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I first posted in the 'new to this and overwhelmed' about my 9 year old daughter who presented with PANDAS symptoms about 6 weeks ago. At the time my DD did a 5 day course of zithro, but we didn't start seeing a lessening of symptoms until almost 4 weeks after onset.

 

She is now doing better, though not 100%. The last pediatrician we took her to (not a PANDAS expert, but had some experience) gave her a prescrition for low dose zithro that he said she can take 2 weeks out of the month if we want to. I asked about when she could go back to school, if she should be on antibiotics for a certain amount of time first, if we should ease her back, and the types of things we should consider. He gave us no direction, and did not give us a medical excuse for our state's mandated high stakes testing. He said it was up to us to decide, but I feel like I need some guidance.

 

Soon after I decided to get the whole family checked for strep. I had started feeling sick. So far, I tested positive and we're waiting for the results on the other 5 family members.

 

I also made an appointment for next week with an ENT with experience with PANDAS, but I don't believe he's a PANDAS expert, per se. We wanted to go to Dr B but he doesn't take our insurance.

 

The school nurse just called and is pressuring me to get her back into school. I know to the school it seems like it has been a very long time, but I feel like it is short in 'PANDAS time.' My gut feeling is that it is too soon. From the schools pov, getting back to school is the most important thing, but to me it is my DD's longterm health. My DD is very smart and I have no doubt she will catch up, if she even gets behind.

 

What have others done about school? Is it best for her to be on antibiotics for a certain amount of time. Is it a bad idea right now since we know she's recently been exposed to strep? Should her antibiotic dose be higher, and she be on it longer than 2 weeks out of the month? I'm so confused!

 

Any thoughts would be appreciated.

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I don't have any experience with zith on a prophylactic basis, but even though it has a long half-life, I would think that you wouldn't want to give it to your DD for 2 weeks out of the month and give her nothing the other 2 weeks. Hopefully someone else with zith experience will chime in here, but I would think you'd want to give it to her at least a couple of times each week. And if she's been off of it for a while, I would definitely give her a dose before sending her back into the school environment.

 

For us, the go-to-school/don't-go-to-school question had as much (if not more) to do with emotional readiness and behavior. If your DD isn't suffering from significant anxiety or behaviors that might be especially problematic in the school environment, I would probably send her back in . . . protected as best she can be via prophylactic abx, that is.

 

Good luck!

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Thank you, Nancy! I'm definitely concerned about her emotional and behavioral readiness as well. She still has tics (3 throat sounds and head rolling), she still spits frequently especially after eating, she is highly emotional, and she gets emotional and symptomatic after only a short amount of schoolwork. She is eating better, but not normally. We never know what she will be able to eat or when, and she tends to stick with a few different food items and only those for an extended period of time, then she is on to something else. It's in a very obsessive way. Eating tends to cause anxiety so she has an increase in throat clearing sounds and spitting. It's so hard for me to judge because she's so much better than she was at onset, if that makes sense.

 

I wouldn't be as nervous about exposure except that I know she's already been exposed to my recent strep infection, as well as 2 neighbors.

 

We were thinking maybe she could start back by just going in the mornings. That way she could eat at home. I also want to make sure the school knows what to look for in case she needs to come home.

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I have a 9 year old daughter as well! She she has finally been able to go back to school for partial days for the past 2 weeks. She has hypersensativity to, well, everything, since her PANDAS diagnosis. We tried shortened days but eventually had to do homebound - her teacher came to her 5 hours a week. It worked out great! Hugs to you!!

Feel free to PM!!

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Thank you, Nancy! I'm definitely concerned about her emotional and behavioral readiness as well. She still has tics (3 throat sounds and head rolling), she still spits frequently especially after eating, she is highly emotional, and she gets emotional and symptomatic after only a short amount of schoolwork. She is eating better, but not normally. We never know what she will be able to eat or when, and she tends to stick with a few different food items and only those for an extended period of time, then she is on to something else. It's in a very obsessive way. Eating tends to cause anxiety so she has an increase in throat clearing sounds and spitting. It's so hard for me to judge because she's so much better than she was at onset, if that makes sense.

