[Spoke to soon! Sliding back 5 days post steroids :(]

Faith,

It was gradual but definite improvement. By the last week he was I would say 95% better! He finished on Monday of last week, and I started noticing things creeping back up again on Sunday. He is on Augmentin 875 2xday, plus Vancomycin. We are definitely keeping up the antibiotics. We'll see Dr. Latimer in about 10 days, and I hope to get everyone checked out to see if we have strep going around (again!), since this flare up reminds me very much of what he was like in early Nov. when his sister had strep. Tonight he kept coming out of his bedroom to ask if this or that was OK (mostly germ-related, but also asking me to make sure all the lights were turned off, etc.) and he was very anxious, almost crying, over these things. I had to stay tough and not answer (well, for the most part) and just kept sending him back to bed. It breaks my heart, to think a few days ago he was so happy and easy going, and now the weight of the world is back on his shoulders! I guess only other PANDAS parents can understand this sudden changes, you got to see it to believe it. But is it, as usual, at lot worse at bedtime, I wonder if other people have had the same experience. I did give him 1 ibuprofen in the am and he did OK during the day, and then a couple more after dinner, because I could see it coming, but it did not seem to help at all (or maybe it would have been a lot worse without it?)

 

 

I understand. but this was just to be a temporary thing anyway right? I mean, did Dr. L. say it would help in the longterm? I don't know. we were given the script to do a month pred last month, but I have not done it as I am scared, and I havn't been able to get contact with her to discuss this, so this is where I stand. Did Dr. L. say what would be after the steroid? good that you will see her next week, make sure you put all those questions to her about the future so you don't come home and wonder, especially if it takes a bit to get in contact.

 

Also, I'm guessing you did the steroid pretty much at the same time of the abx, so you don't really know if the abx alone was a help? was it? I really wish I could understand all of this for all of us. I don't like hearing the not so good news.

 

blessings

faith

[Augmentin & Augmentin XR]

CZL,

were you giving the 2000 mgs. of augmentin on your own or is this the doctor's script? I mean, you have the augmentin, but are you upping the dose yourself? if the doctor says its okay, I would just ask him to give the next script refill as Augmentin XR, just to be safe, there must be a reason for the XR to have a lower dose of clav, probably because the XR is going to be given at a higher mg. dose and is supposed to last all day?

 

Also, when you say you had some good improvement in the beginning, was this unusual? I mean, are there times when he wasn't on the augmentin or other abx, that you would have a couple days of no head hitting or other behaviors? just wondering. because sometimes I have a good day with my son and right now he is NOT on abx, but if I had given it that morning or the night before, I might have thought it was because of the abx or whatever thing I gave that day. just wondering what others experiences are.

 

Faith

[Movement and handwriting]

mrigsby,

yes, it is really odd that no doctor could suggest ruling this out or testing even when he was hospitalized for such? I agree, at least get on a longer does of antibiotics to at least see what happens. maybe you could tell a small fib to the doctor and say that the last two days on the abx, he was pretty stable and could he please just give you a months worth just to see how it goes.

 

also, since you mention the constant laughing, I'm wondering if that is not actually a vocal tic or his 'masking' a vocal sound? my son has had vocals for years, and I notice he does this alot, like sort of act like he's laughing at something to get the sound out, he's 'masking' it. drives me nuts too, cause if he's next to me, I have to ask him to stop yelling in my ear. I would also check in to yeast/candida as I've seen some say inappropriate laughter can be a sign of that as well.

 

good luck to you.

 

Faith

[tics worse even after IVIG]

So the steroid helped the bumpy time after the first IVIG? why did you go with another IVIG? was it planned that way or the doctor felt another would be beneficial?

 

I don't know anything really about steroids, but is it okay to do 4 in one year? are these 5 day bursts?

[Spoke to soon! Sliding back 5 days post steroids :(]

mati's mom

could I ask how long for you to see the improvement that you described in your earlier post? was it definite improvement or just getting a little better? how long did it last before going backwards again? Also, could you remind me what antibiotic and dose he is on? you are continuing that, right?

 

thanks

Faith

[tics worse even after IVIG]

momofgirls,

did you say dr. b. gave you a steroid 4 days ago? was that because the tics were increased and it was to try and get them down? Also, the steroid that you had previous to this, was it before or after the IVIG?

 

What did the doctor say about this? (the increase in tics)

 

I don't really understand the purpose of the steroid thing if it is just temporary. but you are definitely seeing the ocd gone? is that usual for you to see many days with no ocd, or have you had good days before IVIG?

