HELP with Bonnies Vitamins...

[myrose]

Hello to everyone and also THANKS to everyone on this board. Although this is my first time posting I have been reading these boards for quite some time now. The boards have helped me through some long long nights of depression and tears.

My daughter is 5, and she has tics. Quickly my story....

My daughter used to suck in her abdomen all the time...I think she was around 3 at this time. I first asked her why she did this and she just said I don't know. A trip to the doctors revealed nothing. It stopped and so I guess I just never thought about it again. Next I noticed she was curling her toes...I bought her a new pair of shoes thinking maybe her shoes bothered her and were even too small. This also past and was forgot about as well. Then it was the constant sniffing-- thought it was an allergy (we live in Florida) Lastly the eyes...constant blinking. I cut her bangs, and then off for an eye test. Then again this was forgot about as it just disapeared.

The one day while at pre-school her teacher called to say that maybe Gianna was not feeling well and that I should come to the school. This worried me and was very unusual so I rushed to the school. When I got there the teacher had me observe Gianna while she played in the sand (she did not know at this point that I was there) As I watched she was doing a very weird movement...its actaully quite difficult to explain so I will not try. I scheduled her for a doctors appointment the next day and was told to come back in 1 year if nothing changed. Well of course...nothing changed other than maybe things got worse. She had shoulder shrugs and then sort of a full body jump or jerk. Almost like if you stuck your finger in a electric socket. She started pre-K last year and for the first week of school we saw nothing. The second week the teacher noticed her. I then explained the situation and called to make an appointment with a neurologist. I did not realize we could have done this WITHOUT her doctors referral. We finally got in to see him (felt like forever) he ordered a 20 minute EEG in which showed abnormal. He then scheduled a 24 hour EEG and bllod work for Pandas. Orders were for ASO, Dnase-B Antibody strep B, and TSH. Her second EEG was normal and he said her bloodwork was okay. He then asked if I wanted to put her on medication and I refused. He then suggested 1/2 tab of melatolin before bed (she was an acrobat while sleeping)!

He diagnosed her as having a tic disorder and that was it.

 

All seemed okay but the tics then started to bother her. She began an arm tic that would make her arm move when she tried to write on paper. She was also crying when she thought someone would notice these things at a birthday party she was invited to. She calls them her "shakes" I felt helpless at this point and called the neurolgist again. I agreed only to clonidine and at the smallest dosage. I was told that this was not an addictive drug and that there were NO side effects. I tried this in a desparate state. I hated not being able to help her and not understanding how this happens to a perfectly healthy little girl. We did okay on the clonidine, it made her tics mild, took the edge off and sometimes were not even there at all. My plan was to take her off this medicine as soon as school ended and try more natural treatments. I continued to do my research over this period of time as well.

Then about 3 or so weeks ago she started waking up and kept saying she was having bad dreams. The medicine at this point seemed to not be working at all. (I have read about the wax and wane) but this went on for 2 weeks or so where she would just tic like crazy and everyone started to mention it again to me. I again called the neurologist to ask about the medicine and was informed that nightmares are indeed a side effect of clonidine. It does not happen to everyone but it did effect my daughter. I then told the neurolgists nurse that I wanted her off the medicine immediately. She instructed me to give just 1/2 tab for two weeks and then stop it. I refused other medicines similar to chonidine and made a decision to start Bonnies vitamins now instead of waiting until school ends. I just didn't want the tics to start up like crazy and have the other kids bring it to her attention or possibly tease her. I am so very worried about her self esteen right now. Anyhow coming off the clonidine has been crazy for at least us. She was more hyper than ever and had a melt down in school. I thought I might have heard some vocal tics as well. Some loud screetching and a few others. I notice she tried to hide them as well. Not sure why. I told her its okay no matter what she has to do...just do it. We just ignore it all as instructed.

Things have settled a bit and Wednesday will be her last day on Clonidine. I also wanted to mention something that was strange to me and that is that almost two weeks ago during her BAD tic time I had to take her into the doctors for a stuffed up nose that kept coming back. She was prescribed Nasonex and the day after spraying the nasonex in her nose her tics disappeared. They went from bad to nothing. I wasn't sure what was going on but I did not see any at all even during the first week of weaning from the clonidine.

The only thing she does now is sort of straighten her leg out when she walks. Almost looks as though her leg gives out when she is walking or maybe its that tic that is like a jump???? COMPLETELY CONFUSED! to say thew least.

Her neuroligist sees her again in May. He just keeps telling us to come back every 5-6 motnhs. In the meantime we have spent out of pocket close to $10,000 on the tests he ordered. (Thanks GOD for charge cards) Our private insurance at almost $500/month covers nothing on this. I am writing for two reasons....advice on the vitamins and why has she not been diagnosed with Tourettes?

