New and Confusede

[Decorah]

Hello everyone,

 

I'm another newbie although I have been "lurking" for a week or two. A quick introduction. My son has been diagnosed with TS. He is 7 and his symptoms started 15 months ago. His tics came on fast and hard and we went through the "is this epilepsy?" or what stage. After a sleep-deprived EEG and a review of our family history, which includes tics, he was diagnosed by a pediatric neurologist. We have not medicated as of yet. His tics have been, until now, mild. But they are intensifying and my daughter, age 5, is starting to show signs of facial tics. Neither of my children have had any of the accompanying issues yet of OCD or ADD. But I realize that these conditions may present themselves in the future. It has been a whirlwind of emotions for my husband and myself. The emotional ups and downs that I have read from so many other parents.

 

Before trying meds I'd like to try alternative treatments. I am fortunate to know another family that has used alternative treatments to treat a tic disorder with their child and they let me know about Latitudes. I have the back issues and have been digging through them. The information overload is hard to handle. Some of my concerns include; how to get my pediatrician to understand all of this and how to get going on some of the avenues of treatment. I went to one of these health food stores and looked at the vitamins and I just turned around and walked out. I was overwhelmed at the choices and I am very hesitant to start giving my son "up to 20 pills a day" when the products aren't uniform or prescribed. Does he need a nutritional workup first, so that I know what he lacks before I start adding things? This seems reasonable and yet I'm not sure how to find out what he lacks? What kind of doctor specializes in this type of analysis? Both my kids are good eaters, we already use a lot of organics in our cooking at home and I am not aware of any allergies in either of my kids. But I realize, after reading Latitudes, that they may have allergies and I am just unaware of their existence.

 

We already know that stress and emotional upheavals cause tics. (This seems universal across the board. ) And we try to keep life simple for my son. He also increases his tics if he is sick or exercising. I think he just feels free to release when he is running around. I guess we feel that we have a window of time, when my kids are young and not under too close scrutiny by their peers, to try to find some methods to help them before we have to try medical intervention. I'm just very leery about the vitamin protocols I am reading here in that I feel so unqualified to be a "prescriber". Any good links to information on this topic would be especially appreciated. We also use some, although not a lot, of typical household cleaners. I have bleach in the house and PineSol. What are the experiences of others out there on this issues? If I get a vaccum with filters, pull up all synthetic carpets and use air purifiers in the, will this make a difference? When he is exposed elsewhere on a daily basis?

 

I know I am asking a lot of questions. I have so many more. I don't have a goal of stopping the tics. There are so many and so often. But I would like to reduce them, understand them, and inhibit an increase if I can. My son is a beautiful boy, so happy and loving. He's not sure why this is happening and I don't have any answers for him that help. But he is not the strongest kid on the block and I think ridicule by his peers will be so difficult for him. I also have my own set of anxieties and fears which I need to deal with. Reading this forum and knowing others are out there with similar concerns is so helpful for me. Thanks for reading!

 

I don't have much experience with using this board so I apologize for typos.

 

Decorah

[mmazz]

Decorah,

 

You are in good company. I am also new but for the lack of experience, I can tell you that your love for your child is paramount. We all have been brought together by fate, and together we will overcome our fears for what life has in store for our children. My older son is an asthmatic and my younger son tics. They are people, who like me and you, are not perfect. I never had tics or any health issue, but in school I was made fun of. Children are cruel even if you are perfect. So get the notion out of your head that your child will be teased for his tics. Some children are over weight, others lose their hair before 18 and some are just beautiful. The thing that makes the most difference is the love and self esteem that they get from their family. Love them, love them and love them every time they tic. Do not fear it. I feared it for three weeks and that was three weeks lost of love I should have been providing but lost due to fear.

