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Need your help/suggestions for my son's mouth biting and his mood


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Hello All,

I posted following in PANDAS forum, I think I should post it here as well, maybe any of you here has good suggestions, thanks everyone!

 

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Hello All,

 

My son has TS, diagnosed alomst 6 years ago, he has almost all kind of tics --- vocal, yelling, "dirty word", " repeatable certain word", urinary frequency, neck jerking, shoulder jerking, eye blinking.... some of them showed up after he started meds, such as dirty word, repeatable certain word, shouting.

 

He was ON ton of med in the past almost 6 years, including SSRIs med. His reaction for those med always were not good enough to be accepted by us and obvious side effect showed as well.

 

Now he has been having mouth biting for alsmost one year, there are several ulcers in his mouth, he asks us why he always wants to chew his mouth (cheek), he knows he should not do this, he wants to control, but is not able to do so. this annoies him so much.

 

Also his mood is bad, cries a lot. Everymorning, once waking up, he cries --- he said the ulcers in the mouth are so sores ( I guess this is the one reason for crying, but not all ). Everyday, after school, he starts crying from start of doing his homework to the end of it. We told him, he is not necessary have to do it, but he does not agree with this, he forces himself to sit there to do it with crying and we have to sit there along with him to help his homework as well every day. This has been being like this always for many years.

 

about 10 days ago, his meds were completely weaned off ( gradually ). In the past 6 years as I said we tried ton of meds, including: Haldol, Tiapride, Topiramate, Olanzapine, risperidone, Zoloft, paroxetine..... some of them we just tried for a very short period. But Haldol, Tiapride, zoloft and paroxetine we took them a relative long period. Like I said, all meds effect did not perfectly control his symptom, just controlled part of it and obviously side effect ---- for example, sudden upsetting with no reason, twisted his whole body, hit his head with fist....

 

we tried a couple of times to stop his meds, but failed becasue of his symptom got worse, we feared. Doctors here emphasized us many times we should not stop meds.... they said he has TS+OCD+depression, anxiety....... This time, we finally weaned off his med completely and during weaning off the med, we put him on the Inositol, vitamins and after his SSRIs med was stopped we put him on 5HTP as well. Well, this time he did get worse also -- that is his mouth biting, in the past there was only one or two ulcers he bite in his mouth, now there are 4 or 5 them he bite. His bad mood is still there unchanged like before. we give him following right now: He is 11 years old, weights 170 lb.

 

morning: 2g inositol, 200mg Pantothenic Acid, 1 teaspoon Natural Calm.

Noon: 2g inositol, 1 tsp natural calm.

evening: 2g inositol, 50mg 5HTP, 50mg B6, 1 tsp natural calm

 

We have not seen any improvment yet from above supps. He has been ON inositol for about 50days while I started weaning off his meds. He now still has some tic, like vocal, but it is OK, comes and goes, not bother him much. just two big problems still there: mouth biting (inluding mouth opening, not always, I should say often has mouth opening), mood issues like I mentioned above, also looks like he would be very upset to do something which he should do on himself, such as after homework done, he would not pack up everything on the desk, the desk was jut so mess, once we require him to do this, he would be so upset, another example after he drinks, he would put the cup where ever he sit, even on the room floor.

Anyway, two main issues -- mouth biting including mouth opening ( opening his mouth as far as he can, musle tension casuing pain on cheek) and mood issue are almost kill all of us now. We are yelling to each other so often becasue of he does not listen to us most of time for anything. we know we shuld be patient enough for this "sick kid", but how hard it is . We must find a way to get this under controlled.

 

Do you think it relates PANDAS? He does have tumid tonsil, sometimes has tonsil infection, after infection, he had sore throat, and got fever sometimes. We live in Beijing, we almost went over all related hospital already in the past years. I don't think Doctors here know much information about PANDAS, neither its diagnosis. So my quesitons is I assume my son is PANDAS, what is the easiest treatment way should I take? Just give him azithromycin? So azithromycin is easiest and efficient way for PANDAS then? For how long time to use azithromycin to start seeing the improvement usually ? Is there a simple bood test to see if he has any kind of virus? Strep is one virus, what any other kind of virus I should look for in the blood test? Doctors here may don't knwo PANDAS, but if there are some virus in his body, they got to find right way to kill the virus. Or maybe I just ask doctor to prescribe azithromycin, just give a try. Is injection better than tablet? how many days for one period of treatment? How many days usually I will start seeing the improvement?

 

Appreciate for any input for that who has such experience on this.

Thanks,

Jack

 

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My son is just unhappy everyday. This is biggest issue for us. Maybe this is really caused by his mouth biting and the thought to bite the mouth.

I am ordering SAMe, ST. JOHN'S wort, D-phenylalanine, will take a while to receive them.

After his meds were completely OFF, he started waking up several times during sleep at night, once wakes up, he will feel upsetting, sometimes cries, but he still can get back to sleep in 20 or 30 minutes. we tried him low dose of Melatonin also ( I got Puritan's Pride 1mg Vegetarian formula melatonin, I tried 0.5mg/night for him), looks like this triggers his vocal tic and does not help much for his sleep.

 

Appreciate all of your help and advise !