 

I did read a little more on Pandas and was shocked to see the similar symptoms. Especially the clingy thing. She does not let me even go to the grocery store without having a meltdown. She says she will miss me! She also says she feels like she has to go to the bathroom all the time but produces nothing most of the time. I asked her if she knows when she has to go or not and she says it just feels like she does but doesn't. (not a bladder infection) There were a few other sypmtoms I read that desrcibed her perfectly but as I stated her bloodwork was okay????? Should I look into it further? She has never had strep throat that I am aware of but constantly used to complain of a sore throat for a bit. No fever or anything like that. I did take her in once and the check on her throat was okay. They did a culture when she was 3. Funny how right after that this all showed up..... Any advice would be greatly apprecaited on the pandas or tourettes....

 

As for the vitamins- I just received them two days ago and plan to start them the day after her clonidine stops. She is 5 years old and weighs 39 pounds. It states to take 10 of the TS Plus and then maybe 2-3 of the dph-epa. Also says to split up over the day.

my question is that it says to start with 1/4 of the recommended dosage. That wouldn't be 2 or 3 pills......HELP PLEASE on this and also what side effects to look out for with the vitamins as her body adjusts to them.

and how long should we wait to see an improvement. I ask this because I am told that they do not work for everyone and I just do not want to put her through a month of an explosion of tics if I do not need to (hopefully this will not happen when she is completely off the medicine)

I know this has turned to be a book I have written. I apologize for this. Its such an emotional rollar coaster going through this and not many people I try and talk to can relate or understand it.

I would take my little girl without arms or legs...I wouldn't care as long as I had her but my concern is for her now. I don't want her to be ashamed of herself. She starts kindergarden this year and I am just so worried right now that someitmes I feel like I cannot breathe!

Thanks again to all of you on this board. I am not sure where else I would have turned if it weren't for all of you. Thank You from the bottom of my heart! Sincerely, Wendy

[CSP]

Wendy,

 

Welcome, I really feel for you. My son was 12 when he exploded, and I was so worried, so I know just what you are feeling. We did try Bonnie"s vit. and it seemed to make things worse, but it was very hard to tell it seemed like nothing worked for him. Could have been because of his age.

 

I'm wondering if some of the moms and dads that have done Bonnie's started out with her vitamins or if they had tried other supplements first? Anyone do magnesium first or did you jump right into Bonnie's?

 

Have you done any allergy testing? Have you changed her diet?

 

My son was on the clonidine patch for a month and he had no reaction when we weaned him off that. His tics did not get any worse. I'll be praying that goes just as smooth for you.

 

God bless you and your family,

C.P.

[CarolynN]

Hi Wendy,

 

Boy I feel for you! I know how hard it is when you are trying to figure out how to get these tics under control. But you have HUGE CLUE her tics went down when using the Nasonex. Nasonex has a direct impact on lowering histamine levels http://www.spfiles.com/pinasonex.pdf (read I believe it was five paragraphs down). Histamine levels have a big impact dopamine levels. Elevated dopamine is the main reason for the tics occuring. So my point is if you can figure out what allergy is triggering her I think you will make major leaps. Don't just think it was a coincidence her tics subsided when using an allergy product.

 

I don't know if you read but I found that giving my son Benadryl decreased his tics. Here is my post regarding this http://www.latitudes.org/forums/index.php?showtopic=2946 . Have you considered giving her Benadryl, at night time since it makes people sleepy, to see if she has a reduction in tics? If you are concerned about any possible drug interaction, with the Benardyl, I am sure you could check with a pharmacist. It would be interesting to know if her tics decreased using it. I know I am not the only one of the forum who noticed a decrease in tics with Benadryl. You will read about that in the above mentioned post. Also please note a few people, like Chemar's son, have reactions to anti-histamines. So be aware to observe her for any increase tics, if you decide to try it, just in case she is one of the few who would react negatively.

 

Have you checked into NAET treatments for allergies? You can do a search on the forum and read the success stories with NAET helping reduce allergy symptoms with no medicine at all.

 

We use Bonnie's Grimaldi's TS-Plus and have had great success. However, if my son is exposed to those things that effect him Yellow 5 and 6, Red 40, MSG (major trigger), caramel color, vanillin, or high fructose corn syrup he still will have tics but not at the same intensity. So my point is it needs to be a combination of vitamins and diet change. Here is a link that explains the other vitamins we give my son http://www.latitudes.org/forums/index.php?showtopic=3010 . We started out the TS-Plus slowly and worked our way up to 10 a day. I would say I noticed an impact for him about a month after taking them but I know for some it is sooner and some later. I really believe the magnesium taurate in the product and the B-vitamins are very helpful!

