Need your help!

[CZL]

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

[Chemar]

so glad you have posted this here Jack!

 

if this is PANDAS, the parents on this forum will be able to give much guidance

 

praying for answers and help in healing for your dear son

[P_Mom]

Jack,

 

I am curious as to why you feel it is PANDAS....did your son have a sudden onset of symptoms with documented strep?

Do his symptoms increase dramatically with illness/vaccines/strep?

 

Kelly

[EAMom]

Hi Jack,

 

I do believe that some kids (esp. after a while) can have PANDAS which becomes more "chronic"...not the typical waxing/waning episodic pattern.

 

Has your son had positive throat cultures for strep? That would be important to do. Get a throat culture now if he hasn't had any. Do the 72 hour culture if the rapid is neg. If all that is negative you could consider getting strep titers done (ASO/anti-dnase B ) ...although be warned that many PANDAS kids have low titers (and normal kids can have high titers), so this isn't exactly a "test" for PANDAS.

 

You could try a 2mo. trial of Azith. and Advil together. If your son is 170 pounds (is this right?) then you would want to use a higher dose of Azith. than most smaller kids use...I would try 500mg daily for 2mo. You could also do advil (aka ibuprofen or motrin) with the Azithromycin. You could do the advil 2-3 x daily to start (1st week or two). 1x daily if you want to continue long term. You might not see an immediate improvement with the azith/advil...so go the entire 2mo. before you decide it doesn't work.

 

Unfortunately, there is no "easy" treatment for PANDAS. But, a trial of Azith/advil is, IMO, much safer than loading your son up with a lot of psych. drugs (which don't seem to be helping much anyway). If, after 2mo. of Azith., there is no improvement, then I would put PANDAS down as less likely for your son. I wouldn't expect a kid with non-pandas tourettes to improve on azith/advil.

 

AS a note, Strep (group A beta hemolytic strep...GABHS) is a bacteria, not a virus. However, some PANDAS kids end up reacting to viruses in addtion to strep.

 

Also, I'm curious did they ever figure out the cause of your son's mouth sores? Herpes?

 

Good luck!

[Chemar]

Jack,

 

I am curious as to why you feel it is PANDAS....did your son have a sudden onset of symptoms with documented strep?

Do his symptoms increase dramatically with illness/vaccines/strep?

 

Kelly

 

I suggested to Jack that he may want to post here and look into PANDAS as nothing that usually at least silghtly reduces symptoms seems to help his son and many of the symptoms he shows are ones that I hear PANDAS parents report on

 

EAmom, from what I have understood the mouth sores are caused by his son continuously biting his cheeks

[chrisw]

Hi Jack,

Have you seen the website www.webpediatrics.com? This is Dr. K's website. He is an expert in PANDAS, and will consult with other Doctors. If you email him, he WILL email you back. It is important for you to tell him if your son has had a positive strep culture WITH an exacerbation of these symptoms that you speak of. Does your son show improvement when he is on antibiotics? I knew my son had PANDAS when he improved on antibiotics. He improved the most on Azithromycin. I am so sorry that you and your family are suffering with this. I hope you can find a Doctor who will be willing to talk to Dr. K or who can help you. Let us know what happens.

Blessings,

Christie

[michele]

Hi Jack. Welcome. My son has the symptoms you list and his is chronic PANDAS. Most significant is my son gets mouth sores that can get pretty big! Kim has posted on this before here. Try the search under mouth sores. Our dentist has been able to apply a paste on his sores that really helps the pain and heals them much faster.

 

We are currently on meds for the symptoms you described. The Abilify for the tics and moods and the Celexa for the anxiety and perceverence. My son did terrible on the ADHD meds and did not tolerate them and got worse. We never tried Ritalin though and Dr. Murphy Florida specialist in PANDAS suggests Ritalin for PANDAS, ADHD. We did try Celexa, Strattera and Adderall XR. Maybe the Ritalin could have worked and we should have done it before switching to Strattera. Currently my son is stable with a few obsessive things going on, minor tics and minor mood issues. We keep having to up meds every couple months though.

 

Mouth biting is a compulsion, ulcers come from a deficiency in the gut. Try the Kefir. Dr's say tics are not a side effect fom the meds but like you I have to wonder because some of ours got so much more defined on the meds. The vocal squeals especially and this horrible bottom grabbing (through his shorts) compulsions that is making his bottom really hurt! Makes me wonder if it is a side effect also because it started on the Strattera but stuck around now for many months after it! My son's emotional meltdowns were much worse before as you describe over homework or giving them directions. I don't know if they are lessened because of the upped Abilify or the episode has calmed down. Jut try to keep daily notes to look at as a timeline. Some episodes comefrom exposure to strep, or other virals or stress in my son's case.He doesn't test poritive that often but it is what started the whole process by getting srep and fevers and immunizations. Good luck getting the Azith. We use Omnicef and he has never gotten strep on it but does still have episodes. In our case getting treatment has been a challenge. Dr's want to go the meds route to treat the symptoms and psych Dr's. Keep us updated on your process. Antibiotics are not always easy to get either. You've come to the right place. We have tried the supplements and all I can say is go slowly so you can see what is working, add one at a time. They get confusing when you add a bunch on. Good luck!

