pmoreno

I kept Gaby home from school today since she was so disruptive there yesterday and I wanted to keep an eye on her to see what's going on. She spent most of the day (about every 15 minutes or so) asking if she was loveable and if I tried to interrupt her or distract her from that she would get upset and insist on having an answer. She frequently complained about spots in front of her eyes and tonight at bedtime she complained of her stomach feeling yucky. This yeast is a horrible thing. Today was day 2 on the diflucan to kill the yeast so I am hoping that in a day or 2 things will start turning around a little. We had a meeting at school yesterday with one of the special ed consultants for the district and they are going to give her an aid until the end of the school year, so that if she starts getting distressed (which has been coming on randomly lately - completely unpredictable), she can be taken out of the classroom so as not to upset the other kids. On another note, while I was checking on the internet for supplements and other things related to yeast control, I came across some really interesting information on xylitol in the Wikipedia. It is a natural sweetener that not only is OK to use with yeast, but actually inactivates yeast, but what I found fascinating is that it mentioned in this article that kids who chew gum made with xylitol (particularly xylomax I think it was called) have been found to have fewer ear infections because it helps to kill some of the bacteria in the middle ear. You have to read it to get all the details - so any of you out there with kids that have chronic ear infections - check it out.

Started Gaby on diflucan around noon today to clear up the yeast. She has been screaming on and off at school today and when I called home at 8:30PM (I'm at work), my husband said that she tried to run out of the house without her coat and said she just wanted to die - just wanted to kill herself. I haven't seen this behavior since exactly one year ago when she had 1 -2 months of really scary behavior. Hoping that this is just a reaction to the yeast dying off - I've heard it could be like this. Hoping it's another full-fledged PANDAS episode starting up. Will keep you all posted. Pat

OK, I'm sorry I sounded a little panicky in my earlier post. I've since talked to my DAN and I have a better perspective. The odd behavior that Gaby had a couple days into our trip (along with the frequent fluffy stools) is as a result of the yeast - some die off and still some overgrowth (since the flagyl killed the clostridia and allowed more space for yeast to fill in). He is putting her on 5 days of diflucan which should take care of the yeast (the nystatin works, but in this case wasn't strong enough to deal with the extra yeast growth). We are switching to zithro 500 mg. once a week (pills made by a compounding pharmacy without the red dye). He recommends using nystatin only just the day before, the evening of, and the day after the zithro since it causes the most problems in the gut on the day that it is taken. He suggests enzymes with meals because even if she doesn't have food allergies or gluten/cassein intolerance, the yeast will tend to cause some leaky gut syndrome. I'll continue that for a while until I'm sure that the yeast is pretty much under control. I don't have her on a complete gluten/cassein free diet, but I'm limiting those foods as much as I can (without it being a real burden) just in case - He recommends l-carnitine supplementation because a lot of PANDAS kids and kids on the spectrum have mitochondrial dysfunction and this helps to correct that. (plus, her OAT test did show a deficiency in that) He also recommends lauricidine (but this is a brand name and its fairly expensive). I ordered it through new beginnings nutritionals and they sell it by the name of monolaurin which is the same thing but cheaper. It is a fatty acid derived from coconut oil and lauric acid (also found in mother's breast milk) which has strong anti-viral, anti-bacterial and anti-fungal properties (that should kill 3 birds with one stone - and it's natural). Finally, I'm starting the LDN (low dose naltrexone) which, if given in small doses (1 1/2 to max of 3 mg) nightly (a topical cream) applied 1 to 2 hrs. after they're asleep, it prompts the body to produce more endorphins which has a calming affect and helps with anxiety and OCD symptoms. It also gives support to the immune system. I had mentioned that I haven't completely ruled out trying the kavinace in the future to help balance the neurotransmitter levels, but I don't want to add too much all at once and I want to see how all this works first. It should bring everything back to normal gradually, but if I get desperate, I might think about the kavinace which would work fairly quickly (within a few days). I'm just so wary of overloading her with too much .....stuff. As far as the IVIG goes, it probably did help, but I'm seeing a lot of problems cropping up right now because of the prophylactic antibiotics and the behaviors of that are similar to PANDAS behaviors. Linda, you mentioned something about the dangers of IVIG - I guess I haven't read any of those posts - can you summarize for me? At this point, its done for Gaby - I won't repeat the IVIG. We've given what the doctor recommended should work and if it hasn't, then I don't see a reason to repeat it. I just hope that it has helped and that these other issues clear up with the yeast control. I am still worried about keeping her on long-term antibiotics because of that - but for the moment we'll try to do damage control. Pat

