New Member Needs Suggestions

[Dara]

Hi Everyone,

 

I'm one of the newer members (I found this website on November 2nd) and I need HELP!!! Just to recap our situation, our 4 1/2 year old son Karl Henry began eye blinking last November. By April of this year the eye blinking turned into a full facial tic (severe eye rolling, blinking, grimacing, and pulling the mouth down). By July, after being on several homeopathy remedies, the facial tics subsided, but was replaced by a vocal tic which almost sounds like he's trying to clear mucus from his throat. Throughout this time period he also had/has coughing, sniffing and clearing of the throat. As a side note, since 1 1/2 years old, Karl has banged his head face down on his pillow when trying to fall asleep and up until 3 1/2 years of age was unusually irritable, grumpy and in general, not a pleasant child to be around. On several occasions he made me cry hysterically as a result of his behavior.

 

From April through September we took Karl to three Pediatric neurologists (we live in Central New Jersey) at Robert Wood Johnson hospital, The Childrens hospital of Philadelphia and NJ Medical Center, and also saw an allergist, nutritionalist and a homeopathy doctor.

 

September 1st came and within one day a severe abdominal tic started which happened every 30 seconds to a minute. If Karl was walking while having this tic, each time he tic'ed he would cross his right leg in back of the left leg and almost fall down. We were so upset and distraught to see this happening. The ab tic subsided within a week and since then we have only seen it in a mild form.

 

After talking with Sheila Rogers and reading all the back issues of Latitudes, I came across a Dr. Majid Ali (an environmental physican) who runs the Institute of Preventative Medicine in Denville, NJ. Has anyone had any experience with him? He's mentioned quite often in Latitudes and has written several books on neurological disorders. Anyway, we were able to get an appointment with him within a two week period. I wasn't overly impressed with the office, but did feel he was on track and willing to work with us.

 

Dr. Ali took a medical history on Karl Henry and did the following bloodwork: allergies rast enzyme, inhalants/foods, T4/T3 uptake/TSH, CBC, and Chemistry w/HDL (I took the wording right from the paperwork we received). Poor Karl Henry was so traumatized - the young nurse couldn't find his vein so Dr. Ali finally had to come in and do it himself- I left the room because I couldn't bear to hear his screaming). We have our next appointment with Dr. Ali on December 6th, to discuss the findings of the bloodwork. At this meeting I must also bring a first morning urine sample to test for metals I believe and at some point he also wants us to do a 24 hour urine collection.

 

Right away Dr. Ali wanted us to cut out ALL sugar and dairy and stick to a strict diet. Basically Karl Henry can't eat anything - ha, ha. In addition to the above, he prescribed the following supplements. Some of these supplements, I believe are manufactured for him - Dr. Ali's own concoxtions:

 

Bowel 1 - Acidophilus - 2 tsp 2x/day

Bowel 12/TPM 2 pills 1x/day

Soy/Rice Protein 1 tbsp 2x/day

Ground flaxseed 1 tbsp 2x/day

Lecithin 1 tbsp 2x/day

Anti-Stress pill 2x/day

Cal/Mag pill 1x/day

Memory pill 2 pills 1x/day

Q-10 Melt 1 pill 2x/day

Aloe water 2 oz. 2x/day

Nystatin 1 tsp 3x/day (2 weeks on/2 weeks off)

 

At this point I'm TOTALLY overwhelmed. All I want is for my son to get better. We implemented the diet, right away but are still finding it hard not to give him ANY sugar. Even the best products at the healthfood store contain evaporated cane juice/sugar and malted barley. Our son is an excellent fruit/vegetable eater so at least we're getting those things into him. How do I get the protein powder, ground flaxseed and Lecithin into him. I've tried blending it with stevia, vanilla soy milk and ice cubes but he refuses to drink it. Also, since he's not supposed to have sugar, the vanilla soy milk has naturally milled organic evaporated cane juice and defeats the purpose. Any suggestions??? We have been able to get the aloe water, Nystatin and the Q10 melt into him. And just yeaterday, I was able to grind the Cal/Mag pill up in a coffee grinder and slip it into his orgainic juice (yes juice - he's not supposed to have that either). When we go back on December 6th I'm going to have to find out if there are substitues in liquid or powder form that I could possible use. How do you folks get all of these supplements into your children? Karl Henry is only 4 1/2 years old and is not able to swallow pills.

