2nd case of strep since our diagnosis

[MMWG]

hi all-

I was here several months ago (January) when we first got our PANDAS diagnosis. We went on 5 days of Azithromycin, tics increased, and finally went on 14 days of cephalexin. It took several weeks after we were done with the antibiotics, but we did see such an improvement in behavior, emotions, and even a big increase in willingness and ability to do fine motor activities (he is just 4, so his fine motor development has been a big struggle--now we know why). We had several great months of amazingly improved behaviors, people we barely knew and family we hadn't seen in months were really blown away. Unfortunately, about 3 weeks ago we had a huge tantrum at t-ball, and my husband and i knew it was time for a strep test. the test came back positive. i am very glad we caught the strep much earlier this time (we have no idea how long he was suffering before we learned of his diagnosis in December)--the behavior wasn't nearly as extreme as it had been before our diagnosis, and i was glad we knew the signs well enough this time to catch it.

My question is for all of you who have been at this longer than we have. I went on a field trip with our preschool this morning, and realized once again how behind he is in terms of his maturity, attention span, behavior--he is still defiant, can't sit still, and has challenges with impulse control. I know a lot of his development with these things was affected during the months/years he was dealing with PANDAS and none of us knew--he is just 4, but I suspect he has been struggling this since at least 3. His teacher is wonderful and has been very patient helping him learn and improve on his social/emotional/behavioral issues. We have another year of preschool before we are going to start kindergarten, and I am thankful for that extra time. But I just feel so bad that he struggles so much with these things that come so easily for other children.

much of what he struggles with now seems like adhd-like symptoms. However, when i spoke with a child psychologist, she said his early years did not really fit the pattern for adhd, and given what i told her about pandas, she said it seems likely it may be at the root of his behaviors. that said, will he improve over time, assuming we can stay on top of his strep and treat him promptly? we are not pursuing IVIG at this time after lengthy discussions with our pediatrician. given his improvement the last time after antibiotics, we are hopeful he will bounce back again. however, i foresee a nightmare with school in the future---could this be from the PANDAS--for having it for a length of time without us knowing? Will his little brain heal and let him learn how to listen, cooperate, and pay attention? what should we do?? Thanks for your help. He's such a smart little boy, and I am afraid no one will notice because his behavior is such an issue. Of course, it is miles better than it was 6 months ago before we knew what was going on, but compared to the rest of the class, we still have a long way to do. Thanks everyone. Meg

[dcmom]

Hi there- I am so sorry about the strep again, it is rampant from age 5 to 10. Have you considered prophylactic antibiotics, if only during the worst months in school. He has a lot of years and strep exposure to go.

 

I don't know if this will ease your mind or not- but- with my dd I also worried about her behavior and academic issues, but we did find, when she was "healthy" ALL of her issues resolved. It takes treatment, and then it takes time to heal- but EVERYTHING improved. So I would think your son still needs time to heal.

 

I would HIGHLY recommend working with a pandas doctor.

[thereishope]

That's such an awful feeling. When they have that "moment" and you just know the strep is back. Do you think your son was at an appropriate maturity level when PANDAS originally struck?

 

You really can see a lot change over summer break. My son had PANDAS surface in preschool. Very bad school year with a lot of stares from other parents. Then as summer break came, he continued to recover and by the time kindergarten came, he did unexpectingly great. The teacher praises him, says he is the best behaved,and he has learned and retained so much this year that I am awe struck.

 

It's hard to tackle issues while they are in the beginning of another exacerbation.Try to find patience and right now work on recovery from that.

[MMWG]

Thanks so much for all of your supportive replies. I just can't say enough how much it means to me to have the support of people who understand what we are going through. We talked about preventive antibiotics but since he is allergic to penicillin, and doesn't seem to respond well to azithormycin, his pediatrician is very wary about putting him on long term antibiotics so young. We contacted Dr. K about making a visit up there, but so far I am pretty happy with our pediatrician and how much he knows about PANDAS and a variety of treatments.

 

I realized that although I characterize this "episode" as less severe than the initial one, we really have had an increase of behavioral issues. More defiance, more hyperactivity, complete unwillingness to do any fine motor work. It isn't at the level it was in the fall, when we were clueless about all of this--then we had screaming crying temper tantrums, fight or flight response, biting, the works. Now we don't have any of that, so I am trying to remember how far we have come. He also developed a tic during the last episode that lasted quite awhile, and we didn't see that this time, hopefully because we caught it earlier.