 

I believe the reason some people react to Bonnie's TS-Plus is because of one of the B vitamins in it that some people do not tolerate well, I don't remember which one it is but perhaps someone can post this information if they know the answer.

 

Hang in there. Keep a log of what you think might be triggering her and make some observations. I really think once you can figure out her allergy/allergies you will make a massive leap forward in helping her. By getting those histamine levels down which will lower her dopamine.

 

By the way vitamin C is a natural anti-histamine. So giving her additional vitamin C would be great. The only side effect is taking too much can give you diarrhea.

 

God Bless,

 

 

Carolyn N.

[michele]

Hi. I am so glad you posted here. It sounds like you are going through a stressful time and it will help YOU alot to sound off here. I have been where you are with a little one having tics. It is frightening and embarrasing and frustrating to say the least. We have also been to neurologist after neurologist who say wait and we will see you in six months. In fact it sounded as if we were to the same one reading your post! I think the reason they won't diagnose tourettes or tic disorder is because of the age. My son just turned six in Jan. We have seen the neurologist for five years and are yet to get an official diagnosis from him. He did right one up for ADHD for school purposes though. I also was worried about kindergarten. It is a hard transition and my sons tics did get worse for a few months probably because of the stress. You are smart to begin supplements now and then maybe she will be adjusted to the supplements by fall. I started them in summer so that may have been part of his issue last fall. As the others have said keep a log of everything you have time to record. I take my notebook to every Dr. , meeting etc. Plus it helps you because if you go the natural route you become her personal Dr. The food elimination can really help. There is a GF book for kids that is so good by Lisa Lewis I believe. It discusses alot about reactions to foods and neurological issues. We follow the gluten free diet. That is the first step we took when we saw a DAN Dr. Then he started him on digestive enzymes AFP protease and natural lithium right off the bat and taurine for the dopamine excess. We deal with PANDAS also which means he has OCD issues and ADHD and tics with exposure to strep and virals. We also have the pee frequency problem during episodes and I think a yeast fighter helps with that. I also recommend a yeast free diet meaning low sugar. The Yeast Connection is another good book. I give him Nystatin which helps with the yeast and his behaviors too. If your daughter is having too much trouble with seperation and we did too, just take her out of preschool for the time being. My son had a rough four year old preschool teacher. Looking back she piscked on him instead of working with him. Try to reduce her stress. Has she had any trouble with fine or gross motor? We have had to go to occupational therapy. I wish it would have been recommended sooner. He has had a hard time in school with handwriting this year. This is going to be difficult for you because I am sure you are overwhelmed. Just read alot and post here with questions you have. We are here for you.

 

God bless and best wishes,

Michele

 

 

Hello to everyone and also THANKS to everyone on this board. Although this is my first time posting I have been reading these boards for quite some time now. The boards have helped me through some long long nights of depression and tears.

My daughter is 5, and she has tics. Quickly my story....

My daughter used to suck in her abdomen all the time...I think she was around 3 at this time. I first asked her why she did this and she just said I don't know. A trip to the doctors revealed nothing. It stopped and so I guess I just never thought about it again. Next I noticed she was curling her toes...I bought her a new pair of shoes thinking maybe her shoes bothered her and were even too small. This also past and was forgot about as well. Then it was the constant sniffing-- thought it was an allergy (we live in Florida) Lastly the eyes...constant blinking. I cut her bangs, and then off for an eye test. Then again this was forgot about as it just disapeared.

The one day while at pre-school her teacher called to say that maybe Gianna was not feeling well and that I should come to the school. This worried me and was very unusual so I rushed to the school. When I got there the teacher had me observe Gianna while she played in the sand (she did not know at this point that I was there) As I watched she was doing a very weird movement...its actaully quite difficult to explain so I will not try. I scheduled her for a doctors appointment the next day and was told to come back in 1 year if nothing changed. Well of course...nothing changed other than maybe things got worse. She had shoulder shrugs and then sort of a full body jump or jerk. Almost like if you stuck your finger in a electric socket. She started pre-K last year and for the first week of school we saw nothing. The second week the teacher noticed her. I then explained the situation and called to make an appointment with a neurologist. I did not realize we could have done this WITHOUT her doctors referral. We finally got in to see him (felt like forever) he ordered a 20 minute EEG in which showed abnormal. He then scheduled a 24 hour EEG and bllod work for Pandas. Orders were for ASO, Dnase-B Antibody strep B, and TSH. Her second EEG was normal and he said her bloodwork was okay. He then asked if I wanted to put her on medication and I refused. He then suggested 1/2 tab of melatolin before bed (she was an acrobat while sleeping)!

