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I need some answers about my PANDAS son


bnnbs

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My middle son, with no OCD at all and healthy, woke up October 1, 2009, and was having ocd symptoms. He was "touching" everything in funny ways until it "felt right" or not touching some things at all. He was my baker and took 4 Wilton cake classes, and now he will not step into the kitchen. Long story short, after two general doctors, and one Nero. doc., we ended up at Dr. Latimer's office, after finding her name on this forum.

 

She did diagnose him with PANDAS. January 12, she put him on 2000 mg of Augmentum a day. At this time he also had what she called impetigo rash around his mouth. We had an appointment on February 4th. He was doing better. As he put it 35% better. She dropped him down to 1000 mg a day of Augmentum, and gave him a three week treatment of Predisone. Just this past week - we brought our oldest son and youngest son to the family doctor - they both tested positive for strep. The family doctor would not test PANDAS son becasue he was already on medicine.

 

Since February 13 PANDAS son has been having a rough patch. Where he was getting happier, and seemed to be on an up swing, he is now sad again. He has now told me he has started counting letters in words, that he hears, or that he thinks of in his own mind. He is sad. I also just buzzed his hair (he always wears it buzzed). I noticed a rash along the sides of his head.

 

My questions: Is there dramatic ups and downs? Should we get him back up to 2000mg a day - it seemed to be doing much better? I have emailed Dr. Latimer, and she has emailed back, but very short answers - with still more questions. Could someone please tell me what it is going to be like - are we going to have daily ups and downs? I just need some answers.

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I think you should go back up to the higher dose (2000mg/day) of Augmentin. Using "Saving Sammy" as an example, Sammy had to be on the high dose for 1 year, or he would relapse, eventually he went to a lower dose for a couple of years after that (and also went through puberty which migh have helped things).

 

And yes...having strep positive family members will also have a detrimental effect on your son. Do you know if they were recently positive or do you think they might have been positive for a while (carriers)?

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bnnbs, hello....

I don't know too much, but could you clarify,..do you mean your son started having a rough patch since starting the prednisone? maybe it is that? or is the pred over? how do you think he did while on it, what did you observe? I don't have experience with it, but I think things can go either way with that.....how old is your son? and is the 2000 mgs. augmentin or augmentin XR? ..... sorry for all the questions, but this might help some here give you a better idea of what might be going on).....

 

thanks

Faith

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I think you should go back up to the higher dose (2000mg/day) of Augmentin. Using "Saving Sammy" as an example, Sammy had to be on the high dose for 1 year, or he would relapse, eventually he went to a lower dose for a couple of years after that (and also went through puberty which migh have helped things).

 

And yes...having strep positive family members will also have a detrimental effect on your son. Do you know if they were recently positive or do you think they might have been positive for a while (carriers)?

 

 

I have read Saving Sammy. I do think you should go back to the higher dose, but Dr. Latimer was pretty short with her email answers. I believe my other two boys who tested poitive for strep was just a new infection that just started. The are both on a 10 day Amox. and are fine, healthy, and no symptoms.

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bnnbs, hello....

I don't know too much, but could you clarify,..do you mean your son started having a rough patch since starting the prednisone? maybe it is that? or is the pred over? how do you think he did while on it, what did you observe? I don't have experience with it, but I think things can go either way with that.....how old is your son? and is the 2000 mgs. augmentin or augmentin XR? ..... sorry for all the questions, but this might help some here give you a better idea of what might be going on).....

 

thanks

Faith

 

My son is 12. He is on Augmentum XR. The first week of the pred. he was good, but that is also the same week my first son started a cold / come to find out strep. The second week on pred. Pandas son starte dto go down hill again. He is now on his last week of pred. The other two boys have been on amox. for 4-5 days now (10 day dose - they are doing well, healthy and fine.)

Thank you for any help.

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Welcome.

 

So, you noticed him backsliding a week after being off the steroids? Unfortunately, for most, steroids are a temp relief of symptoms and most do see backsliding once off them. The time frame for this varies.

 

If your son is off steroids, you can try givign Ibuprofen and see if that eases his symptoms. Once again, it is a band aid and a temp relief, but it does help a good amount of kids. Seeking answers to a permanent solution is needed even if Ibuprofen works.

 

I also agree with raising the Augmentin, esp since you just found out others in the household had strep.

 

Once the other family finish their meds, be sure to take them for a follow up strep test 3 weeks after last dose to ensure the strep is gone.

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Sorry. I just read your other post. Your son is still on the steroids. I'm assuming it was a taper down and he is now on the lowest dose? Steroids do lower the immune system, so again, I agree to up the Augmentin if others have strep.

 

Thank you for your reply. Yes, the steroids were tapered down. He will finish this Friday. He seems a little better this week then last, but still has this new counting thing. If we keep him busy and his mind active doing something he seems better, it is when he has time on his hands, that he get frustrated. We are a homeschool family, so we (me and the three boys) are with each other 24/7.

 

So if everyone thinks the augmentum should be put up again, how do I get the doctor to listen and do something???

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That's the million-dollar question! We had no luck with local docs as far as abx went. But Dr. Latimer is one of the experts: I'd call her office and let them know that your son has regressed since lowering the augmentin dose and tell them that you really want to go back to the higher dose to see if that reverses the trend. I'd expect Dr. L to be open to this. And if your son does gain ground on the higher dose, that gives you more ammo to request that the 2000 mg / day of XR be continued for a longer time (or resumed if his condition worsens again in the future).

 

Good luck!

 

 

Sorry. I just read your other post. Your son is still on the steroids. I'm assuming it was a taper down and he is now on the lowest dose? Steroids do lower the immune system, so again, I agree to up the Augmentin if others have strep.

 

Thank you for your reply. Yes, the steroids were tapered down. He will finish this Friday. He seems a little better this week then last, but still has this new counting thing. If we keep him busy and his mind active doing something he seems better, it is when he has time on his hands, that he get frustrated. We are a homeschool family, so we (me and the three boys) are with each other 24/7.

 

So if everyone thinks the augmentum should be put up again, how do I get the doctor to listen and do something???

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That's the million-dollar question! We had no luck with local docs as far as abx went. But Dr. Latimer is one of the experts: I'd call her office and let them know that your son has regressed since lowering the augmentin dose and tell them that you really want to go back to the higher dose to see if that reverses the trend. I'd expect Dr. L to be open to this. And if your son does gain ground on the higher dose, that gives you more ammo to request that the 2000 mg / day of XR be continued for a longer time (or resumed if his condition worsens again in the future).

 

Good luck!

 

Thank you so much for the encouragement. It is just amazing the knowledge and support of everybody. I am suppost to email her March 5th for a four week check up. We saw her in the beginning of February, and are in the process of moving to Florida. I do hope that she will respond quickly and with enough answers back to me. We have had to in person visits, and I very much like her. Anyway, thanks again for the encouragement.

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We didn't just treat with ABX. We treated with IVIG. We saw distinct improvement with our DD9 during a 10-day course of predinose and then didn't see ANYTHING improve until IVIG, at which point improvement happened fairly rapidly for us.

 

Post-IVIG, we noticed improvement wax and wane depending on how much ABX she was on (she maxed at 1000 mg per day Augmentin), but our fears about too much abx led us to decrease her to 500 mg augmentin, keeping an eye on her symptoms.

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