Lynn777

Thanks to all of you for your kind words thoughts & prayers, I so very much appreciate it. Especially for my son, but also for myself --> his mess of a mom He is on 2 tsp ibuprofen every 4-6 hours for the inflammation in his mouth. They said to continue it for 5 days, so maybe he'll get some overall relief from that. Appreciate the responses, you all are the best! ~Lynn

Megan, Thanks for the reply, what you said above is so true isn't it? It's also true that they seem so resilient, DS is handling it all so much better then me. Oh and Amen to the above!

Hi All, On Monday night my son was hit in the mouth with a baseball. He had severe trauma to his upper lip, lower lip, gums, and his top two teeth were loose. In addition, the emergency room doctor was concerned he fractured his jaw. Anyway, we went back to the radiologist the next morning and thankfully there was not a fracture. Yesterday we saw the dentist (which he hates, getting a filling is what "started" all this to begin with). The dentist took many more x-rays and determined that 90% of the damage is soft tissue & the ligaments in his front teeth are strengthening. Yes, that is good news! But... He has been doing so well with his tics the past few months. They have been so very minor, only my husband and me notice them. In fact, we haven’t even had a vocal in at least 2 months. I was feeling so encouraged that the diet and supplements were helping. He is trooper & handled the dental injury, ER & dentist very well, but last night the tics were so bad. He was stretching his neck, his shoulders were shrugging, he kept moving his head and even the vocal came back too. I had to post here because I know all of you understand the roller coaster of emotions with this disorder. One day, optimistic & encouraged and the next day the whole world comes crashing down. I know I have to pull myself back up for him, but I needed to vent. Thanks!

Seriously, bless you for being so diligent with this. I have had my son on the Bontech supplements & organic whole foods since May. As of September we just started a much stricter diet based on my son's IgG results, to which he showed intolerance to 64 items. However, our integrative doctor is having us eliminate the 25 moderate/high reactive foods first. Mainly wheat/gluten/all dairy/peanuts/citrus fruit and a few others. He said sometimes that is enough to do the trick and sometimes more elimination and diligence is needed if our goal is to completely eradicate the tics. Time will tell. Some days I'm ready to throw in the towel just with what we are doing now. If I had to eliminate all the fruits, drinks and treats too I'm not sure I could handle it (I guess I would for him, but you know what I mean). I TRULY give you credit. I noticed a big difference in my son after starting him on the Bontech's and switching to organic whole foods. Can't say I notice any difference with Natural Calm (probably because he gets what he needs through the Bonnie's) or the stricter diet yet, but I've heard that it can take months to see the full effects of the diet. Anyway, I wish I could give you more ideas. I'm actually a food diary junkie and have tried about every brand of everything, but I don't think we are as strict as you, so my food items might not fit for you. Best of luck & I hope and pray each and every day that all of the alternatives help (if not recover) our kids! ~Lynn

Great news, so happy for you & your son. It is also encouraging news for the rest of us. We have seen improvements on the supplements and have recently gone 90% dairy, gluten & wheat free. My son is being so good about it, but there are days I want to throw in the towel on the whole diet thing. But, we are only a month into it and I've heard it takes time, so we press on. So do you think the results are as much the topamax as the natural treatments or vise versa? We aren't considering meds yet, but I'm just curious. Again, that is great news. So happy for your family! ~Lynn

I read this today, you may have seen it before, but I never have. Thought it was worth sharing... "Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, and the way you move. (underline mine ) You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then pain any other who is, like you, a marvel? You must work, we must all work, to make the world worthy of all its children." Our kids are truly blessings! Happy Friday, Lynn

Okay, so I'm not helping much here, since I'm just asking a similar question. However, I'm confused at what point all of these comorbidies take hold. I'm most familiar with ADHD and that if it's going to be an issue; typically it rears its head pretty early on in life and usually before the tics. At the very least, the inattentive or hyperactivity has been observed by the parent on some level. However, I'm much more confused with the OCD, Learning Disabilities, Rage, etc, etc. Are there usually some signs during early childhood? Do they surface at the same time as the tics or are they as mysterious as everything else and can show up years after the Tourette's begins? Thoughts? Personal Stories? Experience? Thanks -

Hi! We have been using Bonnie's for four months and my son is doing very well on them. He still has tics, but nothing like onset & the mild OCD we saw in the beginning is all but gone. Have you ever done the intolerance testing? Although the Bontech seems to have taken the head off the tics, we are seeing continued improvements following my sons IgG. I still worry it could just be a long waning period, but I guess only time will tell. I think as others said, every child is different, even siblings. Maybe you could try to replicate the sups without the soy. Honestly, I really wish the Bontech's didn't have soy in them. My son did show intolerance for it, but he still seems to do well on them, so I didn't take him off when I found that out. I completely understand your worry & frustration. I wake up every day just praying the tics will be gone. My husband said to me yesterday, " who cares he has some tics" - please tell me where I can get that attitude!? Keep up the good work, you will find help for her... Take care, Lynn