 

Michele

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

[CZL]

Hi all,

 

Thank you all so much for all of your input! Maybe becasue of time difference, I did not find your replies this morning. Just found them!

I was little bit of busy today, I will read carefully for all of your reply and I will get you all back soon.

 

Appreciate all of your help,

Jack

[CZL]

Hi all,

 

I maybe was in tourette forum this morning, so did not find your replies -------- time difference --- no, there is no time lag in here ---- what a dizzy in my brain recently!

 

Chemar ---- always thanks for all of your help.

 

P.Mom ------ Thank you. We ourself often think of it as well why my sons' symptoms are some kind of different with other TS kids I met in hospital locally in Beijing. I've ever asked a doctor in internet who is in Taiwan and good at tourette's. He told me my son is not PANDAS, he said it must be a sudden worsening symptoms .... So we did not consider this any more. But, what he does is really some kind of different with other TS kids here I met. He does not have a sudden onset of symptoms, but biting his mouth for more than a year already, his mood is always bad like what I have mentioned in the post. I did remember when he started kindergarten, he cried every morning...

 

EAMom ----- Thank you so much for your help and your detailed email. That is really helpful for me. I just noticed right now there are new emails from you which I have not opened yet, I will read it after this post. Thank you so much.

 

Christie ----- Thank you so much for the information, will check the website. Yesterday I have my son tested in hospital for "throat culture" and a blood test which relates the strep. I will get the test result in couple of days. I will let you all know the result. I started my son ON Azith from yesterday, 375mg/day ( once a day ). today is day2, after he started Azith from yesterday, he told us ( yesterday and today ) he feels stomach upsetting and sometimes stomach ache --- I don't know if this is normal and caused by Azith? My son just told me a moment ago he is scratching his tongue a little bit --- this is scaring me, I did not ask him any more about this as if do so, maybe he will focus on this. If that happens. could be really bad. Five years ago, he bite his tongue badly and had to be in hospital. They used high dose meds to control it finally.

 

michele ----- Thank you so much for the detailed information. I need to read your reply carefully and do some search to get know more about this. This time doctor just gave us Azith for 7days ( 375mg/day dose). I think after the strep result comes out, if it 's positive, I need to find a proper doctor to talk more about this. I am worried if they can give longer term dose of Azith. Normally doctors here don't do it.

 

Thank you all for your help.

 

We live in Beijing, it is not easy for something, such as seeing a doctor ( relative good one ) is hard. We were never told to do strep test before. .....

 

oh, by the way, do you know if all supps which my son is currently ON conflicts with Azith? Any one has experience on this?

 

So if his strep test is positive, that means it is PANDAS then? that means it will be more complex than TS???

 

Thanks all for your help,

Jack

[faith]

CZL,

Could you explain more what you mean in saying that "your son seems different than the ts kids you have met", could you tell us in what way? do you mean he has more symptoms, is worse, or has more than just tics?

 

thanks

Faith

[EAMom]

Hi Jack,

 

could you describe your son's symptoms early on? in kindergarten? Also, do you have any family history of auto-immune diseases (lupus, MS, rheumatic fever, sydeham's chorea)?

 

It is my opinion that not all PANDAS kids demonstrate the "classic" explosive onset (with obvious strep infection) with clear cut waxing and waning (as the strep is treated) . Some kids get an undiagnosed (carriers? perhaps no sore throat, so you never get a throat culture) strep infection (or colonization) and may have minimal or low grade behavioral symptoms (perhaps sl. increased anxiety or moodiness) until something happens to disrupt the blood brain barrier (stress, nitrous oxide, increase in blood pressure) and then that causes another increase in symptoms...and so on. It is also possible that early on episodes may be more mild (eg. just urinary frequency). My dd had likely PANDAS episodes that went undiagnosed for years. Urinary issues at age 4.5. Some handwashing and anxiety in Kindergarten (understandable b/c a neighborhood child was dying of cancer, and then the grandma next door also had cancer). Unfortunately, nobody ever did a throat culture on either of my children when they had fevers or fevers/vomiting b/c their throats never got sore/red. Now I find out that when my kids get strep they don't get a sore throat (sometimes no symptoms).

 

My dd's bad PANDAS episode spring 08 didn't start with a sudden explosion. She had a FEVER jan 08 and after than point she had a lot more tantrums/difficult behavior. Things ramped over the following 2 months (getting worse with tooth extractions for orthodontic reasons). After the 2nd extraction she was a totally changed child from the one we knew 2 mo. previously. She had severe OCD, depression, full-blown anorexia nervosa (age 7.5 years), and mild tics. At that point we finally learned about PANDAS and cultured both children who were both positive for strep.

