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Gina

Long time no post.... Son not doing well

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Hello All,

 

It's been a very very long time since I have been on the site. Mostly because we have had things under control but for the past 6 months or so things are a bit crazy. My son in 11 (12 in Aug) and in 6th grade. He was diagnosed with TS at age 7. He has had some major tics on and off in the past 4+ years. He has only motor tics and an ocassional vocal tic of throat clearing. He has no learning disabilities or OCD, ADD, etc.. He is actualy a very smart kid has a 4.0 GPA, is Student Body President, has lots of friends, loves to argue with his sister and his parents. A very "normal" kid, he just has some crazy tics.....

 

This past 6 months or so things have been really bad with his tics. They are painful and very noticable where as befor we actually had them under some form of control where they weren't so bad and if they got bad we were able to figure out why (something he ate, stress, allergies etc.) Well we can not pinpont these ones. He has a really bad neck/head tic and a hand/fingers tic both of which are really painful for him. He wont go to a chiropractor because he doesn't like the cracking and I have taking him to one that dosent crack but its a 2 hour drive and not convenient at all. Looking but still havent found one in our area. I have had him on his vitamine regimine and we finally found a Dr. that is a Natural Medicine doctor that we have been seeing but its getting really expensive and I am not seeing any changes. My son just finished Heavy Metal Detox due to High levels of Mercury and Lead in his system according to a test done by the Dr. Still no change in his ticcing I have to call his Dr. today to see what the next step is. Here goes more $$$ with still no results. As you can see I am starting to get very discouraged and now so is my son. I am not sure what else to do to figure this all out. He has been food allergy tested with the results of a food sensitivity to egg. We took egg completely out of his diet with no results and slowly added it back in with still no results good or bad. He has a lot of seasonal allegies to trees and grasses but they never seem to show up in a typical allergy way (stuffy nose, sneezing watery eyes, etc) they show up in tics. Every year around April he get tics that are intense and constant and usually a new one shows up for a while and than disappears. We have learned to accept that knowing that its what happens around this time of year. But now he is ticcing so bad and on top of that he has new tics due to "april" and I am ready to scream. I can't even imagine what he is going through. I know he is frustrated because by the end of the day he is very short tempered with me, Dad and sister.

 

Anyway what I am looking for here today along with the great support that always make me feel better is .... What should I be looking for that maybe I'm just missing. If anyone has any suggestions please let me know. I am starting to feel so helpless again and I have not felt this way for such a long time about his TS. My son asked me the other day if we could just put him in a full body cast for a while to make it all stop . My heart sank even though I know he was just kidding, I know he needs some relief from all this.

 

Thanks for listening,

Gina

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((((Gina))))

 

it is good to see you again, tho I am so sorry it is under these circumstances

 

I know this is going to be hard to hear, but at 11yo your son is now in the classic time for the worst of TS.......when the puberty hormones are on the rise.

 

are you doing Epsom Salts baths? Highly recommended for these waxing times

 

I would also try Bach's rescue remedy as that can help to bring calm with severe tics and also seems to help with allergies

 

also, in terms of the supplements that he is on....can you list them and we can see if there is anything we can give input on

 

The best encouragment I can give you is to remember that THIS TOO WILL PASS

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Hello GINA

On one hand I am feeling sad along with you that your son seems not to be doing well right now, but on the other, it is very uplifting that you describe him as having a high grade point average, having lots of friends and president of student council...yay! That makes me feel so good, that this TS has not impacted him socially. I think that is what many of us are inwardly fearful of, that our children's full potential will be impeded.

 

You did say his symptoms seemed to be in control for a while, are you still managing it the same as always, and could you elaborate more on what you have done in the past? Did you only recently see a natural doctor, and I am very interested to know what type of metal detox was used, and how long that took, since you mention it is "completed". My 7 yr old diid a urine challenge test with DMSA and showed mercury and lead also.

 

Sorry to ask so many questions when you are not feeling too "up", but there are many of us here facing the same challenges and it is good to bounce things off each other to see what seems to work for some....or not.

Also, I noticed on one of your previous posts you were wondering about sharing a tape on TS with the school--would you mind if I asked how you handled that aspect since I am currently having to start discussing my son's issues and concerns with his teacher and school psychologist. Did you do this early on, I mean has he had any educational plan in place for several years now.? I am wondering if it is better for his peers to be aware of his issues at an early age, or to not say anything until necessary. Thanks in advance for your response, and hopefully some of us here will have some input on your protocol, since it seems its been a while and maybe there are newer things you have not tried yet. Things have gotten better in the past, so maybe they will now too. A saying I've heard that I like is "the biggest prophet of the future......is the past".