Dedee, I am still considering kavinace, although I'm going to try to use some natural immune modulators first (which take a little longer to see results - but might be a little more effective in the long run) - if I get impatient I'll probably start the kavinace which is supposed to re-balance the neurotransmitter levels and in that way, help with anxiety and OCD symptoms, including tics. My DAN has left it up to me to decide when I want to do that, but does agree that it could be helpful and usually within a few days. I did try to buy it myself online, but it's only sold through neuroscience and they will not sell it directly to patients (or parents) - it has to be purchased through a health care provider. I'm going to post with a little more info, in general, this afternoon after talking to my DAN again at 2:45. Thanks for your reply to my earlier post. Pat

Hello all and Happy Holidays, Haven't posted for a while because we went on a cruise for a week. It was nice getting away to warm weather, but Gaby has been going through a rough time. We did IVIG in Oct. and as many of you remember, great results for 2 weeks, then gradual decline back to pre-IVIG days. Things had actually improved again just before our trip with her falling asleep and staying asleep pretty consistently. There was a minimum of OCD behaviors - still not the concentration like before, but in general things were pretty good. We had an OAT test done by Great Plains and it showed a lot of yeast and other bad bacteria in her gut, so we consulted with the DAN doc in Florida and he recommended Flagyl for 10 days and nystatin 4 x a day for 14 days. In addition we started her on a high dose of probiotics (bought by recommendation of great plains nutritionist) 10 to 20 times more potent than found in most health food stores. Within a few days of this, fearfulness returned, OCD returned, sleeplessness returned. She would yell out (at least once or twice a day) "Something is bothering me" or "someone is being mean to me" and then she would scream hysterically and cry. This would usually last about 5 min. Prior to these meds, her stools looked pretty normal to me, but within a few days of starting them - they looked "fluffy" and orange. Almost the whole trip she would repeat various phrases over and over usually within a few minutes of each other. The most frequent one was "Am I loveable?", then "Does everyone like me and love me?", "Am I pretty?", "Do I have a kind and gentle heart?", and "I think the people don't know I'm Gaby". She would say these things so frequently that you couldn't carry on any kind of a conversation with her because she would interrupt constantly to repeat these phrases. She seems to have regressed by about 5 years in age. She's very baby-like. My DAN doctor felt that the augmentin she has been on (which is something Dr. K likes to keep his kids on after IVIG) has been shown to cause some brain swelling and he feels that zith 500 mg. once weekly would be a better choice. (also says that it means the gut is only assaulted once weekly rather than daily) I have not started that yet, but am considering it. When she took zith 250 mg daily for a week, she became quite irritable, but DAN doc says could have been the red dye in the liquid. He plans to have the zith made by a compounding pharmacy in a pill form. Now, here is what I'm really concerned about - what if we are just making things worse by trying all of these things. Just as a control, we had sent the urine off for testing to Great Plains for her neurotypical twin, Stefi, who has not been on abx for any reason and is just fine - never had behavioral issues, etc. and her test shows that she has an equally high amount of yeast and bad bacteria in her gut like Gaby - how is that possible? I certainly don't plan to give Stefi anything - I mean if it's not broke, why fix it? But it makes me wonder - did Gaby really need the meds we gave her? I know some people on this forum say that the probiotics have to be changed frequently to confuse the yeast and that if they stop giving them, their kids get worse - but that's just what I'm afraid of - that she will develop a dependency on these probiotics so that her gut can't work out the balance on its own anymore. At this point I am still considering LDN patches (the DAN seems to think they're fairly effective for the OCD), also thinking about OPC 3 or something similar. Her neurotransmitter panel indicated that she was quite unbalanced and kavinace seems like it might be helpful, but I don't want to try too many things at once and the LDN might do just about the same thing that the kavinace would, with the added benefit of helping the immune system so I might start there. Just when I think things are starting to make sense, it seems like they get pretty confusing again. Pat

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back) Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us. I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat Sorry for the confusion.... Before August 2007 (when pandas symptoms began) my dd did not have any anxiety. She had anxiety throughout the whole time along with her other pandas stuff and now s/p IVIg she still has anxiety, albeit at a functional level at least. thanks for clarifying. When exactly did your daughter have IVIG? What changes did you notice and at what point? You may remember from my earlier posts that Gaby had it OCT 4, had 2 weeks of 80% reversal, then gradually behaviors came back.Right now she is still anxious and difficulty concentrating, but I believe its better - not too many anger outbursts - just when she's confronted by her twin or other kids and she gets anxious.

