pmoreno Posted February 4, 2009 Author Report Share Posted February 4, 2009 We had seen Dr Majkowsi, after being admitted through the ER. I had heard just a tid bit of PANDAS and she refused to even speak about it. Even though we had a positive strep test at Beaumount, she said she wouldn't even consider it unless she proved for herself via titers that he had indeed had strep. She was using bloodwork taken just 4 days after his positive strep test, and of course all of the levels were within "normal" range, though no one would tell me the levels. She then said she couldn't see us for 8 weeks. When I called two weeks after the ER visit and left her a message indicating he was worse and couldn't even attend school, I never got a call back. Not even to this day...I hope you do much better with them... Was that doctor in the department of neurology? As I've found out here at U of M, there are some departments that are great - others not so great, and then even within a department there's good and bad among the individual doctors. Sounds like you ended up with one of the worst of the bunch. As I said, I was extremely impressed with the neurologist from Children's I saw today, even though she didn't have a strong background in PANDAS, and she was very anxious to refer me on to Dr. Chugani who is supposed to be the Guru of PANDAS there. I think he's the Chief of neurology. Anyway, if I were you, I would try approaching Children's again, but this time try to see him right from the start. I was told its easier to see him in his Birmingham office as he is in Novi only once a month and his Detroit office is always booked far in advance. If you do want to see him and can't get in early enough, why not do what I did - get an appt. with his colleague - the one I saw and she'll refer you on and expedite things for you. EAmom, you were talking about the behaviors not totally resolving between episodes. I do believe you're right when you say that it could be from residual brain inflammation. Since Gaby started her second episode in August, she has been up and down and symptoms have changed so many times. Even though at times she looks great in some areas, there's still the really immature speech and inability to perform academically like she used to. I hae a feeling that these things won't clear up 100% until they're completely done with it. Link to comment Share on other sites More sharing options...
greeneyes48072 Posted February 5, 2009 Report Share Posted February 5, 2009 Yes, she one of the main 8 neurologists they have on staff. Have you heard back from them? How did it go, with the results? I would love to hear how Gaby is doing and how Children's may be helping you guys out... Link to comment Share on other sites More sharing options...
pmoreno Posted February 6, 2009 Author Report Share Posted February 6, 2009 Hello All! I just had a very informative phone consult with our biomedical doctor (DAN) in Florida and he has given me some good advice, as always. Since these consults are pretty darn expensive, I want to get the most bang for my buck so I want to be able to share information with as many of you as possible. Since Gaby has started with all the repetitive phrasing and questions within the last 2 months, it has been crippling for her. She can't have any normal conversations or learn anything in school because she is constantly interrupting with these obsessive questions. The doctor tells me that the OCD here is a result of the anxiety that she feels (especially from intrusive thoughts) and that the OCD behaviors are actually used as a coping mechanism. While we are waiting to do more immune intervention, we have to do something to quell her anxiety and get the OCD under control. It's seriously interfering with sleep too because she'll wake up in the night asking these repetitive questions. Here is what he suggests: (I know that some of you have tried 5HTP and inositol, but here it explains in what order to give them, dosing, and how and why they work) Traditional SSRI's (like prozac) recycle available serotonin and so eventually you get serotonin syndrome. That's why you don't want to go there. 5HTP is a precursor to serotonin and it does not prompt the body to use its existing levels of serotonin, but rather it prompts the body to make more serotonin. After about two weeks of taking it and having more serotonin available, then you can add inositol which helps to pry the serotonin off the platelets (where it is stored by the body). Some people actually have enough serotonin, but it's not being used efficiently because it gets stuck on the platelets - that's where the inositol comes in. These two natural products taken together can help to decrease anxiety and improve sleep. The dose he recommends is: 5HTP 50 mg twice a day for a week, then increase by 50mg every week until reaching a level of 200 mg. twice daily. The inositol - 2 capsules (2 grams each) twice daily for a week, then level at 4 capsules twice daily. He said that one should expect to see improvements in sleep within the first few days, but OCD improvements would take more like two weeks. I had asked him about the vitamin D controversy and he said that if a child has a normal vitamin D level, he doesn't recommend giving any more than 1000 mg daily as a supplement (if any). He is not a proponent for high dose vitamin D for inflammation because he said that if there are infections that are intracellular, vitamin D (which really is more of a steroid than a vitamin) will not be able to take care of that inflammation, but will just mask the symptoms. Therefore, if someone has such an infection, they may not be able to find out and be treated adequately. I asked him about valtrex since Gaby seems to have recurring oral herpes simplex 1 lesions. He said that if you give it at the first sign of tingling or itching, it shortens the course dramatically and can help minimize an immune response. Interestingly, he also uses it for children who have no history of herpes lesions for the purpose of pushing the body to produce more glutathionine. This is very important in maintaining a healthy immune system. He starts out for one or two months and if improvements are remarkable, continue for a full 6 months and then stop permanently. The dose is a half of a 500 mg tab three times daily (in other words 750mg per day). I asked about side effects because I've read some negative things about it, but he says that with that