He diagnosed her as having a tic disorder and that was it.

 

All seemed okay but the tics then started to bother her. She began an arm tic that would make her arm move when she tried to write on paper. She was also crying when she thought someone would notice these things at a birthday party she was invited to. She calls them her "shakes" I felt helpless at this point and called the neurolgist again. I agreed only to clonidine and at the smallest dosage. I was told that this was not an addictive drug and that there were NO side effects. I tried this in a desparate state. I hated not being able to help her and not understanding how this happens to a perfectly healthy little girl. We did okay on the clonidine, it made her tics mild, took the edge off and sometimes were not even there at all. My plan was to take her off this medicine as soon as school ended and try more natural treatments. I continued to do my research over this period of time as well.

Then about 3 or so weeks ago she started waking up and kept saying she was having bad dreams. The medicine at this point seemed to not be working at all. (I have read about the wax and wane) but this went on for 2 weeks or so where she would just tic like crazy and everyone started to mention it again to me. I again called the neurologist to ask about the medicine and was informed that nightmares are indeed a side effect of clonidine. It does not happen to everyone but it did effect my daughter. I then told the neurolgists nurse that I wanted her off the medicine immediately. She instructed me to give just 1/2 tab for two weeks and then stop it. I refused other medicines similar to chonidine and made a decision to start Bonnies vitamins now instead of waiting until school ends. I just didn't want the tics to start up like crazy and have the other kids bring it to her attention or possibly tease her. I am so very worried about her self esteen right now. Anyhow coming off the clonidine has been crazy for at least us. She was more hyper than ever and had a melt down in school. I thought I might have heard some vocal tics as well. Some loud screetching and a few others. I notice she tried to hide them as well. Not sure why. I told her its okay no matter what she has to do...just do it. We just ignore it all as instructed.

Things have settled a bit and Wednesday will be her last day on Clonidine. I also wanted to mention something that was strange to me and that is that almost two weeks ago during her BAD tic time I had to take her into the doctors for a stuffed up nose that kept coming back. She was prescribed Nasonex and the day after spraying the nasonex in her nose her tics disappeared. They went from bad to nothing. I wasn't sure what was going on but I did not see any at all even during the first week of weaning from the clonidine.

The only thing she does now is sort of straighten her leg out when she walks. Almost looks as though her leg gives out when she is walking or maybe its that tic that is like a jump???? COMPLETELY CONFUSED! to say thew least.

Her neuroligist sees her again in May. He just keeps telling us to come back every 5-6 motnhs. In the meantime we have spent out of pocket close to $10,000 on the tests he ordered. (Thanks GOD for charge cards) Our private insurance at almost $500/month covers nothing on this. I am writing for two reasons....advice on the vitamins and why has she not been diagnosed with Tourettes?

 

I did read a little more on Pandas and was shocked to see the similar symptoms. Especially the clingy thing. She does not let me even go to the grocery store without having a meltdown. She says she will miss me! She also says she feels like she has to go to the bathroom all the time but produces nothing most of the time. I asked her if she knows when she has to go or not and she says it just feels like she does but doesn't. (not a bladder infection) There were a few other sypmtoms I read that desrcibed her perfectly but as I stated her bloodwork was okay????? Should I look into it further? She has never had strep throat that I am aware of but constantly used to complain of a sore throat for a bit. No fever or anything like that. I did take her in once and the check on her throat was okay. They did a culture when she was 3. Funny how right after that this all showed up..... Any advice would be greatly apprecaited on the pandas or tourettes....

 

As for the vitamins- I just received them two days ago and plan to start them the day after her clonidine stops. She is 5 years old and weighs 39 pounds. It states to take 10 of the TS Plus and then maybe 2-3 of the dph-epa. Also says to split up over the day.

my question is that it says to start with 1/4 of the recommended dosage. That wouldn't be 2 or 3 pills......HELP PLEASE on this and also what side effects to look out for with the vitamins as her body adjusts to them.

and how long should we wait to see an improvement. I ask this because I am told that they do not work for everyone and I just do not want to put her through a month of an explosion of tics if I do not need to (hopefully this will not happen when she is completely off the medicine)

I know this has turned to be a book I have written. I apologize for this. Its such an emotional rollar coaster going through this and not many people I try and talk to can relate or understand it.

I would take my little girl without arms or legs...I wouldn't care as long as I had her but my concern is for her now. I don't want her to be ashamed of herself. She starts kindergarden this year and I am just so worried right now that someitmes I feel like I cannot breathe!