 

My poor son, I feel so sorry for him. I didn't want to send him to pre-school this morning because he has a new tic as of the last couple of days. He bends his head, puts his chin on his chest and moves his head from left to right. There's also shoulder shrugging that goes along with this one and lots of eye rolling. I haven't been able to read much to him during these last couple of months because it seems to increase his eye rolling. We do read at night while lying in bed, as this doesn't seem to be as stressful for him.

 

I've been reading a lot about TV as a trigger. At this point, I already feel like the meanist mom in the world for limiting his diet and making him take all of the supplements. This might sound like a riduculous question, but should I cut TV out for a week all at once right now, or should I ease into it? Karl and his younger brogher Graham watch TV for 1 hour before school, 1 hour after school and sometimes before dinner. Gosh, that sounds really pathetic doesn't it?

 

Thanks for letting me get this all out, I really don't have anyone that I can talk to about this other than my husband and none of our friends have experienced what we're going through. It's so nice to talk with people who understand. Are there any New Jersey, New York or Pennsylvannia people out there? I would love to hear what doctors you've had experience with.

 

I welcome all comments. One more thing. I'm really impressed with the amount of time some of you spend on this forum. I'm so exhausted at night that I couldn't chat even if I wanted to. I would like to become a more frequent visitor to this website.

 

Thanks again.

 

Dara

[Ronnas]

Hi Dara,

 

I don't know if I have any advice but just wanted to let you know that I hope you see some results from everything you are doing. I do know and remember well how overwhelming all of this is.

 

Did the doctor really mean...no sugar at all. Maybe he meant no sugar as in all artificial junk etc. Overall it may not be realistic to expect total elimination of all sugar. My son responds really well to the elimination of milk, corn, eggs and chocolate but there are times that he gets some of these. Over the long term the diet is more manageable if I am not strict ALL of the time. For example, I am pretty strict at home but when we are at my in-laws I let him have what he wants (within reason). Eliminating milk has been the number one important thing for my son.

 

I have said this in the past and it is just my own personal opinion that changes in diet, adding supplements etc should be done one at a time. It may take longer this way but in the end you will know what is helping, what is not, and what is making things worse. As well I think it is just too overwhelming for a 4 year old to do it all at once. At one time I went nuts trying everything and in the end had to back up and start over slowly.

 

My son could swallow pills at 4 years old...it takes some practice...I know you are not suppose to have any sugar but I taught my kids how to swallow pills with M&M's.

 

I know this seems overwhelming but you are on the right track. I did the no TV cold turkey but everyone is different...go with what you think...maybe ease up on it this week...ie. no TV in the morning. We did have very good results from eliminating screens!

 

TAke Care,

Ronna

[Guest Jeff]

Dara, In our family, we have found artificial colors and flavors to be triggers for our tics. We follow the Feingold program (feingold.org), and the tics are not an issue as long as we stay pretty clean in our diet. The Feingold program eliminates all artificial colors and flavors as well as the preservatives BHA, BHT, and TBHQ. Sugar is not eliminated on Feingold, and is not a problem for us.

I wish you the best.

[Claire]

Dara,

 

Disclaimer: If you read my posts, you will see my bias, as sreen elimination completely resolved our tic problem very quickly. Only after the screen elimination did we begin diet change to allow longer term healing of the gut.

 

We went months with virtually no sugar, plus anti-fungals and the yeast overgrowth got worse anyway. My point is, though I know yeast is key, the no screens seems to be providing quick relief much much faster, allowing you to gradually experiment with diet changes.

 

If doing both no screens and food restriction is too much at once (and you must go with your gut on that one), I personally would temporarily stop the food restrictions (other than no artificial ingredients--you can have fresher, better tasting food without it anyway) and just do no screens for one week. At 4.5 years old, can't your TV/computer just not work for a while? Sometimes this is much easier than 'taking it away' from them--they start to feel punished. With an older child of course, it isn't so simple.

 

There certainly is no harm in delaying the food by a week, and it will allow you to get a clearer picture of what your child's triggers are. With Marina's recent success, we now have 14 of 16 people who tried this showing significant to dramatic improvement within a week. I have moved my stance from suggesting this to STRONGLY recommending it. However, I still think that for a young child at this stage, it is best not to even mention the association with tics--much better to just somehow have it not available for the week. It is so traumatic for some that I think it overemphasizes the tics at this age and makes them feel badly about themselves. Just get some great book tapes with picture books at the library instead. If it works, and you have the $$, you can replace your 'broken' TV with a new LCD monitor (TV/Computer) and just have family rules about how long they can watch it and how far they must be from the TV (we had all those rules growing up anyway!).