dose and for that amount of time, there is no real danger of anything. The bad news is that, like antibiotics, it can cause an increase in yeast, so an anti-fungal would have to be used in conjunction with it. I am considering this because it might kill two birds with one stone - increase the glutathionine and also act as a preventative for the herpes. Just not sure about wanting to deal with yeast issues again - so will give this whole thing some thought. We also talked about the benefits of doing the spect scan which we are anxiously waiting to have done. He said that it would show the areas of increased activity in the brain - would most likely show some inflammation of the basal ganglia and probably some abnormality in the anterior cingulate (which is the part of the brain responsible for the perservering - repeated questions or behavior). Knowing these things makes treating symptoms more accurate and also will show doubting traditional MD's and insurance companies that there is a physical reason for the behaviors. Greeneyes, I know that you're waiting to hear test results and other info about Children's hospital, but I did not hear back from them today. I will call tomorrow and will update you as I get the information. I hope that this information was helpful to some of you. (I know there's some old-timers out there who probably knew this already) Link to comment Share on other sites More sharing options...
amy s Posted February 6, 2009 Report Share Posted February 6, 2009 I asked him about valtrex since Gaby seems to have recurring oral herpes simplex 1 lesions. He said that if you give it at the first sign of tingling or itching, it shortens the course dramatically and can help minimize an immune response. Interestingly, he also uses it for children who have no history of herpes lesions for the purpose of pushing the body to produce more glutathionine. This is very important in maintaining a healthy immune system. He starts out for one or two months and if improvements are remarkable, continue for a full 6 months and then stop permanently. The dose is a half of a 500 mg tab three times daily (in other words 750mg per day). I asked about side effects because I've read some negative things about it, but he says that with that dose and for that amount of time, there is no real danger of anything. The bad news is that, like antibiotics, it can cause an increase in yeast, so an anti-fungal would have to be used in conjunction with it. I am considering this because it might kill two birds with one stone - increase the glutathionine and also act as a preventative for the herpes. Just not sure about wanting to deal with yeast issues again - so will give this whole thing some thought. We also talked about the benefits of doing the spect scan which we are anxiously waiting to have done. He said that it would show the areas of increased activity in the brain - would most likely show some inflammation of the basal ganglia and probably some abnormality in the anterior cingulate (which is the part of the brain responsible for the perservering - repeated questions or behavior). Knowing these things makes treating symptoms more accurate and also will show doubting traditional MD's and insurance companies that there is a physical reason for the behaviors. Greeneyes, I know that you're waiting to hear test results and other info about Children's hospital, but I did not hear back from them today. I will call tomorrow and will update you as I get the information. I hope that this information was helpful to some of you. (I know there's some old-timers out there who probably knew this already) Pmoreno- I think I have mentioned this with you in the past, but my dd also had HSV 1 lesions and has for long term. She was under a year old with her first outbreak and for some reason just could not shake it. She eventually went on long term prophylactic antiviral therapy with Acyclovir and has done amazingly well with it. She has been on it for years and every doc that I've dealt with keeps telling me that the drug has been around for 20 years with very little side effects and has an amazing safety record. My dd had cold sore outbreaks on her face about every 5-6 weeks and then started to get them in her eye and that is what prompted the prophylactic dosing as it can cause blindness (the leading cause!). When her pandas episode first began everyone, me included wondered if it was due to the acyclovir and she was taken off it only to have continuing pandas symptoms and then continuing outbreaks in her conjuctiva of her left eye. And actually many times over the years she has had several month 'breaks' from it to see if she would still need it, and yep, she still does. Anyway, after pandas came into our lives and when my dd first exhibited the symptoms many thought she was suddenly autistic at age 6...and someone at that time gave me a bunch of research papers and info and one of the things I remember reading about was Stan Kurtz's research with his child and others regarding antiviral therapy. I'd bet there is something about it on latitudes somewhere, I haven't done a search, but here is a website with some info I thought interesting and might be helpful to others as well. http://www.tacanow.com/medical/comprehensi...iral-autism.htm Anyway, I have often wondered about pandas being on the spectrum and how all these things come into play, but I have thought at times that my dd's pandas symptoms are not only strep induced but also HSV induced (at times, not always), as well as other viruses and bacteria that we all know our kids have issues with. Anyway, I have wondered if perhaps my dd's pandas type symptoms had been repressed due to already being on an antiviral long term ? who knows. Anyway, I wanted to pass that along to you. Good luck with the upcoming spect scan. Which by the way my dd had a spect scan too, prior to doing IVIg and it did show basal ganglia inflammation indicative of OCD. Well, like I told you before, I already knew she had OCD...I just wish we could find something that shows what the heck is wrong with their immune system exactly to cause all this mess to begin with. Anyway, I know I already told you that stuff privately but I figured I'd say it on your post since there are so many others out there needing all the info they can get. you, gaby and your family are in my thoughts. I hope you find answers soon. Link to comment Share on other sites More sharing options...
