Need your help!

[EAMom]

Hi Jack,

Is the Azithromycin white or reddish (or another color?) I ask because some kids are sensitive to the dyes in medications.

 

Yes, and, lots of PANDAS parents do give probiotics (or Kefir).

 

If you think dyes might be the problem, you can also get dye free Ibuprofen...they are white pills. They have them at Walgreens (all over San Jose) so your relative should be able to get them.

[CZL]

Hi EAMom,

 

Sorry for late reply. my son doing bad these days..............

 

The Azith I used it is made by PLIVA, trade name: SUMAMED, Azithromycin. It is light blue color.

 

Jack

[CZL]

Hi EAMom, all

 

Very sorry for not reply in time, I have bad time these days…………

 

This is about my son’s history ( not finished yet ): ( excuse me if some of the words are not correct )

 

My wife water broken 1 week early than schedule, after 24 hours in the hospital, had Caesarean birth.

 

Infant period ( this is what we recalled after doctor diagnosed him ):

Cried often --- maybe this meant nothing for a baby. But we did had hard time for this at that time.

Less crept --- normal baby often did that, that is caused by something in the brain, right?

Sleeping at night was not good always, and it was very hard for him to fall into sleep by himself at noon also ----- sometime during weekend we had to put him in the car and drive around to help his noon sleep.

 

After he was able to walk, we remembered once we went out or went downstairs, he was upsetting when we put him on clothes and shoes.

 

Started Kindergarden @ 4+ years old: first day whole day, was crying a lot, he had his towel ( brought with him from home ) in hand all the time in the first day. Did not play with any other kids for anything. We had to let him to stay at home for couple of days, then sent him again, a little bit better gradually, but every morning, he would cry, he was anxious for this “separation”. He cries almost every morning and always before got into the kindergarden, he would say to us “ be the first one to pick me up in the afternoon”. (I don’t know how to say this.)

 

@ 5 years old, we found he had daytime urinary frequency showed up sometime, he felt he had urine, but most time just a little bit. He said/ask himself why I always went to toilet. This did not last very long time, maybe only a week. He also started have stomach (abdomen) ache often, we went to see the doctor, but nothing was found. ( actually maybe this was the abdomen tics ??? --- maybe started Tics already, but we did not see it. )

When he was writing, his neck/head was often backwards. And his neck often had something ( not so comfortable ).

 

When he wrote, for example to write English letter, he often confused “b” and “d”, and “B”, he often wrote it as “ ”. For Chinese character, we use several pieces to consist of one character, he usually misplaced the piece left and right. He does not do these right now ( now he is 11 yo), but another strange thing is right now when he writes on the paper, he starts from the middle in the paper, then on the right side usually does not have enough space, for the next line he also starts from the middle, does same thing. The right side paper is just so “crowded”, the left side is almost empty!

 

Same year @ 5 yo, one day we found his shoulder was jerking real quick which he did not even noticed himself. We asked him he said he did not know and then he said he did not know why he was doing that. We did not know either why he did that, we thought maybe it was not big deal, would go away. But we were totally wrong, it was not gone,

 

---------- To Be Continued once I have time --------------------

 

 

 

 

Hi EAMom, All,

 

We had very bad days during our 3 days holiday. My son is doing tongue biting very badly, and tongue scratching with teeth.

We had to put him back ON relative low dose SSRIs med for this urgency today. I feel very very bad. Last night he did not sleep almost because of tongue biting and very big mouth opening. He was so upsetting and sore. And also last night he said he had sore throat a little.

And in the morning, I went to the hospital to get the throat test result ( we shifted today due to our dragon boat festival ) .

The test result:

1. Throat culture test : Normal. ( it shows “normal bacterium grows ----- sorry I don’t have correct word in my dictionary for this )

2. Blood test for ASO: anti-strep “O” test, 298, normal range: 0.0-200.0 IU/ML.

I saw a doctor also to ask the test result and mentioned her PANDAS, she said she knows PANDAS, but in China, Research for PANDAS is not common, so ….

