsme]

Hi Nadine, We have used "Bontech" vitamins for 4 months with some pretty good success. The website for these vits is http://www.bonniegr.com . We also took our son to an environmental Dr. to get blood test for food sensitivities, stool test for candida and immune function, urinalysis for amino acids and hair analysis for mineral levels. We got the results yesterday and found out there are some inbalances in his system. I believe as we work on restoring him to balnce he will tic even less. Also, I have had TS since age 11, i'm now 42. I too just had all of the testing done on myself and am awaiting results.

[Cum Passus]

Hi Nadine,

 

Welcome, My son is 13 and the Natural calm is what started the ball rolling in improvement for him. I think your daughter being only 4 should see some good results on kids calm.

 

I say that only because my son has other things to deal with at 13 (stress, hormones, ect..) so I would think younger kids have a good chance at improvement. (hoping they are still happy and care free)

 

My husband also has TS and our son really looks up to his dad. I think it helps to have a family member have Ts too. The child can see how normal the adult is, and I do believe it has helped my son not dwell on TS.

 

He has lots of friends, is a good athlete, and get good grades.

 

I'm so glad my husband has been this solid rock for our son to lean on. Things may have been different if he focused on his mother falling apart day after day for a year.

 

Good luck I think after the shock wears off you too will be the rock your daughter leans on.

 

As my husband says "TS... SO WHAT, AT 13 I'LL TAKE IT. BE HAPPY HE IS NOT ON DRUGS OR COMMITING CRIMES." Sometimes I need that rock to smack me upside the head.

 

C.P.

[bmom]

I was wondering about the dosage for kids calm. I started my 8 year old on it. I have moved him up to 1 1/2 teaspoons and his seems to be doing ok. Not loose only very occasionally. That is all he is on currently. He still tics some, but it is not noticable. Is that too much Kids calm? I thought he needed over 250 mg. When I lower the dosage I see other tics coming in.

[itsme]

Hi Nadine,

 

Welcome, My son is 13 and the Natural calm is what started the ball rolling in improvement for him. I think your daughter being only 4 should see some good results on kids calm.

 

I say that only because my son has other things to deal with at 13 (stress, hormones, ect..) so I would think younger kids have a good chance at improvement. (hoping they are still happy and care free)

 

My husband also has TS and our son really looks up to his dad. I think it helps to have a family member have Ts too. The child can see how normal the adult is, and I do believe it has helped my son not dwell on TS.

 

He has lots of friends, is a good athlete, and get good grades.

 

I'm so glad my husband has been this solid rock for our son to lean on. Things may have been different if he focused on his mother falling apart day after day for a year.

 

Good luck I think after the shock wears off you too will be the rock your daughter leans on.

 

As my husband says "TS... SO WHAT, AT 13 I'LL TAKE IT. BE HAPPY HE IS NOT ON DRUGS OR COMMITING CRIMES." Sometimes I need that rock to smack me upside the head.

 

C.P.

 

 

Hi C.P., Thanks for the earlier response. I notice the kids calm has no calcium, shouldn't it have calcium (the 2:1 ratio) to magnesium? Do you supplement the calcium seperately or do you not worry about it?

[Mustang Carole]

HI Power if Prayer,

 

While waiting for 4 months to see an neurologist who is going to perscribe drugs anyways for tics,

get an appt with Pedi Immunologist b/c they know more about PANDAS, etc. Another road is to get her to an allergist

while you are waiting for #1. Get all the information that you can, get copies of all dr reports, labs, and take them with you to every new dr to review!!!

 

Has your daughter had recent vaccines, has she been exposed to anything new to induce tics, like new meds for a cold,

been exposed to someone ill, family member ill, anyone at school with strep, does she have a low immune system, any recent travel to cause allergies from pollen, any new foods with addatives. Help me out here folks !!!

Support her while she is going thru this as she may be scared, but it sounds like you are a wreck yourself, We have all been there where you are, so hang in there!! You have found us and we will all help you, Keep reading the posting.

 

My Holistic dr recommends vitamin C to support the immune system and helps with elimination ( poops) to get rid of waste.

Give her lots of healthy foods without addatives, that means you cook the food, nothing boxed already prepped. fresh veggies and fresh fruits.

 

Keep us posted, please.

 

Happy Trails,

Mustang Carole \the horse, not the car

[Cum Passus]

Hi Itsme,

 

Yes, I do give him calcium, and zinc seperately. I had him on 1000mg calcium, 3 tablets= 1000mg, but I went down to 2 tablets because he drinks about 20oz of raw milk a day and a cup or more of kifer.