pmoreno Posted February 8, 2009 Author Report Share Posted February 8, 2009 I asked him about valtrex since Gaby seems to have recurring oral herpes simplex 1 lesions. He said that if you give it at the first sign of tingling or itching, it shortens the course dramatically and can help minimize an immune response. Interestingly, he also uses it for children who have no history of herpes lesions for the purpose of pushing the body to produce more glutathionine. This is very important in maintaining a healthy immune system. He starts out for one or two months and if improvements are remarkable, continue for a full 6 months and then stop permanently. The dose is a half of a 500 mg tab three times daily (in other words 750mg per day). I asked about side effects because I've read some negative things about it, but he says that with that dose and for that amount of time, there is no real danger of anything. The bad news is that, like antibiotics, it can cause an increase in yeast, so an anti-fungal would have to be used in conjunction with it. I am considering this because it might kill two birds with one stone - increase the glutathionine and also act as a preventative for the herpes. Just not sure about wanting to deal with yeast issues again - so will give this whole thing some thought. We also talked about the benefits of doing the spect scan which we are anxiously waiting to have done. He said that it would show the areas of increased activity in the brain - would most likely show some inflammation of the basal ganglia and probably some abnormality in the anterior cingulate (which is the part of the brain responsible for the perservering - repeated questions or behavior). Knowing these things makes treating symptoms more accurate and also will show doubting traditional MD's and insurance companies that there is a physical reason for the behaviors. Greeneyes, I know that you're waiting to hear test results and other info about Children's hospital, but I did not hear back from them today. I will call tomorrow and will update you as I get the information. I hope that this information was helpful to some of you. (I know there's some old-timers out there who probably knew this already) Pmoreno- I think I have mentioned this with you in the past, but my dd also had HSV 1 lesions and has for long term. She was under a year old with her first outbreak and for some reason just could not shake it. She eventually went on long term prophylactic antiviral therapy with Acyclovir and has done amazingly well with it. She has been on it for years and every doc that I've dealt with keeps telling me that the drug has been around for 20 years with very little side effects and has an amazing safety record. My dd had cold sore outbreaks on her face about every 5-6 weeks and then started to get them in her eye and that is what prompted the prophylactic dosing as it can cause blindness (the leading cause!). When her pandas episode first began everyone, me included wondered if it was due to the acyclovir and she was taken off it only to have continuing pandas symptoms and then continuing outbreaks in her conjuctiva of her left eye. And actually many times over the years she has had several month 'breaks' from it to see if she would still need it, and yep, she still does. Anyway, after pandas came into our lives and when my dd first exhibited the symptoms many thought she was suddenly autistic at age 6...and someone at that time gave me a bunch of research papers and info and one of the things I remember reading about was Stan Kurtz's research with his child and others regarding antiviral therapy. I'd bet there is something about it on latitudes somewhere, I haven't done a search, but here is a website with some info I thought interesting and might be helpful to others as well. http://www.tacanow.com/medical/comprehensi...iral-autism.htm Anyway, I have often wondered about pandas being on the spectrum and how all these things come into play, but I have thought at times that my dd's pandas symptoms are not only strep induced but also HSV induced (at times, not always), as well as other viruses and bacteria that we all know our kids have issues with. Anyway, I have wondered if perhaps my dd's pandas type symptoms had been repressed due to already being on an antiviral long term ? who knows. Anyway, I wanted to pass that along to you. Good luck with the upcoming spect scan. Which by the way my dd had a spect scan too, prior to doing IVIg and it did show basal ganglia inflammation indicative of OCD. Well, like I told you before, I already knew she had OCD...I just wish we could find something that shows what the heck is wrong with their immune system exactly to cause all this mess to begin with. Anyway, I know I