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Posts posted by simplygina

  1. 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.

  2. my sons stutter comes and goes like all his tics. his is starting the sentence with an aaaahhhh, aaaaahhhhh, aaaahhhh, several times before he actually gets the thought out. it isn't every sentence, more like the beginning of a phrase. his titers were all normal. every august we see an increase in all symptoms. we're guessing it is allergies because we've noticed it gets worse every year mid-august, but we've yet to find something beyond waiting it out that helps much. at least this year his overall mood has stayed pretty good which i am attributing to the abx & the fact that he hasn't had an infection since february.

  3. 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.

  4. I've seen posts here and there about how allergies can trigger or exacerbate tics. I have seen some using quercitin and other things.


    I'm wondering if allergies aren't contributing/triggering to my dd's tic and would like to try something allergy related to try to help her. Any contributions would be appreciated. dd is 55 pounds and cannot swallow pills yet. Dosing amounts would be helpful as well. Her nose is itchy (not sure how much is allergy and how much is tic) so anything for nose could help too. Thanks


    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.

  5. 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.

  6. 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.



  8. 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!

  9. 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?

  10. 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.

  11. 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!

  12. My daughter's PANDAS seems to get worse when she has to much computer time regardless of content.




    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!

  13. Is this typical even with antibiotics? An increase in anxiety all of a sudden:


    crying, doesn't want to go to his last baseball game of season (says he scared of batting... after five months???)

    says he hates baseball, always has

    hates the coach, coach ruins every game for him

    teammates are going to think he's wierd


    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?

  14. You may want to consider trying a different antibiotic as Amoxicillin can have up to a 25% failure rate with strep. A cephalosporin (keflex, omnicef) or Zithromax could be more effective. I would be careful about having her tonsils out with erradicating the strep first. Amoxicillin has a hard time erradicating strep sometimes. If her tonsils are cryptic and swollen it will be very beneficail to have them removed.



    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.

  15. Sounds like a small thing, but I was taking DS to the school dance today and while we were waiting for the "right" time for dropping him off, I told him, "Now one thing I want you to remember about parties is..." meaning of course, my personal mantra--no one here is thinking about you, they are all thinking about themselves and how they look, just like you are. But instead, he interrupted, perfectly deadpan, with "is not to eat until I actually explode." We had a giggle about it. But later, when I told this to my husband, I teared up about it. It has been so long since my funny smart little (not so much anymore) guy was in residence. We had a good time playing monopoly last night too. He lost and still made it fun and funny.


    Of course the question is, what am I seeing here? History is:

    -initial 17 day tapered steroids

    -30 days of Augmentin (850 mg x2)

    -Had some kind of cold/cough in the middle

    -No positive result--less attention, more rage

    -Changed to Azith, 500 mg x1. Up to now, still more rage, less attention. Then the last two days, we've gotten happy boy.

    -Also, added back in some probiotics



    So is this delayed response to the steroids (we're about 6 weeks out from start), is it the cold resolution, is it the probiotics, or is it the azith? Whatever, I'll take it!


    That's the part I'm enjoying the most with DS lately. He has really been cracking me up lately!

  16. My daughter has been using MB12 cream for 4 months now to build up her immune system so that it can fight viral and bacterial infections. Since being on it, she has had strep 4 times even while on ABX. She hadn't shown (normal) signs of strep for about three years before this.


    This is actually a good thing because her Dr. told us that the strep was colonized in her body and she is now fighting it and getting it out. He recommended she get her tonsils out (finally) but I am worried about doing this while she is ticcing. She started ticcing pretty bad about 10 days ago with this latest strep. He put her on Amox 500mg x3 daily for 30 days and her surgery is set up for June 24th right before the 30 days is up.


    Should I postpone it for a couple of months and try to get her on a stronger antibiotic or should I go ahead with it and just request IV ABX during the surgery and a strong one for a few months afterward.


    I am glad that they are finally getting the pitted permanently swollen things out of her throat but I do not want to make things worse for her by kicking something up. Any advice???




    My son's T & A surgery gave us a year of improvements. He's been far less sick since he had them out. His behavior improved. He started sleeping in his own bed through the night for the first time ever (he was 9 at the time). It didn't cure him either, but definitely improved things.