Thanks again to all of you on this board. I am not sure where else I would have turned if it weren't for all of you. Thank You from the bottom of my heart! Sincerely, Wendy

[myrose]

Carlyn,

 

You made me smile after I read your post, I then linked back to some of your other posts and you gave me hope! Thank You so much from the bottom of my heart.

I see your so very determined to get to the bottom of all this...I feel the exact same way. I laughed when I thought of how many hours and how many nights I too was up until 2am. I still am now!

I ordered a few books just now and I am going to first start with some of your advice. I agree with the comments you made on the nasonex....I forgot to also add that the day before the nasonex I added a hepa filter in her room.

Anyhow let me know how this sounds okay.....(All the help and advice I can get would be much appreciated)

 

As I mentioned Gianna is weaning off from clonidine. Her last 1/2 pill was tonight (kinda scary) She also stops the Nasonex today as well. (Her Doctor told me to use it for two weeks)

I was going to start the Bonnies vitamins tomorrow but I am STILL not seeing hardly any tics at all so I am not going to go ahead with the vitamins just yet. I want to wait to see what happens while off the clonidine and Nasonex first.

If and when I see her tics come back I would like to try the benedryl for one night and see how this goes.

if I do see a difference and reduction I am going to go from there. If not I will start the viatmins as planned.

 

I just am afraid of doing too many things at once like I always seem to do and then I never know what really helped.

I have already made adjustments in most areas such as the diet, all natural cleaners in the home (including laundry detergent and fabric softner) You name it...I have changed it.

 

Can you tell me how your son is doing today? Also some tips in how to get the allergy testing started??

 

Thank You so much again....I can honestly say that as I go to bed tonight....its almost at a decent hour and I actually have some hope that I did not have yesterday... Thank You.

 

 

 

 

e name='Carolyn.N' date='Feb 6 2008, 02:55 AM' post='20316']

Hi Wendy,

 

Boy I feel for you! I know how hard it is when you are trying to figure out how to get these tics under control. But you have HUGE CLUE her tics went down when using the Nasonex. Nasonex has a direct impact on lowering histamine levels http://www.spfiles.com/pinasonex.pdf (read I believe it was five paragraphs down). Histamine levels have a big impact dopamine levels. Elevated dopamine is the main reason for the tics occuring. So my point is if you can figure out what allergy is triggering her I think you will make major leaps. Don't just think it was a coincidence her tics subsided when using an allergy product.

 

I don't know if you read but I found that giving my son Benadryl decreased his tics. Here is my post regarding this http://www.latitudes.org/forums/index.php?showtopic=2946 . Have you considered giving her Benadryl, at night time since it makes people sleepy, to see if she has a reduction in tics? If you are concerned about any possible drug interaction, with the Benardyl, I am sure you could check with a pharmacist. It would be interesting to know if her tics decreased using it. I know I am not the only one of the forum who noticed a decrease in tics with Benadryl. You will read about that in the above mentioned post. Also please note a few people, like Chemar's son, have reactions to anti-histamines. So be aware to observe her for any increase tics, if you decide to try it, just in case she is one of the few who would react negatively.

 

Have you checked into NAET treatments for allergies? You can do a search on the forum and read the success stories with NAET helping reduce allergy symptoms with no medicine at all.

 

We use Bonnie's Grimaldi's TS-Plus and have had great success. However, if my son is exposed to those things that effect him Yellow 5 and 6, Red 40, MSG (major trigger), caramel color, vanillin, or high fructose corn syrup he still will have tics but not at the same intensity. So my point is it needs to be a combination of vitamins and diet change. Here is a link that explains the other vitamins we give my son http://www.latitudes.org/forums/index.php?showtopic=3010 . We started out the TS-Plus slowly and worked our way up to 10 a day. I would say I noticed an impact for him about a month after taking them but I know for some it is sooner and some later. I really believe the magnesium taurate in the product and the B-vitamins are very helpful!

 

I believe the reason some people react to Bonnie's TS-Plus is because of one of the B vitamins in it that some people do not tolerate well, I don't remember which one it is but perhaps someone can post this information if they know the answer.

 

Hang in there. Keep a log of what you think might be triggering her and make some observations. I really think once you can figure out her allergy/allergies you will make a massive leap forward in helping her. By getting those histamine levels down which will lower her dopamine.

 

By the way vitamin C is a natural anti-histamine. So giving her additional vitamin C would be great. The only side effect is taking too much can give you diarrhea.

 

God Bless,

 

 

Carolyn N.