 

This one step at a time will also allow you to identify primary vs secondary triggers, so that you don't unnecessarily restrict your son. If no screens doesn't help, then no need to limit them at this point. Often the photosentivity doesn't develop until 7 or 8 (as in the case of photosensitive epilepsy), so this may not even be an issue at this point. But for a young child it is so easy to fix if it is.

 

Yeast is tough to eliminate. Our doctor didn't say no sugar, he said as little sugar as we needed to still get food into our son.

 

Straws help in learning to swallow pills. We dumped capsules into smoothies for a time, but it was tough going.

 

With bloodwork, we ALWAYS get the topical anesthetic --it really helps. And now we drink lots of water 2 days before to raise blood volume and minimize impact.

 

Good luck, and if you do the no screens week, please post either way.

 

Claire

[Evangelia]

Hi Dara,

 

I can totally relate to how overwhelming everything can get. I just have to tell you, it WILL get better! It is just a matter of time before you find the proper combination of things that work for your son.

 

I started with all the eliminations and supplements almost 2 months ago. My son is almost 6 years old and his tics were very hard to watch. He would jump up and wave both arms in the air every few SECONDS! I was also devastated. His tics are now alot better; less in frequency and intensity... he does not jump or wave his arms in the air - some shrugs. I look forward to the day that I can say that they are "not an issue any more". On some days, I have to make it a point to observe if he is ticing. I know that I am getting there and that it takes time to repair the intestines so that they can accept food and absorb the nutrients that the body needs to function properly.

 

I can't believe that I am in a position to help someone else with this. I am very humbled..... as I am still learning everyday.

 

1. Supplements

My son gets all his supplements in a form of a shake. We call it the "vitamin shake". You mentioned that your son is a big fruit and vegetable eater, have you considered buying a juicer? You can juice carrots (hopefully you are allowed them) and then add all the vitamins to it. Grind them if they are tablets, if gel capsules - pour them in, if powder capsules - open them and pour them in. I put all vitamins in the shake - it's quite a cocktail!. My son doesn't like to swallow vitamins either - but this was worked for us.

Try a reward system to help him along - stickers, toys etc.

 

2. Regarding Vanilla soy milk, I found that my son's tics increased with it. It is very likely due to the other ingredients added to it - For example vitamin A Palmitate (spelling?) is an artificial vitamin A - Feingold says that this has salisylates in it. I use "So Nice" organic soy milk (ingredients:Water, Whole soybeans). I added pure vanilla extract and stevia. I haven't seen an increase with this soy milk.

 

3. Flaxseed

I grind a whole bunch of flax seed and keep it in the freezer so that it is handy. I put it in almost everything that he eats - in his pancakes, in his muffins, in his cream of rice, sprinkle it on his rice pasta, etc. I also disolve 1 tbsp ground flax seed in 3 tbsp hot water and use it to replace eggs in recipes.

 

4. No Screens

My TV "broke". This way, I didn't have to stress my son about it nor battle over the TV watching. It was just accepted and we did other things. I only recently re-introduced TV after more than 5 weeks of no TV.

Claire, as an FYI, I did notice that at first when he got re-introduced to the TV he suddenly started ticcing alot more during TV. My husband bought a Sponge Bob video (!!!! didn't need that) and my son watched for a long time (approx 2 hours per day for 2 days), and boy let me tell you, it wasn't the tics that were the problem, it was the very agitated and angry rude boy that suddenly lived at our house! Last week I removed the TV for 4 days, he was back to normal very quickly. Now I let him watch about 1/2 to 1 hour per day - often we don't bother turning it on because we get involved in other activities.

 

5. Menu

What I have found to help my sanity, is to create a menu. My son showed sensitive to over 30 foods, plus I removed all salicylates. To add to that, of the remaining foods, I was instructed to not repeat the same food on 2 consecutive days. To use a 4-day rotation plan so that he doesn't create more sensitivities.

By sitting down and creating a menu, I remove alot of my anxiety of "what to make". The planning took care of all the "thinking" and for the rest of the week, I just do as I planned.

 

 

6. Cleared all my countertops

I was surrounded with all kinds of new ingrediants and vitamins every where I looked in the kitchen. I was driving myself crazy. I finally decided to clear 2 cupboards in the kitchen and place the items inside where I would not have to look at them all the time.

