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Hello, my name is Lynn and my son is almost 5 years old and we first noticed eye blinking back in August of 2009, the pediatrician said it was common and would go away on its own – 2-3 weeks later it did. Then in February of 2010 the blinking returned, but with facial grimacing, the pediatrician still said not to worry about it and that it was probably a transient tic. Well, in April of 2010 he began having a vocal tic too, it’s a low hum/grunt and almost overnight things went down hill. He now has about 5-10 different tics that he does periodically throughout the day. The most common is still the grimacing/grunting, but we’ve also noticed some behavior changes. He’s less independent and needs lots of hugs and reassurance from us and he has started to become preoccupied with numbers and counting (OCD?). We haven’t noticed any signs of ADHD, in fact my older son has ADHD and my younger son really doesn’t exhibit any of the common signs of the disorder. So, we are hoping that doesn’t manifest itself too. So, for now we are most concerned about the tics, they break my heart and I feel so sorry for him. The doctor referred us to a neurologist and we will be seeing her in June. I have slowly started him on the Bontech supplements (the doctor ok’ed it), but haven’t seen any improvements yet. I also use the Epson salt bath’s, which seem to work for him and our pediatrician recommended giving him Benadryl, which I was worried about, but it did seem to take the edge off the tics. However, I stopped giving it to him because I was worried that long term use wouldn’t be healthy for him. We took him to a cognitive therapist this Monday and she is going to work with him weekly through play therapy. Although he doesn’t exhibit any major signs of needing cognitive therapy, we figured it couldn’t hurt and the early intervention might help in the long run.

 

I just can’t break through my pain and sadness. I want to be strong for him, but everyday I’m actually terrified for the moment he wakes up (nice mom huh?), I keep wondering when the day is going to come that my son is so mangled with tics that I don’t even recognize him anymore. He is the joy of my life & I keep fixating on what will become of his life with TS. The other night we were outside blowing bubbles and he was laughing, giggling and we were joking around having fun and for 10 minutes I was so happy, but then the realty set back in and the pain was so strong I thought I might actually die. I will do anything and everything possible to help my son get better and for him to have the best life possible. I will love him to health. I just keep praying that my heart stops breaking and that I can be the person he needs me to be! Thanks for listening!

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welcome!! Did you have your son tested for strept?? has he had alot of strept?you may want to check out the PANDAS forum as well. Hang in there --we have all been there and know how frightening it is but things will get better you will get knowledge and be able to cope --you have found such a great site--so much info.

 

 

Deanna

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Hi Lynn

 

just wanted to leave you a (((hug))) and say I do know how it feels when you first have to come to terms thast something may be not functioning the way it should in your child

 

please try not to lose the precious time you have with him now by worrying about what may never happen! Many kids do outgrow "transient tics" and often there are easy to identify "triggers" for tics/OCD, like food and environmental allergies etc

 

and even if it is Tourette....there is still much hope for a relatively "normal" life as I can attest, with my son now 20yo and doing great! He got a TS dx when he was 10, and in retrospect, had likely been exhibiting symptoms from infancy!

 

i cant post long now, but did want to ask 2 things

 

one is whether your child may have had, or been exposed to, Strep or another infection around the time this started

and

did you happen to notice all this starting after any childhood vaccinations?

 

I have a link in my signature on the things we did to help my son over the years,

http://www.latitudes.org/forums/index.php?showtopic=687

 

and we also have a pinned thread with links to other potentially helpful threads here

http://www.latitudes.org/forums/index.php?showtopic=2459

 

hopefully that will give you some things to start looking into

 

all the best...and remember....worrying isnt going to change a thing! rather put that energy into finding solutions and just enjoy your child to the fullest because these wonderful younger years fly by before you know it!