 

Regards

Faith

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Chemar - I kind of thought it might have to do with the whole hormone/puberty thing but I wasn't sure. Just what we all need another reason to hate puberty...... What exactly is an epson salt bath and how and why does it help? Also I will try the Bachs Remedy, I suppose I can get it at a health store. Anything to help ease the stress for him certainly can not hurt.

 

What I have Dan on now as far as supplements are

 

Multi Vitamin

Childrens DHA (arctic Cod Lover Oil)

Juice Plus Garden Blend (veggie)

Juice Plus Orchard Blend (fruit)

Mag. Taurate

Calcium Chews

 

He just finished a detox for Mercury and Lead and we used the following (As I posted earlier no difference in tics throughout the process)

 

Captomer (DMSA) - 3 days on than 11 days off

Heavy metal support (days when he was not taking the DMSA)

Liver Cleans

Nutra Flax

Juice Plus

Childrens DHA

 

 

Faith - Hi nice to meet you, I'm glad it was comforting for you so see how well my son is doing socially. That is the reason I say it (not to brag) I know when he was first diagnosed and I was dealing with all those emotions that for me I hit such a depression because I thought my son would never be "normal" and I was dealing with a loss which was not really a loss but at that time that is how I saw it. I still get emotional during times like this when its so hard to see him ticcing away but as Chemar said "this too shall pass" (although its never quick enough)

 

I ended up not sharing the tape with the school only because it was my sons request. But when his TS first came about it came full force during our spring break when he was in first grade. He left for spring break fine and when he came back to school he had a leg kicking tic and an arm raising tic. Not anything he could hide in anyway. He had a wonderful first grade teacher that when I spoke to her we agreed that she should talk to the class without Dan in the room. She spoke to them at thier level and gave them just enough information that a 7 yr. old can handle and those kids have never teased or given Dan any grief. Now that he is in 6th grade some kids will ask him questions and depending on who it is or what kind of mood Dan is in he might explain it or his standard answer to "Why do you do that" is "Because I can" (thats the smartass 11 yr old in him). I do think that it has made school life easier for him to have his classmates know what was going on and it also made it easier on his friends when someone would ask why does your friend do that? They say, he has Tourettes. Dan has never had any type of educational plan because he has never needed it. I have just always spoken to the teacher myself and explained to them that you will see my son ticcing and thats what he does please just ignore it. I have not had any issues with teachers, they have all been great. But I am also very involved in our school so I make sure he is in the class with a teacher that I know will be a good match for him. Next year is Jr. High and its all up to him...... He can't wait and I'm scared to death!

 

Thanks and talk to ya later,

Gina

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Gina,

 

Hi... I'm so sorry to hear your son is having a bad spell right now. I do hope it passes quickly, for all of you. I wanted to ask about the Juice Plus. Which one does he take? (Adult/child) (Chewables/gummy/capsules) The reason I ask is I have the chewables, and when I was told about hidden MSG (maltodextrin and natural flavers) ars listed as ingredients in the chewables. I don't know about the gummy, but the capsules don't list any hidden MSG words. I did talk to our sales rep. about it, and she called the company they said Juice Plus has NO MSG!!! I just wanted to put that out there for you. I can't bring myself to give my son the Juice Plus based on their word.

 

I was also wondering if your son was normal height/weight for his age. My son is small for his age and has always been growth wise about 2 years younger. Having said that, he is 13... 4'10 and 90lb. I thought mayby if I shared what he is taking you might want to tweek his supps a bit.

 

Multi

Calcium 1000mg

mag 615mg (Natural Calm)

Zink 50mg

Vit E 400IU with Selenium 100mcg

B6 p5p 50mg (just started that last week) another miracle vit for him, he is doing great again. I think I can rule out spring as the cause of the increase 2 weeks ago.

 

I have others to add, but I'm taking it real slow.

 

C.P.

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Hi Gina,

Sorry to hear about your son's having such a hard time right now. You are being a great MOM!