[CarolynN]

Wendy,

 

I was so excited to read your post. I am so glad that the information gave you hope. You have every reason to be hopeful. I really do believe, from everything I have learned over the past 1 1/2 years, that there are indeed answers and your daughters reduction in tics, on the Nasonex, is indeed very encouraging.

 

Shelia Roger's book "Tics and Tourettes" was such an inspiration to me. She has stories of people who finally had figured out what is "triggering" them and by getting on the right supplements their tics are greatly reduced. I by no means think tics are just a "happenstance". As so many people on this forum can attest, you can get to the root. Whether you can control every tic, that is very difficult, but you can certainly drastically reduce them. Never give up on thinking you have come to a dead end road.

 

My son Daniel is seven now. I first noticed tics at the age of 3. His tics are now very minimal. I really think my friends think I am crazy when I tell them he has tics. But I have 100% no doubt if I had not made the changes in his diet and added the supplements his life would be very different now. When he gets MSG in his system, which is by far his the worst offender, he cannot control his eyes and he cranes his neck. Now just think if I did not know this and had him on no supplements I would be feeding him a diet full of MSG (this is the American standard). I seriously do not even like thinking what his life would be like but by the Grace of God He has shown me answers!!!

 

Regarding the Hepa Filter, I think that is a great move to help with allergies. I have heard only great things from using them. I cannot remember where I read this, but I remember one mom posting that once she installed a Hepa Filter her child's tics reduced dramatically.

 

I think you are VERY SMART to make the changes gradually. As you said, otherwise it is very difficult to pinpoint what made the difference. I know I have a tendency to want to throw everything at Daniel just to make the tics go away. But ultimately that does not give a clear picture plus it is very $$$$$$$$$$$$. I would just recommend getting a journal and start making notes each day as you make changes. This way you have something to reference as to her progress or regressoin. I know, for myself, it is hard to remember details from a month ago and it is handy to be able to read my notes.

 

How to test for allergies? This is difficult for me to answer because I only know of one way and that is by doing NAET. Now that by no means that there are not other numerous ways to test, because I know standard medicine has methods, I just have been in the naturopathic world for the last 7 years of my life and am unfamiliar with those other tests. My son has gone through a process very similar to NAET called NEAT. What I love about it is it test for hundreds of allergies, with no pain, in just three office visit (environmental, foods, and chemicals). So I get answers very quickly as to what is bothering him and also in this treatment they desenstize you to those allergies with not medicine. They use accupressure. It is very difficult for me to explain but somehow it "tricks" the brain around the allergy. The unfortunate part for most people reading this post is this NEAT process is only in Arizona I believe. It is performed at Naturopathic Family Care (my doctors office) and by the Doctor who developed it Dr. Conrad Kail who also practices in Arizona in Scottsdale (I hope I spelled his name right).

 

Now with this said the, other system I referenced NAET, is not so fast in answers (this is just from my understanding I may be wrong). But I believe they hone in on various allergies and it takes much longer to go through the treatment. But I can say I have read many testomines that state it has worked for various people in desensitizing them. I think the key is getting a good doctor who really knows how to perform the NAET correctly. If you look at the website http://www.naet.com/ you can review the doctors who perform it and how many NAET seminars they have been through. The NAET doctors are all over the country and I believe in other countries too.

 

I can say, from my own experience, and those others I have refered to my doctor in Arizona (Her name is Dr. Orona at Naturopathic Family Care) that is really does work in helping desensitize the allergies. Unfortunately, for my son Daniel, the MSG, does not respond as well to this treatment. Dr. Orona told me this is because it is a "toxin" and not a true allergy.

 

I would suggest, if you need to get additonal information on allergy testing, starting a new post and ask people on the forum how they got to the root of what allergies where triggering them or their child. You might get a better understanding of what is available.

 

My last thought, is remember epsom salts baths (2 cups epsom salts). These epsom salts directly help the sulfation system of the body by riding toxins out of the system and this has a direct impact on tic reduction. You can also make lotion out of the epsom salts here is a quote from Karen DeFlice book "Enzymes for Autism and other Neurological Disorders" This is from her book page 244 I quote "Cheap and easy. Heat some Epsom salts with a little water to dissolve them. I put about one teaspoon of water in three tablespoons of salts and microwave for a minute or so. Add more water if necessary. Then mix this into around four ounces of any lotion or cream you like. I have used suntan lotion, hand cream, cocoa butter, body lotion, aloe vera cream, whatever I find that is on sale or inexpensive without the chemicals I am trying to avoid."

 

Keep up the hope!

 

God Bless,

 

 

Carolyn N.