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That’s the thing that is most confusing. He has been a completely “normal”, happy, healthy child up until now. I had an uncomplicated delivery with him; he was an easy baby, was always a great sleeper and was rarely sick. As for the toddler years, we went through the typical terrible 2’s/3’s, but outside of that he’s been bright, happy, independent, loving and a truly pleasurable child. Outside of some formula sensitivity, seasonal allergies and recently (the past 6-9 months) some tummy upset/diarrhea bouts (our family has a history of digestive/intestinal issues like IBS, Colitis & Crohns) he hasn’t had many infections other then pink eye, no strep that I know of and no other antibiotics. Also, the last vaccine he had before the tics started was polio in 4/2009 and the blinking started in 8/2009. So, it doesn’t seem like there’s a relationship there either. Also, we do not have a family history of any kind of tic disorder that anyone on either side can remember, except my one cousin (who was adopted). The only thing I can come up with genetically is the fact that ADD runs in my family and my dad, myself and my older son are very ‘restless’ people. I know our restlessness is not tics because we can stop/control it if we want to. Maybe it just manifested itself differently in my younger son. So, now I feel guilt on top of everything else. My genes probably did this to him.

 

Anyway, all that to say, he hasn’t been tested for strep. The pediatrician ordered a CBC, but that’s it for now. I asked about allergy testing and he said that we should wait a while and see if the tics go away. He also said the tics are not related to his seasonal allergies or any of his tummy issues. Of course, what does he know…?

 

Also, I have two questions. First, as I mentioned before, the pediatrician recommended we give him Benadryl to help with the tics, which I thought was odd for two reasons 1) I thought I read decongestants make tics worse 2) He had just told me allergies and tics are unrelated!?!?! So, does anyone have any experience with Benadryl and tics? Is there anything natural that acts in the same way as Benadryl? They do seem to take the edge off the tics for him. Second, I slowly started the Bontech supplements, but am wondering if there is anything additional I should give to him or are the Bontech’s all inclusive?

 

Thanks so much! Your help, support, information, links and hugs are more empowering and comforting then you will ever know. Cheri, I’m thrilled by your story and that your son is doing well! I love happy endings. I am trying to remember to enjoy this time with my son despite these nasty little tics. Some days it seems impossible, but I really am trying!

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Hi Lynn

 

posting in a rush so just wanted to quickly say that yes, for many people who have tics, allergies seem to be a factor and for them benedryl does seem to help both with the allergies and the tics...be careful of the other anti-histamines as some of them seem to have the opposite effect and can trigger more tics.

Also, one shouldnt be giving benedryl unless there is evidence of needing to give an anti-histamine...just mentioning this so that some desperate parent reading here doesnt run out and get benedryl in hope of it reducing the tics for her child!

 

re the BonTech supps...they are pretty complete in terms of what is needed by people with TS...are you giving the TS plus as well as the mag taurate? I know she also includes a separate fish oil supp which is excellent source of omega 3 but do be aware that for some people, fish oil seems to also be a tic trigger. for them flaxseed oil or other sources of omega 3 are better. but if your child tolerates fish oil, then Bonnie's is one of the best as it is very carefully formulated

 

do consider the possibility of a strep connection as it is a very real problem for many kids who have no family history of TS yet seem to suddenly manifest the symptoms. We have a separate board here for PANDAS and here is a website where you can look at the basics and see if anything fits http://www.pandasnetwork.org

 

also, did you happen to make any connection between the onset of his symptoms and when he had vaccinations?

 

hoping today is a day that brings light on your path as you seek to help your precious little one :wacko:

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Hi Lynn

 

(((hugs)))))) ((((((((((((hugs))))))))))) ((((((((((hugs))))))))))) to you!!

 

I just want to say that the history of formula sensitivity, the stomach problems, the effect of benadryl, and even the family history of GI problems ......

 

.........to me, this all screams : CHECK OUT THE ALLERGIES!

 

My son had motor tics that were affected by foods.....corn/wheat/milk/eggs/chocolate/.....

 

He was about your sons age when things became noticeable (the tics), and they did fade as he got into adolescence....he's 25 yo now, and I see no tics at all.

