Working with School & Dr. Latimer

[NMom]

My son was diagnosed with PANDAS about a month ago. We actually started treatment before that (thanks to an open-minded pediatrician) and he is responding very well to antibiotics. We saw Dr. Latimer in July to confirm the diagnosis and she changed his antibiotics from high-dose augmentin to lower dose (for long-term) zithromax. We actually just started the zithro today so am not sure if he'll be able to sustain on it. School is starting in two weeks and I'm terrified about what's going to happen the first time he's exposed to infection. I want to talk to the school prior and am trying to set up meetings but I'm not actually even sure what to tell them or ask for. I believe that I cannot ask for 504 status unless he needs to be accomodated right now. For those of you that have worked with your schools successfully...did you bring letters from the doctor or others? How did you describe PANDAS and get the school admin to work with you?

 

On a separate (but related) note...I have had such issues getting Dr. Latimer's office to work with us post-visit. We traveled to see her in July and loved her personally but have been unable to get her office to send anything to my pediatrican (and I call almost daily!). The suggestion has been that we just call Dr. Latimer if we see symptoms arise and she will prescribe...meaning we don't really need a local pediatrician. But I don't know what happens when he has other issues that require him to be seen in person. For those of you that see Dr. Latimer...how do you work with her and do you have local pediatrician that is onboard with the PANDAS diagnosis?

[tln21572]

Hi, I've never posted to this forum before but I saw your post and wanted to relate my experience with schools. I would definitely call a meeting with anyone who will interact with your child at school prior to school starting. This includes his teacher, resource teachers, sp. ed. teachers, principal, vice principal, nurse, and most definitely the school psychologist. Make sure the psychologist is there as she was our biggest advocate at the school. She didn't know anything about PANDAS at the first meeting but by the follow-up meeting, she had done the research on PANDAS and was very helpful in getting the administration on board (our school principal was difficult to deal with until the psychologist confirmed my son's diagnosis and agreed that the accomodations I was asking for were necessary). We did proceed with having the school test my son for any learning disabilities; however, he did not qualify for any special accomodations by law. By calling this meeting and informing everyone about PANDAS, we were able to make accomodations for my son without a 504. I made it clear to everyone, especially his teacher, that we needed to be informed if there was any case of strep infection in the classroom as soon as possible. At this particular time he was on long-term antibiotics but dosages were changed when symptoms appeared and we knew he had been exposed. I did not bring letters from his pediatrician as the school didn't require them; however, if they had required them, I could have provided that information to them. I think by informing them prior to school starting and giving them the time to research PANDAS was the key to my son having a successful year after being diagnosed with PANDAS. My son was diagnosed five years ago and there wasn't that much information available regarding PANDAS then; however, there is a world of information you can provide them to research so that they can be better informed. Definitely get the school psychologist involved and really get to know his teacher. These two things made the difference for us. My son made it through the year and was promoted to the 5th grade. I hope this helps and your son has a great year at school!!

[NMom]

Hi, I've never posted to this forum before but I saw your post and wanted to relate my experience with schools. I would definitely call a meeting with anyone who will interact with your child at school prior to school starting. This includes his teacher, resource teachers, sp. ed. teachers, principal, vice principal, nurse, and most definitely the school psychologist. Make sure the psychologist is there as she was our biggest advocate at the school. She didn't know anything about PANDAS at the first meeting but by the follow-up meeting, she had done the research on PANDAS and was very helpful in getting the administration on board (our school principal was difficult to deal with until the psychologist confirmed my son's diagnosis and agreed that the accomodations I was asking for were necessary). We did proceed with having the school test my son for any learning disabilities; however, he did not qualify for any special accomodations by law. By calling this meeting and informing everyone about PANDAS, we were able to make accomodations for my son without a 504. I made it clear to everyone, especially his teacher, that we needed to be informed if there was any case of strep infection in the classroom as soon as possible. At this particular time he was on long-term antibiotics but dosages were changed when symptoms appeared and we knew he had been exposed. I did not bring letters from his pediatrician as the school didn't require them; however, if they had required them, I could have provided that information to them. I think by informing them prior to school starting and giving them the time to research PANDAS was the key to my son having a successful year after being diagnosed with PANDAS. My son was diagnosed five years ago and there wasn't that much information available regarding PANDAS then; however, there is a world of information you can provide them to research so that they can be better informed. Definitely get the school psychologist involved and really get to know his teacher. These two things made the difference for us. My son made it through the year and was promoted to the 5th grade. I hope this helps and your son has a great year at school!!

