mariamacko

Hello. Our son, age 6, has been doing so well on zithromycin. We recently changed doctors because we were driving almost 4 hours for a while until we found out a local pediatrician is DAN certified and has a lot of experience with PANDAS. We continued the zithromycin for a while and now he has recommended the Bicillin monthly injectable. Our son has had his first dose and is due for his second one next week. We saw some regression the first few days which has me so worried but they said it was not unusual to see some regression before things got better again. Now it has been about 3 weeks and he is doing better but has at least a few OCD "moments" a day still. I know that is not a lot by any means but when I compare it to how there were absolutely NO signs of OCD in him at all, not even one little bit for all those weeks/months when he was on the zithromycin, I am not sure what to think. I am happy that he is still doing so much better than he was when we initially sought treatment for PANDAS but I don't know why the zithromycin seemed to work better. By the way, his titers have dropped from 700 to 500 since last year, but have remained at 500 for the last several months whenever he has been tested. I guess the zithromycin did not lower the titers much although it drastically improved symptoms. I am wondering if the Bicillin will lower the titers significantly but the trade off is, it doesn't work as well. I wish I knew the reason why some meds work better for some kids and others work better for other kids...anyone have any idea? Thanks! Maria

Found it...I hope I linked it correctly: http://health.more4kids.info/2008/11/autism-in-kids/

Let me see if I can find the article....I forget where I found it because I just briefly looked at it but wondered why they referred to PANDAS as an ASD.

Just saw an article that referred to PANDAS as an Autism Spectrum Disorder....why? Our son's symptoms (which have since resolved due to zithromycin) were OCD, mild vocal tics, separation anxiety, and some impulsivity. He did not display any symptoms of ASD. Any thought on this?

Hello!. His AntiDNase went up. Our son's behaviors started last October, but by the time we got in to see a specialist it was December. AntiDNase titers were 700 at that time (Doctor said they were probably in the 2000 range in October). So in December, titers were 700, then in February they were 500, then in April they were 450. They didn't drop much but there was definitely a decrease each time until now. In June, they went to 490- not a significant rise but he is on azithromycin so I am not sure why they would rise at all???? I am referring to AntiDNase titers for all tests. Thanks for your response!

Hello! I am just a little confused as to what it means that, although our son is doing very well on Zithro, they did a recent check of titers and they have increased instead of fallen....His OCD and other behaviors have almost disappeared so we are so happy with that but I don't know why the titers went up. Tx! Maria

This fee is strictly for the lab form....We go to a local lab here like before.

Hello! Just wanted to see if anyone else thought it was excessively high for our doctor who is out of town to bill us $150.00 for filling out a lab request form and mailing it to us. He doesn't accept insurance so we pay $220.00 each visit in person and the same for phone consults! In between we have emailed several times. I believe I requested some of these labs the last time we saw him in person and asked him again in the emails I sent. So he finally got back to me and said he would fill out the lab request form and mail it to me like he did the last time. There were more tests on this lab form but $150.00 for probably 20 minutes of work IF that long. Any thoughts or opinions on this? Is this normal???? Tx Maria

Our doctor did some bloodwork and found elevated titers but no other infections such as mycoplasma. However our son was not tested for Lyme or any viral infections. He started minocycline in Dec. and for the first two weeks all symptoms were gone! Then he slowly started showing symptoms again although not as bad. Even his teacher remarked during those two weeks that he was back to his old self! How do you know if its a flare or anything else? He just started zithromycin to see if that would make a difference....Does anyone have any thoughts on this? tx!

Hi All, Before our son (6) was diagnosed with PANDAS in 10/12, he was always an absolute angel in school!! Since then, there are days when he is on yellow or red (instead of green) for being out of his seat, disrupting activities, talking etc... He wouldn't have behaved like this before as he always wanted to be on "green" and was afraid of getting in trouble. Do other parents see these behaviors in their PANDAS kids? Just wondering if this is normal or he is maybe showing signs of ADHD or something else..... TX!

Our doctor is willing to switch from minocycline to Azythromycin so he called in a prescription for 200mg once per day. Just wondering if the dose should be higher for PANDAS and if so, where can I find any information about this? TX!!!

I am referring to strep titers. ASO and AntiDN-ase....I guess I wasn't sure if a new antibiotic is worth a try since the Minocycline is keeping the titers from RISING at least...I am not sure if that means he has not been reexposed to strep since beginning the medication or that the medication is making his titers drop???? Sometimes it is so confusing! I have read in other posts that titers can drop very slowly too.