 

I wouldn't be as nervous about exposure except that I know she's already been exposed to my recent strep infection, as well as 2 neighbors.

 

We were thinking maybe she could start back by just going in the mornings. That way she could eat at home. I also want to make sure the school knows what to look for in case she needs to come home.

 

Yes, maybe going with a half day is a good answer and workable compromise. Do you have a 504 Plan or an IEP already in place? If not, you may want to consider taking that up with the school; if so, you might want to talk with the administration and/or caseworker about making tweaks to the plan based on her current needs.

 

If she seems particularly "ramped up" (more anxious) about returning to school, you might even try just dropping her off for one class per day for a few days and slowly increase the number of classes/time she stays in the building. You could even start with her favorite class, that way. That's what we did with our DS, and it seemed to help ease him back into school a little less traumatically. For us (and maybe this is part of the nurse's concern, too), we had to balance DS's emotional lability and anxiety against him just becoming even more school-phobic the longer he stayed away. Avoidance tends to turn some things into bigger and bigger monsters. <_<

 

Hang in there; hopefully the school will work with you willingly to come to a resolution that helps your DD get back to a more "normal" life. But if you have to drag the school to the table by its metaphorical hair, there's plenty of backup for you to do that, too! :P

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Maybe try asking for a different antibiotic that can be given daily in the morning before school. I don't know about azyth. as a prophylactic because of its long half-life. My son is back at school and taking a daily keflex. I know nothing is guaranteed to prevent re-infection but I do feel better about him taking something daily until he hits puberty. I am also prepared to start full strength abx. the second I suspect a flare. Also I have been giving Motrin once daily before school.

We are all trying to figure this out.

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Thank you, sosudden! Hugs to you too.

 

She doesn't have an IEP or 504. I'm thinking she may need one or the other in the future but she only got sick 6 weeks ago and she hasn't even been formally diagnosed or had an extensive work up by a PANDAS expert.

 

She's on a prophylactic dose of antibiotics without ever having done the initial 3-6 weeks of antibiotics that I thought were recommended for new onset PANDAS. Should I be worried about that? I'm not even sure she was fully treated initially so I'm not certain she's well protected by the low dose prophylactic antibiotics.

 

There is a good chance we are moving to another state in a few months so I just want to make it through this school year. After that we can see where she is in the fall and go from there. My 13 year old (and now I suspect he has PANDAS too) is on an IEP so I know it can be a process to get it in place. I guess she would also need a firm diagnosis of PANDAS too?

 

Luckily, this is the only one of my kids who enjoys school and I trust her to let me know when she's ready. She feels like she can try going mornings soon. She really wants to go back and see her friends. Starting with a favorite class is a good idea, and then see how she does.

 

Thank you for all of your support and great suggestions!

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Thank you, Nancy! I'm definitely concerned about her emotional and behavioral readiness as well. She still has tics (3 throat sounds and head rolling), she still spits frequently especially after eating, she is highly emotional, and she gets emotional and symptomatic after only a short amount of schoolwork. She is eating better, but not normally. We never know what she will be able to eat or when, and she tends to stick with a few different food items and only those for an extended period of time, then she is on to something else. It's in a very obsessive way. Eating tends to cause anxiety so she has an increase in throat clearing sounds and spitting. It's so hard for me to judge because she's so much better than she was at onset, if that makes sense.

 

I wouldn't be as nervous about exposure except that I know she's already been exposed to my recent strep infection, as well as 2 neighbors.

 

We were thinking maybe she could start back by just going in the mornings. That way she could eat at home. I also want to make sure the school knows what to look for in case she needs to come home.

 

Yes, maybe going with a half day is a good answer and workable compromise. Do you have a 504 Plan or an IEP already in place? If not, you may want to consider taking that up with the school; if so, you might want to talk with the administration and/or caseworker about making tweaks to the plan based on her current needs.

