sudden nightmare with Gaby yesterday

[ajcire]

I wish all doctors were on board the same with this stuff. Diane, I know you have talked to me about the dose as well.. my ds is only on 250 twice a week. I don't think his dr. will go daily because our symptoms are really mild compared to what I read about. Something is different in him though.. but I started the antibiotics and 5htp at the same time. I believe it is the 5htp that is helping with his mood. He still clears his throat sometimes... his sleep has been MUCH better. He doesn't even always ask me to check on him.

 

 

Hello Diana, EA Mom, etc:

Well the reason for the weekly zith at 500 mg. is because the doc in Florida felt that they do pretty well on phrophys at that amount and by not doing daily abx, it helps with the GUT issues.

 

Anyway, here is what's been going on since last Wednesday (which was my nightmare day), Thursday was better (at least no huge outbursts and I kept her home from school). Friday I thought she could go to school but she had a meltdown on the bus in the morning when another child pushed her - then she just couldn't rebound and regroup so I brought her home. The rest of the day wasn't too bad. Saturday was better, but after being around a little girl with sniffles (no strep as far as I know) she became somewhat agitated by the afternoon. Sunday, Monday and Tuesday have been equally OK with no questions re: am I nice? am I loveable? or other repetitive questions. However, maybe several times a day she would complain about the white spots in front of her eyes, but she wouldn't get quite that upset about it. It seems like things are winding down again. I have a feeling that she was exposed to something last Wednesday and it may not have even been strep - could have been some virus - who knows? Anyway, Feb 3 is coming up (appt. with neurologist from Children's Hospital in Detroit) and I am just on pins and needles, can't wait to get that spect scan so that we can see where the inflammation is and whatever else information the scan will give us.

[lss]

Hi Pat,

 

I ditto Diana's concerns about Gaby's Azith. dose. Our PANDAS dd is on 250mg/day (she got down to 42 pounds last spring, currently at about 56). If Gabby is older/bigger you might even need to do even more than 250mg/day.

 

I don't rememeber if you said you are using Ibuprofen. That helped us when our dd was bad...I wonder if there is a synergistic effect with the Advil/Azith.

 

I'm sorry to hear about the rough time you are having. I'm sure it doesn't help matters that we are in the midst of strep season.

 

 

EAMOM,

 

How much more than 250 mg of zithromax do you think a child should be taking. My son is 9 years old and weight is 90, should it be more than 250 mg? Also, we have been giving him Motrin at night, seems to help him sleep. Any advice on how often is too often. We just can't stop the tics, and one of his teachers is sick, so we can't get away from that. He also had a tooth that was bothering him, I'm wondering if that could have added to the symptoms. We had a filling done today, maybe we can see some relief, don't know.

 

Linda

[EAMom]

Hi Pat, Diana, Linda, and all,

 

The Azith. dose is a good subject of debate.

 

In Swedo's Azith/Pen. study the prophylactic dose of Azith. was 500mg/weekly. http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf That said, on the 500mg/week dose there was *not* a 100% decrease in "neuropsychiatric exacerbations". Exacerbations were "significantly" decreased but not eliminated. That could mean a child could have 1 exacerbation/year instead of two. (The paper said there was a 61% overall reduction of exacerbations, 94% reduction of GAS triggered symptoms. )

 

Personally speaking, having a child as severely affected as my PANDAS dd was ( and where 1 exacerbation lasted 5mo. until we "discovered" Azith.)...I don't think going from 2 to 1 per year would quite do it for me. To add insult to injury, having a younger sister who is a known strep carrier makes me all the more leary of going down to 500mg/week (from 250mg/day).

 

Also, it isn't clear to me how much of the Azith. benefit is from its immune modulating effects (vs. its action as an antibiotic) and at what dose this immune effect kicks in.

 

Fortunately, we are not having any (so far) GI problems on our current dose. We do see mild PANDAS symptoms when her younger strep carrier sister is strep positive...but nothing full-blown. I think things would be much worse on the lower dose of 500mg/week.

 

Linda...I found this online:

Azithromycin Dosage for Bacterial Infections

The recommended dose of azithromycin for most types of common bacterial infections is 250 mg or 500 mg once daily for three to five days. For chronic or more serious infections, your healthcare provider may continue treatment for an extended period of time.

 

In children, the dosing can range (depending on body weight) from 5 mg to 20 mg per kilogram of body weight per day (mg/kg/day), once daily for three to five days.