 

7. Got a hold of recipes

ideas ideas ideas. The link http://www.enabling.org/ia/celiac/#recipes was given to us by another wonderful mom here (I can't find the post, sorry).

 

8. 95% following the rules, 5% allowed to not follow the rules.

Ronnas, your words of wisdom are so true.... and only somehow penetrated my brain this weekend. After being very strict about staying on the diet - I finally made the decision that if I am following very well for 95% of the time, then it should be OKAY if I let my son have a piece of birthday cake at a birthday party, or a cookie at a friend's house 5% of the time. The social impact of being an outcast in an already difficult time is probably more damaging to my son.... so I decided to let up a bit.

 

 

8. Sugar

Are you allowed honey? Syrup? Date sugar? Fruit puree?

 

 

9. Be patient.

With everything that you are doing, some results show quicker, but really, it may take months before a real improvement is shown. Just know that results will show up sooner or later. Sometimes, they are very subtle.

 

 

I hope this helps in some little way. We are all in this together and the help that I have received here has been so important and instrumental in the improvement of my son's tics - I can't begin to express my deepest gratitude to everyone.

 

Evangelia

[marina]

Hi Dara

 

Just a quick post because I'm at work.

 

It's so great that you found this forum because there are so many wonderful people to help you.

So far we have found a few triggers for our 12 year old, but have a while to go.

 

Please also consider a visit to an osteopath. We went last week. Going in he had such terrible tics, and came out with none. Read my post on the screens thread. The effects have lasted a while, and allowed us to notice triggers more clearly.

From feeling totally in despair, trying everthing at once and not knowing what to do next, I know I'm on track now.

We will all get there.

 

Best wishes

Marina

[Dara]

Ronnas, Jeff, Claire & Evangelia,

 

Thank you so much for writing back so quickly. It's 7:30pm Tuesday night. I just put my two boys to bed at 7pm and my husband Karl just got home from work. I should be preparing for Thanksgiving (I have so much to do) but instead I'm sitting in front of the computer crying my eyes out. You all must think I'm such a wimp! Our son Karl Henry has had the worst tic during the last couple of days and today it was at it's worst.

 

Karl's tic consists of bending his head forward so that his chin touches his chest and then rolls his head side to side so that his ears touch his shoulder one at a time. About an hour and a half ago I was sitting on the floor playing with Karl and his younger brother, Graham and I couldn't help but notice that there were red marks under both ears from the constant rubbing on his shoulders. This is the first time that I've witnessed Karl having a tic that could actually harm him. I feel so scared for him. He's such a champ. As annoying as this tic is, he hasn't mentioned anything about it. While I was lying in bed reading a book to him, his body was in constant motion. It looked like it was hard for him to relax.

 

I filled my husband Karl in on how Karl Henry was today (which obviously wasn't good), so now both of us are mopeing around asking ourselves 'Why?'

 

As a side note, we're still scheduled to revisit our doctor on December 6th and are anxious to find out the results of the bloodwork. As for the supplements, I was able to find liquid flaxseed oil and liquid lecithin. I also bought Carab unsweetened rice milk which doesn't seem to have any additional sugars in it. I made a shake for both of the boys and added one scoop of prescribed soy protein in addition to natural vanilla extract and a whole lot of stevia. They both loved it!!!!One small step. yeah. We will of course continue to try and get all the supplements in him.

 

Here's a question about triggers. Karl Henry stared with the head cocking left to right mid last week. Friday we had the kitchen painted. The only things that might have caused this tic to go nuts is possible small amounts of sugar and the painting. We had some more painting done today...What do people do, not paint their houses???? Here's another good one, my husband went out over the weekend and spent $700 on two nice synthetic rugs for the basement. Bad move right??? We didn't think of it at the time but I guess we should have bought a natural fiber. Now what do we do. Is it possible that Karl Henry will have an initial increase of tics (I can't imagine it getting any worse at this point) and then they subside, or does anyone know if his body will get used to them. This is all hypothetical of course because we haven't introduced him to the rugs.

 

Anyway, I'm going to start the no TV thing next Monday. We're having nieces and nephews here on Thanksgiving who are older and I think it will be hard to control it that day.

 

Thanks to all of you.

[Claire]

Dara re painting

 

YES!!

