Opinions on stopping prophylactic abx

[Anneli]

I am new to the forum, and was hoping to get some advice/opinions on stopping the prophylactic antibiotic treatment for my 7-year old son.

 

In October 2014, he started exhibiting sudden onset OCD type behaviors (germophobia, excessive apologizing) and anxiety. Initially, we thought that this was his response to a recent death in the family, and tried to deal with it as best as we could. He continued going to school, but was begging to stay home every day. After reading about PANDAS, we decided to have him take a strep test about 6 weeks after the symptoms started and he tested positive. After 10 days of Amoxicillin, he returned back to (at least very close to) normal and we thought we were done with it. In February 2015, he suddenly started asking repeatedly if someone had spoken to him and checking that he had heard everything correctly. He also said that felt like he had to repeat what he had heard in his head. The next day he had a positive strep test and received antibiotics. The following week we saw Dr. Swedo at NIH who diagnosed him with PANDAS, and prescribed 30 days of Augmentin. She also recommend CBT and prophylaxis at least for 6 months and possibly through the elementary school years.

 

My son showed improvement quickly after starting the antibiotics and was back to very close to baseline within the next 5-6 weeks. All in all, the episode was very mild and did not seem to cause him much distress. He happily went to school the entire time and did not show any symptoms at school. Since then he has been on a daily prophylactic dose of Amoxicillin and he did 7 session of CBT. We are also now giving him fish oil, vitamin D supplement and probiotics daily.

 

In the last few weeks, we’ve seen 3 PANDAS experts (Neurologist, ID doctor and ENT) in the area, who all confirmed his diagnosis but recommended stopping the long term antibiotics. He also was considered only “borderline” for benefitting from tonsillectomy, so we have decided against the surgery.

 

The current plan is to stop the antibiotics after the international trip that we are taking this summer. After that there doesn’t seem to be any other plan than to just wait and see. I want him off the antibiotics, but am also very nervous about it. Right now he is very happy and healthy and I want to keep him that way.

 

Any advice/opinions from those who’ve btdt? Thank you very much in advance.

[kmacdonald34]

Glad your son is doing well. My daughter is in a similar situation as she responded well to antibiotics. She has been on them since Feb and has had only 1 minor flare. We see the dr at Mass General and our current plan is to take her off all her meds for the summer to see how she does. I am nervous because I don't want a big slide back but hopeful that she will do well.

[NYCMom]

Our DS is 12yrs, diagnosed with PANDAS (PANS) at 6yrs. He was on prophyl abx until a couple of years ago. DS was doing great so Dr gave us the go ahead to stop whenever we felt comfortable, so we did. That year he contracted Lyme and had a bout of strep that put us right back on abx, which he is still on today.

He's a pretty mild case, we've never done any other treatments other than some sporadic Omegas, probiotics, etc. and some limiting of gluten and sugar. He currently flares every once in a while, is at 95% most of the time and 100% occasionally.

[WorriedDADNMOM]

I am wavering too about removing PenVK prophylaxis on dd11.......at least for the summer months............ However, repeated exposure to strep(which is highly likely) and the assault of the antibodies on the brain....we will probably just keep her on it. Pen is/was always a standard treatment for rheumatic heart disease and has a long record of being safe. I am really fearful of going back to that place of severe flare or constant flare needing to dig out of it.

[Trishb]

I would get a second opinion from another ENT. My doctor said to think of the tonsils like an air condioner vent and they trap and hold the bacteria. My ENT performed a lot of tonsillectomies for Dr. Keissling's patients. I asked him how those patients were after the surgery. All he said was I saw them for the follow up and that was it so he assumed things were getting better.

[pr40]

i would say stop abx when you stop CBT for what I think is the obvios reason. i.e., he is better after the initial abx but NOT symptom free.

 

on supplements, possibly fish oil and vit D need not be given together, only fish oil?

[Anneli]

Thank you to all who replied. At this point, we are leaning towards stopping the abx, mainly because he's doing so great, he seems to respond quickly to antibiotics and that was the recommendation we got from all the specialists that we saw (other than the NIH). I plan to research natural abx though and will consider starting to use them.

 

The ENT we saw is a PANDAS specialist and I've read from other boards that he has performed t&a on many PANDAS children, so we are going go with his recommendation to not perform the surgery at this point.

 

I will say it is making me feel very helpless that while everyone has confirmed his diagnosis as PANDAS, the recommendation seems to be that we do nothing. I think it may be because he is doing so fine now, but I worry for his future. Or maybe there really isn't anything else to do than wait and see. Meanwhile, I am trying to learn to live in the moment and appreciate every good day that we have.