 

So if a 90 pound (41 kg) child got 5mg/kg (low end of dose range) that would be about 200mg/day; 20mg/kg (high end of dose range) would be 820mg/day. (In other words, a child your son's size could easily take 500mg/day.) My dd was 45 pounds when she started on 250mg/day, now she is about 55.

 

Also, Linda, the past couple of times our dd has had dental procedures (being paranoid) we've added Amoxicillin (which we already had on hand) to the Azith. The pediatric rheumatologist did tell us that dental cleanings, extractions, nose picking, can allow strep to be released into the bloodstream (which is why someone with ARF goes on abs before dental procedures).

[michele]

EA Mom

If you don't mind repeating yourself because I am sure you have posted this somewhere before, what is the exact type of antibiotic and amount you are giving currently? Is there other meds she takes in addition to the antibiotics?

 

We also get exacerbations that last three months at a time and seem to get worse each time. He is currently on 300 Mg of Omnicef a day. We give Abilify from 7.5 Mg. possibly to up to 10 mg. We are also probably adding Adderall XR 5 Mg a day soon. I am nervous about changing things up but the psych is trying to treat individual symptoms seperately. Right now he is finally coming out of the 3 month episode! Yeh!

 

Michele

 

Hi Pat, Diana, Linda, and all,

 

The Azith. dose is a good subject of debate.

 

In Swedo's Azith/Pen. study the prophylactic dose of Azith. was 500mg/weekly. http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf That said, on the 500mg/week dose there was *not* a 100% decrease in "neuropsychiatric exacerbations". Exacerbations were "significantly" decreased but not eliminated. That could mean a child could have 1 exacerbation/year instead of two. (The paper said there was a 61% overall reduction of exacerbations, 94% reduction of GAS triggered symptoms. )

 

Personally speaking, having a child as severely affected as my PANDAS dd was ( and where 1 exacerbation lasted 5mo. until we "discovered" Azith.)...I don't think going from 2 to 1 per year would quite do it for me. To add insult to injury, having a younger sister who is a known strep carrier makes me all the more leary of going down to 500mg/week (from 250mg/day).

 

Also, it isn't clear to me how much of the Azith. benefit is from its immune modulating effects (vs. its action as an antibiotic) and at what dose this immune effect kicks in.

 

Fortunately, we are not having any (so far) GI problems on our current dose. We do see mild PANDAS symptoms when her younger strep carrier sister is strep positive...but nothing full-blown. I think things would be much worse on the lower dose of 500mg/week.

 

Linda...I found this online:

Azithromycin Dosage for Bacterial Infections

The recommended dose of azithromycin for most types of common bacterial infections is 250 mg or 500 mg once daily for three to five days. For chronic or more serious infections, your healthcare provider may continue treatment for an extended period of time.

 

In children, the dosing can range (depending on body weight) from 5 mg to 20 mg per kilogram of body weight per day (mg/kg/day), once daily for three to five days.

 

So if a 90 pound (41 kg) child got 5mg/kg (low end of dose range) that would be about 200mg/day; 20mg/kg (high end of dose range) would be 820mg/day. (In other words, a child your son's size could easily take 500mg/day.) My dd was 45 pounds when she started on 250mg/day, now she is about 55.

 

Also, Linda, the past couple of times our dd has had dental procedures (being paranoid) we've added Amoxicillin (which we already had on hand) to the Azith. The pediatric rheumatologist did tell us that dental cleanings, extractions, nose picking, can allow strep to be released into the bloodstream (which is why someone with ARF goes on abs before dental procedures).

[pmoreno]

Both Gaby and her twin Stefi came down with sore throats, headaches, fevers and some nausea. I brought them in today to be checked for strep. Their reg. ped. was unavailable so we saw another doc - their rapid tests were neg. (have to wait on the 24 hr), but doc thinks they probably have a GI virus that's going around. Gaby also got a huge area of herpes simplex 1 (coldsores) on both sides of her bottom lip extending down into her chin. I asked if we could give her something for it and he said that by the time you see the lesions, the virus is already shedding and the body's trying to get rid of it. (In other words, she may have started with this one week ago when she had her outburst at school) These lesions were also present last year when she first started all of this. I'm so disappointed because I've been faithfully giving her monolaurin every day for almost a month now. I don't know if you have to take it longer for it to help with prevention?

