New to forum-Need some advice

[mariamacko]

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!

[Dedee]

Well, you are doing great to get him on antibiotics. My only question would be why is the doctor only trying those two antibiotics? Many kids do great with Zithromax, clindamycin, or Biaxin. I think trying a different antibiotic would be your next step. Usually a 30 day trial, but if you don't see improvement within 2 weeks on the new antibiotic, then consider a different one. Also, you need to get an appointment with one of the PANDAS / PANS specialist. It will take about 2-3 months on the waiting list, so get your appointment now. There is no substitute for someone who REALLY knows this illness. You need a true specialist to lead you with this issue. Best of luck.

 

Dedee

[mariamacko]

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

[pr40]

names of PANDAS specialists are given in the heading of the forum. you will find other useful stuff there. i want to second dedee, perhaps the abx she named would work better.

we had similar issues with aggression with our dd5. I am not a doctor and cannot give you an advice but can say that we would not do anti-depresents for our kids.

you can also try ibuprofen and food elimination while you wait for your apt.

with our kids, PANDAS meant cycling through different symptoms. then, on abx and after a steroid taper, they began to slowly disappear and our kids are slowly coming back. expect a process, a year or longer.

we did not hear about killing people for weeks now.

[mariamacko]

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

[ptcgirl]

Hi Maria! Yes, we've all been in your shoes or very near to it. You are not alone. Your son may have a different type of infection as well. Pans includes a whole lot of different infections. You will want to check him for a variety of them. Strep, Mycoplasma, Lyme, yeast (candida), pertussis, and sinus infections(major allergies) have all set my dd into major flares over the last seven years. But his strep tigers are still too high and yes that could be causing. We've done the Zoloft thing and there is a place for it with our family history but it is a tough decision for everyone. We are also doing ivigs every 8 weeks which have helped amazingly. According to our psych dr there will always be a residual amount left but it is tiny in comparison to where my dd was a year ago.

 

Plz feel free to pm me at any time. Good luck. Look into the nimh site for the ivig trial

[pr40]

ibuprofen, if i am correct, can damage the liver if taken too long so dr should monitor it. we are trying to be vigilant and give it only once a day, in the morning. and we follow the dosing on the bottle.

steroid taper is given, if I understand that one, as it is in other cases of inflammation including, for instance, arthritis. if a child is in exacerbation, it means that there is an inflammation of some kind.

for food sensitivity, like gluten and dairy, you got to stop it entirely for a longer period of time, 6 months or so, and can asses results only after it since it takes a while for the organism auto-immune response to stop.