 

Medical help is great, but remember nutrition is best. Think out of the box. Medical doctors are taugt to provide help from pharmacutical companies and not anything about nutrtion. See a nutristionist or an MD with a nutrition background. The more informed you are about your childs makeup the better you can aid him/her. Medical doctors will stop symptoms and not the cause. Their time is to valuable to investigate every problem that come that comes accross the desk. Case and point my child had asthma and received a course of antibiotic for over four years before I went to an allergist and was diagnosed with asthma. It took maybe 4-5 doctors and a case of pneumonia (spelling?) and spitting up major blood before anyone real doctor took notice. Even my brother in law, who is an MD, perscribed antibiotics for an asthma attack.

 

There is no over night miracle, environmental changes and a full work up of your childs inner feelings, as well as his/her nutritional defeciencies will yield the information that you need to help them cure or at least cope with tics. If you need to than cry, if you need to than yell when no one can hear. But remember people like Chemar, Claire, Allison and me are here going through much of the same and ultimately life goes on...tics or not. I have used this site for info and support. It helped me knowing good people are here for me. I am here for you too! God bless you for the long road you must travel, but it is worth traveling.

 

Marie

[ad_ccl]

Hi Decorah and Marie,

 

I just wanted to say this does SUCK but there is help and hope and support. Chemar has many posts about what vitamins have worked for her. It seems the key ones everyone looks towards is the fish oils, Mag/Calcium and B complex - just wondered since you said his tics came on hard and fast if you have looked into PANDAS -which is what my son has been diagnosed with. Was he sick before the tics began? Does he have a history of strep infections? I connected with a naturopath which made me more comfortable in terms of what doses are safe etc. I live in Canada so we are connected to a naturopath, in the US it seems the DAN doctor is the connection to make. Claire will be able to give you more info on tests for food sensitivities etc.

I do agree your son's age is a good time to start trying alternative medications, kids his age are very oblivious, at least that is what I have found with my son - 61/2. Interestingly even when I did tell a few friends they said they had never notice, I could not believe it as his tics were constant and so pronounced - but I think we notice them because it is all we are looking for, I am trying to change this about myself as there is so much more to my son that how many times he has ticced in the last 5 minutes!

 

Marie - I have never been an overly religious type of person but I have to say your final line of your post actually brought me to tears. I seem to have reconnected a little with my spiritual side during this journey, starting the night before I was going to see the infectious disease clinic and prayed that someone there would know about PANDAS. The pediatric neurologist we saw the week before knew nothing about it. It was then that I understood why people pray and even ask others to keep them in their prayers as well. I have always felt things happen for a reason, although it is so hard at the beginning to figure out what possible good could come out from all of this. I am realizing already that my approach to feeding my children has changes and my new found believe in alternative medicine is very strong. I hope that my entire family will come out stronger and healthier after this ordeal.

 

Good Luck and keep us posted. Sounds like you are on the right track, it is overwhelming at first but things will become cleared as time goes on. If you have good health food/supplement store close by maybe they could help you - the first time I went to the drug store I went with a list of vitamins and probably search for 1.5 hours and left with only 4 bottles, it does take time. I had also taken a look at Bonnie supplement list which so many talked about but wanted to add things slowly so I used her info, the info from the forum and the info from my naturopath as a guideline.

 

Take Care

[Dara]

Hi Decorah & Marie,

 

My name is Dara and I'm also fairly new to this site as of early November 2004. Our son Karl (4 1/2) started eye blinking back in Nov 2003 which turned into full blown tics (coughing, clearing throat, throaty noises, eye rolling, nose wrinkling, head cocking left to right and front to back, abdominal tic, shoulder shrugging, pulling mouth downward and rolling lower lip down in April 2004 - wow what a list). I absolutly feel for you Decorah. I've been there. This last year has been something out of a bad dream and we've experienced feelings of sadness, anger, sympathy, terror, confusion, etc. Not to mention the stress it has put on our marriage.

 

After an initial grieving period when we realized our son truly had a diagnosed tic disorder, the emotions subsided a bit and I was able to get to work investigating what I could do for my son. It was about Karl not me and my emotional rollercoaster feeings. So, after seeing 7 different doctors in 7 months, reading, and finding this website, I finally felt like I knew what I needed to do for Karl, at least somewhat.