 

In terms of his "maturity" level before this all hit , I honestly can't say because he was probably 2-3. He is a spitfire by nature, so separating the terrible twos from this thing is almost impossible for me.

 

we are heading back to the doctor for another strep test this week now that we are done with the antibiotics. i want to talk to his doctor about anything else we could be doing, and preventative steps to ward off the dreaded strep. I am looking forward to summer--no preschool, less germs. But so many years to go. It is so hard to see him struggle with his behavior and emotions, and I look ahead to all the years of school and can only hope things will get better. We had three months of much improved behavior, and now it is like two steps forward, one back. Sigh.

 

 

Thanks again for the support. We need it! Meg

[MMWG]

Hi Vicki-

Ah yes- the preschool stares! We know those well. I have had a number of parents come up to me and say they have noticed a big change in my son's behavior from when we first started (in the middle of our diagnosis--hellish) and then his behavior once we had completed treatment and had some time to heal. His teachers know all about his condition, and I have told a few of the mothers who are friendly, just so that people are informed and might better understand what he has been through. I don't want to excuse bad behavior, but the poor kid has been through the ringer, and the last thing we need is people judging him (or us!). We are doing one more year of pre-k, then off to kindergarten. I really appreciate your perspective. It's hard to say whether he was at an appropriate maturity level when PANDAS first struck--we think he may have had it since at least 3, maybe even before then. Terrible twos and PANDAS can seem a lot alike. He had started writing letters, etc--then suddenly stopped. He had his adenoids out last winter, and ended up in the hospital for 4 days on IV antibiotics for an infection that they think was due to an underlying bacterial infection. We had no clue at the time what that could have been--but of course now we know! So who knows how long the little guy has been going through this. I am glad we know what it is now, but to get hit again so fast is frustrating.

 

Thanks again--Meg

 

That's such an awful feeling. When they have that "moment" and you just know the strep is back. Do you think your son was at an appropriate maturity level when PANDAS originally struck?

 

You really can see a lot change over summer break. My son had PANDAS surface in preschool. Very bad school year with a lot of stares from other parents. Then as summer break came, he continued to recover and by the time kindergarten came, he did unexpectingly great. The teacher praises him, says he is the best behaved,and he has learned and retained so much this year that I am awe struck.

 

It's hard to tackle issues while they are in the beginning of another exacerbation.Try to find patience and right now work on recovery from that.

[thereishope]

Is he still on antibiotics? If he's on antibiotics, remind your doctor that he runs the chance of a false negative strep test. That is the case until 3 weeks after finishing all meds. Can he take Ibuprofen? That eases PANDAS symptoms for some kids.

 

 

Thanks so much for all of your supportive replies. I just can't say enough how much it means to me to have the support of people who understand what we are going through. We talked about preventive antibiotics but since he is allergic to penicillin, and doesn't seem to respond well to azithormycin, his pediatrician is very wary about putting him on long term antibiotics so young. We contacted Dr. K about making a visit up there, but so far I am pretty happy with our pediatrician and how much he knows about PANDAS and a variety of treatments.

 

I realized that although I characterize this "episode" as less severe than the initial one, we really have had an increase of behavioral issues. More defiance, more hyperactivity, complete unwillingness to do any fine motor work. It isn't at the level it was in the fall, when we were clueless about all of this--then we had screaming crying temper tantrums, fight or flight response, biting, the works. Now we don't have any of that, so I am trying to remember how far we have come. He also developed a tic during the last episode that lasted quite awhile, and we didn't see that this time, hopefully because we caught it earlier.

 

In terms of his "maturity" level before this all hit , I honestly can't say because he was probably 2-3. He is a spitfire by nature, so separating the terrible twos from this thing is almost impossible for me.

 

we are heading back to the doctor for another strep test this week now that we are done with the antibiotics. i want to talk to his doctor about anything else we could be doing, and preventative steps to ward off the dreaded strep. I am looking forward to summer--no preschool, less germs. But so many years to go. It is so hard to see him struggle with his behavior and emotions, and I look ahead to all the years of school and can only hope things will get better. We had three months of much improved behavior, and now it is like two steps forward, one back. Sigh.

 

 

Thanks again for the support. We need it! Meg