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back) Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us. I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat

potassium is an electrolyte that has a very small margin of normal. If it is too high or too low it can cause serious cardiac issues. That's why it is never good to try to alter your level on your own without a doctor following your levels with constant lab monitoring. In the hospital they will give potassium supplements if someone is dehydrated because that can be dangerous in decreasing potassium levels. However, they are usually pretty careful about how much they give according to the blood work. If you have a child that is vomiting or having diarrhea and is not able to take in enough food or drink to replace the potassium they're losing, then parents can give pedialyte (which has electrolytes in it), the next step is IV replacement. I would think that the tics stopping with the potassium might have been either coincidental or because his potassium level might have been off and when brought back to normal with the IV, the trigger for his tics was removed. If people want to naturally add potassium to their diets, they can eat a lot of bananas and oranges, but beyond that, I would think it would be unsafe to add potassium pills without consulting a doctor and keeping a close eye on blood levels.

Sorry, I just checked my earlier posting and the mom who had replied mentioned that it was travacor that did not work well with the kavinace - not calmPRT. I don't know much about the calmPRT, but will read up about it and see if it is something that could be helpful along with the kavinace - but I definitely think the kavinace has got to be the answer - am looking forward to getting it for Gaby. Pat Yep, that was me! We didn't have success with the Travacor! But, we are still on the Kavinace and have been since back in May. Within 2 days I saw a HUGE reduction in his OCD and some of his tics. We just had a followup visit with his naturopath last week and she's pleased that he's doing well with just one capsule a day. In the beginning we were on 2 capsules a day. She had mentioned that she has some children on 3 a day. I have been experimenting with skipping 1 day a week on the Kavinace to see if it's supporting his system well. I've had no flare ups of the OCD. We've been skipping the past few Sundays(obviously, I picked a low stress day to experiment on) so he was going from Sat. AM to Mon AM before he would take the Kavinace again. Anyway, I hope those of you who try the Kavinace find a benefit from it as we have! Bonnie Good to hear that you're having continued success with this. I am anxious to try it, but am waiting for my phone consult with DAN doc on Tuesday to go over test results (from neurotransmitter panel & OAT test). Then we'll decide what the next avenue will be. I'm hoping he will agree to let us try it. I imagine that its something that they will take until they outgrow this stuff - puberty? I haven't heard of any real side effects have you? Pat

several months ago (coinciding when Gaby's symptoms started coming on again, but that also coincided with a viral infection that she had at the time) I had a mobile tooth that was bothering me. I had a root canal & they put me on a z-pack, but the tooth continued to be mobile and painful. For months the dentist kept telling me that it was just the mechanical irritation of upper tooth grinding down on the affected tooth and he filed off portions of it multiple times. The last couple of weeks I have been feeling extremely ill - fatigued beyond words, feverish, bad breath in the morning, chills, short of breath, some pressure in my chest. (and still the tooth pain) so I went back to the dentist last week Tuesday and explained what was going on. He looked at the gums and said they looked fine - didn't suspect any infection - said my symptoms might have been flu related. I asked for an x-ray, but at first he didn't want to do it, I insisted. That evening he left me a message on my phone which I didn't get, but he called me the next day at work to tell me that I needed to get on abx. I started a z-pack Wednesday evening and by Thursday was still not feeling better. Friday I felt a little better, but when I woke up this morning I woke up almost hallucinating and feverish and my breath was horrible, along with the taste in my mouth. At the same time, Gaby (I was sleeping in her bed last night), woke up (around 6AM -way before she ever wakes up) started screaming and saying that she was having a nightmare - I could barely calm her down. I know that toxins from strep found in dental infections can move to other organs in the body (even heart muscle) so I have to address that, but is it far-fetched to speculate that what's going on with me could be causing strep related symptoms in Gaby? In other words, could my tooth strep (if it is strep) stimulate antibodies to respond in her? Pat

