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Loren

Please help me

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Hi Loren,

My daughter has PANDAS which started as tics and OCD behaviors one day "out of the blue" . This was when she was 5 years old and she is now 10 1/2 and doing well (she still deals with tics whenever she gets strep or has a bad viral illness). I just had one piece of information to add to all of the great info everyone is giving you and it is in regards to the strep culture (Throat swab). When my daughter was first diagnosed we took her to the NIMH (National Institute of Mental Health) where we met with Dr. Susan Swedo who is considered one of the top experts on PANDAS. She instructed us to insist whenever they do a throat culture for strep on my daughter that it be grown out for a full 72 hrs. Normally they grow the cultures out anywhere from 24-48 hrs. She said that for some reason in children with PANDAS it can take a full 72 hrs. for the culture to show up positive. It has been a battle and struggle at times to have this done b/c most doctors feel 36-48 hrs. is long enough, but we have seen my daughter's cultures become positive at 72 hrs. when they were still negative at 48 hrs. I wish you all the best luck!

Colleen

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Faith, just had to share our school experience. Last fall when he was screeming, I got the phone call the second day of school. They knew about it from the year before, but it was real bad in Sept. They were calling me twice a week. When we sat down for a meeting, his math teacher said, " I can hear him in my class when he is in his science class." (down the hall) Like I don't know how loud my son is, Duh. Well we knew we would have to give up the fight the natural way after a 11 months, and put him on something. So Oct. we did... I have not had a call from anyone at that school since.

 

I made sure I told them the Dr. said it would only take away about 50% of the vocal. He said not much medication works on vocal tics. Well they got their 50% or better and I guess don't have much else to say to me. I think thats all they wanted was to know he was on something. I guess it is harder for your son's teacher he has her/him all day? Mine has 7 teachers for all the subjects, and then it is only every other day they have him.

 

What really got me was the blank looks we got, My husband and I were like... WHAT YOU ALL TOOK CHILD PSYC. YOU TELL US HOW YOUR GOING TO HANDLE THIS!!!

 

We have a meeting April 11th, wondering how that will go?

 

Good luck. I'll let you know how are meeting goes.

C.P.

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Thanks for that, C.P.,

sorry you had to go through that--it is the hard part, not knowing what exactly is happening when they are at school, wondering how our "babies" are doing. Did you feel the school encouraged medication? Like, did you feel they exagerated his noises to make you think it was worse than it really was? I hope the teacher doesn't do that just so we could get on with this and go by the book on it. You know? I think that's what I'm fretting over, although the school psychologist sounded very respectful and did say that it was not up to them on how to treat (meaning medical treatment) a child, but are concerned about how to make it better for him in terms of education, and that's cool with me. I just hope its all confidential, I don't have any problem with the faculty knowing what is going on, but I don't want to put it out there for the students unless it became necessary for his good. Our meeting will probably be that week too. By the way, did you feel he had any adverse side effects from the resp? If not, and it seems to help him, you could try to wean later when school is out........ Off to my prayer group, and will be thinking of all of us here.

 

Loren, how is it going? Please keep us posted.

 

Faith

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Faith,

 

I would say the school was walking on egg shells. The county I live in seems to have a millonaire around every corner. (I had to laugh, once a study came out on incomes in this county my husband was in the poverty range. And hear I always thought he made good money?!?) I think they are afraid to say anything, just asked probing questions, so you knew what they are getting at. I think a lawsuit is what scares them.

 

I don't think they exagerated, he was pretty bad.

 

My son does very well on the meds no side effects, he used to get sleepy, but not anymore.

 

C.P.

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Had to let you guys know, I just got a call from 10 yr old (the one with strep on zpak) teacher.

 

He asked if something traumatic had happend to my son, since he was out of school, and acting "so not himself."

 

He said he is all over the room, and even talking back, when told to sit down. He said this is very unusual for him (which I know, he does not like to be in any trouble with an "authority" figure).

 

I have noticed some facial tics, and even a couple of shoulder shrugs, but he has not been eating enough to get in his usual amt. of supplements. Also, I can't give him his digestive enzymes near the zithromax, I can't give him magnesium near zithromax, and I can't give a probiotic near enzymes or zithromax.

 

So is this stress from being sick, the antibiotic itself (dyes..whatever?) or are strep antibodies having some effect on his brain? Lack of supplements??????

 

Just another day hau?

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Kim,

Okay, that's interesting. This is just the kind of thing I am very interested in. You say you havn't been giving him his usual supps for--how many days now? And is this unusual for you to see this type of tics? I mean, if you definitely see some differences related to him getting his usual stuff, and now things a little awry since having to cut some due to the azith, then that tells something. My feeling is the antibiotic itself is not responsible for that behavior--I tend to lean more to not getting his usual supps that seem to keep him in check. That gives me more hope and confidence that nutritional balance is essential.