 

Diana Pohlman's son also had a summer of "low grade" symptoms (strange fear of crossing bridges, etc) but his PANDAS didn't explode until the 1st day of 2nd grade with a very stressful event. Her son never did culture positive for strep. It's likely his strep was "hiding out" in the sinuses since he improved on Azith. and an MRI did show a sinus infection. (His strep titers were up a bit as well.)

 

Also, some kids, continue to have issues even once the strep is presumably cleared (like my dd, worried dad's son, diana's son, others, on this forum). Things may be better on anitibiotics but the child is not 100%. I suspect that these kids have chronically elevated anti-neural anti-bodies/CaM kinase II levels (see Worried Dad's post on Dr. Cunningham blood tests http://www.latitudes.org/forums/index.php?showtopic=4834 ) which result in continued symptoms even in the absence of strep infection. My dd also worsens with the mere exposure to strep (colonization) or when she gets another illness (breakdown of blood brain barrier?) I think that is why the Azith. is helping my dd....anti-inflammatory/immune modulating, not just preventing strep infection. She has symptoms but is quite functional (symptoms 10-20% of what they were a year ago b-4 azith.)

 

Jack...this would also be a good post for you to read. http://www.latitudes.org/forums/index.php?showtopic=4785 Unfortunately, PANDAS can be a bit complicated, both in diagnosis and treatment (antibioitics and even IVIG are not "easy" or "100%" cures for everyone).

 

Technically, IMO if you really want to know if you son has PANDAS, getting blood tests run by (Worried Dad's post again) Dr. Cunningham would be the way to go. Unfortunately, this likely would be technically difficult (getting blood from China...not sure of the logistics involved?). The other issue, is since these tests are still being researched, Dr. Cunningham seems to want to run them in confirmed cases of PANDAS...not to use them yet (maybe too early on?) to tell the difference between PANDAS and tourettes/regular OCD (which they would seem to be useful for eventually).

 

Sorry this is so long....one more thought. My impression of most kids with tourettes is that they don't have such a huge OCD/behavioral component (moods, tantrums, bizarre behavior, anxiety, adhd) as PANDAS kids. Also, (perhaps Chemar can correct me on this one) that tourettes kids are less likely to have a urinary (frequency etc.) component. I do remember reading a study (from China I believe) that compared 2 groups of kids...PANDAS with tics and non-pandas tourettes. The PANDAS kids were very likely to have urinary issues and the tourettes kids were not. I wish I would find the article (I posted it a while back to myrose...have to search). If nothing else, maybe you could get some names off the paper (doctors) although I know China is a huge country.

[EAMom]

Hi Jack and all,

 

I found the Chinese (actually from Taiwan) article! http://www.cgmh.org.tw/cgmj/2811/281105.pdf Basically they looked at kids with tics (who did not have PANDAS) and found that only 1.9 % of these kids had daytime urinary frequency. In another study (US) they found that 58% of kids with PANDAS have daytime urinary frequency as a symptom (sometimes the only symptom).

 

In other words...it appears daytime urinary frequency is a typical PANDAS symptom, but an unusual symptom for a child with non-pandas tics.

 

Any comments or insights on this are welcome!

[CZL]

Hi EAMom, all

 

My son was not doing good today, mood even worse, tongue scratching ( by teeth ) worse ( he started this yesterday ). the existing ulcers did not get worse further which is lucky.

I don't know if this is caused by Azith, but we did not change anything else. So I stoped the Azith, I will wait for the throat test result to see what to do next. I can only say my son is so oddness from all others. I don't know why.

I will find time to talk about him. we have a note which we made for almost past several years.

We are in holiday right now ( "dragon boat festival" ), but holiday is not for our family, we only have "battle and struggle" during holiday even for each weekend. he cries a lot, groans a lot all day. We all exhausted.

I will be back to tell details about my son soon later.

 

Thank you all for the help and information.

 

Jack

[Chemar]

so sorry to hear things were not improved yet Jack

 

I pray you will find answers to what is causing these intense symptoms for your child.

 

You did say he was diagnosed with Tourette? yes? Is there a family history of tics/OCD ?

 

also, when you had him on the Haldol and Luvox...was there an improvement at all in the severity of his tics/OCD?

 

my prayers remain lifted for your son and you and wife Jack

[Chemar]

Jack

it just occurred to me that often with antibiotic, one can get that "furry tongue" feeling as the antibiotic kills off "good bacteria" in the mouth too.....now maybe your son feels that and so it triggered the teeth on tongue tic for him? Are you giving him a probiotic as well? that is essential when taking antibiotic to help restore healthy microbes. Some people use the supplement kind....we have always used plain kefir and yoghurt. I am not sure if anyone who may have PANDAS can use those...other parents here would know I think.....but all will agree a probiotic is important. It is recommended to always give it at least 3 hours before or after the antibiotic