 

I found our Environmental Physician from the back issues of Latitudes. I also called Sheila Rogers to see if she knew anything about him. We struck gold. The doctor, Dr. Majid Ali from Denville, NJ was exactly what we needed.

 

After our first meeting, he put Karl on a strict diet, no sugar, no dairy all organic and ran blood tests for food sensitivities and inhalant sensitivities in addition to a urine test.

 

Karl's food sensitivity tests came back positive for sugar, eggs, milk and oranges (3 out of the four are his favorite things to eat) in addition to being allergic to mold, yeast and fungus. Dr. Ali put Karl and a full supplement regime and prescribed sublingual drops to treat the inhalant allergies.

 

The first four weeks were terrible and Karl's tics actually got worse. We stuck to the program and by the fifth week, we started to see some change. The tics didn't go away completely, but they were definately less. Since we thought it might just a waxing and waning of the tics we held tight, waiting for a new one to pop up or for the current ones to get worse. As of today, two months into it, Karls tics are still milder than they were before we started the program. In fact, I've been keeping a log and on several occassions, they were barely noticeable.

 

We pray that we've found the right solution for our son and just take one day at a time. Your first step should be to find someone like Dr. Ali and then take it from there. Hopefully we can all learn from each other during this journey of healing our children.

 

Dara

[mmazz]

Hi to all.

 

Well the 7 days of no screen ended yesterday. I let him watch an LCD TV in his room with the lights on....he requested to be alone while he watched and sure enough he blinked but not as severe as before. Mothers always notice more. The great thing about it was that after a half hour, he shut the TV and wanted to play the games with me that I was using to keep him away from the TV. THe silver lining here is my relationship with him, it has actually grown stronger for it. I can't help but think if he did not tic and things remained the same, what would the future be like for him and I? Allison, things do happen for a reason.

 

Marie

[Gina]

Hi Decorah,

 

I read your post on the 6th and wanted to reply but I have been sooo busy. Things have finally mellowed out. As I was reading your post I was saying to myself that sounds just like my story a few years ago. Sometimes its just nice to know others can relate and your not alone....

 

I just wanted to say my son who is now 9 1/2 yrs old with TS also had symptoms that came on hard and strong just like you had mentioned in your post. It's not often that I hear that. He was 6 yrs old at the time and one day we were out at a museum and all of a sudden his leg was kicking out and with in 5 min. his arms started. We had to leave and went straight to the Dr's. We did not have to go through the "what is it stage" because my Husband also has TS so we knew what it was. But my Husbands is so minor that most people don't even notice it (a throat clearing and slight hand twitch at times and thats it) He wasn't even diagnosed until he was about 20 yrs old. I was not expecting anything more than that for my son so we were definately scared and worried with what we saw.

 

I than took that crazy ride on the old emotional rollercoaster as we all do and than things start to mellow out and you get back in control.

 

I too read the posts here for months befor posting and almost a year befor giving my son any vitamins for the same reasons you mentioned. I walked in health food stores and also left empty handed and sometimes in tears because it was like another language that I just couldn't grasp and also I was very concerned about giving these to a 6 yr old child.

 

After reading as much info here and doing my own bit of investigating I did decide to do what I thought would be the least advasive way to go and that was to change his diet. It was also somthing that I could do while I was still trying to understand all the vitamin stuff. I stopped all artificial flavor and color, Anything with corn syrup, most preservatives, nitrites/nitriates and watched the sugar (he never was allowed caffiene so that was not as issue) and I try to go as organic as possible. I figured that none of that was doing him any benifit so taking it away was not going to harm him in any way. It was however a bit hard for my son to understand these changes at 6 yrs old. It was also a lot of my time reading labels and figuring it all out at first. But now its how I shop and its normal for me. I found out that most of the regular grocery store items were not going to work so I did most of my shopping at Whole Foods Market and Trader Joes (if you have access to those or anything like them thats your best bet) Most of the big grocery stores here in Califonia now have a Natural Foods section which is helpful. This change in his diet helped tremendously. I am a true believer of staying away from all that junk! I did eventually move onto the vitamins and with the help of people here it wasn't as foreign as I once thought.