She said due to ASO 298 is high then normal, that means my son had strep infection at least in past 6 months. She prescribed Penicillin for injection which is for long term effection ( 1 month ). She is surprised why the doctor I saw before did not ask us to do this check, this is the common check. I don’t know either, maybe my son’s symptoms is more no doubt to be TS and OCD+depression. This doctor today does not know why my son had this happened after he had Azith. She said first choice for strep is Penicillin, if one can not have that, Azith is the next choice.

Right now my son is still doing tongue biting, after penicillin and SSRIS med back on, no improvement yet. ( maybe a little but hard to tell ).

Now, I have following questions: ( I am new for PANDAS, I still need time to get to know some of more information about this, I will do that )

1. PANDAS diagnosis: depending on this strep test result and ones symptoms? Then according to these make conclusion by experience doctor? What about chronic PANDAS dx.

2. So PANDAS is: brain is infected by step and triggered out the potential Neuropsychiatric Disorders, including TS?

3. If symptoms like my son has does not responsible well for meds or all supplement ( which I have already tried ), that is because of STREP? And Autoimmune system has the problem already?

4. No.1 thing to do is kill strep with antibiotic? And meanwhile using either drugs or Supplements for existing OCD/mood/TS….？

5. Strep has genesis from tonsil??? Can I just simply cut it off to avoid next infection?

6. My son just had Penicillin injection which is for long term effection ( 1 month ) today, is it GOOD? BAD? I mean its persistent period is 1 month, if I don’t see any improvement, should I ask doctor give him another kind of Antibiotic?

7. For PANDAS, it is more complicated for treatment than TS, is this correct?

 

Just that’s all for now, I am totally stunned already. I do need time to read all post in here and get to know more information.

Sorry this is so long....

Thank you all for your help,

 

Jack

[EAMom]

Started Kindergarden @ 4+ years old: first day whole day, was crying a lot, he had his towel ( brought with him from home ) in hand all the time in the first day. Did not play with any other kids for anything. We had to let him to stay at home for couple of days, then sent him again, a little bit better gradually, but every morning, he would cry, he was anxious for this “separation”. He cries almost every morning and always before got into the kindergarden, he would say to us “ be the first one to pick me up in the afternoon”. (I don’t know how to say this.)

separation anxiety...hard to tell if this is PANDAS (eg if he had it from this early age) or if it's his personality. Had he been left at daycare or preschool before?

 

@ 5 years old, we found he had daytime urinary frequency showed up sometime, he felt he had urine, but most time just a little bit. He said/ask himself why I always went to toilet. This did not last very long time, maybe only a week.

 

my dd had this at age 4.5, clasic pandas symptom

 

He also started have stomach (abdomen) ache often, we went to see the doctor, but nothing was found. ( actually maybe this was the abdomen tics ??? --- maybe started Tics already, but we did not see it. )

sigh...it would have been great to get a throat culture at this point

 

When he wrote, for example to write English letter, he often confused “b” and “d”, and “B”, he often wrote it as “ ”. For Chinese character, we use several pieces to consist of one character, he usually misplaced the piece left and right. He does not do these right now ( now he is 11 yo), but another strange thing is right now when he writes on the paper, he starts from the middle in the paper, then on the right side usually does not have enough space, for the next line he also starts from the middle, does same thing. The right side paper is just so “crowded”, the left side is almost empty!

 

my (almost 9 year old) pandas dd still sometimes confuses "b" and "d", and will write (for example) a capital "D" so she doesn't have to figure out which way the lower case "d" goes. I got chills when you mentioned your son's starting in the middle of the page. My dd also has "margin" issues. Sometimes she starts in the middle of the page. Other times she starts towards the left but then with each subsequent line she moves her margin to the right. Everything gets squished on the right side of the page. The funny thing is she didn't do this margin thing before 2nd grade (when she had her big PANDAS episode).

 

 

 

 

 

We had to put him back ON relative low dose SSRIs med for this urgency today. I feel very very bad. Last night he did not sleep almost because of tongue biting and very big mouth opening. He was so upsetting and sore. And also last night he said he had sore throat a little.

what ssri is your son on?

 

She said first choice for strep is Penicillin, if one can not have that, Azith is the next choice.

(at least in the US) we have a lot of treatment failure with penincillin (or amoxicillin), esp. with PANDAS. Some find cephalosporins to be effective (eg keflex) but azith. seems to be the most popular/effective with the PANDAS kids. If you try it again see if you can get a white pill (dye free).