 

hoping things improve in time.

 

Faith

[Very Anxious]

melanie,

just curious, (you may have said, but I forgot), why didn't the first doc that did your first IVIG do it for you again? was it Sultan?, you did say the insurance covered it that time, right?

 

 

 

Faith

[Knock Knock?]

Hi all,

just wondering how everyone is doing these days. this board is kind of lagging. wondering if everyone is just well enough, or that we've talked about topics til blue in the face and are all petered out?

 

or maybe most of us have enough knowledge to get us by?

 

or new posters don't post much because it looks like there isn't enough company?

 

just curious. miss all you guys. I'm confused as the rest, and looking into other things as well, but I'm glad to help if anyone needs it.

 

Blessings,

Faith

[Inositol]

I might be able to add that I have a nice jar of it in my cubboard. we tried it about 2 years ago, and I felt my sons tics increased. perhaps the reasons stated above are why? it seems there have been a few things I;ve tried in the past in the way of supplements have seemed to have an adverse effect (tic increase) so wondering if those things would be in the immune boosting category?..........(and deez are der names).......fish oil, NAC, tryptophan, taurine, flax oil, high b vits, ......... could be wierd coincidence that they didn't seem to help, but I've been on the natural route for years before this and so have looked at alot of things. now I'm wondering if this is the reason why they weren't helping much, maybe boosting immune system for my guy really 'isn't' a good thing? (and when you deal with tics and you note increase, you abandon ship quickly!)

 

altho, I'd also like to put out there that possibly, things that are good for one issue, such as ocd and adhd, may just have an adverse on the tics (before this, I was more concerned with the tics and always looked at that aspect as the gauger). maybe something there with increasing dopamine, which isn't good for tics. don't really know.

 

Faith

[Where did you first hear about PANDAS?]

Right here on the tics/tourettes forum. I joined in January of '07, but started reading a couple months before that. at the time, it was the tics/tourettes board and there were a couple of posters who were already on that road, so I read alot of their backposts from around 2004, and went from there. Actually it was the poster 'ad ccl' who posted here recently about how well her son was doing presently, her and another gal 'Ronna' were the pioneers of PANDAS and the source of anecdotal info on the board at that time.

[Tried ABX, cleared up, regression while still taking them]

faith - i do apologize b/c i can't remember your son's recent history with abx and other meds - just wanted to quickly chime in if you haven't seen me write it before - the first abx my son was on was azith and it was terrible. i know many others have great results. for us, even some pandas behaviors that had left returned with a vengenance and i don't believe it to be a turning back the pages situation, i think it was exacerbation. we then switched drs and the new one put him on 30 days of keflex. in about 3 days, all symptoms left.

 

could it be not that abx isn't helpful but you need the right one?

 

 

I think I did read about your experience with azith, thank you. We tried a month of augmentin with nothing remarkable happening, so we switched to the azith. my son is 10 and has tics/ocd and other issues for about 7 years, altho just beginning treatment recently.

 

could I ask how long your child had symptoms before you first used the azith and then the keflex?

 

thanks

Faith

[Tried ABX, cleared up, regression while still taking them]

When she was on Zith, was it only a 5 day dose of Zith or was she still taking it when she regressed?

 

When you say she completely regressed, with the exception of tics, was it the same OCD tendencies that were present whne she started the abx, was it older ones resurfacing? Was the same severity?

 

She is currently on a 30 day course of Zith. She regressed with the same OCD tendencies that she had before. When she peaked on the current course she had stopped some of the OCD tendencies and felt empowered to conquer more. Now that she is regressing she has returned to touching everything in sight, skipping steps, etc. I would not say it is more severe, just basically the same as it was before. She is continuing to take the Zith, we are on Day 17.

 

 

What is her weight and what dose is she on of Zith?

 

That seems like a low dose compared to what many doctors prescribe for PANDAS. My dd is on both 2000mg of Augmentin XR AND 500mg of Zithromax. She weighs about 92 lbs. The idea, I believe is, if it has gone intracellular, you need to really have some strong antibiotics to wipe it out. So far, she has improved again since adding the Zith. She is hardly ticing at all these last few days and her reassurance questions have gone from every few seconds to about 30 minutes apart.

 

What I am wondering is, are these cases where people are giving up on a particular antibiotic done before a high enough dose is maintained for some time, (including waiting out the saw tooth recovery pattern) or are they seeing a back slide (which could be due to anything that stresses the immune system) and giving up too quickly.