already told you that stuff privately but I figured I'd say it on your post since there are so many others out there needing all the info they can get. you, gaby and your family are in my thoughts. I hope you find answers soon. Amy: Thank you for that very informative article. I have to really give this some thought. If I go with the valtrex it means getting on an antifungal also and I'm not sure that I'm ready for that now - although I'm sure that there are probably some out here that have their kids on antifungals for the abx. I just got her gut straight - the last organic acid test came back great with almost no yeast or bad bacteria. I almost hate to throw things off again. But it may be something that I'll consider again down the road. I think that after the scan I will definitely give her the 5HTP and the inositol. This should help with the anxiety, OCD and sleep issues. The valtrex, on the other hand, could help with some of the immune issues and it sounds like you only have to do it for about 6-9 months. On some of the other topics you and others mentioned the fact that the kids seem to get worse when they go to school - so true! When I keep Gaby home for appts. or because she's not feeling well, or it's the weekend, she has many good or tolerable days, but when she goes to school, she has outbursts, more anxiety. (yet she wants to go to school so I don't think its because she's anxious about being there). I think they're just exposed to so much at school (can you imagine all the different viruses floating around on a given day with all those kids there?). As I've said before - it doesn't always have to be just strep. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted February 10, 2009 Author Report Share Posted February 10, 2009 Gaby has had a series of very good days lately. Don't know what to attribute it to - maybe just part of this cycle. I did increase her monolaurin to 2 capsules (one in AM, one in PM) to give extra support against viruses. Also she had a sniffly nose 2 days ago and I started giving her daily doses of extra vitamin C (not in tablet form -doesn't seem to work), but in a crystal powder form that you can get in health food stores - one teaspoon gives about 5,000 mg., mixed with orange juice. It's pretty bitter, but she does well with meds. Anyway, if you mix it well in less liquid - less for them to swallow, then chase it with a nice big glass of regular juice - it may have worked because she didn't go into a full fledged cold at all - as a matter of fact, all her cold symptoms are gone. In addition, large doses of vitamin C are thought to be a good natural chelator of toxins. Link to comment Share on other sites More sharing options...
pmoreno Posted February 11, 2009 Author Report Share Posted February 11, 2009 Gaby still has not returned to the repetitive questions or obsessive thoughts - but this afternoon she started laughing spontaneously which lasted right up until she fell asleep. I guess in the grand scheme of things it's better than crying or yelling, but why does it always have to be something? Link to comment Share on other sites More sharing options...
browneyesmom Posted March 1, 2009 Report Share Posted March 1, 2009 Hi Pat, We are now about 3 weeks from when our pediatrician first mentioned PANDAS to us. I recall that you posted on one of my threads about this particular thread of yours and I was still so much in shock, trying to get my head around all this, that I was not yet ready to read other posts. I spent the first couple of weeks researching constantly and working on compiling a medical history of what she's been dealing with the last year or two, as best I could remember... the first 6 weeks of this year were her first major episode, but now that I know about PANDAS, I realize, she probably was having minor episodes long before now and I was blaming other things or just perplexed as to what was happening and never found a good answer. We're now into yet another episode of strep infection and I've seen my daughter go from improving on the Amoxicillin with that strep infection about 3 weeks ago, to where she is now... getting worse again (visual and auditory hallucinations, defiance, outbursts, enuresis, struggling with schoolwork again, etc.) while she is now on Augmentin and Azithromycin for this strep infection. As you mentioned in one of your posts on this thread, I am, some days, losing it. I am so exhausted and horrified by this situation, what she endures, what to do about school, and worry over what the future holds... I'm so sorry for all you've gone through with Gaby and for the fall when you broke your toes. I hope things are going better there now. Blessings... Link to comment Share on other sites More sharing options...