 

Thank you - this does really help! I'm trying to engage those people right now but not getting a lot of response. I'm sure people are enjoying their last week of summer vacation. Just out of curiosity...how has your son done with infections while no long-term antibiotics? I'm terrified of school right now. When he is exposed do you see an explosion of symptoms again or just minor warning signs? When that happens you mentioned you change dosages...do you go back to high-dose antibiotics for 10 days or longer? Have you ever done IVIG, PEX or other treatments like steriods or have antibiotics been sufficient? Sorry for all the questions! I'm just a little concerned about the near future and how to manage whatever comes our way!!

Edited August 10, 2010 by NMom

[airial95]

Our situation is slightly different, since my son is not quite 3, but we are currently going through the process to get his assessments done through the school district which will allow us to create an IEP or 504 now, and already have it in place for Pre-K. We've had a couple of meetings already with the Child Find coordinators and have had to address the same issues that you are now.

 

Of course, no one in the room had ever heard of PANDAS, but since our first meeting was a few days after the Mystery Diagnosis episode aired, I asked if anyone saw it. Two of the folks did, and immediately caught on when I told them THAT is what my son has.

 

Right now we're taking the approach that the only accomodation we need in place for PANDAS specifically is notification of infection in the classroom. However, we're focusing the rest of his accomodations on the symptoms - ADHD, ODD, and OCD being his worst (he only has one tic and it wouldn't be a disruption). We all agreed at the last meeting that it shouldn't matter what causes these things - whether it's the disorder itself or just the symptoms of PANDAS, the accomodations for those conditions should still be in place. So we're looking at it more as an IEP for OCD, ADHD and ODD, with one additional caveat of notification of infection. We've not had to provide documentation from the doctors as of yet, but we may have to for that provision.

 

My son is in full time daycare, and on long term low dose antibiotics for over 7 months now. He gets exposed (what seems like CONSTANTLY!!) but he's only gotten 1 strep infection since we started treatment. With each exposure, we see an immediate ramp up in all symptoms (usually the violence and aggression return quickly - if he starts biting and attacking kids - we know he's been exposed). Fortunatley for us, these symptoms only last about 3-4 days. The bad part, he reacts before anyone even knows there's strep in the classroom - the parent of the sick kid usually notifies the school about day 3 of our flare up. He truly is the canary in the coal mine. The teachers have become so familiar with the pattern, that at the first sign of my son biting, they start keeping their eyes open for kids who might look a bit under the weather. With each exposure, we get him tested, but since our increase in symptoms is so short we normally don't mess with his meds. The single infection he actually caught, our ped gave an abx injection and switched to a stronger abx at a higher dose for 10 days - then back to the low dose of azith. We had about a 3-4 week period after the iactual infection where his symptoms slowly came back down to where we were before the infection (about 70-80% back to normal - we still struggle with residual OCD).

 

I know since my son is younger and not actually in school yet, our situation is different, but I thought it might help too.

 

Good luck!

[NMom]

Our situation is slightly different, since my son is not quite 3, but we are currently going through the process to get his assessments done through the school district which will allow us to create an IEP or 504 now, and already have it in place for Pre-K. We've had a couple of meetings already with the Child Find coordinators and have had to address the same issues that you are now.

 

Of course, no one in the room had ever heard of PANDAS, but since our first meeting was a few days after the Mystery Diagnosis episode aired, I asked if anyone saw it. Two of the folks did, and immediately caught on when I told them THAT is what my son has.

 

Right now we're taking the approach that the only accomodation we need in place for PANDAS specifically is notification of infection in the classroom. However, we're focusing the rest of his accomodations on the symptoms - ADHD, ODD, and OCD being his worst (he only has one tic and it wouldn't be a disruption). We all agreed at the last meeting that it shouldn't matter what causes these things - whether it's the disorder itself or just the symptoms of PANDAS, the accomodations for those conditions should still be in place. So we're looking at it more as an IEP for OCD, ADHD and ODD, with one additional caveat of notification of infection. We've not had to provide documentation from the doctors as of yet, but we may have to for that provision.

 

My son is in full time daycare, and on long term low dose antibiotics for over 7 months now. He gets exposed (what seems like CONSTANTLY!!) but he's only gotten 1 strep infection since we started treatment. With each exposure, we see an immediate ramp up in all symptoms (usually the violence and aggression return quickly - if he starts biting and attacking kids - we know he's been exposed). Fortunatley for us, these symptoms only last about 3-4 days. The bad part, he reacts before anyone even knows there's strep in the classroom - the parent of the sick kid usually notifies the school about day 3 of our flare up. He truly is the canary in the coal mine. The teachers have become so familiar with the pattern, that at the first sign of my son biting, they start keeping their eyes open for kids who might look a bit under the weather. With each exposure, we get him tested, but since our increase in symptoms is so short we normally don't mess with his meds. The single infection he actually caught, our ped gave an abx injection and switched to a stronger abx at a higher dose for 10 days - then back to the low dose of azith. We had about a 3-4 week period after the iactual infection where his symptoms slowly came back down to where we were before the infection (about 70-80% back to normal - we still struggle with residual OCD).