  17. would you say vocals are the most difficult of the tics


    for us vocal tics are the last to show up during an exacerbation & the first to clear up. for ds his most persistent tic is one where he pushes his stomach in and out.


    we just started vocals around feb...he may have had 2 days last summer but he also had a retainer then..and there were 2 days in december...maybe retainer....

    they may be deminishing..but its taking long and i hate them the most.....

    right now its a sneeze, cough, popcorn caught in throat, ch,ch sounds


    how long did it take to clear for your child????


    i hate them the most too, though i'm not sure why. embarassment? worry they are more noticeable?


    it really depends on the vocal & the cause. he sniffs for a week or so after a cold. some of his are not obvious tics, & one day I just realize they are gone. he has gone through periods of repeating either his or other's sentences, needing to enunciate hard consonant sounds to the point of ridiculousness & only being able to read out loud (these seem to also be all mixed up with his OCD somehow). those hung around for weeks (months?) but definitely disappeared with the Biaxin. some of the others he has had, like throat clearing, seem to be worse with exposure to things like red dye and come and go quickly.

  18. i don't know a lot about this sorry. i know that my son is on a low dose of zoloft and it has not seemed to have an effect on his tics. maybe it effected your son differently? what kind of withdraw problems did you have as we are hoping to wean DS of it this summer before school starts and once we get him on antibiotics.


    the effect was so subtle i didn't realize it was affecting the tics. maybe it didn't & is just a coincidence. i don't know, but i'm so glad to finally have him off the zoloft either way. body chemistry is so individual, so my son may have just not been a good fit for zoloft. but from our experience, i have no intention of trying anything else anytime soon.


    the side-effects we encountered while on the zoloft were: uncontrolled movements (squirming, writhing), weight gain (15 lbs in 6 months), manic behavior (non-stop talking, extreme silliness, insomnia) & possibly the tics. the weight gain was pretty consistent through out the time he took it. the other stuff got worse with each dose increase until it was unbearable & we decided it wasn't worth it. i will say that we do notice an improvement in mood at 25 mg. Unfortunately we got sucked into the "more is better" trap and kept increasing to see if we could improve more until we were at 150 mg. he only took that high of a dose for 2 days before we realized it was the zoloft & dropped him to his previous dose of 100 mg. his weight stabilized once we got to 25 mg again & he's lost about 5 lbs since and grown taller so i think he is within a few pounds of his ideal weight again.


    the withdrawal effects we encountered were pretty mild & manageable until we got back down to 25 mg. He would be grumpy for a few days mostly. he did have a period of about a week where he had "the brain zaps". i had heard about them, so i knew what they were, but it was still scary. lucky that didn't last long.


    i knew we had to wean him off slowly because i had several people tell me withdrawing off zoloft was the absolutely lowest point of their lives. my sister said she has never felt that low & sad & wondered what was wrong with her & how she was going to make it through life. so we lowered it 25 mg every 3 weeks or so until we hit 25 mg. i had read that the stopping altogether was the hardest transition, and it definitely was. we tried 12.5 mg for awhile, but it meant slicing the pills into 1/8ths & we decided 25 mg was good for the rest of the school year.


    at 25 mg we encountered the sadness. he was just totally emotionally raw. so much so that after trying to stop taking it several times we decided we had to wait until school let out before we would try again. things like sobbing in math class because he forgot his homework & would have to stay in for recess to redo it. or not being able to do as many push-ups as last week during the Presidential Physical Fitness testing. we figured we'd save him the social embarrassment because 4th grade boys can't be sobbing at school. we knew it was a withdrawal reaction because it would go away within 12 hours of starting 25 mg again. it makes you wonder if they are stuck on a drug for life because you can't get off the darn thing!


    for us the Biaxin did everything i had hoped Zoloft would. and i'm actually more comfortable with it because they know far more about how abx affect the body than they do about SSRIs, especially in kids. i still think DS may need his neurotransmitters evened out a bit, so we will probably add 5-HTP to his supplements to see if it has a similar seratonin boost for him. inositol seems to work the best for his OCD anyway. at least the "disturbing thoughts" aspect. therapy seems to work best on the germs, evens & just so part of it. he also takes samE which seems to work well for him too.

