Jump to content
ACN Latitudes Forums

lmcgill

Members
  • Posts

    157
  • Joined

  • Last visited

  • Days Won

    3

Posts posted by lmcgill

  1. Thanks all-it sure is hard to decide if it is allergy related or tics or what sometimes. I know when he had the explosion it was definite tics. Like I said, he has always had trouble with light sensitivity. I do think I uncovered some important info on the computer last night. I had been giving him Benedryl for his allergies and read that antihistamines can increase light sensitivity so I will have to figure out something else for his allergies. Any ideas? I got an Austin Air purifier for his bedroom and this seems to help a minimal amount. Does this ever get easier? Since Feb. my life seems to be consumed with my sons (and the worry of my daughters) health. Those who have been at it for awhile- does life ever return to normal? Just curious, as I feel like I am having a hard time accepting tics and was wondering if I ever will. Sorry for the down note.

    We have been dealing with it for over a year, and I think it has gotten easier for me. I have seen my boy at his worst, and for many months now, I feel he is about %80 to %95 better. You will find most of the tics do not bother him near as much as you. Unfortunately for me, my days are better or worse depending on if he has tics or not. I try not to stare at him, but I find it hard not to. He is doing well now, but I worry about grade 3 starting and going to a new school. I think a lot of his ticcing is due to stress, but we have cleaned up his diet as well, so who knows. As parents we would gladly take on our childrens problems if we could, but we can't of course. The frustrating part to me is not knowing what the real cause is if there really is one. Your child gets a cold, you give him a pill and know he will be better in a couple days. He gets a scratch, you put a bandaide on it, but he has tics, and you feel helpless and feel like you have failed him. I hold on to the promise that God will never give me more then I can bare, and that keeps me from getting too depressed. So far, His promise is still true.

    Lenny

  2. We have seen an increase in eye blinking lately. His eyes seem to be red, and he says they sting a bit. Not sure if this is due to an allergy or stress. He was a little stressed yesterday morning when he started a new day camp and we were at the wrong place. He said he would just like to go home, but we finally found the correct drop off and when I picked him up he was doing pretty heavy blinks, and his eyes did look sore. I put some Visine in his eyes and he slept very well last night and there were no blinks this morning.

    Lenny

  3. Our 8 year old seems to be bothered by stress as well as the games. We have mostly stopped the games, and while on vacation he was very calm and completely tic free. As we were coming home Wednesday we stopped to eat and I noticed a few heavy eye blinks starting. Prior to that, he had been asking who was going to look after them (twins, boy girl) tomorrow. When we got home he did a couple little hops as well and continued with a few more eye blinks. He then asked us what time we were going to bed and wanted his door open more then usual. When I was driving home yesterday to pick them up from a mostly new sitter, I was expecting him to have more tics, but he was having a good time and was back to normal save a couple eye blinks when he was eating and then when my wife brushed his teeth. He will be in a new school this year in grade 3 and I get anxious thinking about what that will do to him. We will also be moving just prior to him starting school.

    His tics all summer have been mostly non existant. But I too am thinking they may be stress related. He tells me he is not feeling upset about anything, but I am not sure an 8 year old knows what stress actually is.

    I will continue his supp's along with a propper diet and trust that between God and myself, he will be fine.

     

    P.S. Has anyone experienced ticcing such as the eye blinking only while eating and brushing teeth? This seems strange to me, almost like a habbit instead of a actual tic.

    Lenny

  4. Hi

     

    one thing I have learned in this 8 year walk with TS is that just about anything can be a tic ^_^ and yes, the movement you describe is a tic my son has had in the past too

    Our son has had the abdominal movement as well, along with the eye and shoulder and leg. They don't seem to last that long and are never more then just the single motor tic. I still think this is the transient type, not TS. On all the descriptions I have read he does not seem to fall under TS. Would you agree Chemar, or is there other information that would sugest it still could be TS? I haven't seen anything now save about 1 eye roll in a few days.

    Lenny

  5. I only give our son 1 teaspoon a day of the Calm, he is 8 and about 52lbs. I tried him on the fish oil and he had a big increase in tics so I stopped. Our son had the prick test and showed nothing at all. On the IgG, (results posted earlier) he was off the chart on eggs and soy. We have stopped that for the last two weeks and now he doesn't even blink.