 

Paint is a horrible horrible trigger for some. Buy low VOC paint (low odor paint).

 

We actually moved to a hotel for the week they painted our house--I wanted no part of that. But I am more extreme than some. Probably I think most major brands (Benjamin Moore, Kelly Moore) carries this. They use it at hospitals, for obvious reasons. THey sell low VOC/odor primers also. I do believe if the tics are worse right now that this could cause it. If it isn't too cold, maybe try to open some windows and ventilate, or get him out during the day when possible, and run an air filter in his room at night.

 

The tics that hurt are the heart breakers. I am so sorry for you. Good for you for picking a good time re the no screens trial.

 

Evangelia,

 

Yes, you are an expert now! Great advice you gave. I like the 95% part you and Ronna discuss. We do the same thing. And very interesting to hear about the TV reintro. Soooo many of us notice grumpiness associated with it (except the pre-teens, who are grumpy when it is taken away too, ha).

 

I think you were smart to have the TV 'break'--no trauma or bad feelings or week long arguments that way. It is probably the one 'white lie' that I have ever run into where I thought it was justified. Glad to hear your child can tolerate a bit daily. I am sure this varies a lot, and I am sure you will keep a watch on it. I personally view it as a sign that the 'healing' is going well. We have some on the LCD monitor now with no problems. Haven't bothered trying the CRT screen--no reason to do so now that we have the LCD.

 

Claire

[Dara]

Marina,

 

Thanks for writing. I couldn't find a thread about osteopaths??? Am I looking in the wrong place? Is it the same as a homeopathy doctor??? We've brought Karl Henry to 7 different doctors in 7 months. I'd hate to bring him to another one, but at this point I'd do anything. I just keep praying that this new diet and supplement program will kick in soon and these horrible tics will go away. It's so hard watching your child not be able to control his/her own body.

 

As far as the TV thing, Monday is a definate start date for us.

 

Keep in touch.

 

Dara

[Dara]

Claire,

 

My brother-in-law finished painting our kitchen and living room late this afternoon. Why didn't I think to ask for the low odor paint. Between the painting and the new synthetic carpet that my husband put in our basement tonight, I feel like kicking myself in the you know where. Any suggestions about the carpet? I told my husband we should have bought a natural fiber rug like wool, but how do we know if Karl Henry is allergic to wool? Is there a test for that? Now that we have this horrible smelling rug in our basement, what the heck do I do with it? To be honest, I don't even want Karl or Graham playing down there.

 

As I mentioned before, Karls neck tic started last Wednesday and the painting didn't start until Friday. I don't think it was the trigger for the tic, but maybe it made it worse. He was in such bad shape when he went to bed tonight. Me and my husbang Karl, walked around the house and cried on and off because we feel so helpless.

 

I'm trying to keep a positive attitude, but my biggest fear is that we go through all of this (doctors, diets, supplements, etc.) and nothing works.

 

As a side note, when I do an 'Add Reply' how do I spell check my reply before posting it. When I select 'Preview Post' it doesn't do much of anything except show me the reply in a larger font. Am I missing something? Are you from NJ?

 

Thanks a bunch.

 

Dara

[Claire]

Hi Dara,

 

To me it is the smell of the carpets that would worry me...that shows that it is outgassing or whatever the proper term is. I am probably not the best person to talk to about carpets because I have such a strong allergic reaction to them. Dr. Doris Rapp had terrible stories in her book about a family with bad carpets. They sent the samples to some testing place, where I guess they let mice run on it and the mice couldn't even stay alive long enough to finish the test. From reading her book, it wasn't a matter of getting used to it (assuming that it had a negative impact in the first place), but more whether the carpet stopped putting out the odors (and thus releasing the chemicals) over time.

 

The tough thing is that it is difficult to assess impact of the rugs on your own kids without having a baseline. ie low/no tics and then see what happens when he spends time there. So the tics started before the painting. Did they get worse over the few days after the painting?

 

Interesting your comment on wool, because I am allergic to wool and we have wool area rugs. But they are tight weave and had no odor. But we have none in the rooms that I hang out in.

 

So the store doesn't allow returns? I just don't know your financial situation and your child's sensitivities. My son and I are both sensitive, so we just do not use any rugs, and definitely not any with an odor. So here is my thinking: Can't you air out the house from the painting, and temporarily remove the carpets, do the no screens week starting Monday, and if your child has improved at the end of the week, then bring in the carpets and let your children play down there with the carpets for a few days because you are more likely to notice a reaction? If there is one, then you have your answer. My biggest concern right now is that you have a lot of factors going on to sort through. Quite challenging. By the way, that low VOC/odor paint is great, the smell is really completely gone by the next day, at least for us.