 

Angela

 

Angela,

just to reiterate, you say since you put the zith on top of the augmentin, she improved again? how many days on tis? she had tics before on just the augmentin? now, they seem to be none? that's kind of a whopping dose.

 

I understand what you say about the abx trials, but right now I took my son off the zith, because it looked to me like he had a big increase in vocals. I had given about 10 days worth and didn't really see much improvement in anything, then missed two days due to not having the script refilled, and I actually thought he did better while NOT getting the pill, and then the third day I gave it to him and wow, his vocal went off pretty bad. I stopped it and he calmed down the next day and after that. It was pretty clear that the increase was the azith, or rather the wane was from coming off, because it was twice of going off and seeing better symptoms. (I don't like to report something just for a one time or one day upswing) he's been off the zith for about a week now, and yes, he still has vocal, but not the big increase every second that was going on, it was pretty unbelievable, he wouldn't stop and it was loud. I don't want to continue with the zith, but I still have a script for augmentin, and just wondering if I should give it another shot.

 

Faith

[Immune workups and antibiotics]

So is suppression of the immune system what we actually want? is that a good thing? with PANDAS, we don't want to 'boost" the immune system, we want to supress it? am I getting that right?

[Teenagers?]

hello Bio,

Could I ask you about the Strattera? you say your kids have been on this for some years? could you tell me how they fared? what did it help with? ocd, attention? did it have any effect of increasing their tics? are their symptoms mostly controlled with these meds?

 

thanks

Faith

[Article]

I'd be interested to know if anyone has had good experience with NAC (N-acetyl-cystein)?. I'd give it a whirl for the ocd stuff, but the last time I gave my son NAC, he had a big increase in vocals and I've swore off it ever since, so really scared to try again. I might add tho, that I had given him NAC the previous summer for a couple months and did not note any increase of tics, so I didn't understand what happened this time. I could speculate it was a big old coincidence, but wierd that it was within a day of giving the capsule, and the increase was big. I wrote about it on the other board at the time. If I find the thread, I'll post it here. It may have been an initial reaction, but those of us who deal with tics don't usually like to take chances with something that causes increase.

 

Faith

[Anyone tried NAET for PANDAS?]

michael,

what were the symptoms your son had re the allergies to some foods? were they neuro symptoms or the typical food allergies? did you feel any of the treatments had any effect at all on any of his behaviors? we went thru the whole panel, dairy gluten, sugars, preservatives, etc. we don't have typical allergic reactions here, I was just doing it in hopes of finding triggers for his tics or behaviors...... Also, what symptoms of yours were alleviated, did you feel?

 

thanks

Faith

[Important To Understand!]

Wendy,

thanks for sharing these thoughts. just to clarify,......

 

Treating with IGG binds with and lowers the levels of (AB') in conjunction with antibiotics (protects child from continued exposure) eventually cures child.

.......by IGG, you mean the Immunoglobulin? and by (AB), you mean antibodies?

 

 

 

and.....

 

Yes and eventually cross immunity occurs and they will 'hopefully' no longer require antibiotics. You will always have strains of bacteria within your body and you will never fully eradicate the S. Pryogenes. The development of cross immunity allows the own body to keep it at level that the body functions normally. The IVIG and antibiotics help to get them there.

 

 

...Are the S.pryyogenes the problem? are they and antibodies one and the same? When you say "keep it at a level", ...is the "it" referring to antibodies or the bacteria?

 

Basically, who is the bad boy?

 

 

thanks,

Faith

[Anyone tried NAET for PANDAS?]

Michael,

I've thought about this (treating strep via NAET) since I have had my son treated already for many things during the past year. I'm not 100% sold on it, I basically tried it as a last resort to see if it had any effects on my son's tics. I can't really attest to it having any positive effect however. we've treated many things and I didn't really see anything remarkable happen. we did treat 'virus mix', and again, didn't really note any thing in particular. I always hoped that I would hit on that one thing that may be the trigger for his tics and other issues, but again, can't really attest to anything. it was getting expensive, especially when some things had to be treated repeatedly in order to clear, the last thing we did was tomatoes, and had to do that like four or five times, so $60 times 5, $300 for one item, kind of alot. I havn't been back since tomatoes cleared. I wondered about the strep thing too, but don't know. I think I'll only feel it has some efficacy if I see improvement in issues after the treatment.

 

Other Michael, , having a NAET practitioner blocks from you is cool........but was YOURS featured on News channel 12???....

 

Faith

[Merry Christmas, Happy Holidays]

Thanks, and hope everyone had a happy and blessed Christmas as well.