    I noticed he would blink when we brushed his teeth, I wanted to change his Colgate to a natural no flouride one but my wife was adamant she was not doing that. She is a dental hygienist and has her own ideas on that subject!

    I am doing better to, unfortunately I think it is dependent on how he is, so I still have to work out some things. Not sure how I will be if the tics return, but I know I need to prepare myself because I am sure they will be back.

    The journed continues, we are just coming up to a year since he had the first big explosion where I took him to emergency, so we have come a long long way.

    Lenny

  6. It's been about a week now since I started giving my son B-Complex sublingual liquid, fish oil and zinc. Today he hasn't had one tic and he seems really happy about that. He is taking the supplements without me having to make him. He said he gets a good buzzing feeling in his head when he takes the B-complex and he doesn't feel as tired as he had been feeling.

    So maybe you can change the topic to "Stopped tics". That is good news, our son has been doing great for a few weeks too. Please keep us updated every once in awile.

    Lenny

  7. Hi. My daughter was diagnosed with PANDAS when she was 5 and after 10 months of recurrent strep throat and going through a lot of different antibiotics (Pen VK, Amoxicillin, Augmentin, Clindamycin) we took her to a pediatric ENT who took one look in her throat and could not believe how huge her tonsils were. When he removed her tonsils and adenoids he said they were so "cryptic" that the antibiotics were not getting to all of the strep hidden in the crypts, nor would it ever have gotten to it. Chronic tonsil infections and enlarged tonsils can lead to a condition called chronic cryptic tonsillitis. The tonsils contain many small pockets and infoldings called crypts. Initially, on a course of antibiotics her tics would disappear or at least dramatically decrease until she finished the antibiotic at which time the tics and OCD behaviors would return. She was completely symptom free and strep free for over a year. You may want to consider taking your child to a pediatric ENT for evaluation.

    I am the one who posted about the ineffectiveness of penicillin on strep. Someone recently posted the link to the article about this. The evidence is out there about Cephalosporins and Azithromycin being the drug of choice for strep, unfortunately a lot of physicians are sticking with penicillins. There are many cephalosporins and also Azithromycin (Zithromax) that come in liquids. I wish you lots of luck! Hang in there!!

    Colleen

    How has your daughter been since the tonsils have been removed? Our son has very large tonsils, but has not had strep. We took him to the ENT specialist and he made us feel stupid for seeing if they should be removed. He is a little under weight and we thought the removal of tonsils might help him to gain more weight. His tics are under control, but if the tonsil removal helped out I would be interested to know.

    Lenny

  8. The Naturapath Dr sugested we try "drops" to reduce the reaction from problem foods our son has a reaction to. She said this will allow him to eat small amounts of the foods in question. Seeing she charged us $42.00 for a small bottle of L-Carnitine, I don't want to go to her for these drops. Does anyone know what she may be talking about? Is it just a digestive liquid that I may be able to get over the counter?

  9. Don't give up, I just got back from taking my son to the Dr. As usual, he just said "he is fine, kids grow out of it". I realized months ago that I need to take things into my own hands and leave the rest up to God. I prayer every day that He won't give me more problems then I can handle. So far I feel He hasn't.

    I would have never known what type of Mag to give him, that L-carnatine and Taurine was what he should have, or that I needed to get a IgG food test done if it wasn't for the wonderful people on this forum. Now we know we were practically poisoning our boy with eggs and soy. This is a journey, mine has only been one year, others have been probably 10 plus and others are just starting.

    Lenny

  10. Lenny

    be sure that. as you are vegetarian, your child is getting enough taurine, as we normally get most of our dietary taurine from meats, and taurine has been shown to be important in reducing tics in most people

    It was this board that made me decide to add a 1000mg tablet of Taurine to his supps. We are also changing his diet to include meat now. His eye blinking seems to be the only tic that will not totally go away. It veries with intensitity, may be a little worse in the morning and when he goes to bed, not that disruptive, we just ignore it now.