 

I also wanted to say I would lose sleep at nights just waiting for all the other disorders/syndroms that are supposed to come along with TS to appear (ADD, ADHD, Learning Disabilities, OCD etc...). Everything I read would have this all together and I can remember just watching my son like a hawk waiting for them to appear and every little thing he did that didn't seem normal would freak me out. But I have come to realize that what my son has is TS and thats it. He has none of the other issues. I do realize that things can change but I don't wait for it to happen anymore. My son is at the top of his class (straight A's last report card) he has a great bunch of friends that know of his TS and support him. He lives a very normal life for a 9 year old boy. He just tics every now and than.

 

I hope this makes you feel a bit better. Just keep on reading the info here and asking any and all questions you have.

 

Best of luck,

Gina

 

ps/ I also have a daughter 2 years yonger than my son and every now and than there are little tics that I notice but they seem to always go away. You know as a parent of a child with Tourettes we notice more than we need to sometimes. We make it harder on ourselves.

[Gina]

Hi Decorah,

 

I read your post on the 6th and wanted to reply but I have been sooo busy. Things have finally mellowed out. As I was reading your post I was saying to myself that sounds just like my story a few years ago. Sometimes it’s just nice to know others can relate and you’re not alone....

 

I just wanted to say my son who is now 9 1/2 yrs old with TS also had symptoms that came on hard and strong just like you had mentioned in your post. It's not often that I hear that. He was 6 yrs old at the time and one day we were out at a museum and all of a sudden his leg was kicking out and with in 5 min. his arms started. We had to leave and went straight to the Dr's. We did not have to go through the "what is it stage" because my Husband also has TS so we knew what it was. But my Husbands is so minor that most people don't even notice it (a throat clearing and slight hand twitch at times and thats it) He wasn't even diagnosed until he was about 20 yrs old. I was not expecting anything more than that for my son so we were definitely scared and worried with what we saw.

 

I than took that crazy ride on the old emotional roller coaster as we all do and than things start to mellow out and you get back in control.

 

I too read the posts here for months before posting and almost a year before giving my son any vitamins for the same reasons you mentioned. I walked in health food stores and also left empty handed and sometimes in tears because it was like another language that I just couldn't grasp and also I was very concerned about giving these to a 6 yr old child.

 

After reading as much info here and doing my own bit of investigating I did decide to do what I thought would be the least evasive way to go and that was to change his diet. It was also something that I could do while I was still trying to understand all the vitamin stuff. I stopped all artificial flavor and color, anything with corn syrup, most preservatives, nitrites/nitrates and watched the sugar (he never was allowed caffeine so that was not as issue) and I try to go as organic as possible. I figured that none of that was doing him any benefit so taking it away was not going to harm him in any way. It was however a bit hard for my son to understand these changes at 6 yrs old. It was also a lot of my time reading labels and figuring it all out at first. But now its how I shop and its normal for me. I found out that most of the regular grocery store items were not going to work so I did most of my shopping at Whole Foods Market and Trader Joes (if you have access to those or anything like them that’s your best bet) Most of the big grocery stores here in California now have a Natural Foods section which is helpful. This change in his diet helped tremendously. I am a true believer of staying away from all that junk! I did eventually move onto the vitamins and with the help of people here it wasn't as foreign as I once thought.

 

I also wanted to say I would lose sleep at nights just waiting for all the other disorders/syndromes that are supposed to come along with TS to appear (ADD, ADHD, Learning Disabilities, OCD etc...). Everything I read would have this all together and I can remember just watching my son like a hawk waiting for them to appear and every little thing he did that didn't seem normal would freak me out. But I have come to realize that what my son has is TS and that’s it. He has none of the other issues. I do realize that things can change but I don't wait for it to happen anymore. My son is at the top of his class (straight A's last report card) he has a great bunch of friends that know of his TS and support him. He lives a very normal life for a 9-year-old boy. He just tics every now and than.

 

I hope this makes you feel a bit better. Just keep on reading the info here and asking any and all questions you have.