 

If she seems particularly "ramped up" (more anxious) about returning to school, you might even try just dropping her off for one class per day for a few days and slowly increase the number of classes/time she stays in the building. You could even start with her favorite class, that way. That's what we did with our DS, and it seemed to help ease him back into school a little less traumatically. For us (and maybe this is part of the nurse's concern, too), we had to balance DS's emotional lability and anxiety against him just becoming even more school-phobic the longer he stayed away. Avoidance tends to turn some things into bigger and bigger monsters. <_<

 

Hang in there; hopefully the school will work with you willingly to come to a resolution that helps your DD get back to a more "normal" life. But if you have to drag the school to the table by its metaphorical hair, there's plenty of backup for you to do that, too! :P

 

I have a 9yo son. He thankfully likes to go to school (even when he should not be there). He has an IEP and we have met with all people involved with him and they know what signs to look for and when to call me to take him home. I figured (and the school nurse concurred) that even if we can get him there in the morning, it is better than not at all. He is on augmentin 2x a day and was recently on Clindamycin (3x per day and developed strep). Maybe try for amoxicillan or augmentin, but unfortunately, you will still have to be on the look out. My son's symptoms are also set off after he goes outside for recess due to his allergies.

 

I also have a 4yo Pandas child who does not like school and at times I have to take him kicking and screaming to school (this is exhausting), but he is okay once he is there. I have heard if I keep him home that it may be a slippery slope if I keep him home for a day.....

 

PM if you want to. We have seen a number of doctors in the tri-state area. Maybe just one appt with one Dr who is PANDAS literate could set up a game plan for you to follow with a doctor of your choice. Good luck :)

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I guess she would also need a firm diagnosis of PANDAS too?

 

 

Not necessarily. In our case, PANDAS is not something the school was familiar with, so their frame of reference for PANDAS, even with an official diagnosis (via Dr. K.), wasn't great. What the school was most concerned with was the behavior set that they would need to accommodate in the academic setting; in our case, that was the anxiety and the "flight" the anxiety provokes. Plus, our DS's primary behavior set is OCD, so his IEP is predicated upon that.

 

We do, however, get strep notifications, to the extent they're available, directly from the school nurse. That's really the only PANDAS-specific accommodation.

 

It's good that your DD wants to go back to school and is ready to try a shortened day. I'd take her up on it!

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I first posted in the 'new to this and overwhelmed' about my 9 year old daughter who presented with PANDAS symptoms about 6 weeks ago. At the time my DD did a 5 day course of zithro, but we didn't start seeing a lessening of symptoms until almost 4 weeks after onset.

 

She is now doing better, though not 100%. The last pediatrician we took her to (not a PANDAS expert, but had some experience) gave her a prescrition for low dose zithro that he said she can take 2 weeks out of the month if we want to. I asked about when she could go back to school, if she should be on antibiotics for a certain amount of time first, if we should ease her back, and the types of things we should consider. He gave us no direction, and did not give us a medical excuse for our state's mandated high stakes testing. He said it was up to us to decide, but I feel like I need some guidance.

 

Soon after I decided to get the whole family checked for strep. I had started feeling sick. So far, I tested positive and we're waiting for the results on the other 5 family members.

 

I also made an appointment for next week with an ENT with experience with PANDAS, but I don't believe he's a PANDAS expert, per se. We wanted to go to Dr B but he doesn't take our insurance.

 

The school nurse just called and is pressuring me to get her back into school. I know to the school it seems like it has been a very long time, but I feel like it is short in 'PANDAS time.' My gut feeling is that it is too soon. From the schools pov, getting back to school is the most important thing, but to me it is my DD's longterm health. My DD is very smart and I have no doubt she will catch up, if she even gets behind.

 

What have others done about school? Is it best for her to be on antibiotics for a certain amount of time. Is it a bad idea right now since we know she's recently been exposed to strep? Should her antibiotic dose be higher, and she be on it longer than 2 weeks out of the month? I'm so confused!

 

Any thoughts would be appreciated.