 

I know since my son is younger and not actually in school yet, our situation is different, but I thought it might help too.

 

Good luck!

 

 

Thank you! It does help. I'm just so anxious about what it will be like when he starts being exposed to strep and other infections. Trying to remind myself to take it one day at a time! Thank you for your story though - will help me talk to the school this next week.

[tln21572]

Hi, I've never posted to this forum before but I saw your post and wanted to relate my experience with schools. I would definitely call a meeting with anyone who will interact with your child at school prior to school starting. This includes his teacher, resource teachers, sp. ed. teachers, principal, vice principal, nurse, and most definitely the school psychologist. Make sure the psychologist is there as she was our biggest advocate at the school. She didn't know anything about PANDAS at the first meeting but by the follow-up meeting, she had done the research on PANDAS and was very helpful in getting the administration on board (our school principal was difficult to deal with until the psychologist confirmed my son's diagnosis and agreed that the accomodations I was asking for were necessary). We did proceed with having the school test my son for any learning disabilities; however, he did not qualify for any special accomodations by law. By calling this meeting and informing everyone about PANDAS, we were able to make accomodations for my son without a 504. I made it clear to everyone, especially his teacher, that we needed to be informed if there was any case of strep infection in the classroom as soon as possible. At this particular time he was on long-term antibiotics but dosages were changed when symptoms appeared and we knew he had been exposed. I did not bring letters from his pediatrician as the school didn't require them; however, if they had required them, I could have provided that information to them. I think by informing them prior to school starting and giving them the time to research PANDAS was the key to my son having a successful year after being diagnosed with PANDAS. My son was diagnosed five years ago and there wasn't that much information available regarding PANDAS then; however, there is a world of information you can provide them to research so that they can be better informed. Definitely get the school psychologist involved and really get to know his teacher. These two things made the difference for us. My son made it through the year and was promoted to the 5th grade. I hope this helps and your son has a great year at school!!

 

Thank you - this does really help! I'm trying to engage those people right now but not getting a lot of response. I'm sure people are enjoying their last week of summer vacation. Just out of curiosity...how has your son done with infections while no long-term antibiotics? I'm terrified of school right now. When he is exposed do you see an explosion of symptoms again or just minor warning signs? When that happens you mentioned you change dosages...do you go back to high-dose antibiotics for 10 days or longer? Have you ever done IVIG, PEX or other treatments like steriods or have antibiotics been sufficient? Sorry for all the questions! I'm just a little concerned about the near future and how to manage whatever comes our way!!

 

We have been blessed, after long-term antibiotics we haven't had any major issues. When he was exposed we didn't see an "explosion" of symptoms just subtle ones, mainly the tic would become more pronounced. We would do a high dose for about 30 days just to be on the safe side (our pediatrician was agreeable to treatment with antibiotics--thank goodness). We have not done IVIG, PEX or steroids, so far antibiotics have been sufficient. My pediatrician is looking into the other treatments for me to see if we think they might benefit my son and we have an appointment with Dr. Latimer in September. I just don't want to "rock the boat" since we seem to be doing okay right now. But like you, concerned about the future and want to be prepared to handle whatever comes our way. My dilema now is at times I'm not sure if he is having PANDAS symptoms or just a symptom of becoming a teenager (he's 15--DRAMA). So far it appears to be just a teenager thing.

 

I remember feeling terrified of the schools too, but remember you are your son's biggest advocate. I think communication, and lots of it, is the key to being successful in school. Let them know you are only trying to get everyone as knowledgeable as possible with your son's illness to make things easier for them and your son.

 

I hope this helps. Good Luck!

[EAMom]

If you are unable to get in touch with Dr. Latimer and your son is relapsing on the new protocal, I would not hesitate to contact your local ped and to get more Augmentin. I would think (hope) your ped would be happy to refill your Augmentin, esp. if you explain that Dr. L (or her office) has not been getting back to you.

 

Re antibiotics... everyone is different. Some kids do better on Augmentin, some on Azith. Some need to stay on the full-strength of whatever antibiotic they are on.

 

PS. I do find it interesting that Dr. Latimer is now using more Azith. than she used to!