Just as an added response to how Gaby is doing 10 weeks post IVIG. At home I see less anxiety, except maybe when she's tired, but I understand that at school she has moments where she either suddenly yells out at the air to "stop it" or she is worried about something that isn't happening. I think it may be that in school there is a little more stress (anxiety about performing academically, anxiety about other kids - what they think of her) Therefore, I would expect to see more of that behavior at school than at home.One positive note is that she has been falling asleep much easier for the last few weeks (takes between 1/2 to 1 hr, but is quiet while she is waiting to sleep, might toss and turn a little, but doesn't worry verbally) She might still wake up at night, sometimes I'm aware of her stirring, but I'm not sure how long she's awake because she doesn't tell me that she's scared or ask me to sleep next to her, so she may be sleeping through and if she's not - at least she doesn't seem to be overly anxious while she's awake. Thank goodness for small improvements. Other than that, she still talks about her imagination and will still say sometimes that it's being mean to her and she might have a worried look on her face. Still fairly spacey and unable to follow simple directions. I might tell her to go to the table and pick up the purple bag and hang it up on one of the coat hooks. She will walk right past it - I'll have to re-direct her - then she'll pick it up and walk around with it until I say again "hang it on the coat hook", then she'll pick up a coat and say "this one" - its like nothing really registers. Don't know if its just slow moving getting better on IVIG or if she has some yeast issues from the abx she's been on since first of October. She did have an OAT test done, and if you've been following any of my other posts, will see that the test did show that she has a high growth of yeast. The nutritionist advised a very high dose of probiotics that you can only get on line -not in the health food stores - like about 20 to 30 billion cFUs. I will be talking to DAN doc on Tuesday to see if I should give her nystatin and what else he recommends - could be her spacey behavior is due to yeast and not so much PANDAS stuff right now. Pat

Thanks, Colleen and Dedee for your helpful answers. Yes, this is an ongoing struggle of questions and answers. I just wish the mainstream docs would get serious about this and would start learning about it and that we would see some real research studies out there. Just from what I've seen on this forum and a few others, there are tons of parents with children like ours out there and we're all like sailors in a boat without a captain. We can try to support each other, but there are so many different opinions and treatments that haven't been scientifically approved yet. What can be do to be heard collectively? I know that autism is getting a lot of publicity (which well it should) and people are working on research - it seems like that should happen for us too. Pat

You've hit the nail right on the head - nobody is sure how much of which organisms constitutes a healthy balance. This is a scary thing. The nutritionist I spoke with seems to feel that Gaby should take 30 billion CFU's of a wide strain probiotic. Most adults don't even take that much. But she assures me that these kids are not like everyone else - their guts need it. I hope she's right. I'm putting my daughter's health in her hands. I worry about that she may develop a need for more and more of the bacteria (particularly if I withdraw it at sometime - then will the bad bacteria get out of hand again?). Today I e-mailed my DAN to see if he could prescribe nystatin for her so that we could try that a few days before our telephone consult (scheduled for Tuesday). He e-mailed back that since her profile showed a high amount of yeast, as well as bacteria, he felt that we shouldn't treat one without the other. Not sure what he means by that, but I guess I'll have to wait and see.

When Gaby had her IVIG with Dr. K the beginning of Oct, she was great for 2 weeks, but gradually she started having symptoms creeping in - she's not really bad - no tics returned, but spaciness, not able to concentrate well enough to function in school at her grade level, occasionally has a few outbursts (not often), talks to herself - is kind of goofy - no real fears at this point - sleep is slightly better - have thought all along that IVIG may not have helped her that much, but now after getting the results of the OAT test, I find out that she has a HUGE amount of yeast on board, since she started taking augmentin when she had the IVIG, did one week of zith recently, then back on augmentin. Hard to tell the difference between yeast behavior and PANDAS behavior. Her stools have looked pretty normal, but according to her profile - she has yeast. The nutritional expert at the lab recommends HIGH doses of probiotics. I have been giving her stuff from Whole Foods -usually about 2-3 billion CFU's, but she said that's nothing for a child with yeast - that amount is OK for a healthy child - needs to start out with 20 billion CFU's of a multi-strain probiotic which also contains 2 billion CFU's of bullaris (am sure I didn't spell that right - but I'm tired). anyway you can't get that in the health food stores - have to order it on line - will do that tomorrow from something called "New Beginnings Nutritionals". We'll see if I can nip this in the bud and if that doesn't change her behavior - maybe the IVIG did help after all (for the PANDAS behavior) and now I'm just seeing yeast behavior from the abx. Has anyone here ever used such high doses of probiotics? Makes me a little nervous, but I was told it's OK. Also am thinking about using the nystatin along with probiotics - don't know if it's necessary to do both - don't they do the same thing? Pat

What I'm not understanding is how going off the abx will suddenly bring on symptoms unless there is strep around at the exact time that the abx is stopped? Any answers out there?