Hello, I have posted before so I will keep this one short...Our son started on Minocycline in December because our doctor felt it was a good choice due to its anti-inflammatory properties...Our son did well the first two weeks on it....no obsessions or copralalia at all! Since then we have seen some regression. We did try Augmentin for a few days but it did not agree with his tummy at all. We put him back on Minocycline again. His titers were over 700 when we first had him tested about six weeks after the initial onset of symptoms that occurred in October. So his first set of titers were Dec....they were checked again in Feb and were 500. They were just checked again in April are are only down to 450. So this last time they only dropped 50 "points" I guess for lack of a better word. I am just wondering if we should try Zinthromycine (spelling?) now to see if it might help. Does anyone have any advice? Could he do better on another antibiotic or would it likely not make a difference with the behaviors? Thanks! Maria

Just got the rest of the bloodword results! His ASO titers are normal but the Anti DNAse titers barely fell at all. He initially showed symtpoms in October but by the time we found a doctor to help us it was December. His DNAse titers were over 700. Then in Feb, he had bloodwork again and the DNAse titers fell to 497. So it appears they fell almost 200. However, we just had them tested again, about two months later again, and they have only fallen to 459. Any ideas why the level hasn't fallen as much even though he is on Minocycline???? Tx!

Thank you everyone for your posts!! I really appreciate it. With my son, it is not really any compulsions, though, it is saying the inappropriate or aggressive things that he says. Do you still think it might just be "learned?" He has been doing better I think...he doesn't say these things nearly as often as he did but they are still there sometimes. He will say things like "I had a thought of killing/hurting my brother, my dog, etc..." or "I had a thought about someone's pee pee" What is the best way to handle this? It usually makes him feel bad or anxious so I just try to reassure him that it is just his brain making him think these things and it's ok....

I posted a few weeks ago about our son Ryan....He had sudden onset OCD and we found out his ASO and Anti DN-ase titers were really high! This was back in December. He started Minocycline and for the first few weeks, he was back to normal. Then some behaviors started again but not as bad. We have tried Augmentin but he couldn't tolerate well. I have heard there is a new FDA warning for Azythromycin. BUT...we are now at a point where his titers are coming down. So he hasn't been reinfected with strep. They are almost back to normal range with Minocycline and a lot of things have improved but he still has inappropriate and aggressive thoughts that he verbalizes. My question is....could a strep infection triggered the OCD and now he no longer has PANDAS, but has "regular" OCD???? I am not sure what to do at this point?

Thank you for your reply also. I am hesitant to have him on Zoloft although I am told by many it is safe for children. I do see some improvements with it but I do not want him to be on it for long. I will definitely talk to the doctor about changing the antibiotics. I was under the impression that the steroid burst does not work unless it is given when the worst of the symptoms appear and would not be beneficial to our son now. I am also looking into food allergies as our son has always had allergies and they seem to be worse since moving down south from PA. Ibuprofen seems to help a little. What is the recommened dosage/duration for using Ibuprofen? Just the recommended dosage on the bottle as needed? I appreciate all your advice! Tx Maria

Thank you for your reply Dedee! We will be seeing the doctor next week so I will ask about the other antibiotics. I would much rather try another than the Zoloft at this time. Who are you referring to when you say specialists? Do you have names/numbers of other physicians who specialize in PANDAS? Is it normal for his titers to have dropped although they are still over 400 and still see behaviors like this? I am anxious to speak with the doctor next week. Thank you again! Maria

Hello. Our 6 year old son developed OCD and behaviors overnight back in October. My family has a history of mild OCD but our son's behavior changed overnight and I had heard of PANDAS before. Our pediatrician here did not know much about it so we saw a psychiatrist out of town who had extensive experience with PANDAS. Our son's titers were not checked until we saw the specialist about two months after the behaviors first started. His Anti DNase titers were over 700 and the doctor commented that they were probably even higher back when the behaviors first started. Our son was put on Minocycline 2x/day and we saw major improvements over Christmas break. We went home to see family and our son was back to his old self- very sweet, docile, played nicely etc... I forgot to mention that his initial behaviors were just acting wild, impulsive, inappropriate words, swearing etc... After the two weeks during Christmas break, some of the behaviors came back but instead of constantly swearing, he was saying bad things like killing/hurting people etc...and then he has major anxiety and apologizes for these bad thoughts. Also, he is back to acting wild and impulsive like he can't sit still. He is doing fairly well at school but used to be a little angel. He has some issues with keeping his hands to himself and talking a lot when he is not supposed to be. We have consulted by phone with the psychiatrist out of town and have a face to face visit scheduled in early April. In the mean time, I asked about switching antibiotics. We switched him to Augmentin but he didn't do well due to tummy issues. We discontinued the Augmentin and resumed the Minocycline and he is now also on Zoloft. We have noticed small improvments but not much. His titers were rechecked in February and they were down to 450. At this point, I don't know if the dosage of antibiotics should be higher from some of the information I have read. Also, is it now just "regular" OCD? Should we try IVIG? I have so many questions and still feel that there is some infection our son is fighting. Is there a way to determine more definitively if it is an autoimmune issue? I have heard of the Cunningham Test which will be available very soon. Has anyone been through something similar and is there anything specific I should be asking our doctor? Thank you!