 

This doctor believes that PANDAS exists, but he says - so you have a diagnosis - what are you going to do about it - there's no proven treatment. He says the best you can do is try to manage the symptoms as they come up, but he feels there's no real cure for this. We talked a little about different approaches and he said that he believes various well-meaning doctors will try supplements or treatments - if the child gets better, they take credit for it, if they don't then they say the child was an exception and might need something else. As far as the antibiotics go, he feels that zith isn't always the best prophylactic choice because there are a number of strains of strep that have become resistant to the macrolides. He says keflex is an even better preventative than Penicillin, but when you take prophylactics you still have to be prepared for the viruses that can't be controlled by antibiotics. Anyway, he painted a pretty bleak picture and kind of left me sitting there with a lot to mull over.

 

On top of all this, as if it isn't enough to deal with, we have to put up with parents of healthy children in school who have no empathy and make you feel worse. Today our principal called to update me about getting a trained aid that will always be with Gaby and school and he mentioned that the complaints are starting to roll in from parents who feel that Gaby is a disturbance for their children in class (because of her once or twice daily outbursts). I understand that it can be hard for them to understand, but even mentally impaired children are allowed to mainstream in classrooms and some of them can become disruptive. He is supportive and said that he's not concerned about the comments, but about what's best for Gaby. I'm glad of that, but I feel very bad that there are so many parents out there complaining - its almost like a witch hunt. Sigh!

[Dedee]

Wow, as if you don't have enough to worry about. Now you are supposed to worry about EVERY child in the class room. I mean I understand that you do have to have some resemblance of order for children to learn. But really, can parents not be more supportive? They just don't realize that they could be only one illness away from your current situation. I wish people would just stop to think before being so judgemental. As far as the doctor, well, just because their isn't currently a commonly accepted cure doesn't mean we stop trying. If that were the case, we would still be in the dark ages when it comes to medicine. That is the only way we learn, we move forward, sometimes in an clumsy manner and by trial and error, but WE KEEP MOVING. If we don't, what hope is there? I just hate the "we don't know what works so let's do nothing" mentality. It takes the courageous parent, child and doctor to work toward a cure. Good for them!

 

Dedee

[peglem]

This doctor believes that PANDAS exists, but he says - so you have a diagnosis - what are you going to do about it - there's no proven treatment. He says the best you can do is try to manage the symptoms as they come up, but he feels there's no real cure for this. We talked a little about different approaches and he said that he believes various well-meaning doctors will try supplements or treatments - if the child gets better, they take credit for it, if they don't then they say the child was an exception and might need something else. As far as the antibiotics go, he feels that zith isn't always the best prophylactic choice because there are a number of strains of strep that have become resistant to the macrolides. He says keflex is an even better preventative than Penicillin, but when you take prophylactics you still have to be prepared for the viruses that can't be controlled by antibiotics. Anyway, he painted a pretty bleak picture and kind of left me sitting there with a lot to mull over.

 

On top of all this, as if it isn't enough to deal with, we have to put up with parents of healthy children in school who have no empathy and make you feel worse. Today our principal called to update me about getting a trained aid that will always be with Gaby and school and he mentioned that the complaints are starting to roll in from parents who feel that Gaby is a disturbance for their children in class (because of her once or twice daily outbursts). I understand that it can be hard for them to understand, but even mentally impaired children are allowed to mainstream in classrooms and some of them can become disruptive. He is supportive and said that he's not concerned about the comments, but about what's best for Gaby. I'm glad of that, but I feel very bad that there are so many parents out there complaining - its almost like a witch hunt. Sigh!

It sounds to me like the doctor is frustrated that there isn't more guidance and research on what to do about PANDAS. But think he gave a pretty good summary, though it was a bit blunt. Is he refusing to try to treat, or just saying these are the options and he thinks Keflex is your best bet? I actually appreciate it when doctors give me straight talk like that.

 

I think the principal acted very unprofessionally in telling you about the parent complaints- that's his problem to deal with, not yours. Your only responsibility is to make sure your daughter gets what she needs to be successful at school. I don't see how sharing that information is going to do anybody any good. At the same time, the other parents don't have any idea what is going on with your daughter-they just hear about behaviors, so I can see them being upset. Its illegal for the school to share any personal or medical information about your child with the other parents. My concern here would be that the other children don't start picking on Gaby because of her problems-this would make things worse.