As far as how bad the symptoms will get - its anybody's guess. From personal experience, my daughter's were much worse the first episode - with a lot of angry outbursts, crying, not being able to fall asleep or stay asleep and completely fearful at night. More symptoms than I care to mention, then as she gradually got better, had a 3 month remission and restarted her second episode, it was mild compared to that, but it seems that the symptoms change, this time more eye blinking, squinting, spaciness, some night time fears but not as bad, continued sleeplessness but not as bad, difficulty concentrating on school work but not as bad. I've heard some parents here say that it was worse the second time - so as you can see it varies with each child and varies with each episode and sometimes even changes during the episodes. Gaby had more eye blinking and squinting at first (in August, Sept. Oct - that's gone now - post IVIG), but she still has sleep issues, talks to herself, has sudden weird outbursts yelling at the air, still doesn't do school work up to her old standards. She has recently tested neg. for strep, but has an elevated ASO, just outside of normal range. What may be causing her symptoms right now is not strep, but the yeast from the abx. she has been on since IVIG in Oct. I had an OAT test done and the results came back with a huge amount of yeast and a number of other things being way off. I don't want to say too much about it yet, until I disucss with the MD so that I can figure out why and what and tx options. Pat

I certainly know what you mean - it seems like there are so many factors to consider. My daughter had a pandas panel which showed that she had a lot of antibodies reacting to strep as the antigen, She also had elevated ASO but not horribly high. Yet, she seemed to react more to viruses. She's been on 2 different type s of abx (augmentin and zithro) and have had no change of behavior with either. IVIG brought her back to normal for 2 weeks, but then she went back to her panda like behavior which has been going on for 4 months now (2nd episode) - just a continuous living in a fog with occasional outbursts of OCD or anger, worrying, etc. We just had an OATS test done (still need to talk to doc about what it all means and how to treat), but from what I can tell so far, it says she has overgrowth of yeast. Sure she has been on abx for 2 months, but I also give her tons of probiotics and GFS extract drops daily. What more can you do? Now you have to wonder if her symptoms are reallly her PANDAS symptoms or if they're the yeast symptoms. A number of other results within this test panel were abnormal, so I will re-post after I get some clarification. The test recommends various supplements, but I'm beginning to feel like I'm running a drug store for all my daughter's supplements - she takes more pills than a geriatric patient, and yet I cook very healthy meals and don't give her any junk food, so you would think that her nutritional status should be pristine. Pat

Wow, this sounds great. I've read information on a number of different sites and it seems to be a good supplement with no real side effects. Still not sure how it undermines the effect of ABX, but will ask my doctor when I have my phone consult on Dec. 23. It doesn't seem like it would interfere with other treatments, like for instance, if the child were taking kavinace or any of the neurotransmitter supplements. I do want to ask him about one thing before we try it. I noticed on one of the sites they mentioned something about white willow bark being the original source of salacin found in aspirin. I'm not sure if they were referring to the fact that this product contains white willow bark (it wasn't clear). I know it does contain pine bark. But if it, indeed, contains white willow bark which contains salacin, then I wonder if its safe for younger kids due to the problems with aspirin products causing rey's syndrome? Pat

How long has he been off dairy? And when you slip and let him have something not on his diet - how long does it take to get him calmed down again? By the way, I've head that if you give fresh pineapple with meals you don't have to give enzymes, because the pineapple has natural enzymatic properties. What I'm worried about is if I get her GF/CF for a period of time and she gets used to that - then when she ends up eating something that's off - does she react worse to it than if we'd never started this in the first place? I just fret a little about being a slave to a certain diet or meds. Pat

I wonder what would be the difference in using taurine vs. 5HTP for promoting sleep. Also you mentioned Candida clear NOW, is this better than simply using GFS extract on a regular basis. I hate to keep adding one more thing - especially when I never know for sure if there is yeast. How could you be sure that the L-carnitine was causing the edginess? I'm never sure what causes anything, because she takes supplements and antibiotics and you can't go off everything long enough to be sure by eliminating one thing or re-introducing one thing at a time. Too bad that the epsom salt baths don't help Gaby. It just makes sense that they would relax her, but she is even more agitated right afterwards and says she can't sleep. Don't know if its directly related, but seems to happen most of the time. Pat