 

We do Azith DAILY (250mg/day --90 pounds, but we have a rx to increase to 500mg/day if needed, if PANDAS were full-blown, we would do the 500mg dose)....2 weeks out of the month doesn't make any sense to me. We started at the 250mg/day dose when dd was 43 pounds (2008).

 

 

I'm glad you are chekcing family memebers!

 

re Dr. B. not taking insurance...I THINK your can still file a claim with your insurance (even if he doesn't take it). You might still get reimbursed (but not as much as if he did take it). Maybe someone can explain it better. Even with the LLMD who "don't take insurance" you can still file a claim and get some $ back...if I understand things right (of course it partly depends on your insurance, and if you have a PPO).

Edited by EAMom
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Thank you all for your support! Since I posted last there have been some updates. My 13 year old DS tested positive for strep. I am now even more suspicious that he has had PANDAS for quite a while. I'd like to have further tests run but I don't think his pediatrician would be supportive.

 

Also, my DD's new pediatrician, who was on vacation when we first switched to her 3 1/2 weeks ago, just got back to me. She wants to see my DD tomorrow and wants to run some more labs. She sounds very skeptical that it is PANDAS at all. She said that she would have more OCD symptoms, and basically, she wants a dx by a psychiatrist that she has OCD. I think she's also skeptical that her 3 throat clearing sounds and head rolling are tics.

 

My DD is allergic to amoxicilin so she can't take that or augmentin. EAMom, I agree, the current script for Zithro doesn't make sense. Her regular pediatrician had her on 5 days of 250mg of zithro for 5 days (she was 46lbs at the time) for her initial strep at the time symptoms first started. Now she's on about 150mg of zithro daily for 2 weeks out of every month with no provision to increase during recent exposure or exacerbation. So, to me, am not even sure she was initially fully treated, and there are 2 family members in the house with strep.

 

I am hopeful that we will eventually get to Dr B. We are low income and my daughter has a MA medicaid health plan. We can't afford to pay out of pocket and get reimbursed, and medicaid is usually very bad at reimbursing. We are currently in MA but we are planning/hoping to move to NY. We are hoping we can switch to a plan that Dr B can take, or get to another good PANDAS doctor. Mom24, I will PM you for suggestions and to hear your experiences.

 

Thanks again to all!

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Thank you all for your support! Since I posted last there have been some updates. My 13 year old DS tested positive for strep. I am now even more suspicious that he has had PANDAS for quite a while. I'd like to have further tests run but I don't think his pediatrician would be supportive.

 

Also, my DD's new pediatrician, who was on vacation when we first switched to her 3 1/2 weeks ago, just got back to me. She wants to see my DD tomorrow and wants to run some more labs. She sounds very skeptical that it is PANDAS at all. She said that she would have more OCD symptoms, and basically, she wants a dx by a psychiatrist that she has OCD. I think she's also skeptical that her 3 throat clearing sounds and head rolling are tics.

 

My DD is allergic to amoxicilin so she can't take that or augmentin. EAMom, I agree, the current script for Zithro doesn't make sense. Her regular pediatrician had her on 5 days of 250mg of zithro for 5 days (she was 46lbs at the time) for her initial strep at the time symptoms first started. Now she's on about 150mg of zithro daily for 2 weeks out of every month with no provision to increase during recent exposure or exacerbation. So, to me, am not even sure she was initially fully treated, and there are 2 family members in the house with strep.

 

I am hopeful that we will eventually get to Dr B. We are low income and my daughter has a MA medicaid health plan. We can't afford to pay out of pocket and get reimbursed, and medicaid is usually very bad at reimbursing. We are currently in MA but we are planning/hoping to move to NY. We are hoping we can switch to a plan that Dr B can take, or get to another good PANDAS doctor. Mom24, I will PM you for suggestions and to hear your experiences.

 

Thanks again to all!

 

 

Ask your doctor to test for MycoP, Lyme, and childhood viruses (e.g.: parvo, EBV, HHV6, and others.) I know she thinks she knows what PANDAS is (that's why she told you that your child isn't sick enough.), but....if she's saying that, she really doesn't understand it. Every child has different reactions, but the commonality is that symptoms are neuropsychiatric. At least get the strep, and other infections I listed above checked for (IgM and IgG, because the IgG indicates there may be long term re-occurance, particularly if you measure it over time, and the numbers rise at any point.) Maybe your pediatrician would consider talking with Dr. Swedo at the NIMH?

