Antibiotic questions?

[Kimflow]

So my son had strep throat, huge flare in PANDAS symptoms.....actually the whole mess has clued me in that he has reacted to strep many winters in a row with increased anxiety/OCD etc. Now I know what was happening. When he got strep throat, then we had the big flare.

 

He was on a z pack 250 mg (5 days) during which some of his symptoms got better.....the major one was reduction in the anxiety related to motor function...ie. is you said sit down, then he would have to have you say it again and "help"him sit down.

 

5 days after hte z pack was done, two doctors told me it was okay to reculture him. He tested negative.

 

We still have the motor ocd/anxiety, choreiform movements.some degree of separation anxiety. In fact, the motor related rituals/ocd is more panicked now than it was on Antibiotics. I called DAN doctor and he would only give me prophylactic zithro..250 mg 1 time a week.

 

Then I went on Stephanie's website and read these things that concern me but what do I do if I can't get a doctor to give me a month's worth fo zithromycin.????

 

I read that they say 3 whole weeks after strep treatment, you should get culture.

I read that prophylactic means 1 time a day......but I swear I also read 1 dose a week.

 

I am at a loss of what to do until I see DR. Latimer in August. Does she prescribe longer duration antiobitics. My only other thought is to start having him take OLive Leaf and xlear spray up his nose.

 

Please help me iwth any ideas. Comments.

Thanks, Kim

[colleendonny]

I don't have all the answers. We are on treatment dosage of azithromycin since January of 200 mg 1x per day. My DD is 5 and 53 pounds. I'm not sure of you story... Does your DS have autism? Is that why you are seeing DAN!?

I think prophylactic doses vary. Some can be a few times per week. Would you DAN be willing to make it at least 3x per week?

I'm not sure where you live, but is it possible for you to call one of the other specialists to get in earlier?

 

I'm sorry. I wish I had some more advice for you.

[Kimflow]

yes, he has autism.

 

I just spent 20 minutes of the morning after we just woke up...helping him get through two different rituals. Head up/down and then back to bed, he screamed DOWN and wanted me to push his body down into the bed. Then when I did he said ALL DONE. This is a rollercoaster even worse than autism Literally, we are cycling between a good and bad day for 4 days in a row. Wed. and Friday the PANDAS stuff wasn't so bad and I got hopeful. Thursday adn so far today, the rituals started as soon as he woke.

 

yes, I wrote down the name of Deborah McCabe who is near me in Wash. DC. Maybe she can help me in the interim? Does anyone have any comments? If not, I would have to drive to New Jersey or Conn. by myself with my son. Maybe that is what I have to do even if it is just to get daily zithromax as he is definitely flaring off of it.

today we go to get his blooddrawn.

Kim

[colleendonny]

Oh man, I'm sorry for what is going on. I haven't had any experience with ritual OCD.

 

I hate to say it, but I would definitely ay least make another appt with a PANDAS doc. Either Dr. T or Dr. B, just see when you can get in the earliest.

[ally]

Hi everyone,

 

I am new to the forum. I am also dealing with Pandas/pans flare. My son finished a 10 day course of zithromax. After which our Dan told us to stop the antibiotic and continue some form of antiinflammatory medication. He was responding to advil so he prescribed celebrex as it was relatively better tolerated than advil. I continued the celebrex for 6 days. Now he is miserable with the hearburn/chest pain. He is on a prophylactic dose of 500 mg of zithromax once weekly but I ended up giving him only 250 mg on thursday as too much was going on with him and I forgot the morning dose. I have a feeling that he needs to continue the daily dose of zithro for now. Since we started zithro, we are also dealing with yeast like symptoms or parasites. While he was on zithro, anxiety did get better and some tics improved but after the course ended, the anxiety is back. He gets extremely anxious even if we ask him to go have dinner. He has trouble transitioning. Just wants to stay in bed. Still walking on his heels and has vocal stimms/tics. We are waiting for ASo titers and dnase B titers result. My son has autism and is 8 yrs old. I have suspected pandas for a long time but recently he had flu and had an acute onset of tics and severe anxiety and finally dan was convinced that he does have pans. Sorry my post is so disorganized. I need advise on where to go from here. Should I just continue zithromax for a couple more weeks? Also what antiinflammatory meds/supps have you found successful?

 

I would really appreciate the help. I still don't know how to efficiently use the forum but hopefully will get better.

 

Thanks

Ally

[fightingmom]

I have not dealt with these types of symptoms but my son responds extremely well and quickly to ibuprofen.

[PowPow]

Can you use an acid blocker.or reducer before the celebrex? Like hours before?