 

I lived in a rural area where not much was available, but did find a chiropractor who did "applied kineseology"....(muscle testing----it's painless).....we kept a diary of what son ate for a week. After that, I brought in samples of all foods he had eaten more than once. He'd put some food on his tongue, and test his muscles. Ones that were weakened when son had that food were noted. Then, we eliminated all of those foods. In less than a week, his tics decreased about 90% or more!! !!

 

Added back some foods, and they returned. Figured out which ones were the culprits that way.

 

PROBLEM WAS:......(sigh) ...living in the real world avoiding all of those things.

 

BUT....in the process, since we made diet changes as a family.....learned that my husband's skin problem RESOLVED when we eliminated dairy, learned that his HEADACHES were caused by CORN........anyhow.....my husband came from a long line of dairy farmers---> they all drank lots of milk, (cause they had it, and it was so available/"free")....and they all have skin or GI problems, which have gradually all been related to diary........

 

 

 

ANYHOW....

 

THere can well be other things involved as well....but I just wanted to throw in that similarity to your situation, to keep in the back of your mind as you explore things.......

 

(((((((((((((((((((((MORE HUGS!!!!!!!!!!!!!)))))))))))))))))))))))) and best wishes!! !!

 

 

PS:

There was a book by Doris Rapp (I think was her name) called "Is this my child" (I think)....that explained alot re: food allergies and children. You might be able to find a copy at your library ? It focused alot on ADHD, but the info on food allergies and how to detect I think would still be relevant and useful.

Edited by laurena82
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Hi Lynn,

 

Welcome, it seems not so long ago I was feeling all the emotions you are going through, that was 4 1/2 years ago. I can tell you there will come a day when you will see the light at the end of the tunnel.

 

I think the not knowing what will become of our kids is the hardest part to grasp, and make us moms sooooo upset we do wish we could take our child and just leave this world.

 

My son was screaming for a year and the 2nd year his vocal tic were just really loud. I thought he would never stop and never have a normal life like I dreamed for him. He also just exploded overnight after having 2 shots. I still look back at home videos and cry as I watch my son play and talk with no ticcing.

 

He is 16yo now and he still has vocal tics but they are more controlled and quieter.

 

Here is the good part... he is a wonderful baseball player, almost has his black belt in martial arts class. (took some time off for fear of injury) The reason he does not want to hurt himself is because he would not be able to finish fire school. He is on his way to becoming a black hat at the fire house where he volunteers, then he can go into a house and really fight a fire. I can't wait for next weekend when friends and family get to watch their loved one put out fires. If he passes the test he will graduate in July.

 

So you see... God has a plan for your child's life even if it is too hard to see it yet.

 

As an angel said to me... ( I call her that because she came out of nowhere)

 

"He will take care of it, He wants you to let it go."

 

Easier said then done I know, but hold on to those words they do come true. :)

 

 

(((((((((hugs))))))

CP

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Thank you all so much for your responses, I want to comment more on each one, but today was exhausting and I'm anxiety ridden over a planned trip we have tomorrow. I'll write more on Sunday.

 

Hope you all have a great Saturday and thank you, thank you, thank you for the information and support!

 