    Chemar, I find it almost ironic that in order for his diagnosis of his tics to be "transient" they almost need to continue for a certain duration with some times of no ticcing? He has an appointment with his GP today, I am going to bring him in the IgG test results and see what his sugestions are. Thanks

    Lenny

  11. I really think you should try the Kids Calm brand. I think it has helped our son out the most of all the supplements. His tics are close to none now. We recently found out he is very alergic to eggs and soy through the IgG testing. This is devastating to our family, we are vegitarians and live on soy products and eggs! We are trying to eliminate that but it is very difficult. The Dr said we can use some drops to make him less sensitive, I need to find out what is in them and if they are fine for him to take.

    Welcome to the forum, it has been very helpfull to me.

  12. This forum will help, I am from the other side of the country, Vancouver BC and our son is 8 and has many similarities. He is very bright, does not have any othe co-existing problems such as any attention def. or OCD and no TS or any other major behavorial issues. Nor is there any known history of anything on both sides of our family. I have done most of the diagnosing and discovery myself. The GP and PED brushed me off, the Naturapath charged me $400 to get a IgG test done for food intolerances. He did have the prick test done but that showed nothing. As you can see from my previous post, he is off the charts for eggs and soy. These are two foods that we have given him a lot of. We are going to eliminate or reduce them and see if that helps even more. I would definately put your daughter on "Kids Calm". It seems to have helped our son out. I also have him taking a high potency B-Complex and Taurine and L-Carnitine. The combo has reduced his tics down to only mild to moderate sessions maybe once a month for a couple days if that. I am hoping the diet does the rest, but I know I can never take credit myself. I have let my trust in God suffer some days, I have shed a lot of tears and obsessed over him. I am getting better, but still a ways to go for myself and my son. My wife seems to be the balance in this situation, although concerned, she feels like I do the worrying for both of us. Please be patient, I can only hope no one falls into the helpless condition I felt I was in. It did my son, my family and myself absolutely no good. Kids pick up on your concerns, and it makes the situation worse. I am preaching to myself as well right now, it helps to write things out and remind yourself the damage you can do when you appear distressed and sad in front of people you love.

    Although I feel fortunate to not have a son that has to go through the situations others are faced with on this forum, it still can be as devasting and I will never "brush" my son off. I am going to do anything to help him and allow him to have as normal of a life as possible. I would feel I had failed if I didn't turn over every stone. Like many have said, it is a journey.

    Lenny

  13. Hi Lenny,

    Great! I'd really like to hear if things improve while avoiding offending foods. I think I remember you saying you thought eggs were a problem because he ate that on weekends? Was that you who said? Very observant. Had you been avoiding that recently anyway? You are observing things being pretty mild right now too? Think there's any correlation? Also, was he eating those other things on any regular basis besides the soy? (See, re the post by Patty about keeping a log--it would be interesting to note if your son was consuming things he tested high for more often during waxing times.)

     

    Just be careful i.e. whole wheat, you never know what kind of flour is used in bakery and bread products.

     

    Good Luck, keep us posted,

    Faith

    Yes, what a memory! Soy was the shock to me, he has been raised on Soy milk and has vegetarian food most days that are based on soy protien or tofu, more soy. I was more curious as to the whole wheat. If we give him bread with enriched flour, is that going to effect him as much?

  14. After close to one month we finally got to see the results of ours sons IgG Alergy report. Here are the hi lights:

    Egg whites-----off the chart

    Egg yolks------very high

    Soy-------------off the chart

    Blueberry------high

    Green Peas----high

    Lentils----------high

    Whole wheat--high

    He loves eggs and we have given him soy products all his known life!

    I suppose he is not the best candidate to be a vegitarian like his father.

    I had allways suspected eggs, but never soy. He appears to be lactose intollerant, but I am not sure if that has anything to do with alergies?

    He cried when I told him he couldn't have eggs for awhile, but I told him he could have pizza again and that made him feel better.

    The test was high for whole wheat, but what about enriched flour etc?

    It looks like I need to ask a few more questions to the Naturapath, hopefully without costing another $400!