[pmoreno]

This doctor believes that PANDAS exists, but he says - so you have a diagnosis - what are you going to do about it - there's no proven treatment. He says the best you can do is try to manage the symptoms as they come up, but he feels there's no real cure for this. We talked a little about different approaches and he said that he believes various well-meaning doctors will try supplements or treatments - if the child gets better, they take credit for it, if they don't then they say the child was an exception and might need something else. As far as the antibiotics go, he feels that zith isn't always the best prophylactic choice because there are a number of strains of strep that have become resistant to the macrolides. He says keflex is an even better preventative than Penicillin, but when you take prophylactics you still have to be prepared for the viruses that can't be controlled by antibiotics. Anyway, he painted a pretty bleak picture and kind of left me sitting there with a lot to mull over.

 

On top of all this, as if it isn't enough to deal with, we have to put up with parents of healthy children in school who have no empathy and make you feel worse. Today our principal called to update me about getting a trained aid that will always be with Gaby and school and he mentioned that the complaints are starting to roll in from parents who feel that Gaby is a disturbance for their children in class (because of her once or twice daily outbursts). I understand that it can be hard for them to understand, but even mentally impaired children are allowed to mainstream in classrooms and some of them can become disruptive. He is supportive and said that he's not concerned about the comments, but about what's best for Gaby. I'm glad of that, but I feel very bad that there are so many parents out there complaining - its almost like a witch hunt. Sigh!

It sounds to me like the doctor is frustrated that there isn't more guidance and research on what to do about PANDAS. But think he gave a pretty good summary, though it was a bit blunt. Is he refusing to try to treat, or just saying these are the options and he thinks Keflex is your best bet? I actually appreciate it when doctors give me straight talk like that.

 

I think the principal acted very unprofessionally in telling you about the parent complaints- that's his problem to deal with, not yours. Your only responsibility is to make sure your daughter gets what she needs to be successful at school. I don't see how sharing that information is going to do anybody any good. At the same time, the other parents don't have any idea what is going on with your daughter-they just hear about behaviors, so I can see them being upset. Its illegal for the school to share any personal or medical information about your child with the other parents. My concern here would be that the other children don't start picking on Gaby because of her problems-this would make things worse.

 

 

What this doctor was saying is that if he were to prescribe a prophylactic antibiotic for PANDAS, he would go with either a penicillin or keflex. He said that PCN is always the first line of defense, but keflex has been more successful with resistant strains. He doesn't like zithro as a first line because there have been some strains resistant to zithro. On the other hand, he thinks that people (like myself) may be investing too much time and effort in diagnosing (like the scans, blood tests, etc) instead of just focusing on how to make the child comfortable with the current symptoms. - This based on his belief that there is currently no proven cure for PANDAS, so in his opinion - might as well just treat the symptoms. I agree with treating the symptoms, but I'm all about trying to turn things around in the long run and not being satisfied with just treating the symptoms for who-knows-how-long. As Dedee mentioned in her response, we have to keep trying and moving ahead because we can't sit back and accept this.

 

So far the other children have not picked on Gaby - Her twin Stefi is in the same class and will give me daily reports on the happenings in the classroom. She told me that the teacher explained to the kids that she is sick right now and sometimes it affects how she acts and that she can't help it or control it. Under the circumstances I think the kids have handled it pretty well, as far as not being mean to her and some of them actually still try to interact with her (difficult as it is). I think what may have happened is that when she had her outbursts and would cry and yell, the kids may have mentioned it at home and that's where the complaints are coming from.

[EAMom]

Dedee, Michele, and all,

Wow, as if you don't have enough to worry about. Now you are supposed to worry about EVERY child in the class room. I mean I understand that you do have to have some resemblance of order for children to learn. But really, can parents not be more supportive? They just don't realize that they could be only one illness away from your current situation. I wish people would just stop to think before being so judgemental. As far as the doctor, well, just because their isn't currently a commonly accepted cure doesn't mean we stop trying. If that were the case, we would still be in the dark ages when it comes to medicine. That is the only way we learn, we move forward, sometimes in an clumsy manner and by trial and error, but WE KEEP MOVING. If we don't, what hope is there? I just hate the "we don't know what works so let's do nothing" mentality. It takes the courageous parent, child and doctor to work toward a cure. Good for them!

 

Dedee

 

Well said Dedee! And lots of kids are doing better.