 

Are they wood floors, or more like a cellar? We leave our wood floors mostly open. For a 'pavement' floor I guess it would be different.

 

I don't know how to use the features here. No one cares about typos, so I wouldn't worry about spellcheck or preview. There is an edit command in the top left so you can always go back and correct a post afterwards.

 

No, not in NJ, wrong coast!

 

Claire

 

ps We are flying out of state tomorrow for a long weekend, with no email, so I will see you all on Monday! Happy Thanksgiving!

[Evangelia]

Hi Dara,

 

This is a strange suggestion, but can you move in with someone for a week or so? Looking back, my son's tics really started surfacing last December when we had our house painted and we actually had moved in with my in-laws for 8 days while we painted. His tics started shortly after we moved back in - because the fumes didn't go away for a while. I never made the association between the paints and the new twitches that were suddenly occuring with my son until my naturalpath asked me to fill in a questionaire 2 months ago!

 

I am just thinking that if you remove yourself completely from the environment, then you will see if things get better and you will at least be dealing with the a major trigger to be sure. As Claire mentioned, I would also stop the screens at the same time.

 

What you need is to see some improvement to encourage you that you can have an influence over this and it will get better. I really feel for you, I cried for 3 days and nights non-stop when my son's tics were at their worse - I didn't think that I had any tears left in me! Things WILL get better - we are all a testament to that.

 

I also want to mention, that your son may not always know that he is ticing. It is probably harder for you to watch him than it is for him doing the tic. Remember, when he tics, he is satisfying an urge that is bothering him and then he feels better. It is like when you have an itch - the itch bothers you so you scratch it and then you feel better. Think of the tic as the scratching part of it.

 

As Jeff mentioned, we also eliminated all additives and preservatives.

 

Regarding symptoms getting worse, the first week or two when I eliminated "everything" my son's tics got worse, and thanks to the parents here, they mentioned that generally this happens because the body may be detoxing. Tics got worse before they got better.

 

Hang in there, don't loose hope.

Take care,

Evangelia

[Dara]

Evangelia,

 

I haven't been able to get to the computer for the last couple of days because of Thanksgiving and the long weekend. Hope you had a good holiday. This was the first holiday that I can actually say 'was not fun'. I hosted it here at our house with all of my husbands family. The food, drink and company was great, my son's tics were terrible. I watched him during the dinner with tears in my eyes and a sick feeling in my stomach. All of our family knows what's going on with Karl Henry and are very understanding thank god. Since I couldn't eat much I drank instead. Probably too much I must say. It sure did help my feelings temporarily - ha, ha.

 

Can you help me out with the 'vitimin shake' you give your son. I've been trying to put Karl's supplements in vanilla or carab rice milk with absolutly no luck. I just went to the refrigerator to see if the vanilla rice milk had the vitamin A palmitate in it. I had two open containers of this milk - one was 'enriched' and had it and the other did not. Both are vanilla rice milk from Rice Dreams. I just threw the one with the vitamin A in the garbage.

 

Back to the shake. I have several supplements that Karl's supposed to be taking every day. See my original note above for the listing. What I've been trying to do with no luck is grind some of these pills in a coffee grinder and then put them in a blender with carab rice milk, ice cubes, pure vanilla, and stevia. He hates it.

 

Karl has only been under the care of our newly found environmental physican (Dr. Majid Ali, Denville, NJ) for two weeks. We have a second meeting with him next Monday, December 6th, to discuss the findings of blood and urine work ups. In the meantime, Dr. Ali asked that we eliminate ALL sugar (even honey and maple syrup), and all dairy and to start a diet of organic foods - vegetables, fruits and dry goods. Our son has barely eaten in two weeks, refuses the supplements (which is only a small portion of what he's supposed to be taking every day) and is irritable and angry that he can't have the foods that he's used to.

 

As I told Claire last week, I was supposed to stop all TV starting yesterday but didn't. This is going to sound like such a ridiculous statement, but I feel so bad for my son that taking the TV away might make my life even worse right now - I can't believe I just said that. My son is so smart, he won't believe that the TV temporarily "just doesn't work". We'll have to remove all the TV's from the house this coming weekend.