We use the TS-Plus. My son gets 10 pills a day, 5 in the morning and 5 at night. I open them up and mix into a smoothie for him to drink. We started out with 1 pill a day and increased very slowly. I showed my pediatrician and he wasn't confident they would help, but said they were safe. Recently, I also showed our integrative/envirnomental doctor and he was very impressed with the supplement combination. The only other thing I give to my son is Omega-3's, but I started that very slowly too, since some people don't respond well to them. Haven't seen any issue yet, if we do we'll switch to flaxseed. We also make sure he gets plenty of probiotics in the form of Kefir or Cultured Cocounut Milk (which we are now using because it is dairy free). Good luck!

I agree. Even though I'm new to this, it's the exact reason I didn't watch it. I saw a preview for it and just had a feeling it was not going to have a balanced perspective.

I give my son honey and haven't noticed any increase in tics from it. I worked with a guy that took a tablespoon of honey every morning and said it helped him fight illness. Not so sure about the scientific accuracy of that last part, but thought I'd share. No, it doesn't need to be in the fridge Hope you feel better!

Thanks! How old is your son? Was it hard to implement with school? Did you find the diet changes made a difference in his tics? I really appreciate any advice, I don't want to deprive him, but on then other hand I want him to be healthy & minimize the tics as much as possible. My doctor strongly feels there is a link between gluten, dairy & the nero issues...

Just got our IgG back. Feeling a little overwhelmed. Gluten, oats, all dairy, eggs, aspergillus niger, orange and soy beans all came back high. Casein, tuna, wheat, rye, spelt, peanut, mushroom, cilantro & grapefruit all came back moderate. The dairy is really stressing me out. Any advice/suggestions are very much appreciated. Also, what's everyone's thoughts on this whole IgG thing? Anyone else have great success with elimination? Thanks, Lynn

I know, I feel guilty too. In fact, I was doing really well the past week or so and then last night I noticed a few extra tics and I allowed the sadness to consume me. You are definitely not alone and my husband gets upset with me sometimes too. What he doesn't understand is I'd give my right arm to be able to handle it the way he does, I just don't know how. I sure don't want to be upset all the time; I want to enjoy my kids and my life. As for the diagnosis, I doubt I will go back to the neurologist unless his tics really increase to the point we'd consider medication. As much as I am saddened by the tics, I would never medicate him unless he asked for it or felt completely overwhelmed by them. Outside of that, I see no reason to get him formally diagnosed and neither did the neurologist. From everything I've read there's probably a pretty fine line between transient, chronic & Tourette’s tics anyway. Did your neurologist suggest you have follow-up visits or no? Is your son bothered by his tics at all? I sent you a PM with my email address if you ever want to email me directly. ~Lynn

So weird, my son's tics are always worse while eating/drinking. I told the neurologist about it and she asked if mealtime was stressful, I told her "no, he loves food". She said, she had no idea why he would tic more while eating. She seemed perplexed. So, she told me to get him a stress ball In fact I always played the music at dinner, as a distraction. Well lately I haven't needed it on & now DS says "mommy aren't you going to play our dinner music?"

Catherine, I think we have the same neurologist, husband & mother! LOL. I too am surprised the neurologist diagnosed your son with TS so quickly, especially since the diagnostic criteria is 12 months for both vocal/motor tics. For the most part only our immediate family knows about my sons tics. We did tell his teacher, but only because at the onset of the vocal his tic was noticeable & seemed to be causing him some anxiety. I was SO worried about him, I had to be able to get updates from the teacher throughout the day or I wouldn't have been able to cope. The anxiety was short lived & his tics are (for the moment) manageable & mild. My husband also handles them much better then I do. In fact, he, my parents & his mom only notice about 1/4 of the tics I do. One of the many joys of motherhood I guess. We have not told any of his friends or their parents. At his birthday party I knew it was the right decision - get 15 little boys together & good luck picking out the "one" who tics! I agree with not wanting him to be labeled.

I am just happy I'm not the only one that feels this way. My son's major onset included a loud grunt/hum that always accompanied a neck stretch. I could barely be near him without going crazy or crying. Thankfully, that only lasted about two weeks and since then we have only had very minor/occasional vocals, that only I seem to hear. I used ear plugs the first few weeks, it was the only way I could handle it & get a break from them. It did help some! I also played a lot of music. I can actually deal with the throat clears, I just delude myself into believing it's his allergies & somehow that makes it easier for me to tolerate. I just keep praying, praying, praying the vocals don't get worse. If they do, I'll be trying the l-carnitine for sure. Hang in there!!!