 

Something you said here is important:

He has a lot of seasonal allegies to trees and grasses but they never seem to show up in a typical allergy way (stuffy nose, sneezing watery eyes, etc) they show up in tics. Every year around April he get tics that are intense and constant and usually a new one shows up for a while and than disappears. We have learned to accept that knowing that its what happens around this time of year. But now he is ticcing so bad and on top of that he has new tics due to "april" and I am ready to scream. I can't even imagine what he is going through.

 

On the evening national news tonight, asthma was the topic. A Doctor stating that the air in Atlanta was measured for pollins that is ususally 100 plus and instead was thousands plus. A map showed the middle of America from coast to coast going south direction is the area of increased pollin all due to the goofy weather patterns from the past year, which in turns affects the earth, plant life and more pollin released in the air right now.

Maybe this is affecting your son. I thought it was very interesting having read your list of his symptoms, that are allergic and also brings on the tics with the immune system of overtime.

 

Hang in there, better days ahead.

Mustang Carole

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Gina,

 

I wanted to mention that it is said that the highest level of ticcing for most kids is between the ages of 8-12. TS gets worse before it gets better.

 

Just wanted to toss that out as what your son is experiencing sounds typical for TS.

 

http://pediatrics.aappublications.org/cgi/...t/full/102/1/14

 

Based on data collected during the initial telephone follow-up and the in-person interviews, the worst tics occurred between the ages of 6 and 15 years (mean: 10.0; SD: 2.4). Figure 1 presents a histogram of these data by year. The level of tic severity during the worst period was positively associated with the patient's age during the worst-ever period.

 

...

 

The natural history of TS and other chronic tic disorders is not well-understood. In this report we present an explicit model of the time course of tic severity over the first 2 decades of life. This model extends the findings of previous follow-up studies by offering age-specific tic severity estimates and by defining a period of maximal tic severity that usually occurs between the ages of 8 and 12.

 

...

 

Ages 8 through 12 are likely to be critical. If medications can be avoided through this period, the patient may have a good chance of never needing them. Although anti-tic medications are available, none are ideal. Over the longer term, starting medications may do more harm than good, given their potential adverse effects and the difficulties associated with medication withdrawal. This is particularly true of the standard neuroleptic agents such as haloperidol and pimozide.33

 

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Best wishes.

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Gina *hugs* long time no see too.

 

My son had TS when he was 11, had quite a bad case of head and neck tics. That was in year 2004.

 

At that time, I have absolutely no idea what TS is all about until the neurologist announced that my son has TS, and he put it simply, meaning extra chemicals in his brain thereby causing the tics. My son was prescribed halo and was taking it regularly. I did not feel comfortable with my son taking it since it’s a form of drug and one of its side effects is tardiv, another kind of permanent tics.

 

Me and my husband surfed through the web for more information on TS and by chance stumpled on A C N, and Thank God we were so glad we did. I am very grateful and indebted to all the members, and especially to Chemar and Claire who were all so ready to share their knowledge and experience on supplementation and ways to provide relief to my son.

 

My son is doing quite well today as compared to 3 years ago. Today he still does tic but so much milder, about 80% less. He used to tic so much he could not even have his meals properly. Me and my husband used to be so very upset for the pain we saw in our child. The sharing by the members here eased me with a lot of encouragement and relief. A big Thank You! If not for you folks here, imagine my son will still be on halo!

 

Till today I am still kind of trial and error on his supplements, hoping to find answers for the other 20% tic. <_< But there are two main ingredients that I will never take away from his diet – B Complex 50 and Calcium Magnesium 2:1. These are the two main supplements that I first started my son on and at the same time gradually weaned him off halo. His tics were reduced substantially after taking the B Complex and Calcium Magnesium.

 

Gina I would strongly recommend them to your son too, check out on Chemar’s thread on Supplement Treatment for Tics, I follow closely to her recommendations. In fact I find it so useful and work wonders for my son, I had it saved in word format so I can refer to it anytime.

 

And here is another extract I think I copied from Mayo Clinic Specialists into a word document.. would like to share the info here too for your easy reference, I am not sure if you have read it before..

 

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

Supplements and herbs

 

The Minerals magnesium and potassium are vital for neuromuscular function and muscle control. A deficiency causes tics, trembling or cramping. The B vitamins help calm the nervous system, reducing symptoms of trembling brought on by stress. Vitamins B12, B6 and niacinamide are particularly important. Tics and tremors have been stopped with vitamin B6 and magnesium supplements combined with a healthy diet The B vitamins are best taken together to prevent any imbalances. Niacinamide and vitamin B6 are available in many B-complex combinations. However, vitamin B12 is often poorly absorbed through the intestinal tract and should be taken in a sublingual form.

