simplygina

We tried Zoloft & it didn't help enough to warrant dealing with the side effects. The initial dose of 25 mg did seem to help, though looking back I can't help but notice we started during the time of year that he normally starts to improve anyway. We totally got sucked into the "if some helps, more must help more" mentality, even though we really couldn't decide if we were seeing improvement. By the time we got to 150 mg 11 months later, I realized that the Zoloft was actually causing the increase in tics, & sleeplessness, as well as manic talking & him writhing around being unable to sit still. And he'd gained 15 lbs in 6 months. At that point we decided that it hadn't helped all that much so we wanted to wean him off. That was easier said than done. Don't let anyone tell you there aren't withdrawals because there certainly are. We had to go much more slowly than the usual weaning schedule the doctor gave us. He would get irritable, emotional, headaches, upset stomach & crazy zapping in his brain. We finally weaned him off completely 9 months later. He is still about 5 lbs above the ideal for his height (he was always right at the 50% mark for weight & height). Since the original dose did seem to provide some improvement, we decided to see if a natural seratonin booster would also help. Since then we've been using 5-HTP (among several other supplements as well & Ibuprofen) with comparable results & no side effects that I can see. The continued use of abx has provided far more of a mood boost than either the zoloft of the 5-HTP have. We've also noticed that my son consistently gets worse each fall until it snows so we are assuming there is an allergy connection. The fact that Benadryl seems to reduce his tics quite a bit without making his sleepy seems to be pointing to that direction as well. I personally don't think the problem with our kids is low seratonin, it is inflammation & disrupted immune regulation & an SSRI doesn't fix that. But that doesn't mean that some PANDAS kids might not have low seratonin levels as well & benefit from one. I'm certainly not going to advise you against trying it. But our experience was not great. My advice would be to go really slow & be very careful with dose increases. Make sure you are seeing positive benefits that are equal to the side effects it may be causing. If any behaviors worsen within a few days of a dose increase, lower the dose to the previous level & see if they reduce again.

I read somewhere that it is a tic but to me it seems like a tic/compulsion hybrid. My son does both.

my son had his tonsil out almost 2 years ago. it did help curb the chronic strep infections, but last winter we still had several ear & sinus infections. they didn't respond to amoxicillan at all & omnicef only cleared the ear. i wonder if he had strep in the sinuses (we never cultured) because his doctor figured we'd treat it with abx anyway. once we started biaxin he cleared up right away & has been infection free since february. we are currently looking for a new doctor because i want someone who is willing to think outside the box & is interested in solving the PANDAS puzzle for my son.

i have nothing helpful to say except we are experiencing the same thing right now. from mid-August until it snows (late October) we struggle with an increase in all PANDAS symptoms. the tics are the most noticeable, but disturbing OCD thoughts & struggling emotionally are also a problem. we've just been using zyrtec, but i really don't think it helps much. i know benadryl does, but i hate to give it to him very often because it does make him tired.

Red dye was the first thing I realized was a trigger for my son's tics. It also makes him more hyper & impulsive. He's really good about avoiding it. I wish he'd be as careful with other artificial colors as well. Caffeine is another obvious trigger for him & he is practically manic for a bit, talking & moving at 100 mph, then crashes. I also notice that after a weekend of camping or vacation where we are more lax about letting him have some junk, there is a definite period of about 3 days for him to detox. The first he will be touchy & emotional, the 2nd he will just be tired & often will complain of a headache. By about day 3 he seems to be almost back to normal. I noticed after this last weekend, he was also experiencing more OCD as well. He tends to be rather hypoglycemic & sensitive to sugary foods, but I suspect that HFCS is our biggest culprit. The older he gets (he's 10 1/2), the harder it is to control what goes into his mouth. We talk about it a lot, and he tries, but sometimes he just wants to eat the crap & deal with the after effects, & sometimes he just doesn't realize he has eaten something that is going to cause a reaction, and sometimes there isn't much of an alternative if we didn't plan ahead. I had to laugh this past weekend though. We were staying at a cabin without a coffee maker. By day 3 I was having a caffeine withdrawal headache that was pretty bad. Finally he suggested I drink a caffeinated soda. He went to the fridge & came back with a Dr. Pepper that was made with sucrose instead of HFCS. My BIL asked why he didn't get me a Diet Coke or regular Coke because they would have more caffeine. DS looked & him & said, "Oh, this is made with real sugar though. It is waayyy healthier". Of course BIL had a good laugh at the idea of real sugar being a health food! We of course talked about soda in general being NOT healthy at all, & the fact that I was having withdrawals was a sign that I should cut back on my caffeine intake as well. But I had to give him credit for thinking about which would have the least amount of things on the "bad" list.