 

Zinc is at 50mg

 

C.P.

[LisaM]

Hello Nadine,

 

I too have a 4 year old who recently started with tics. You may find my original post and read more. Our son happened to have strep at the time so our doc ran an ASO titer (blood test) which can show the history of the strep antibodies to see if there was a strep infection in case I missed strep in her. You may want to have that done soon if you are concerned about PANDAS. There is another strep titer - Google PANDAS and Dr.Susan Swedo as she seems to be the one who actually named the condition. Find the NIMH site for good research. Read past strands here for lots of info on PANDAS, doctors etc.

 

I am trying to figure out the magnesium/vitamin thing as well. I found here somewhere a link to order kids calm and it explained dosages. I think you can start out with as little as 1/4 teaspoon at first. I have also learned about this Bontech vitamin with magnesium and other vitamins etc. but am not sure what to start with.

 

We too went right to a pediatric neurologist (read earlier post). Perhaps your doc can call the neuro's office to get you in earlier. Ours did that for us and got us in. She was concerned about her young age.

 

I am with you in the fear and panic. I haven't slept in weeks. This forum is very informative but can also be overwhelming. Hang in there. You may even find help for your own tics as well.

 

Lisa M

[powerofprayer]

I have read alot about PANDAs on here and I have requested my ped to the ASO titer while waiting. Im still waiting to hear from her if we can do that. Anyone know the name of the other titer? Am i wasting my time having this test done if she's never had a diagnosed strep infection?

to answer some q's...my daughter's last vaccine was a Hep A (#1) and a flu shot in dec' 06. As for being exposed to illnesses, Not that i know of. but can you ever really tell? Does anyone know how long it takes to be exposed to a "tic trigger" before tics develop? i wonder cuz right now i'm trying to eliminate the artificial colors b/c she does eat alot of "junk" but always has. so should i have seen anything "different" in her behaviour before now? My 21 month old daughter had an ear infection 2-3 weeks ago, but as far as I know that's not contagious is it? Her immune system seems to be fine. almost never sick as an infant/toddler. she did have a condition diagnosed at almost 3 yrs...VUR. she had to be on a prophylactic antibiotic for a year until they retested to find that it had cleared on its own (which is the usual case) so that antibiotic was last taken in december 06. the other thing that's been on my mind is that we recently installed laminate flooring over 800 sq ft. now if worry about formaldehyde emissions, but how would we EVER find out if that's a trigger. and if it is, what on earth can anyone do about that as i've read it's in all wood products.

so at age 4, should i be talking to her about her tics. I'm so worried she is confused/scared and if so that could make the tics worse couldn't it? She is normally an extremely happy care-free child!!

[bmom]

Hi Nadine,

 

Welcome, My son is 13 and the Natural calm is what started the ball rolling in improvement for him. I think your daughter being only 4 should see some good results on kids calm.

 

I say that only because my son has other things to deal with at 13 (stress, hormones, ect..) so I would think younger kids have a good chance at improvement. (hoping they are still happy and care free)

 

My husband also has TS and our son really looks up to his dad. I think it helps to have a family member have Ts too. The child can see how normal the adult is, and I do believe it has helped my son not dwell on TS.

 

He has lots of friends, is a good athlete, and get good grades.

 

I'm so glad my husband has been this solid rock for our son to lean on. Things may have been different if he focused on his mother falling apart day after day for a year.

 

Good luck I think after the shock wears off you too will be the rock your daughter leans on.

 

As my husband says "TS... SO WHAT, AT 13 I'LL TAKE IT. BE HAPPY HE IS NOT ON DRUGS OR COMMITING CRIMES." Sometimes I need that rock to smack me upside the head.

 

C.P.

 

 

Hi C.P., Thanks for the earlier response. I notice the kids calm has no calcium, shouldn't it have calcium (the 2:1 ratio) to magnesium? Do you supplement the calcium seperately or do you not worry about it?

CP-I was wondering about your story. When did your son begin to show signs? How did he do through the 10-12 years? My husband has had some tics since I have known him. Very mild though. My son has recently Feb. began doing tics and I am having trouble keeping it together for fear of the future of the progression.