[ilovedogs]

Carolyn,

I don't mean to hijack this thread at all but I was looking for a doctor who does NAET. And, I come across your post that says you go to a center here in AZ. I live in Glendale and have desperately been searching for someone to help us!

My naturopath just moved to Tucson so I'm looking for some help with my son's tics!

 

To the original poster: I just wanted to say that I understand. My son just started ticcing a few months ago and I'm doing everything I can to find out how to help him naturally without medications. I feel like I'm always in watch mode, wondering what new tic will be revealed each day. Praying you get the answers you need and find a doctor who can help you with the allergy testing!

[CarolynN]

Hello Fellow Arizonan:

 

I am in Goodyear. It was exciting to see your post and know that someone else is here near me on the forum.

 

Here is the information regarding the doctors I have used for my son. I have used two different ones. The first one is the one that does the NAET type treatments. I highly recommend her for allergies. I have referred many people to her. Her name is Dr. Orona (Naturopathic Family Care at 32nd Street and Thunderbird) 602-493-2273. To do the NAET type system it is a series of four visits I believe. The first is a general visit, the second is testing for environmental allergies, the third is for chemical allergies, and the last is for food. The whole treatment runs around $500-$600. The only other thing is she may recommend some supplements to help with allergies and she will suggest you go to a health food store or she will sell them to you at her office. She is familiar with tics in general but she I have found that in certain areas I have more information I have found by my own reading. She is amazingly good with children and I cannot say enough about her! Also when you are dealing with tourettes usually you are also dealing with allergy. So she would be a great option and she is just a great overall doctor too. She is hard to get into. You probably would have a least a months wait.

 

The other doctor who is great is Dr. Profluck. He is at Total Wellness and he is at 9887 W. Bell Rd. Phone number is 623-977-0077. He is VERY good and can tell you more then you can ever imagine on how the body works and what it needs. He is $200 an hour (yikes!). The reason I started going to him is my friend had SEVERE migraines to the point she wanted to die. She went to him, based on a recommendation of a mid-wife, and he immediately told her what to do naturally to get rid of them and it WORKED!!! So I called his office a while back to see if he worked with Tourettes and he had seen many cases. So I knew he was my guy in helping with the Tourettes in general not just the allergy portion of it. The only thing I will tell you, and my friend told me prior to going, is he looks slightly different. He has a real long beard. But I am telling you he is the nicest man you ever met and you feel like he is completely paying attention to every detail of what you say.

 

The other doctor, who I have NOT Gone to is Dr. Cindy Schnider (Spelling?). She is a DAN doctor and sees children with tourettes. She is $500 for the first visit. I think she is then $150 per 1/2 hour after. Her phone number is 602-277-2273. I believe you have to process your own claims through her too. My friend whose son has autism went to her and said she was really good. She ended up switching to Dr. Orona after she had all the blood tests done and had things more figured out for her son. Dr. Orona has been able to take her son to another level beyond what Dr. Schnider was able to do, but to get the ball rolling she would probably real good because she runs all the standard tests where Dr. Orona does some tests but is not familiar with all the ones standard done for Tourettes. Dr. Profluck has done no tests. It has all been verbal understanding and him telling me what supplements standardly work for tourettes.

 

I hope this helps. If you need any more information please don't hesitate to ask. Enjoy the sunny Arizona Day (I think we are in the high 60's for those of you in snow country! Just had to throw that in. I know in the summer you can make fun of us!)

 

 

Carolyn N.

[myrose]

Carolyn

Thansk so much for your replies and help. You are a true blessing to say the least! My computer line was down for a bit and I was going NUTS not being able to access these boards.

My daughter was weaned off from clonidine completely last Wednesday and she also stopped her 2 week course of nasonex the following day on Thursday. I was waiting for an explosion of tics to hit full blast. I was so scared! And had Bonnies supplements ready to go!

Strangely she has hardly had any tics at all. I keep waiting everyday...but nothing.

I am in the process of scheduling now for an allergist. Trying to find an environmental one. Seems to be the best and first step to take from here? Would you agree?

Thanks so much again for all your help. I also wanted to tell you that I did give her a bath in the epsom salts even though her tics were absent and I have to say that she slept like a baby that night and was SO CALM the next day!!! I am not sure if that was a coincidence or not?? Strange thoguh on her calm adn quiet mood. I also made the cream to have that ready as well but its on the watery side. Maybe I should add more cream to make it thicker??

 

Lastly...the only epsom salts I could find were scented with spearamint and euculiptis (or somethng like that) I am asking if thats okay to use when her tics come back or does it defeat the whole purpose with them being scented??

 

 

Thanks again and have a wonderful night! I hope Daniel is doing great as well!