Could it be an allergic reaction? Something very similar happened to me actually not too long ago after I'd had about a glass and a half of wine. It was really scary. I woke up in the middle of the night because I felt like I was on fire. My heart was pounding & my stomach was really upset. I wasn't sure which end of me to put on the toilet (sorry if TMI). I felt soooo out of it, & kept thinking I must be dying, though it didn't occur to me to call for my husband. For some reason as I was laying on the bathroom floor (half naked because I was sweating buckets) I looked up & saw the box of Benadryl my husband had taken on a recent trip. I figured it couldn't hurt so I took two, and within a few minutes, I felt myself coming out of it. Since the Benadryl worked so well, and so quickly, I have assumed that it was an allergic reaction of some sort. It was this last Spring & I had the worst hayfever I've had in years. I've read that allergies can kind of compound on each other, and I think that is what happened. I haven't had wine since, though I did have a glass of champagne & was fine. I can eat grapes without any trouble as well. Prior to that, I had noticed I would be stuffy the next day after drinking any wine, red or white, & sometimes would take an anti-histamine the next day, which would help it. So I already knew I was having a minor reaction, but it was livable, & had gone on for years. This one scared me so bad I can live without wine forever! Just a thought.

Blake has never had oil of oregano because she's never been on antibiotics for more than a short period. I anticipate that it will be difficult at first. Putting it in capsules will be better, but we may have no choice. This would be a short term treatment for yeast infections. When the yeast is dead then it's over. I'm wondering how you all know that your child has a yeast issue? We are on daily abx & are taking a 40 billion cell probiotic capsule each afternoon. I haven't seen a difference with DS one way or the other because he never really had digestion problems that were obvious to begin with. Not to say that I don't think it is probably since he had so many ear infections & strep infections that he was often on abx when he was younger. I think I may increase the probiotic to two capsules. I have oil of oregano but I haven't given it to him because I don't really know what symptoms to be looking for. Also, how long would you give the oil of oregano for? How would you know the yeast was gone? I've asked my pediatrician about candida & was told he didn't really believe in all that. Needless to say we are looking for a new pediatrician. But in the meantime I am trying to get this all figured out on my own. Thanks!

Thanks for your opinions & experiences as well. We are going to try zyrtec for the next few days & see if it helps. He has always been one that doesn't seem to notice how his body feels. We've been to the doctor before with a dual ear infection, strep & a sinus infection with him only saying, "my throat feels weird". i didn't realize his sinuses had been a continued problem after we had his tonsils out until we started the biaxin & they cleared up for the first time. he hasn't been sleeping well either, again, which makes me wonder about sinus issues caused by allergies even more. i've always wondered if allergies are his source of inflammation. i hope the zyrtec works. i would say he is still in a better place than the last two augusts, but it is sooooo hard to watch him slip back downhill. i really wanted the abx to make it so we skipped all problems this year. wishful thinking!