[LisaM]

Nadine,

I don't know what to say about the talking with her about the tics. We have not really but she obviously hears what we say at the doc although we spell alot. We never say tic, we just spell. When she brings it up, especially at night when lying together in bed, she will ask about blinking etc. I just tell her it's ok that lots of kids do it, and if she feels like she has to make a movement it is fine. I recently have mentioned that we are all going to eat less treats. We have a very healthy diet to begin with but my kids do love their after dinner treats. We just have to change what they are. I'm not sure what the right thing to do is. Our daughter is very smart and aware and a little anxious to begin with. We are actually looking into a therapist for her to talk to etc.

Lisa

[Cum Passus]

Hi bmom,

 

If I really try to think I believe his tics were present at 9. I would swear he never ticked before that time.

 

Either I was deep in LA LA land or our son really did not tic much. I only say that because I homeschooled the child 3rd, 4th, & 5th grade. I know I would have noticed some ticcing during that time.

 

It was 2005 He turned 12 in Oct. had shots and started public school. Things exploded and I was a reck so I really feel your fear and also Nadine's. I just don't want anyone to wait as long as I did before finding help for their child.

 

 

Nadine, do give yourself time to grieve, I think that is so important. Once you have passed that grieving period you will be so strong.

 

Don't drive yourself crazy thinking about triggers that are hard to find or fix. Just see what you can do to see improvement now. It might take a week, month or longer, but you will find something to help her.

I know you will, this is coming from a mother who's son had an ear piercing screem for 5 months.

 

I was so upset about the shots being the cause for his triggers I spent 11 months in a shell and thought nothing would help him. And here we are a year and a half later and he is doing well.

 

God Bless you both,

C.P.

[bmom]

Hi bmom,

 

If I really try to think I believe his tics were present at 9. I would swear he never ticked before that time.

 

Either I was deep in LA LA land or our son really did not tic much. I only say that because I homeschooled the child 3rd, 4th, & 5th grade. I know I would have noticed some ticcing during that time.

 

It was 2005 He turned 12 in Oct. had shots and started public school. Things exploded and I was a reck so I really feel your fear and also Nadine's. I just don't want anyone to wait as long as I did before finding help for their child.

 

 

Nadine, do give yourself time to grieve, I think that is so important. Once you have passed that grieving period you will be so strong.

 

Don't drive yourself crazy thinking about triggers that are hard to find or fix. Just see what you can do to see improvement now. It might take a week, month or longer, but you will find something to help her.

I know you will, this is coming from a mother who's son had an ear piercing screem for 5 months.

 

I was so upset about the shots being the cause for his triggers I spent 11 months in a shell and thought nothing would help him. And here we are a year and a half later and he is doing well.

 

God Bless you both,

C.P.

Thank you. I was wondering how things went from 9-12? Were the tics mild? Ours began quite stongly and there was some stress in our lives so I was hoping that might be why. Not much, but his best friend had just moved. I was hoping it was a transient, but more have entered the picture and I am feeling like maybe not. I am just worried that they will come back strong again, but they have kind of mellowed for a month and I have started him on Kids Calm. It has been crazy. In the last 3 months we have taken him to UCLA hospital, neurologist, psychiatrist, pyscologist, alternative Dr. who did hair analysis, accupuncture, allergy testing and phone consult with Sheila. We have taken away Game boy, went drastic on diet, and now started supplements. They are somewhat minor, although I am wondering if it's because they are just not annoying-fist clenching, toe curling, flicking of tongue-hard to recognize but by me. I dont know if I should just see how it goes or continue. The hair analysis said-need calcium, magnesium, taurine, and multi. I am doing calcium in addition to kids calm, but am scared to add more. When I gave him Flax early on he broke out into rashes. I started him on multi, but that is when the tongue started so I stopped. It is still going. Thank you anyone for input. I guess I just needed to tell what was happening and see if anyone can offer input.

[powerofprayer]

Hi Nadine, We have used "Bontech" vitamins for 4 months with some pretty good success. The website for these vits is http://www.bonniegr.com . We also took our son to an environmental Dr. to get blood test for food sensitivities, stool test for candida and immune function, urinalysis for amino acids and hair analysis for mineral levels. We got the results yesterday and found out there are some inbalances in his system. I believe as we work on restoring him to balnce he will tic even less. Also, I have had TS since age 11, i'm now 42. I too just had all of the testing done on myself and am awaiting results.

 

 

HI itsme,

I am curious to find out what your tests show. Would you mind sharing them when you have them available? Have you EVER taken any traditional drugs for your TS.......or have you figured out any triggers? (for you or your son)