 

To answer Michele's questions: my PANDAS dd (currently 8.5 years old) is on Azith 250mg/day; prozac 10mg/ day (we tried to wean her off Lexapro due to serotonin syndrome in May, and her anorexia nervosa returned in full force, hence the low dose of prozac, tolerating it well); probiotic; multivit.; I also try to sneak in Omega 3's (flax seed meal in pancakes, muffins, smoothies; a bit of fish oil) when possible (started doing this 2-3 mo. ago). During June/July she also got Ibuprofen daily with the Azith and we think that helped a lot (anti-inflammatory).

 

Our dd was symptom free most of July, Aug, Sept after a horrendous spring (including hosp. for acute food refusal, malnutrition, lost 15% of her body weight in 2 weeks, down to 42 pounds). Oct/Nov/Dec she started to have mild PANDAS symptoms again (few tantrums, fine motor tremors). Her strep carrier sister cultured positive in Oct. and again in Dec. (each time treated with 5 day course of Azith) and PANDAS dd's symptoms seemed to correlate with that. Plus, their school is seeing a lot of strep this year.

 

We haven't noticed PANDAS dd reacting to other illnesses (PITAND) but she's been quite healthy so far this year so it's hard to tell.

 

Right now her mood is good, eating well (I think she's up to about 56 pounds). She does have handwriting issues (recently diagnosed with FINE MOTOR DELAY by OT) in school and has trouble with spelling (has always been a bad speller) and trouble memorizing math facts (addition, multiplication time tests). It's unclear to us how much of her learning issues are PANDAS related. We suspect PANDAS is contributing to at least the Fine Motor issues. She does have a (mild) visible tremor since Oct. which she didn't have previously. Otherwise she is doing well. She is social, plays with friends, loves to read (reads above grade level with great comprehension). She's going to start seeing an OT for her fine motor problem. We do wonder about doing a steroid burst at some point but her symptoms are pretty mild now so we don't know if it's the time. It would be interesting to see how the steroids influence her handwriting etc.

 

Re the prozac: our dd is tolerating it well, seems to help some pre-existing social anxiety, and we don't want to risk changing it at this point...don't want to mess with what is working. For those not already on an SSRI (or for those not tolerating an SSRI) I think something like Inositol (sp?) or 5 HPT would be worth trying. Just my opinion. SSRI's are good for some but need do need to be used with caution. Esp. with PANDAS kids, you have to be careful on the higher doses of the psych. meds (or when you are using mulitple meds).

 

Sorry if this got a bit long...I think one thing about PANDAS is that what works for one child doesn't necessarily work for the next. Azith. was the 4th ab we tried and the only one that really worked so we're sticking with that one. I believe both my dd's are "strep carriers" and their strep goes intracelllular which is why the Cephalosprorin (stronger version of Keflex), Augmentin, Amoxicillin didn't do it for us.

 

It does break my heart that Gaby isn't doing better post IVIG...I'm hoping it's just a matter of giving it more time.

[pmoreno]

EAMom, you said your daughter (despite some math memorization issues and handwriting delays) does well in reading and social interactions. I know that all these kids have different quirks and sometimes they change even with the same child - whether its tics, OCD or other odd behaviors. What I'm wondering is if any of the other kids out there have what Gaby has which is not being able to carry on a normal sentence. She will say things like "Boo", I'll ask "what was that for?" and she'll say "I have to put the make-up on". Or she says things like "Am I better than the dots?" "Did the dots say sorry?". Of course she picks a few phrases that she tends to repeat many times like "am I loveable?" or "am I cool?" or "am I a nerd?" "am I a boy?" and if I try to distract her to ask an actual question, she tries to skip over what I asked her with a quick "yeah" and then right back at the nonsensical questions. As a matter of fact, she spends most of the day asking things that don't make sense. I can get her to answer my real questions only after a lot of repeating and insisting that she answer me. Sometimes she will ask these questions with a smile on her face and sometimes she knits her brows and gets really upset even after you've answered her a hundred times with an answer that she might want to hear. Because of all this, she absolutely can't have any kind of a social interaction with any kids her age, because they either think she is a baby or that she has lost her mind. The only thing she can still do pretty well is draw - it's not as neat and she isn't as careful as she was before, but it still comes out very nice. Her reading and math are at least a year or two behind. Just wondering - anybody out there with the same situation?

[Worried_Dad]

Hi, Pat:

 

Not as severe for our son as for Gaby, but he's been "fuzzy" since he became ill. Trouble communicating, focusing, concentrating for any length of time. Since the sinus infection earlier this month triggered a worsening of symptoms, he sometimes just stops in the middle of a sentence - can't remember what he was talking about or finish what he was saying. He'll ask us to repeat things again and again when he's having a rough day.