Jack

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Hi czl, I am very sorry to hear about your son's stuggles. TS can be a son of a gun to battle on a daily basis. My son and I have it - me for 33 years. We have found, as many in this forum, that cleaning up the diet often has positive results. That is eating foods without any artificial anything. All natural foods. Have you tried to eat a "clean diet". It can be difficult at first, until you get used to it, but usually well worth the effort.

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Jack:

 

I wanted to reply to your post because my son, who is 9, is also moody, gets very upset a lot daily, has a lot of trouble doing things like cleaning up his belongings etc, and used to chew on his mouth.

 

I am not big on diagnoses, but for the record my son is diagnosed with OCD, childhood anxiety disorder, ADHD, and Tourettes. For the mouth, have you ever heard of "Chewy tubes"? they are used by occupational therapists for kids to chew on to strengthen the mouth and provide sensory input. Of course I dont know if your sn being 11 may not want to use these or if he is a chewer, like does he chew his shirts? But if interested you can google chewy tubes. Also, I wonder and I dont remember if you mention in your post, if your son has anxiety issues? I used to chew on my lips when I was little and it was anxiety. Have you researched any natural supplements for anxiety? I am in the process of researching that for my son.

 

Also dont forget about what he is eating - it is so important. If you havent I would consider removing all artificial foods and most processed foods from his diet. My son was addicted to junk and slowly I got him off, it wasnt fun but we did it, now he eats whole foods mostly, like chicken with a vegetable for dinner, a piece of salmon, turkey breast, fruits, rice products like crackers and rice cereal with no other ingredients, and some all natrual potato chips or popcorn. What you eat makes a difference!

 

You mentioned melatonin.....my son takes Biochem 1mg at night and it works great for him, it is free of any preservatives etc. If melatonin didnt seem to work for you son you can consider herbs like KavaKava or Valerian, both natural tranquilizers.

 

I like a web site called alternativementalhealth.com, where I am learning about anxiety. I dont know why you havent seen a difference in some of the things youre trying. To this day sometimes my son does well for a while and then seems to have all his issues again and we dont know why.

 

With the kids calm, one teaspoon MAY be too little (I am no doctor, just speaking based on what ive read because I give my son kids calm). I give my son 3 tsp. once a day and I also give straight magnesium which I have read, more than anything is very very important nutrient in calming the nervous system and muscles. I love Floradix Magnesium, it contains no other vitamins in it and I give it first in the morning before food.

 

Have you tried epsom salt baths? Or detoxing? I am going to be trying some activated charcoal or perhaps bentonite clay, who knows what toxins or metal may be built up in the system. As far as PANDAS i dont know about that, if thats a cause then that would be helpful for you to find out.

 

One thing I will say, when it comes to things like you mentioned that when homework is done your son wont put his things away - I dont know if that only happens after HW because its such an awful experience or if thats something you find in other areas - my son gets very angry and freaks out when its time to clean anything up, put his things in his backpack for school, etc etc - I am to the point where I kind of make him do it, not in a mean way, I am sympathetic to him that its hard to do, but the MORE he does it, the less he freaks out about it. Now he will put up some fight and scream a little, but its a long way from kicking me and spitting at me and throwing things. I just let him know calmly that I will wait for him to do it, I understand how hard it must be, but that nothing else can really happen until he does it. I would put up with whatever tantrums and I have seen that over time he WILL do it when he knows he HAS to, and like I said none if this is in a mean way. I have learned alot from a book called Explosive Child, it may not apply to your son but along with my sons mood problems and anger, he reacts to everything as though you are putting a gun to his head, and this book helped SO much. Just one parent to another.

 

If theres anything more I can tell you about please let me know. My son doesnt chew his mouth any more, though there are other things he does do, but they are not nearly as damaging. I give him lots of things to fiddle with with his hands, I put lip balm on his mouth to make it greasy, etc.

 

Wishing you the best.

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some of them showed up after he started meds, such as dirty word, repeatable certain word, shouting.

 

He was ON ton of med in the past almost 6 years, including SSRIs med. His reaction for those med always were not good enough to be accepted by us and obvious side effect showed as well.

 

 

This upsets me. I have to wonder why these meds are often prescribed for people when they obviously don't work well. trying med after med just makes me think they are shooting in the dark and it is hit or miss. I am starting to believe that the kids who take meds become worse off with their symptoms in the long run. I am feeling that they possibly mess up a child's system and the body is constantly fighting to adjust, thus causing more problems and symptoms, and then you don't know what is caused by his natural ts or is aggravated by the meds? :) What do you all think?

 

CZL,

obviously things have not worked with the medications, so I do hope you can find some other alternatives. I encourage you to explore the PANDAS avenue, perhaps you could get a doctor to prescribe antibiotics just to see what happens. Search for a doctor who might have been trained in America and show him some information that you could find regarding PANDAS on the internet. It may not be the answer, but its a start.

 

Also, could you tell us this,... I couldn't tell if you are saying things are somewhat better or worse for going off meds. I would not expect things to be 100%, but biting on mouth to me is better than having vocals of words, so could you tell us the difference in symptoms while on meds and then what symptoms he shows while off meds? It will be a slow ride, but I just think that if the meds have not made anything better in six years, then perhaps his symptoms will still be there while off meds, but perhaps some of the other side effects it causes is just adding to his problems. I don't know what advice to give, for I don't want to tell you not to use meds, but I am just wondering if meds just complicate matters in the long run.

 

What do you all think?

 

Faith

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