 

Best of luck,

Gina

 

ps/ I also have a daughter 2 years younger than my son and every now and than there are little tics that I notice but they seem to always go away. You know as a parent of a child with Tourettes we notice more than we need to sometimes. We make it harder on ourselves.

[mmazz]

Gina,

 

Thanks for the post. Today it has been hard for me since my son was exposed to computer class yesterday and now is tic-ing a little more. We would all like a crystal ball to see into the future, becuase that is what we are all fearing. So thanks for posting and painting a nice picture.

 

Marie

[Decorah]

Thanks to all of you for your supportive advice. I am still so perplexed by this syndrome. There is no connection between the severity of the tics as it is passed down through the genes, nor is there any "normal" course of the disease once it is diagnosed. So I'm wondering, out loud so to speak, whether most of you on this forum believe that TS is a syndrome with symptoms we can control through alternative methods of treatment or whether our kids are somehow "allergic" to things in the environment which then cause tics. I'm just trying to get the big picture. In our case, we have family history. I never knew about the history until my son presented with symptoms but here we are nonetheless. So is there a consensus on whether alternative treatments work better for kids with genetic history of TS or for those without?

 

Again, I have found all the comments helpful. Especially those regarding my daugther. I am so overvigilant.

 

Today was a good day. My son participated in a chess tourney all day and had lots of fun. Tics and all!

 

Decorah

[Claire]

Decorah,

 

I am very curious as to what the EEG showed. Did they do the stroboscope test for photosensitive epilepsy as part of the test? I posted a link on a TV/computer thread that 8% of the non-epileptic population has an abnormal reaction to flicker based on stroboscope tests--which I believe are sleep deprived. Many (not all) of our kids have some photosensitive reactions (e.g. to TV at 60 hz flicker or flashy computer games), but in the form of tics not seizures--e.g. our kids seem to be part of that 8%.

 

You are the first parent that I have seen post with a child with tic syndrome who actually had a formal sleep deprived EEG, so if they did do the stroboscope test, I would greatly appreciate your posting whether they picked up abnormal patterns (though obviously not epilepsy). I would assume that this would mean you would have hard evidence if your son had photosensitivity via tic or not. (meaning you would know if screens triggers tics or not). Many of us had to figure it out through trial and error.

 

-----------------------

 

As to your questions on TS vs tic syndromes, no, the alternative/natural treatments are the same. As to which works better, natural or pharmaceutical, based on this board and Braintalk, (no studies exist), the natural methods are much better solution in terms of both success rate and side effects. Worse case the natural treatments go nowhere, but worse case for meds I hear posters talk about shakes, hallucinations, and other horror stories.

 

As to the issue of supplements, I was scared to death of them. I considered more than a multi-vitamin to be medicine. Not everyone feels this way, and I never got past it. So I went to an MD listed at the thread at the top of the forum (he was a DAN and EM doctor). He ran a series of tests, then I found out more through my research and these forums and he ran them also. Our entire supplementation program is based on known issues which require very specific supplementation. I felt more comfortable with professional guidance.

 

Having said that, I respect that not all parents have a choice. For either financial reasons or logistics (no local doctor), they need to do trial and error.

 

But here are some tests:

Spectracell.com for vitamin and antioxidant deficiencies

Labcorp.com for zinc/copper issues

gsdl.com elemental analysis for metal (too much mercury/lead requires supplements to detox or chelate)

pyroluriatesting.com for pyroluria, which needs B6/zinc

greatplainslaboratory.com for yeast overgrowth, requiring anti-fungals.

 

This is a subset, we have plenty of threads on tests people do. Supplements are only one aspect of course. Diet and removing triggers is another.

 

And yes, we changed house cleaning products and do airfilters etc...I can't say what it did to my son, but I used to be miserable when the housekeepers came. It affected my breathing all day. Now I feel great! Others here have commented on impact on the kids. But to me, that is the easy stuff (assuming finances are okay). It is the lifestyle changes, e.g. if certain foods are an issue, or if supplements are required (which is highly likely in the near term--especially if any malabsorption issues are present).

 

Good luck and I hope you read the threads here.

 

Claire