pmoreno Posted March 1, 2009 Author Report Share Posted March 1, 2009 Hi Pat, We are now about 3 weeks from when our pediatrician first mentioned PANDAS to us. I recall that you posted on one of my threads about this particular thread of yours and I was still so much in shock, trying to get my head around all this, that I was not yet ready to read other posts. I spent the first couple of weeks researching constantly and working on compiling a medical history of what she's been dealing with the last year or two, as best I could remember... the first 6 weeks of this year were her first major episode, but now that I know about PANDAS, I realize, she probably was having minor episodes long before now and I was blaming other things or just perplexed as to what was happening and never found a good answer. We're now into yet another episode of strep infection and I've seen my daughter go from improving on the Amoxicillin with that strep infection about 3 weeks ago, to where she is now... getting worse again (visual and auditory hallucinations, defiance, outbursts, enuresis, struggling with schoolwork again, etc.) while she is now on Augmentin and Azithromycin for this strep infection. As you mentioned in one of your posts on this thread, I am, some days, losing it. I am so exhausted and horrified by this situation, what she endures, what to do about school, and worry over what the future holds... I'm so sorry for all you've gone through with Gaby and for the fall when you broke your toes. I hope things are going better there now. Blessings... Thanks for thinking about us. I haven't posted much lately - sometimes need to take a break and just spend more time trying to get some rest or sleep when I can. I had mentioned in one thread that Gaby was having a rough time for a little over a week with constant rectal itching - particularly at night and this would keep her awake (as if she was sleeping well before) but she was talking all night long about the itching. We thought she might have picked up pinworms after she went to a birthdary party at a place where the kids crawl through these play tunnels (you can imagine all the germs in there). Anyway, I wasn't sure that I really saw any worms, but they treated her with one dose of vermox and I also used those witch hazel wipes on her (which seemed to help the most for the itching). Now we're past all that. She still has trouble sleeping in general. She has started a new obsession which is eating. Even though she has always liked to eat - she's now voracious. Even after a meal - she's asking for more (sandwich or something sweet) - she's constantly talking about being hungry or asking for food. I usually don't give in to that (unless it's something like apple slices with peanut butter or pumkin seeds), but my husband will give her what she wants when I'm not around. She has gained way too much weight - her little belly is huge. She does not spend as much time asking repetitive questions, just a few here and there. You can converse with her most of the time and she has more concentration when doing activities. She's still very scared if someone is not sleeping right next to her in her bed and she happens to wake up - even though her twin is in the bed right next to her. In general, I have to say that she is improving over all and I'm seeing a trend that I saw last year around this time - she is gradually recovering. I've had her off antibiotics for about 4 weeks now. I believe that this thing just does what it wants - whether they're on antibiotics or not (from what I can see on this site - because a lot of times kids are on one or sometimes 2 antibiotics and still have symptoms). Anyway, I'm going to try to enjoy this period where she is doing better, knowing that it can change in a moments notice (hopefully - like last year we'll have about 3 months reprieve before things start up again in the fall). She still says a lot of nonsensical things for no reason and is about 1 1/2 years behind academically. We have a PET scan scheduled for March 10. I will keep everyone posted when this happens. My toes have finally gotten much better so that I can wear a normal shoe and don't feel any pain as long as I don't press on them. I know that you were saying that things are getting worse and you worry about school and the future. I can say this since we are doing better right now, but it seems that we have to resign ourselves to this waxing and waning. Sometimes its better and sometimes it's worse. It's best not to expect too much from her as far as school work during this time. Eventually she'll catch up in the future. It just can't be our focus right now - the only thing we can do is make them as comfortable and happy as is possible. I try to make Gaby laugh as much as I can - it seems to help. Just say silly things or tell jokes or tease them, etc. Go overboard in giving complements and making them feel as good as they can about themselves. Hope you and your daughter will have a period of reprieve too in the near future. I know we all need a break from this sometimes. Good luck to all & thinking of everyone on this site. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted March 4, 2009 Author Report Share Posted March 4, 2009 On another thread (can't remember which one now) just mentioned their child being on antibiotics with good results first few days, then a return of symptoms. They wondered about possible virus in addition to strep. I think that's entirely possible. Gaby has been doing really well (as I had just posted) for the last few weeks. (She has been off school for winter break for 9 days) As I mentioned, she was communicating quite well - you could have a meaningful conversation with her and could read a book at bedtime with her listening and concentrating. Well, she went back to school Monday and today (Tuesday) she comes home with a cough and all of a sudden she is talking constantly (just nonsensical things - hard to keep a train of thought) and not paying much attention to when she's read to again. She tells me things like - I don't want to be a cuckoo head again. I don't see any strep symptoms - think it's just viral - but just goes to show that anything can set off an immune response & odd behaviors. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted March 5, 2009 Author Report Share Posted March 5, 2009 Sigh - here we go again - Since Gaby caught this minor cold (and I do mean minor) she's just sniffling a little - usually at bed time and she was coughing yesterday - not today. She has gone back to major anxiety about everything. She'll look at me with a worried look and say "I think you only like cats" and she's tearful about it. - Have no idea what that's all about. We don't have cats and I'm not really a cat person - I'm allergic to them. If she gets up in the middle of the night to use the bathroom, she won't go unless I go with her. She sleeps with her arm over me to sense if I might get up. She wakes up around 1 or 2 and stays awake most of the rest of the night. As long as there are viruses out there - it seems that she's never going to get over this. Link to comment Share on other sites More sharing options...