 

Before he got sick, he was very verbal, reading adult fiction novels, and doing great in school. Now he can't do any useful amount of homework and usually stops after a problem or two. Stuff he used to breeze through is just beyond him at the moment.

 

We're praying it's temporary and will resolve with time as his brain injury heals. But it scares us... and I can tell it really scares him, too.

 

 

EAMom, you said your daughter (despite some math memorization issues and handwriting delays) does well in reading and social interactions. I know that all these kids have different quirks and sometimes they change even with the same child - whether its tics, OCD or other odd behaviors. What I'm wondering is if any of the other kids out there have what Gaby has which is not being able to carry on a normal sentence. She will say things like "Boo", I'll ask "what was that for?" and she'll say "I have to put the make-up on". Or she says things like "Am I better than the dots?" "Did the dots say sorry?". Of course she picks a few phrases that she tends to repeat many times like "am I loveable?" or "am I cool?" or "am I a nerd?" "am I a boy?" and if I try to distract her to ask an actual question, she tries to skip over what I asked her with a quick "yeah" and then right back at the nonsensical questions. As a matter of fact, she spends most of the day asking things that don't make sense. I can get her to answer my real questions only after a lot of repeating and insisting that she answer me. Sometimes she will ask these questions with a smile on her face and sometimes she knits her brows and gets really upset even after you've answered her a hundred times with an answer that she might want to hear. Because of all this, she absolutely can't have any kind of a social interaction with any kids her age, because they either think she is a baby or that she has lost her mind. The only thing she can still do pretty well is draw - it's not as neat and she isn't as careful as she was before, but it still comes out very nice. Her reading and math are at least a year or two behind. Just wondering - anybody out there with the same situation?

[ajcire]

I totally feel for you on the school situation although as a special ed teacher I can see the dilemna that the teacher is presented with. It's all so hard!

 

 

With the zithromax... my ds is on 250mg 2 times a week for 3 months.. He is on his second month. He started 5htp at the same time. He is a different kid but the last few days the throat clearing started and some of his tone in how he talks, his quick reactions came back.. not terribly though... I found out yesterday that 2 kids were out from his class with strep. Is it possible that my ds can get strep and then this dose not be enough to stop it but now it makes it worse? I don't even know if what I am asking makes sense. it's making sense in my head. It's hard because I have my regular ped who I can get in touch with easy.. but my other dr. who I saw only once and talked with on the phone a few times.

 

 

Someone mentioned the 5htp.. my mom keeps telling me she can't believe how mellow ds has gotten with things that used to set him off... I think it is the 5htp. She keep saying it's almost eerie how he responds calmer to things now. His sleep issue as disappeared although the 5htp does not make him drowsy at all as the dr said it might.

[anne]

EA Mom,

I wanted to ask you about your past reply--"prozac 10mg/ day (we tried to wean her off Lexapro due to serotonin syndrome in May". My son is non pandas, just motor tic disorder/OCD, he is almost outgrown it now as he is 19. Only issues with OCD left. He is on 10 mg Lexapro and works great for him anxiety wise and OCD wise. I wanted to try him on inositol as I have heard so many great things about it helping OCD. Everything I have read seems to say that taking Inositol with Lexapro should be safe. I am worried after reading a few things about serotonin syndrome. Did your child get that from just taking Lexapro? And what dosage was that? What symptoms did she show? It is all so scary reading about it, I want to try the Inositol but don't want to cause serotonin syndrome.

Thanks,

Anne

[EAMom]

Pat, Anne, Michelle, and all,

 

I do know there are concerns about Azith. resistance esp. in certain parts of the country...however, I don't think that is a good reason to never use it at all, esp if other abs have not worked.

 

I know Diana's son was on Azith. at various dosages over the past year. I believe that the 500 mg a week dose really didn't do much for him. He also had problems on 125mg/day if he was exposed to strep. (He was in the 2nd grade at the time and not a terribly big kid, pound-wise). So maybe a big thing with the Azith. sucess (whether it's b/c of the antibiotic effect or the immune modulation.) is finding a high enough dose. ??? Something that would be nice to have a study on I think. (I've also always wondered if the lower doses (500mg/week) are more likely to encourage resistance, vs higher doses?)