For the past few years we have noticed my son's symptoms getting worse in August. We always thought it was anxiety about school starting, though he didn't really seem ALL that anxious. Last August is when we noticed he had multiple tics. Here we are in August again, and everything is getting worse again. I had wondered if being on abx this year would change things, but unfortunately it hasn't. He was taking a prophylactic dose all summer, but I bumped him back up to a full dose when I realized we were back in the same spot. He's not anxious about school. He's not sick. The only explanation I can come up with would be allergies. What else could effect him every year at the same time? He doesn't seem to have obvious "hay fever" type symptoms most of the time though. I did notice when we went hiking the other day that he was sniffing like crazy and his nose was running. He also fell apart halfway through the hike & told me he felt physically fine but mentally weak. I'm going to try giving him zyrtec for a few days to see if that helps. I know Benadryl works pretty well for him as well, but it does make him more tired. If the Zyrtec doesn't do it, I'll give that a try though. I called to see if I could get him into an allergist before school, but they are all more than a few weeks out for appointments. The part that bugs me about it the most is that they test the kids during the 2nd week of school each year to place them in their language arts & math classes. At the end of each school year my son tests at the highest end. But at the beginning of the year he does really poorly & last year was placed in classes much lower than his ability. When I looked at his tests I couldn't believe they were his! (This has happened a for a few years now, but last year it was made even worse by his brother coming down with strep during testing week. That's when I realized it probably WAS PANDAS) His handwriting is also terrible at the beginning of the year & much better towards the end. I used to think it was just a matter of not practicing over the summer, but now I think it is more than that. We are starting to practice a little each morning just to give him a running start at it, but I'm still worried about it. Can anyone think of any other reason, besides allergies, that DS might get worse each year at the same time?

OK, just realized i accidentally hit the "last" button & replied to a super old post. sorry about that!

we tried zoloft for about 9 months. at 25 mg we noticed a boost in mood & coping skills. over the 9 months we kept increasing but we never really saw other improvement. we realized that it wasn't helping and at a higher dose, was actually making things worse. it took almost another 9 months to wean him completely off of it. at one point he was at 150 mg & it made his tics much worse, plus he was writhing & unable to sit still, manic in that he was a complete motormouth & couldn't sleep. he also gained 15 lbs. in the 9 months. after that i wasn't willing to try another one. now we are using 5HTP & it seems to give him the same boost the first 25 mg of zoloft did. when we started Biaxin we saw a bigger boost in mood & coping skills than we ever could have hoped for. he's now taking 250mg twice a day & overall is doing much, much better.

It does help to try one thing at a time, but we are all so anxious to see improvement it almost seems cruel to not try something that seems promising. As far as supplements go, we do a bunch & do notice a difference, though nothing as dramatic as when we started abx. My 10yo takes flaxseed oil, the Bontech supplements (magnesium taurate, vitamins A,B,C,D,E, other minerals), tumeric, digestive enzymes, 5htp, inositol & melatonin. We see a definite improvement with disturbing thoughts with the inositol. The melatonin is also extremely helpful for his night time anxiety. The Bontech supps also help, though the effect is more subtle. the other we figure certainly must help since they are all anti-inflammatory. I am also thinking we are going to try the gluten free diet for a bit. It is just so hard to even contemplate starting! I think many people have a sensitivity to gluten but aren't as sensitive as someone with celiacs. The inflammation from the sensitivity causes problems with digestion causing leaky gut, leading to inflammation in other areas of the body. I keep thinking it could be why my son's immune system has never been very strong. I also wonder if it would help my ADD symptoms & my other son's chronic constipation. I really just need to do it for two weeks to see what effect it has for us. I thought summer would be the perfect time, but there have been so many parties, BBQs, vacations already that I'm beginning to think it might actually be harder. i guess it's never going to be easy!

My son does too. It's the same with TV or going to the movies. I'm not sure why, but it definitely increases his tics and makes him more emotionally volatile. Sometimes it is worth it (like going to see a movie as a family) but usually it isn't. I love Dr. Amen. I've even read parts of his books to DS to explain why I'm so strict about TV & games. Having a Dr. back me up goes a long way with that kiddo!

it may not be the right antibiotic for him. we tried augmentin but ended up with infections in the ear & sinus even on a strong dose. we switched to omnicef and his mental condition deteriorated to the point that i was truly worried about his mental health. anxiety & rage coupled with major sadness and not wanting to do anything but play his DS in his room. then we switched to biaxin & had a HUGE improvement in 48 hours. i had heard about people seeing this miraculous improvement when they switched abx but i never dreamed it would happen for us. so maybe he would do better on an abx from a different family?

Good point. My son's last strep infection coincided with a dual ear infection & a horrible sinus infection so we did a strong course of azith 2 weeks before the surgery so that probably helped.