~Lynn

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Lynn, just wanted to come on and give you a cyberhug (((Lynn)))! What others have said about checking out allergies should be your first step. Histamine can affect many things in the body including neurotransmitters which can contribute to tics. I have noticed over time that my son tics are affected by his seasonal allergies and by stress(both good and bad) and that even the fall harvest moon can affect his moods and tics. We are 2 1/2 years into our journey(my son is 11 1/2 now) and I'm still looking for some answers but I've definitely come to terms with things and I've let it go so that I can enjoy him, no matter what is going on with the tics or the anxiety, etc. We, too, have no history in our families of tic disorders. But, my husband's family has a lot of anxiety and ADHD type behaviors. I noticed that my son is restless, like how you describe, and many times I have come to find out that things he does that seem like tics are actually things that he can control. One thing I ask him is, "Do you feel you HAVE to do that or do you think you can stop?" If he 'feels' that he has to complete the motion, vocalization, etc then I assume it's a tic. If not, I ask him to try to control it or stop and he can do that, too. Then, there are other 'habits' that he has that I just leave alone! For example: He plays competitive tennis and is nationally and regionally ranked as a junior. He had a habit of grabbing his crotch between points as they played out on court. It drove me crazy! So, I asked him if he could stop and he was able to stop but then a new 'habit' appeared, LOL! Now, he just grabs the side of his shirt and pulls on it between points. So, I just let that one go!!! I figured it's not as noticeable as him standing out on court grabbing himself!

 

Also, the more I have become familiar with tics, the more I see adults and other kids who have tics. My son sees them all the time. He told me one of his tennis buddies has tics and I hadn't noticed. Finally, I paid attention and sure enough the boy had obvious eye blinking and a head tossing(like he was getting his hair out of his eyes). And, I just wanted to add that ADD, ADHD, OCD, learning disabilities, anxiety disorders, etc are co-morbid conditions to tic disorders so that's why I think ds' tics may have a genetic component to them. And, if it hasn't been mentioned yet, I suggest cleaning up the diet at home if you haven't already done so. Getting rid of food colorings, nitrates, MSG, HFCS, and other additives can go a long way toward good health, not just for your boy but also for the whole family! Many people on here have kids who are sensitive to MSG and food colorings including caramel coloring. Yet, I have found that those things don't affect my son's tics(I don't like to allow those foods much but at tennis tournaments I do allow some Powerade if that's all that's available or I may allow some nitrated bacon or pepperoni at home), but they need to be ruled out at some point. So, I hope this helps and I hope you have a lovely weekend!

 

Bonnie

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Cheri – I am only giving my son the TS – Plus Control. The doctor didn’t seem to think the Mag taurate was needed, although he did say it wouldn’t hurt him. Do you think I should consider adding that? The doctor also recommended giving him Omega 3’s, but I haven’t started them yet either. I was wondering about the Kids Calm, would that be something I should try or would it be too much with the Bontech? Also, my son’s vocal tic is his most consistent; it’s not loud, but it is constant. I thought I read something about Acetyl L-Carnitine being good for vocal tics and I don’t see that on the Bontech ingredients list. Thoughts on that? Sorry for all the questions, I’m still trying to learn and decipher all this. As for the vaccines, I don’t think there is a connection. As I said, his last shot was polio in April, 2009 and the blinking didn’t start until August, 2009. I will have to research more about the strep; it’s a bit confusing to me. He’s never had strep throat or anything; he’s been a pretty healthy child.

 

Laurena - Thanks for the ((hugs)) and information. I am definitely going to check into the allergies, my family has a history of seasonal allergies and asthma and my husband’s whole family is lactose intolerant and my son eats/drink a lot of dairy. I too think the effect of Benadryl is interesting and might be a sign to check into the allergies further. My doctor wants to wait on the testing though, so I might go the independent route on my own. I will look for the book too!

 

CP – Thanks for the welcome and supportive information! I’m so happy your son is active, involved and doing better, hearing the positive pieces of all this gives me hope. I was sure when I first read about TS that my son’s life was doomed and that fear has been driving my life and severe mental anguish. I’m starting to see, through other people’s stories that my perception of this disorder might be a little skewed and its outcome not always as “doom” and “gloom” as I originally feared. I am also trying to hold onto the fact that I know God has a plan for my son’s life and that he is with my family even through this difficult and confusing time.