Thanks for the replies. I think the most important take away I learned from all of the posts is that it seems how parents respond to the tics is a major key to how the child feels about them long term... Catherine7 - My son's experience was very similar to your sons. My pediatrician told us that tics are very common in young children and they usually resolve or go away over time. He also said in his 30 years of practice, he's never seen a case turn into anything serious. Interesting & a little hard for me to believe. Anyway, I too was such a basket case that he sent us to a neurologist. The neurologist diagnosed my son with a mild chronic tic disorder even though he has vocal & motor tics; she didn't feel his vocal was consistent or present long enough to diagnose TS. She also said that many kids have tics and they typically aren't a big deal. She said we didn't need to come back to her unless they increased or we felt he needed medication and that she would only prescribe if the tics interfered with his quality of life. She told us unless the tics bother him, which they don't right now, to go home and ignore them. She also told me she has many patients whose parents are the only ones who find the tics disturbing - teachers, friends, etc. sometimes don't even notice them, but the parents see & hear them all. Anyway, I was irritated at first too and thought the same thing -- "easy for you to say, this isn't your child". As time goes on, I think it actually makes me feel a "little" better. I too walk around with the stomach pit, but I try every day to keep it in perspective! Thanks all, Lynn

We too use Kefir as our probiotic.

Megan, your husband's story is interesting, but it is sad he didn't have the support from his parents. At least your son won't have to go through that & as you said he and his father have a "special" bond. It's so hard to believe parents could ignore, deny or punish the tics. I guess that's why I was wondering if most undiagnosed adults were just mild and slipped under the radar. Also, Chemar, I hope you understood my comment when I asked if everyone that has true tics find them irritating or annoying. I meant that from the sufferers perspective not the parents point of view. I have said from the beginning that no one in my family or my husband's family have tics or TS, but lately I've been thinking a lot about the fact that my dad, me & my older son "are in constant motion". Like we move our legs all the time, crack our knuckles, Etc., but they aren't really involuntary and they are in no way irritating, in fact I'd say they are compforting. That's why I asked that question, I'm wondering if our inability to sit still might have been the prerequisite for my sons tics/TS. ??? :(

Hello, I just wanted to say welcome. It seems as though Chemar and others already answered your questions. This is a great place for information, advice and support. Post anytime, it has helped me so much. Take care, Lynn

Welcome! This is such a great site for information and support. I agree with the magnesium and the clean diet. It sounds like you are on the right track. looking forward to getting to know you better on the forum. Take care, Lynn

I have read so many posts here and on other forums where parents say they realized their own "TS" or "habits" after their child was diagnosed. I guess I'm wondering, were the "tics" or "habits" just mild, were they not bothersome enough to get addressed or diagnosed. I just think it's interesting that many of us think of this disorder as devastating, yet it seems many people live their whole life without ever being diagnosed or knowing they have a tic disorder or "TS". I'm also starting to wonder if there is a fine line between tics and habits. lastly, does everyone with true tics find them irritating & annoying? I'm just very curious about this. Thoughts? -Lynn

Bonnie, I'm so new to this I probably won't be much help, but I understand exactly how you feel. My son started with eye blinking, grimacing and humming. They have since gone away and what we have now are the lower jaw stretch and the more complex (situation) tics. If he is bored or nervous he makes short swinging hand movements and when he plays sports he wipes his hair and scratches his cheek, legs, elbow. If you didn't know he has tics you would probably just think he has allergies and sweats a lot. What is strange to me is he is more aware of these tics then the simple ones, he seems to have more control over them and he too is not bothered by them, in fact he has gone so far to say he "likes" doing them. Frankly, I prefer them to the eye blinking and grimacing, which I find very hard to watch. Anyway, I agree with Chemar and think the Magnesium, clean diet and probably a decent multi are important. I also think a supportive doctor is important, but I am beginning to realize that my obsessive compulsive need to eliminate all of these tics, dragging him from doctor to doctor, from blood test to urine test & chastising anyone that offers him a potato chip or sprays a room deodorizer with 500 yards of him is as much (if not more) about me then it is about him. He is happy, healthy, enjoying life, friends & school. He was initially anxious at the onset of his tics, but that has subsided and his therapist says she no longer sees any anxiety and the very mild rigidity (OCD) he has already responded to with an increase in flexibility. So, maybe I'm the one that needs to relax, find the right doctor & maybe the right meds/sups. Because I'm the one that's not dealing with or accepting this mind boggling disorder. I also agree every plan has to be individual. I think the most important thing you said is that "He doesn't see a problem with his issues". How great for him! I pray my son feels that way when he is 12. Best wishes to you... -Lynn

Thanks again, I will keep the Mycoplasma in mind. Also, I had horrible allergies as a kid and my older son has struggled with asthma much of his life. So, it is not out of the realm of possibility that my young son could have it too. Not to mention, every time he gets sick it seems to settle as a cough.