trubiano Posted March 5, 2009 Report Share Posted March 5, 2009 'browneyesmom': I wanted to tell you that it took many weeks of being on antibiotic before my son's strep was finally under control. My PED gave him Bicillin LA injections every three weeks for a few months and it finally worked. We then switched to PCN. We still have issues with focus, OCD, and emotinal outbursts at times just as all PANDAS kids do. I tried to take my child off PCN a few times and with in a couple of days the tics and eveything else started back with a vengence. Try and stay on the antibiotic and I pray you will see a huge difference soon. Link to comment Share on other sites More sharing options...
EAMom Posted March 5, 2009 Report Share Posted March 5, 2009 Hi trubiano, I am concerned that your current antibiotic isn't "cutting it" if your son still has OCD/outbursts (don't know how bad this is in your situation?) etc. Many PANDAS parents find penicillin or even amoxcillin, isn't quite strong enough. Perhaps the pennicillin is keeping things from getting "full blown" (lowering strep levels, helping with the tics) but not eliminating it completely (esp. if you have intracellular strep which Pen. can't reach--need Azithromycin for that). Have you considered a steroid burst (to see if IVIG would help)....or even a trial of Azithromycin (do at least a month of Azith.) to see if that helps. One problem with pen is if you miss a dose, your child is essentially unprotected for several days. I'm not sure if this applies to Amoxicilln (which is like pen, but more broad spectrum) as well, but there are a lot of cases where even Amoxcillin doesn't get the strep. Here'a a link which you may find interesting. http://www.latitudes.org/forums/index.php?...in+strep+throat Link to comment Share on other sites More sharing options...
Indigo Posted March 7, 2009 Report Share Posted March 7, 2009 EAMom, have you been able to stop the Azith eventually? I know they say to use it "prophalactically" but what does that mean exactly? I haven't had a point where dd does well more than 5 days off the Azith, and it's probably still in her system then...then all the PANDAS symptoms start coming back. Link to comment Share on other sites More sharing options...
EAMom Posted March 7, 2009 Report Share Posted March 7, 2009 Hi Indigo, PANDAS dd is still on Azith. 250mg/day. We don't dare stop...there is a lot of strep going around school. Plus sister is a strep carrier who gets strep with no symptoms. So far sister has tested positive 2x this school year. Prophylactically basically means "preventive"...we're giving the antibiotics to prevent a strep infection (vs. waiting for an infection to develop and then giving the antibiotics). Many times a prophylactive dose is lower than a "regular" (therapeutic) dose. In our case, our dd is a regular dose (used prophylactively). ie...if she were a regular kid who needed Azith. for 5 days, that is the dose they would put her on. (Vs. the kids in Swedo's study who were on Azith. prophylactively only got 500mg/week.) Even at 250mg daily we still see some break through of PANDAS symptoms (but nothing full-blown like last spring). Last month we saw a ramp b/c dd got fifth's disease (a virus). Yesterday dd had a prominent vocal tic (throat sounds, throat clearing). We don't know if this is because of strep somewhere in the envioronment or something else. She never had tics before last year with her big PANDAS episode (when she was hospitalized for acute food refusal, malnutrition). Honestly, dd's PANDAS episode was so horrific last spring that we wouldn't take her off Azith. unless she has IVIG (and even then we'll still wait a year). Then perhaps we'll switch to something like pen (narrow spectrum), but which has a long track record for use in ARF, until past adolescence. The Anorexia Nervosa was just too scary for us to want to take the chance and take her off the abs. Link to comment Share on other sites More sharing options...
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