 

 

 

 

Wendy,

 

I was so excited to read your post. I am so glad that the information gave you hope. You have every reason to be hopeful. I really do believe, from everything I have learned over the past 1 1/2 years, that there are indeed answers and your daughters reduction in tics, on the Nasonex, is indeed very encouraging.

 

Shelia Roger's book "Tics and Tourettes" was such an inspiration to me. She has stories of people who finally had figured out what is "triggering" them and by getting on the right supplements their tics are greatly reduced. I by no means think tics are just a "happenstance". As so many people on this forum can attest, you can get to the root. Whether you can control every tic, that is very difficult, but you can certainly drastically reduce them. Never give up on thinking you have come to a dead end road.

 

My son Daniel is seven now. I first noticed tics at the age of 3. His tics are now very minimal. I really think my friends think I am crazy when I tell them he has tics. But I have 100% no doubt if I had not made the changes in his diet and added the supplements his life would be very different now. When he gets MSG in his system, which is by far his the worst offender, he cannot control his eyes and he cranes his neck. Now just think if I did not know this and had him on no supplements I would be feeding him a diet full of MSG (this is the American standard). I seriously do not even like thinking what his life would be like but by the Grace of God He has shown me answers!!!

 

Regarding the Hepa Filter, I think that is a great move to help with allergies. I have heard only great things from using them. I cannot remember where I read this, but I remember one mom posting that once she installed a Hepa Filter her child's tics reduced dramatically.

 

I think you are VERY SMART to make the changes gradually. As you said, otherwise it is very difficult to pinpoint what made the difference. I know I have a tendency to want to throw everything at Daniel just to make the tics go away. But ultimately that does not give a clear picture plus it is very $$$$$$$$$$$$. I would just recommend getting a journal and start making notes each day as you make changes. This way you have something to reference as to her progress or regressoin. I know, for myself, it is hard to remember details from a month ago and it is handy to be able to read my notes.

 

How to test for allergies? This is difficult for me to answer because I only know of one way and that is by doing NAET. Now that by no means that there are not other numerous ways to test, because I know standard medicine has methods, I just have been in the naturopathic world for the last 7 years of my life and am unfamiliar with those other tests. My son has gone through a process very similar to NAET called NEAT. What I love about it is it test for hundreds of allergies, with no pain, in just three office visit (environmental, foods, and chemicals). So I get answers very quickly as to what is bothering him and also in this treatment they desenstize you to those allergies with not medicine. They use accupressure. It is very difficult for me to explain but somehow it "tricks" the brain around the allergy. The unfortunate part for most people reading this post is this NEAT process is only in Arizona I believe. It is performed at Naturopathic Family Care (my doctors office) and by the Doctor who developed it Dr. Conrad Kail who also practices in Arizona in Scottsdale (I hope I spelled his name right).

 

Now with this said the, other system I referenced NAET, is not so fast in answers (this is just from my understanding I may be wrong). But I believe they hone in on various allergies and it takes much longer to go through the treatment. But I can say I have read many testomines that state it has worked for various people in desensitizing them. I think the key is getting a good doctor who really knows how to perform the NAET correctly. If you look at the website http://www.naet.com/ you can review the doctors who perform it and how many NAET seminars they have been through. The NAET doctors are all over the country and I believe in other countries too.

 

I can say, from my own experience, and those others I have refered to my doctor in Arizona (Her name is Dr. Orona at Naturopathic Family Care) that is really does work in helping desensitize the allergies. Unfortunately, for my son Daniel, the MSG, does not respond as well to this treatment. Dr. Orona told me this is because it is a "toxin" and not a true allergy.

 

I would suggest, if you need to get additonal information on allergy testing, starting a new post and ask people on the forum how they got to the root of what allergies where triggering them or their child. You might get a better understanding of what is available.

 

My last thought, is remember epsom salts baths (2 cups epsom salts). These epsom salts directly help the sulfation system of the body by riding toxins out of the system and this has a direct impact on tic reduction. You can also make lotion out of the epsom salts here is a quote from Karen DeFlice book "Enzymes for Autism and other Neurological Disorders" This is from her book page 244 I quote "Cheap and easy. Heat some Epsom salts with a little water to dissolve them. I put about one teaspoon of water in three tablespoons of salts and microwave for a minute or so. Add more water if necessary. Then mix this into around four ounces of any lotion or cream you like. I have used suntan lotion, hand cream, cocoa butter, body lotion, aloe vera cream, whatever I find that is on sale or inexpensive without the chemicals I am trying to avoid."

 

Keep up the hope!

 

God Bless,

 

 

Carolyn N.