Actually, I'm trying to cut down on gluten and casein, not so much because of any raging issues (she's usually fairly calm for the most part).However, apparently with kids who have a dysfunctional immune system, the large peptides that result from these foods can pass through the gut - called leaky gut syndrome and as long as the gut is inflamed, the immune system stays stirred up. For this reason, some people recommend that you try to stay on some form of GF/CF diet (even if a modified version) for about a year. Then you can introduce foods back slowly and it will have given the immune system time to settle down. It should be helpful to anyone suffering from autoimmune issues - whether its PANDAS, autism, etc... Pat

It has been very frustrating that the school does nothing to support me in this. It's a nut free school that won't allow any tree nut products inside its doors, but yet, they don't seem to care about any other special considerations. My daughter seems to react to chocolate (especially chocolate milk) and I have asked many times that she not be given this at lunch time, but she always seems to get it and then she'll complain of her stomach hurting when she gets home. She doesn't even have the ability to ask for juice instead of chocolate milk (which the server in the cafeteria has said she could do). I have sent her lunch along with her many times, but she always comes home with it uneaten and apparently just follows all the other kids up to the cafeteria line. I'm thinking I may have to start going to school with her to bring her her lunch and sit with her while she eats it. This isn't always convenient for me and the school already thinks I'm way over the top with my talk about IVIG and such. Don't know if I have much choice if I want her to eat healthy. I know that some parents who put their kids on a GF/CF diet say that even a little non-compliance can cause problems in their behavior. I am very careful about what I give her at home, but the school lunches - well, I know that I would have trouble getting them down- and to think that she eats that every day. (full of preservatives, artificial colors, sweeteners & additives). One thing that I am doing in the morning is making a smoothie in the blender and I add everything that would make up a whole meal which I hope is giving her a little nutritional support. I've heard that broccoli is supposed to be the most nutritious vegetable out there and avocado is really good too (broccoli loses a lot when cooked - and she won't eat avocados because of the texture), so I just throw some florets of broccoli and half an avocado in the blender along with a few spinach leaves, pineapple, pear (or apple), goat yogurt (easier to digest), Kagome juice (from Whole foods - it has beet juice, purple carrot & reg. carrot and a number of other fruits and vegetables - no added sugar), a very ripe banana for added sweetness and a teaspoon of chlorella and one of spirulina (they have a high amount of digestable protein). It's green and tasty. She loves it and will usually ask for another big glassful after she drinks the first one. Before this she would frequently complain of stomach aches after she ate or drank (and I used to think it was because she ate or drank too much - but it must have been what she was eating and drinking and not how much). Pat

If he's already on the zith, chances are his pox won't get infected with strep. It's true that viruses bring about an immune response just like bacterial infections do (my daughter seems to react more to viruses than strep). But, I'm finding from reading these posts that every child here is so different in what they react to and what works for them, and it may be that although it will bring on an immune response, maybe it won't be huge. Was he having any PANDAS symptoms before the pox - or was he in kind of a remission period? It seems like some triggers bring about a stronger reaction than others - depending on the child so it would be really hard for anybody to speculate how he's going to react. Pat

Well, its true that prednisone will help with inflammation, but its always temporary and you'd have to give a boat load of prednisone over a period of time to keep everything settled down which can be harmful. Prednisone is not a good long-term option. However, if its just over the holidays and it seems to work for her - then maybe its what you both need. As far as the antibiotics go, I guess every child must be really different because Gaby was doing so-so on the augmentin and when we changed her to zith she became very agitated - with occasional angry outbursts (something we haven't seen in a long time). We're now going back to the augmentin. Pat

I'm a little down right now. Gaby's been on zith for 5 days now - tommorrow will be the last. I didn't see any positive changes at all. I think I may have been giving her too much probiotic (they recommend 1/2 to 1 teaspoon and I've been giving a whopping tablespoon, mainly because I've been so concerned about yeast. I hope I'm not causing more problems for her that way. Also on the probiotics it states that it contains maltodextrin - the powder seems to be pretty sweet. I wonder if that would bring on more yeast problems? When I put her to bed tonight she took longer than usual to fall asleep (about 1 1/2 hrs). I stroked her hair, her back, said her prayers with her over and over and just when I would start to relax and think she was dropping off, she would stir and then she would say something like "what do you do if you're tired?" or is it okay to go to sleep now? At one point I touched her face and it was wet. I asked her if she was crying (because I hadn't heard any noise) and she said "yes" and I asked why and she said very quietly "I'm scared". That frightens me more than any loud angry outburst. Pat