 

Bonnie – I appreciate (and need) all the cyber hugs I can get right now. Thanks for sharing some of your story. I find it interesting that you talk about some of your sons “tics” seeming controllable. My husband and I have noticed that our son seems to have tics that he can’t stop at all and in most cases doesn’t even realize he’s doing. However, his newest tic he is very aware of and tells me “I’m doing it because its fun”, he seems to have more control over this one. It’s confusing and we are unsure how to decipher and deal with what’s a tic, habit or simply a behavior – they all seem to be morphing together! Also, we have started supplements and are in the process of cleaning up his diet. The diet piece is overwhelming, but thankfully he’s not a super picky eater and loves fruit, veggies and the other night he asked for seconds of the organic, gluten free pasta. It’s the “treats”, “snacks”, "preschool food" and our traditional Friday night pizza that feels a bit more daunting at the moment.

 

Anyway, thanks everyone for making me feel welcome and I look forward to getting to know you better in the near future. God bless! :)

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Cheri – I am only giving my son the TS – Plus Control. The doctor didn't seem to think the Mag taurate was needed, although he did say it wouldn't hurt him. Do you think I should consider adding that? The doctor also recommended giving him Omega 3's, but I haven't started them yet either. I was wondering about the Kids Calm, would that be something I should try or would it be too much with the Bontech? Also, my son's vocal tic is his most consistent; it's not loud, but it is constant. I thought I read something about Acetyl L-Carnitine being good for vocal tics and I don't see that on the Bontech ingredients list. Thoughts on that? Sorry for all the questions, I'm still trying to learn and decipher all this. As for the vaccines, I don't think there is a connection. As I said, his last shot was polio in April, 2009 and the blinking didn't start until August, 2009. I will have to research more about the strep; it's a bit confusing to me. He's never had strep throat or anything; he's been a pretty healthy child.

 

hi Lynn

my son never took mag taurate but instead used magnesium and taurine separately with success.

I dont recall how much magnesium is in the TS-plus but people with TS usually benefit from a higher dose

 

I dont recall if you said you are doing epsom salts (magnesium sulfate) baths, but if not, highly recommended as a pre bed relaxant. The transdermal magnesium calms tics and the sulfates are excellent detox. 2 cups epsom in a tub warmest water..soak for 15-20 min

 

we never used acetyl-l carnitine but did use the plain l carnitine very successfully for vocal tics

 

as both taurine and carnitine are amino acids, if you do try them, start at lowest dose and only one at a time to be sure your child responds well to them, as different people react differently to different aminos

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Hello, my name is Lynn and my son is almost 5 years old and we first noticed eye blinking back in August of 2009, the pediatrician said it was common and would go away on its own – 2-3 weeks later it did. Then in February of 2010 the blinking returned, but with facial grimacing, the pediatrician still said not to worry about it and that it was probably a transient tic. Well, in April of 2010 he began having a vocal tic too, it’s a low hum/grunt and almost overnight things went down hill. He now has about 5-10 different tics that he does periodically throughout the day. The most common is still the grimacing/grunting, but we’ve also noticed some behavior changes. He’s less independent and needs lots of hugs and reassurance from us and he has started to become preoccupied with numbers and counting (OCD?). We haven’t noticed any signs of ADHD, in fact my older son has ADHD and my younger son really doesn’t exhibit any of the common signs of the disorder. So, we are hoping that doesn’t manifest itself too. So, for now we are most concerned about the tics, they break my heart and I feel so sorry for him. The doctor referred us to a neurologist and we will be seeing her in June. I have slowly started him on the Bontech supplements (the doctor ok’ed it), but haven’t seen any improvements yet. I also use the Epson salt bath’s, which seem to work for him and our pediatrician recommended giving him Benadryl, which I was worried about, but it did seem to take the edge off the tics. However, I stopped giving it to him because I was worried that long term use wouldn’t be healthy for him. We took him to a cognitive therapist this Monday and she is going to work with him weekly through play therapy. Although he doesn’t exhibit any major signs of needing cognitive therapy, we figured it couldn’t hurt and the early intervention might help in the long run.