 

Calcium is also important for muscle control and proves helpful when taken with the above vitamins and minerals. Evening primrose oil is also beneficial for alleviating all kinds of tremors. The essential fatty acids in evening primrose oil are vital for normal nervous system function.

 

Herbs are virtually free of side-effects and help make living with Tourette's syndrome more bearable.

• Take chamomile, hops, lady's slipper, passion flower, skullcap, wood betony, St. John's wort or valerian in tea, capsule or tincture form. These herbs provide vitamins and minerals, and relax muscles and nerves. For tea, add 1 cup of boiling water to 1 tsp. of herbs; steep for fifteen minutes; strain and drink three times daily. For tinctures, add 20 drops of extract to a glass of water daily.

 

How much to take

• Magnesium, 500 mg

• Vitamin B complex, 100 mg twice daily or pyridoxal-5-phosphate, 50 mg daily

• Vitamin B12 sublingual tablet, 100 mcg

• Calcium, 1,000 mg

• Evening primrose oil, two 500 mg tablets three times daily

• Niacin, 1,000 mg

 

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

 

The above is just a reference and the dosages may be quite high for a young child, so always check with your doctor first. My son is not taking all the above. He is currently taking B Complex 50, niacin, Calcium Magnesium, Lecithin. He has mild vocal tics, usually happens in the evening when he is using his computer, so I just started him on L-Carnitine too. I hope I am right on this one, that L-Carnitine works for vocal tics?

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what great replies you have received Gina <_<

 

 

as to your question re EPSPM SALTS BATHS

Epsom salts is magnesium sulfate and spaking in a warm tub with 2 cups of the salts dissolved in the water brings an immediate calm and seems to soothe my son's tics and give him a very peaceful nights sleep.

He soaks for around half hour, tho 20 min is fine. He likes to have a cup of chamomile tea and I always try to get him to drink a bottle of Aquafina water while soaking too

 

other people have also commented on the benefits of these "sitz" baths on reducing tics

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BIG Thanks to you all,

 

I have some great info here to work with. This is why I always end up back to this board. Great People and Great Information

 

I realized that before I had started Dan's heavy metal detox and all of his supplements changed he was taking more B1 and B6 which I did not put back into his daily routine. I guess I forgot???? So I will start those again and get him into the Epsom Salt baths to help him relax. We will see how that goes and take it from there.

 

Regarding the Juice Plus, Dan takes the capsules they were recommended by his Dr. My daughter takes the gummies, she has no signs of TS but she takes them because she is such a bad veggie eater. My Mom knows more about them than I do so I will have her look into the MSG question and see what she comes up with.

 

Thanks again for all the information and suggestions.

Gina

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BIG Thanks to you all,

 

I have some great info here to work with. This is why I always end up back to this board. Great People and Great Information

 

I realized that before I had started Dan's heavy metal detox and all of his supplements changed he was taking more B1 and B6 which I did not put back into his daily routine. I guess I forgot???? So I will start those again and get him into the Epsom Salt baths to help him relax. We will see how that goes and take it from there.

 

Regarding the Juice Plus, Dan takes the capsules they were recommended by his Dr. My daughter takes the gummies, she has no signs of TS but she takes them because she is such a bad veggie eater. My Mom knows more about them than I do so I will have her look into the MSG question and see what she comes up with.

 

Thanks again for all the information and suggestions.

Gina

 

 

Hi Gina, I just wanted to add to this thread that my son is also going thru chelation metal detox. We are on the third year now with breaks.

We thought we were finished since no lead or mercury was showing anymore. We decided to use EDTA in terms that it may be a once a month long term detoxer since he has such a low natural detoxing ability, practically zich. Boom, he went from no ticing for 6 months plus to heavy ticcing. Had a urine challenge test done and his mercury was past 99% tile, practically off the charts and I mean the chart that shows the graphing print out as well. Well after another 7 months or detoxing his mercury is still extremely high but we are planning on stopping the chelation when the mercury is no longer shown. Just a thought that perhaps not all of the mercury is out.

Another thought, our son does not respond well to calcium supplements and for some reason started to respond bad to the fish oil, same company that you get yours from even if he did well with it for 5 years.

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