 

love,

Faith

[Head itch]

my son scratches his head at night. I don't think its a tic, but he has a vocal tic that he goes "owwww' , so sometimes I think he scratches his head to make it look like he's saying 'owww' for a reason. because sometimes I'll say "whats the matter?" and then he'll start scratching and saying "oww, my head itches", so don't know if he's masking the reason for his vocal, or it really does itch at that time, because I only see him do this at night when he's settling down in bed.

 

CandKrich, is your child on antibioitics? I wondered if it was that too, and someone else reported itching in their child while on abx.

 

 

Faith

[Switching from azith to augmentin...]

Azith was 250 mg. per day.

 

The augmentin was 1000 mg. per day. He is 10 1/2 and only about 52 lbs.

 

Last week I found a new pediatrician and he did strep/culture and the ASO and Anti Dnase titers (which we've done numerous times in the past anyway) all normal, as usual.

 

I would consider doing Keflex for a bit, I'll have to re-visit one of the coveted docs tho.

 

 

Faith

[Update on Dd..and we saw Dr. Trifiletti Wedneday]

Welcome. So upon seeing the titers were still elevated, did the ped at least put him back on antibiotics? If so, which one?

 

Have you tried giving Ibuprofen (advil, motrin)? Some have seen it help ease some PANDAS symtoms and from what I've read from other Dr T patients, he has even asked them at their appt if they have tried it and what the results were. So, something to try before seeing him.

 

 

Hi Angela and all.

This is my first post. We have an appointment with Dr. Trifiletti next week. Hard decision on who to go to.

My son Z will be 16 next week. He has been treated for tics for several years now on Clonidine. ADD and OCD were never treated because the meds could cause exacerbated tics. Z presents so "normal" that he was denied a section 504 even when appealed.

 

Last spring our wonderful pediatrician had him tested for strep after some odd behaviors in school occurred. Titers came back elevated and we was started on Penic. which his neurologist took him off of in August. Things seemed good until a couple of weeks ago when grades started falling and some behaviors were odd. Had him tested again and strep titer are again elevated. Neurologist will not treat for PANDAS. The pediatrician said we should find someone to treat the PANDAS.

 

After calling in many favors and speaking to several physicians, it seems that there are only a few folks who truly treat PANDAS. We look forward to the appt next week.

 

P.S. This feels really good to get it out and not feel like a crazy person when talking to friends and school officials who think I'm nuts!

 

-HeidiS

 

I just wanted to comment on the advil and Dr. T., and his asking about it at appointments, it is just because he heard that some parents were doing this, it is not his idea, just want to clarify that, hope you don't mind. when we saw him, he asked me and said he heard someone mention that, or perhaps he read it here. his take was that he thought it was interesting that some would think to do that, and that he wouldn't have thought of that one himself. perhaps he thinks its an okay thing to try, but just wanted to clarify that it isn't his suggestion.

 

Faith

[Update on Dd..and we saw Dr. Trifiletti Wedneday]

heidi,

what is penic? is that a penicilin? how did he do while on that? did you see obvious imrovement? why would the neuro take him off if he's not the one who prescribed it?

 

btw, I understand about presenting normally, but if your son has a diagnosis of tics or ocd or ADD, he is allowed the 504 plan BY LAW. Even if you don't have a formal diagnoses, all you need is a letter from your neuro. And even if these symptoms do not seem to interfere with his school work, it is wise to get it in place, for you never know what the future years bring. I am glad I have it now before he gets into middle school, because I don't want to be playing around with that when all new teachers and principal who doesn't know my son. we need it mostly for the extended time, because he takes alot of time on things due to alot of erasing and going over letters and the anxiety that comes with all that.

 

 

Faith

[Dr. Cunningham's study]

When I requested the kit via an e-mail message, I just said "my son has had tics and ocd for the past 7 years". she didn't aske me for anything else after that.

 

 

Faith

[Topamax]

deagar,

when my son has had the head shake (two separate episodes two years apart), I really feel that drastically reducing or eliminating foods with high fructose corn syrup helped alot to reduce this greatly. I would just try it for at least a week or two. you don't have to do it forever, just enough to see if it has a beneficial effect, and then you can gauge from there on how much he can stand. Also, and I know its hard, but figure out a way to reduce computer games, if he does that. That seemed to help too. I could see this tic vamp up greatly when he would be playing on the computer.. Again, doesn't have to be forever, just enough to see a reduction, and then go from there. even tho its a pain, it's worth a try before going to meds. tell him the computer has to be repaired or give an incentive to do something else this week.

 

Faith