 

I just can’t break through my pain and sadness. I want to be strong for him, but everyday I’m actually terrified for the moment he wakes up (nice mom huh?), I keep wondering when the day is going to come that my son is so mangled with tics that I don’t even recognize him anymore. He is the joy of my life & I keep fixating on what will become of his life with TS. The other night we were outside blowing bubbles and he was laughing, giggling and we were joking around having fun and for 10 minutes I was so happy, but then the realty set back in and the pain was so strong I thought I might actually die. I will do anything and everything possible to help my son get better and for him to have the best life possible. I will love him to health. I just keep praying that my was related to that. heart stops breaking and that I can be the person he needs me to be! Thanks for listening!

So much of your post reminds me of me and how I was feeling in the midst of my son's tics. He has had two explosive episodes that lasted for about 3 months. They always start in November and end in late Feb- early March. They start out explosive with nose scrunching adds eye blinking, sniffing and then slowly taper off. Both times my son had the flu mist, and I think (atleast this past year) they were related to that. I did try the kids calm and I think it helped. I also gave him 500 mg of vit C to help boost his immune system. I tried the flax oil but had a hard time getting him to takle it. My child is extremely picky!!! I used motrin incase there was swelling in his brain from the vaccines. I think the thing that helped the most was epsom salt baths every night. That and time...

I am so sorry you are feeling so helpless. I remember feeling that exact way. I would lurk on this forum for hours trying to find an answer, a cure for my little guy. I never posted though because I felt so crazed that I couldn't even put into words how I was feeling. Now that things have calmed down it's easier for me to talk about. All I can say is just shower him with love, hugs and kisses. I would talk about it with my son a lot trying to get an idea of what he was feeling. I beat myself up a lot that I gave him the flumist. I have a strong family history of ADD (I have it ) and also tics that a lot of men have on my side of the family. I think maybe it's genetic and it was triggered by vaccines or allergies. I still have not figured it out. All you can do is try to figure it out and if you can't it's ok. Some kids have tics.. mine included.. and that's just the way it is. It doesn't make them any less amazing (infact it makes them more amazing) All we can do is love them to pieces and try and do the best we can. I encourage you too get all the info you can and try everything that makes sence for your son.. This forum was amazing in my time of darkness. I found so much strength from here and never once spoke a word to anyone. Please don't beat yourself up. From your post I can tell you are an amazing mother and you love your son so very much. At the end of the day, that is all that matters!!!

-Molly

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Lynn,

 

I wanted to tell you that pink eye in the form of a bacterial conjunctivitis is usually caused by staph or strep. It seems in autoimmune conditions, symptoms can take weeks or even months in some cases to really manifest.

 

Personally, in regards to vaccines, I feel that we don't have nearly enough research to know what role these things are playing in the manifestation of neurological problems, allergy, autoimmunity etc. If your son is due for any in the near future, please research this topic carefully. There are many posts on this forum that would probably get you pointed in a good direction for gathering info (just type "vaccines" in the search feature). Also, many have shared their experience with them in different posts.

 

You have found a wonderful place for support and knowledge. welcome!

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Lynn,

 

Welcome and i am so sorry that you are in a very sad place. I can relate as i have been in your shoes.

 

My son has food/environmtal allergies and asthma. Here are the modalities that has worked for us. NAET for desensitization. Craniosacral for his neck tics in particular. Accupuncture for tics. It was very effective but my son cried when he got the needle so we had to stop. We also eat mostly organic and avoid all artificial anything & toxic chemicals. Basically, i do everything i can to not to aggravate his nervous system so he has a higher threshold.

 

I have used epsom bath, magnesium creme, natural calm and they seem to help to reduce the tics. I hope this is helpful.

 

Pat

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Lynn,

 

I was in your shoes big time> Believe me it is hard but you will figure it out. Benedryl did work for Nick but I knew long term wasn't a solution. Try and heal your child's gut. Order probiotics from the candida wellness center. I also get silver from them. Hang in there.

 

 

huggs

 

 

abbe

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