  19. So we have finally weaned DS of Zoloft completely. It has taken us since late October! We finally just pushed through the final withdrawal reactions. I think it will be a few more weeks to have it completely out of his system, but I think we are through the worst of it. I wish I had known more about the withdrawal problems associated with SSRIs before we started.


    It may just be a coincidence, but DS's tics have all but disappeared.


    Now that I look back I wonder if Zoloft was the source in the first place. Maybe not the source, but made everything worse?


    He started taking it February 2009 with dose increases every few months until October. Coincidentally his tics continued to get worse through the same time period. We decided to take him off the Zoloft after the last dose increase left him squirming and writhing & manic with 24 hours.


    It's so hard to say for sure because this is generally his best time of year, and he's been taking the Biaxin. But I definitely think the Zoloft made things worse. I didn't realize that even the low dose was contributing.

  20. I definitely agree with this. We have done extensive testing, blood, stool and urine, to have a better understanding of my son's deficiencies/needs. All of our supplement use is guided through our dr.


    I recommend the book by Kenneth Bock, "Healing the Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders". It was very helpful as I was trying to figure out what direction we needed to go in. I would take it to my son's dr's appt and reference parts of it to our dr. He would then help me decide if the particular test or supplement was needed for my son.


    A lot of people have a lot to say about this but you really need to research it yourself and please be sure to see if it is contraindicated with everything else.


    i was just going to recommend the same book. he gives information about what supps help & why, plus dosing recommendations.


    we've had great luck with the Bontech Supplements, which are a blend of stuff and were created to help with TS & OCD, but the main ingredients are magnesium, taurine, & B vitamins. DS also takes fish oil, a high dose probiotic, inositol, SamE, & curcumin.

  21. My daughter is almost 14 and started her PANDAS "journey" the month after she turned 5. We rate her symptoms on a scale from 1-10, with 10 being the worst. There have been times in the past 9 years that she has been a 10, but thankfully not very often and not since she has been on daily antibiotics. Her very worst episode was when she was not on any antibiotics and got strep. She has also been a 1, but mostly hovers around a 3. If she rates herself as a 2 or 3 I am happy and so is she. She often jumps up to a 5, but it usually correlates with strep exposure, especially when it has been a family member with strep in the house, and responds to an increased dose of Zithromax. I will bump her up for 5-7 days and it usually works.


    My question is, even when she is a 1 or 2 or 3, there is one symptom that has never gone away. She is afraid to sleep alone. For the past 3 years it has been consisitent. She is able, however, to spend the night at a friend's house with NO problem whatsoever. I am wondering if part of this is that it has just become a habit. Does anyone have any thoughts?





    I always thought it was curious that DS could sleep at friend houses as well. But if you think about it, they aren't sleeping alone. When DS started sleeping on his own in his own room at 9 after his tonsillectomy, I was soooo happy. Since then he goes through bouts of wanting to sleep with someone. Since we won't let him sleep in our room anymore he lets his younger brother sleep with him or he calls the dog into the room to sleep with him. i do think there is a habit component to it, but when the stars aligned or whatever happened after he had his tonsils out, he just started sleeping all night without fear one night. so it is more than JUST habit at play. i know he must feel a need to not be alone pretty strongly because his brother sometimes wets the bed!

  22. DS just started Biaxin two days ago. He seemed to be doing okay with it. I know to make sure he eats prior to taking it and he is eating 2 activia yogurts daily. This morning, he was fine, ate a bowl of cereal, had his biaxin and off to school. I promptly got a call to pick him up because he threw up at school. He doesn't seem ill at all.


    Amoxi didn't work for him and he can't take augmentin. I'd like to be able to work the biaxin out. Is this something he is likely to get used to? Is there something else I should have him eat with it that would help him more?


    it may just take a day or two for his tummy to adjust. my son felt really nauseous the 2nd day. the 3rd day he was a little queasy. since then he has been fine. he eats a lot of bananas, which he says settles his stomach. you could try that?

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