 

Oh, I guess I'm just not thinking. What about calling the NIMH yourself, and see if your DD qualifies for their IVIG study? She's within the age range at any rate. If you qualify, they pay for everything, including testing, treatment, and travel!

 

Their contact info is: http://clinicaltrials.gov/ct2/show/NCT01281969 I would call immediately. Good luck.

Edited by tpotter
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Thank you all for your support! Since I posted last there have been some updates. My 13 year old DS tested positive for strep. I am now even more suspicious that he has had PANDAS for quite a while. I'd like to have further tests run but I don't think his pediatrician would be supportive.

 

Also, my DD's new pediatrician, who was on vacation when we first switched to her 3 1/2 weeks ago, just got back to me. She wants to see my DD tomorrow and wants to run some more labs. She sounds very skeptical that it is PANDAS at all. She said that she would have more OCD symptoms, and basically, she wants a dx by a psychiatrist that she has OCD. I think she's also skeptical that her 3 throat clearing sounds and head rolling are tics.

 

My DD is allergic to amoxicilin so she can't take that or augmentin. EAMom, I agree, the current script for Zithro doesn't make sense. Her regular pediatrician had her on 5 days of 250mg of zithro for 5 days (she was 46lbs at the time) for her initial strep at the time symptoms first started. Now she's on about 150mg of zithro daily for 2 weeks out of every month with no provision to increase during recent exposure or exacerbation. So, to me, am not even sure she was initially fully treated, and there are 2 family members in the house with strep.

 

I am hopeful that we will eventually get to Dr B. We are low income and my daughter has a MA medicaid health plan. We can't afford to pay out of pocket and get reimbursed, and medicaid is usually very bad at reimbursing. We are currently in MA but we are planning/hoping to move to NY. We are hoping we can switch to a plan that Dr B can take, or get to another good PANDAS doctor. Mom24, I will PM you for suggestions and to hear your experiences.

 

Thanks again to all!

 

 

Ask your doctor to test for MycoP, Lyme, and childhood viruses (e.g.: parvo, EBV, HHV6, and others.) I know she thinks she knows what PANDAS is (that's why she told you that your child isn't sick enough.), but....if she's saying that, she really doesn't understand it. Every child has different reactions, but the commonality is that symptoms are neuropsychiatric. At least get the strep, and other infections I listed above checked for (IgM and IgG, because the IgG indicates there may be long term re-occurance, particularly if you measure it over time, and the numbers rise at any point.) Maybe your pediatrician would consider talking with Dr. Swedo at the NIMH?

 

Oh, I guess I'm just not thinking. What about calling the NIMH yourself, and see if your DD qualifies for their IVIG study? She's within the age range at any rate. If you qualify, they pay for everything, including testing, treatment, and travel!

 

Their contact info is: http://clinicaltrials.gov/ct2/show/NCT01281969 I would call immediately. Good luck.

 

I agree with Tpotter about applying for the study!

 

This is a good handout to read/share with your new ped. http://www.ocfoundation.org/PANDAS/

 

Also, isn't Dr. Geller doing a study with Dr. Murphy (antibiotic)? Are they taking kids from MA?

Edited by EAMom
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my daughter has pandas and does not have any ocd. she tics like crazy and has all the rages/emotional meltdows when she is in a flare. when we have the right dose of antibiotics they go away in the blink of an eye. but you have to find the right dose. recently my daughter had all symtoms while on daily augmentin, it wasn't until we really upped the dosage that she cleared. just because your child does not have ocd or just because symtoms have not remitted while on antibiotics does not clear them from a pandas diagnosis. i have yet to meet a pediatrician who isn't highly skeptical of pandas. i know some exist but all the ones i know think its extremely rare and should disappear if on 100 mg of amoxicillian.

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