 

Right now my son is still doing tongue biting, after penicillin and SSRIS med back on, no improvement yet. ( maybe a little but hard to tell ).

Now, I have following questions: ( I am new for PANDAS, I still need time to get to know some of more information about this, I will do that )

1. PANDAS diagnosis: depending on this strep test result and ones symptoms? Then according to these make conclusion by experience doctor? What about chronic PANDAS dx.

PANDAS can be tricky to diagnose, you really have to go by the symptoms/ history/response to meds/antibiotics. You could try a steroid burst (but if not PANDAS, could make tics worse per Chemar). Getting bloodwork done by Dr. Cunningham would be really helpful in getting a diagnosis. I don't know if this is possible though.

 

2. So PANDAS is: brain is infected by step and triggered out the potential Neuropsychiatric Disorders, including TS?

3. If symptoms like my son has does not responsible well for meds or all supplement ( which I have already tried ), that is because of STREP? And Autoimmune system has the problem already?

4. No.1 thing to do is kill strep with antibiotic? And meanwhile using either drugs or Supplements for existing OCD/mood/TS….？

5. Strep has genesis from tonsil??? Can I just simply cut it off to avoid next infection?

6. My son just had Penicillin injection which is for long term effection ( 1 month ) today, is it GOOD? BAD? I mean its persistent period is 1 month, if I don’t see any improvement, should I ask doctor give him another kind of Antibiotic?

7. For PANDAS, it is more complicated for treatment than TS, is this correct?

 

In PANDAS strep triggers an auto-immune disease (antibodies mistakenly attack the brain instead of the strep). Sometimes these confused anti-bodies persist, even once the strep is gone. Anti-biotics are important to get rid of any strep and help prevent future infections. Anti-inflammatory drugs can help as well (advil). Prednisone (steroids) can help short term as well but more risks are associated with this drug. IVIG/PEX can help the immune system as well...potentially a cure. Some PANDAS kids do find supplements to help a bit (I think). Removing tonsils also helps some (at least short term) but is not a cure. I think PANDAS, if treated aggressively (antibiotics, IVIG, etc) has the potential to be cured. ...whereas tourettes doesn't (but can be controlled well for many).

[EAMom]

Hi Jack (Chemar),

one thing I noticed is that your son is on inositol and 5 htp. Although he's on a pretty low dose (IMO) of 5 Htp, I'm quite sure you aren't supposed to give 5 htp with a SSRI (too much potential for serotonin syndrome). I'm not sure if Inositol is okay to give with an SSRI. Perhaps Chemar or others could comment? Could you also post the type/dose of ssri you are on (since I'm not familar with the one your son is on but others may be.).

 

Here is a recent thread on tonsilectomy, it does seem to help some kids (but is not a cure), may be worth considering:

http://www.latitudes.org/forums/index.php?...hl=tonsilectomy

 

does your son snore?

 

Oh...and here is a little blurb on Chronic PANDAS (from http://jcn.sagepub.com/cgi/content/abstract/21/9/727 )

 

Chronic PANDAS

Rather than the characteristic explosive onset typical of

PANDAS, in which parents can often point to the day and even

hour when symptoms began, many patients with tics and/or

obsessive-compulsive disorder have a much more gradual onset

and chronic course, with waxing and waning of symptoms over

the course of days to weeks. D8/17 antibodies have been

demonstrated in patients with PANDAS16,17 and patients with

chronic tic disorders.5,6,125–129 Anti–basal ganglia antibodies had

also been demonstrated in patients with tic disorders and/or

obsessive-compulsive disorder, well before the PANDAS concept

was proposed, and strongly confirmed in a recent large study.130

Could some patients with less explosive onset of Tourette

syndrome/obsessive-compulsive disorder have a more persistent

streptococcal infection? We recently found evidence of a

streptococcal carrier state in 72% of patients with Tourette

syndrome–obsessive-compulsive disorder surveyed over a 3-year

period (Trifiletti, manuscript in preparation), some 3- to 10-fold

higher than the general population. We propose that this group

be called ‘‘chronic PANDAS.’’ Chronic PANDAS might prove to

be much more common than classic PANDAS.