 

Dh did read something (he can't remember the details, so this may not be 100% right) about Azith. being being bacteriostatic at "normal" doses but bacteriacidal at high doses. So, maybe the higher doses are important (in at least some kids), esp. when the strep is intracellular or the child's immune system isn't doing it's part to eliminate the strep.

 

This is an interesting article: http://www.sciencedaily.com/releases/2004/...41021083250.htm about antibiotics (pro-cons of bacteriacidal vs. static, discusses steroids as well.) Interesting comments about the release of inflammatory cytokines.

 

Anne: Re: Lexapro: dd was started at 5mg daily in the hospital in March, got up to 10mg daily by May. The OCD (but eating was better) wasn't controlled and at higher doses and dd had akathesia (inner restlessness) wanting to be upside down a lot, dilated pupils, increased aggressiveness, disinhibitory behavior, etc...of course with PANDAS it becomes a little tricky to figure out what are the Pandas symptoms vs. the SSRI symptoms. The pupil dilation, aggressiveness, wanting to be upside down stopped with the discontinuation of lexapro.

 

If you do stop the lexapro be aware that withdrawal is not easy (headaches, nausea) and you need to decrease the dose *very* slowly.

 

Let me know if you find out anything about Inositol and ssri's together. I don't know much about combing the two.

[michele]

Thanks for your reply EaMom.

Here is my question now. My son is on the Abilify for the moods and the anxiety. Now we are adding the Adderall XR for the attention issues. Yesterday when he took the adderrall XR he seemed so wired. Is this common? He was talking too much and seemed really focused on certain ideas, like getting a new jersey. More like the old days before the Abilify. Has anyone here used the stimulants with the ADHD behaviors and PANDAS? I want him to catch on ieasier in school and be more organized and focused. However I don't want him bouncing off the walls. If these kids already have too much dopamine doesn't stimulants make them more hyper? Also I have read the tics can worsed from the stimulants. He seemed to crack his joints more yesterday also and said it felt funny in his toes. I gave it on the weekend so I could watch him closely on it. It is the smallest dose at 5 mg. Also she suggested we up the abilify to 10 mg a day 5 AM and 5 PM for the irritability.

 

Also EaMom, we have struggled with the fine motor delay issues and been doing OT for the past year. This is the area that affected him the most. His handwriting is not very good. Also visual perception is delayed. Another trouble for him is spelling and math as you said too. His reading is coming along well for him too. Just interesting that they both are having similar issues.

 

Michele

 

Pat, Anne, Michelle, and all,

 

I do know there are concerns about Azith. resistance esp. in certain parts of the country...however, I don't think that is a good reason to never use it at all, esp if other abs have not worked.

 

I know Diana's son was on Azith. at various dosages over the past year. I believe that the 500 mg a week dose really didn't do much for him. He also had problems on 125mg/day if he was exposed to strep. (He was in the 2nd grade at the time and not a terribly big kid, pound-wise). So maybe a big thing with the Azith. sucess (whether it's b/c of the antibiotic effect or the immune modulation.) is finding a high enough dose. ??? Something that would be nice to have a study on I think. (I've also always wondered if the lower doses (500mg/week) are more likely to encourage resistance, vs higher doses?)

 

Dh did read something (he can't remember the details, so this may not be 100% right) about Azith. being being bacteriostatic at "normal" doses but bacteriacidal at high doses. So, maybe the higher doses are important (in at least some kids), esp. when the strep is intracellular or the child's immune system isn't doing it's part to eliminate the strep.

 

This is an interesting article: http://www.sciencedaily.com/releases/2004/...41021083250.htm about antibiotics (pro-cons of bacteriacidal vs. static, discusses steroids as well.) Interesting comments about the release of inflammatory cytokines.

 

Anne: Re: Lexapro: dd was started at 5mg daily in the hospital in March, got up to 10mg daily by May. The OCD (but eating was better) wasn't controlled and at higher doses and dd had akathesia (inner restlessness) wanting to be upside down a lot, dilated pupils, increased aggressiveness, disinhibitory behavior, etc...of course with PANDAS it becomes a little tricky to figure out what are the Pandas symptoms vs. the SSRI symptoms. The pupil dilation, aggressiveness, wanting to be upside down stopped with the discontinuation of lexapro.

 

If you do stop the lexapro be aware that withdrawal is not easy (headaches, nausea) and you need to decrease the dose *very* slowly.

 

Let me know if you find out anything about Inositol and ssri's together. I don't know much about combing the two.