 

Back to the supplements. If I could just get some of these supplements in him I'd be so excited. The diet is as I've said, working out OK it's just all the supplements. Especially some of the B vitamins. They smell and taste terrible. How do you get all these into your son????

 

Encouraging words would be appreciated.

 

Thanks,

 

Dara

 

ps I'm so glad to hear that your son is doing well only after two months. It's so encouraging to me to hear these stories. I hope I'll be in a position to help someone else at some point.

[Dara]

Marina,

 

Hope you had a good Thanksgiving. Ours wasn't the same this year because of our son's terrible tics this year. His tics were so bad that day. All I could do is sit and watch him twitch, grimace and cock his head. As I told Evangelia in the prior note, I was sick to my stomach with sadness.

 

I'm sure you and the others on this website have experienced similar situations. It's a feeling of helplessness that you can't quite explain to someone unless they're going through the same situation. As I also mentioned to Evangelia above, we've had pretty good sucess with implementing the 'new diet' for Karl. No sugar, no dairy, all organic, but we haven't had luck with the supplements. There's so many of them (some have to be taken twice a day) and our son refuses to take any of them and has been able to identify if they're in his drinks/food. We've been on this new program for two weeks as of yesterday. I'm feeling a bit defeated, but am trying to keep a positive outlook on what we need to do in order to help our son. Me and my husband are so desperate at this point. Probably because Karl Henry's tics have been really bad for the last week and a half and we're all exhausted. I wish I could make him swallow all the pills but at 4 1/2 years old, I don't think that's an option.

 

Anyway, could you tell me more about what an osteopath is? I'm not familiar with the term. I've also heard the term neuropath. Are they the same type of doctor? Karl Henry's current doctor is an environmental physician, Dr. Majid Ali from Denville, New Jersey.

 

Take Care.

 

Dara.

[Guest Helen]

Hi All,

 

I have just quickly read through all your writings & I'm surprised there're so many TS kids out there. I live in New York and my 6 year-old daughter started tics in April this year. She started with the eye blinking which my husband & I think it could have been triggered by her bad allergy reaction to the hay fever season. Then she had shoulder shrugs, throat clearing, sniffing & the worst one was when she would lift up & down her hands. Thank God that only lasted a short period of time. We took her to the pediatric neurologist twice - he did some basic exam on her but didn't really have any suggestion to improve her problem. He said there're various drugs out there for TS (the mild one like Tenax) but he would not recommend that unless her tics are so bad that they interfere with her social life. I don't want to give her any medicine neither because I know a lot of them have serious side effects.

 

The tics have improved a lot when we started feeding her with more organic food & avoid the coloring stuffs and very importantly the TV! However, her tics are gradually coming back again. She is now into clacking her teeth and nodding her head. The teeth clacking is very bad at bed time, probably because she's not talking. My heart just hurt so such every time she does that & all I can do is just to keep saying my prayers for my poor child. I know I'm not supposed to tell her to stop but I'm afraid that she's going to do some damage on her teeth & her jaw.

 

May be I am the one to be blamed on for her tics to come back 'cause we kind of stopped the organic diet & let her eat cookies, ice-cream & candies when her tics have seemed to subside. How could you not let her eat candies at Halloween? I have heard about the anti-yeast diet also but what can you feed them then? We are planning to take her back to the neurology for the EEG to make sure she doesn't have any signs of seizures. I have heard that this probably won't help but we just want to be on the safe side.

 

This vitamin approach all of you talk about - does that really work? Just by looking at all those vitamins made me scared already. That's awful lot of vitamins! Can't we just give them the regular children muliti-vitamin? At least with that I know my kids love them. Is this recommended by the same doctor mentioned in NJ? Also, Dara, you mentioned about doing some blood work and analyses on your son, are there any side effects on these tests? I'm just scared at doing something that might end up making things worse

 

Anyway, I'm going to start feeding my daughter more organic food again, eliminate as much sugare and junks as I can (it's going to be hard especially she asks for desert every night & she really cries out loud when she doesn't get it!). I'm definitely going to tell my in-laws to stop the TV for a week or so to see if that helps.

 

Thanks for reading all these. It's 1:00am in the morning now and like all of you, I'm exhausted. The bad thing is I work too. Sometimes I just think that may be I need to stay home with her so that I can monitor her better in what she does and what she eats.

 

Thanks!

 

Helen