 

Try to get back on track and see. Maybe give all the supps as soon as he gets home from school and the azith am and pm (whatever the time schedule is). Or if you have to, as soon as you wake him up, maybe even an hour earlier, just to give one or the other, so enough time will pass before he walks out the door for school and you could give a supplement or two. How many days on azith? I guess you don't feel that has any beneficial effect on at least the tic department?

 

Faith

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I have noticed when I have changed our sons supps the tics start again. Although I am tempted to experiment with taking him off, I probably am too scared to try. He is doing so good right now with the combination we are giving him

Lenny

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I have noticed when I have changed our sons supps the tics start again. Although I am tempted to experiment with taking him off, I probably am too scared to try. He is doing so good right now with the combination we are giving him

Lenny

 

Lenny,

 

What type of supp's are you giving your child? And how long has he been on them, if you don't mind me asking.

 

Loren

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Loren,

I am just a regular Nancy Drew, eh? Thanks for that background.

 

yes, the strep test is called ANTI DNASE B TITER and ANTI-STREPTOLYSIN O (Dnase and ASO titers).

They are done with a blood draw. The other will be a throat culture that is not a quick test, but must be cultured for 24 hrs. However, I'm not sure any regular pediatrition will just know what that is or if they even will do it. My doctor referred us to an Infectious Disease doctor, where they are more familiar with the term PANDAS. (I'm assuming you have done some reading on this, and maybe you could copy some pages for him/her to look at so he knows there is a such thing). Now, we had this done, but it did not seem to be the case for my child, so I can't give you any recs on how to treat--the others will help you if that is the case.

 

For now, I would definitely start him on some magnesium and many here are using the Kids or Natural Calm. I do sometimes, and something similar called Super Mag. It's a powder disolved in small amount of hot water. Anything else, I think you should start slow on that, do the research like your friend, she probably knows alot of what type things are good. The others have given good advice so far.

 

I totally relate to the way you describe your son's tics. It is only now that he has this vocal squeak that it has come to the attention of the teacher. Before this, no one (except grandma) would notice them to be a repetitive behavior. The first time I informed the teacher about his eye blinking in November, she called me back and told me she hadn't noticed anything. Now she's all over me. And that is why I'm not keen on giving him this formal label in his file in order to get special services. If it weren't for this vocal, I'm sure it wouldn't be an issue.

 

You mention you're father-in law--was he involved in that because there is TS in the family? Also, (I'm a nosey one) does your friend's daughter have noticeable tics and is it an issue in school--I ask since that is my problem to deal with right now.

 

Thanks and good luck

Faith

 

 

Faith,

 

It is actually my step father who was involved in his local chapter of TS. His daughter has TS. I've been asking around in my family, and no one know of ANY relative who has had TS. This is all so confusing. TS would be the last thing I would think would happen to my kids.

 

Anyway, my girlfriend also doesn't want a label put on her daughter. The teacher knows, of course. But poor Katie has been bullied a lot in school. Not so much this year, but definitely last year. My girlfriend was getting very upset.

Katie is 11 now, ( I think) and has been battling this for about 3 years. My gf has her on different supps and they seem to be doing the trick. They tried medication, but the side effects were too severe.

I don't think Katie's tics disturb the class. She does have vocal ones occassionally, but they may be of the mild sort (no yelling).

I don't know if any of the info helped you, probably not. I'm sorry. Everyone has given me such wonderful advice, I wish I could help back.

Maybe one day months or years from now when someone new has a problem and I can give them my months and years of research?

Loren

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I have noticed when I have changed our sons supps the tics start again. Although I am tempted to experiment with taking him off, I probably am too scared to try. He is doing so good right now with the combination we are giving him

Lenny

 

Lenny,

 

What type of supp's are you giving your child? And how long has he been on them, if you don't mind me asking.

 

Loren

Sure, I had (and have) him on Natural Factors Hi Potency B 50mg dose. When we switched to Kirkland (Costco) B Complex he seemed to increas tics mildly. The main difference is dosage I.E B1 in Costco was 15mg and NF was 50mg. The Costco B1 used was from Mononitrate and the NF was Hydrochloride. Otherwise, thinking about it now, I should have increased the amount of the Costco, but they are quite large and the NF is the same size. We also give him chidrens Natural Calm in the evening, and along with his B-complex in the morning I give him 1 Attentive child by Source Naturals and 1 Learning Factors by Natural Factors. Maybe it is the right combination for now, but like I mentioned in a previous response, was it the Almonds or Cheezies he was on??

He seems to be tic free this weekend, and sleeping much better.

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