  15. Our son seems to have extremely bad breath some days. I have heard this could be indicitive of either something going on in the digestive system or in the throat. My wife is a dental hygeinist so his mouth and teeth are in good shape. Anyone have first hand knowledge of this?

    Thanks Lenny

  16. I agree with John, our ped was useless, don't get your hopes up. He just shrugged it off and basically blew us off. I have done all the research along with the help of this forum to reduce our son's tics. Even if they are "transient", it still doesn't make it any easier to watch. I study him way too much and even when the kid has the hicups I feel my stomach start going into anxious mode! I feel he honestly controls my moods some times, not good!! I am working on that part, I know he sees me watching him and that probably puts some stress on him. It is the complete helplessness I go through, as someone said, when he has a cut, you put a bandaide on it, a fever, you give him asprin, but this is not like that. He put in a good weekend, you would think I should be greatfull, and I suppose I am, but I can't help but wonder if he will be ticcing when I seem him after school.

    Sorry for the negative post, getting some of these feelings out in the open should be allowed I hope. Perhaps others can share how they deal with similar issues. I still have a ways to go before I have the attitude that I should just be thankfull for him and that I am doing all everything I can and to relax.

    Lenny

  17. I can honestly empathize with you. When our son tics it actually makes me sick inside. I know it does not bother him that much near as much as me. You seem to have him down the right path. We limit our son to TV, games, junk food as well as have him taking sups B6 complex, Natural Calm mag, Taurine, and vit c and a multi. We have had him tested for alergies with the prick method and found nothing. We recently have had him tested for food alergies using the Icg method and are still waiting for the test results, hopefully this week. I take most of the worry between my wife and me. We are trying to give him the best in all ways, and it obviously includes going down every path that may help him even a little. Don't lose hope, it does get better. We are approaching a year since he started ticcing. He is mostly tic free, and when he does they don't seem to last more then a week and they are much less.

    Lenny

  18. I am interested in the response from others. Our son has had a very bad weekend of eye blinking. Not sure what has started it, but I hope they get better tomorrow. I am still waiting for our test results, I do suspect gluten is a problem, but hate to keep guessing.

  19. Faith

    I am still waiting his tests, probably next week. If you see my earlier post it mentions the type of allergy product, I can't remeber right now. Just dissapointing for me, he has been doing good for a long time. His blinking was severe today. Sunshine sent me a PM that said the little ceasers pizza was high in gluten and maybe had MSG. I gave him a epson salts bath tonight so maybe tomorrow will be better. I just hope it doesn't turn into twitches. I also stopped the allergy pills this morning.

    Lenny

     

    Lenny,

     

    My son has high IgG antibodies to gluten,wheat and casein. We knew this before he started having tics but always found the elimination diet extremely hard and never felt there was a big enough reason to go gf/cf.

     

    Now that he has the blinking tic, we have cleaned out our pantry and started replacing our diets to a more gf/cf. It's hard and were not 100% all the time yet, but I have to admit, that since we've removed the offenders, his blinking has went from 95% of the time to 5% of the time. *knock on wood* not to jinx it.

     

    I would definitely try to do a elimination diet if I were you. It seems like I remember reading a few of your posts with you saying the tics got worse after your ds had pizza or milk. Those could definitely be making it worse.

     

    Just my humble opinion!

    He is still doing the blinking bad today. Do you know how long the body needs to get back in line? I can't remember.

  20. Lenny,

    What kind of allergy medicine? Why do you give that and what is he allergic to? Have you done any tests with the naturo yet? what were her/his recommendations? Will they do any allergy/food sensitivity testing?

    Did you start giving the taurine yet? sorry so many questions, I just like to know specifics. Hope things settle soon.

     

    Faith

    I am still waiting his tests, probably next week. If you see my earlier post it mentions the type of allergy product, I can't remeber right now. Just dissapointing for me, he has been doing good for a long time. His blinking was severe today. Sunshine sent me a PM that said the little ceasers pizza was high in gluten and maybe had MSG. I gave him a epson salts bath tonight so maybe tomorrow will be better. I just hope it doesn't turn into twitches. I also stopped the allergy pills this morning.

    Lenny

×
×
  • Create New...