Dr. M Nov 16- questions

[MomtoJake]

My DS (recent onset PANDAS/PANS dx by pediatrician) is scheduled to see Dr. M in Tampa on Nov. 16. He was on a month of Augmentin ES and it helped a lot. It did not get him back to where he was, but the most severe OCD and tics went away. He stopped ABX on Oct. 21. He has started to go downhill and fast. I don't know if it is a new exacerbation or just that he needs to be on ABX for a longer period. He has also presented with new physical symptoms (swollen lips/angioedema) and has had a blood test for common allergens (results not back yet). I had him vigorously swabbed Thursday and a culture sent out- both negative. I suspect he is PANS. Now on to my ??.

 

1. Should I push for more ABX at this time, or let Dr. M and her team see him as he is now.? I hate to see him suffer for another week if the ABX can be helpful, but if it would help in his DX, then maybe keep him off. I feel like a horrible mom just thinking it.

 

2. For those of you that have seen your child come back from ABX and then regress again, is it common to see new OCD behaviors that weren't present in the first exacerbation as well as some that were? Or see behaviors in the 2nd exacerbation that are so much more severe than they were in the first, such as emotional lability/severe over-reactions to almost everything, and hyperactivity and clumsiness?

 

3. Any important need to know info anyone can tell me about what to expect at my appointment with Dr. M? You can PM me if you want to.

 

I thank all of you so much. This forum has been an absolute sanity saver for me!!!!!!!!!!!!!

[airial95]

Hey, we're also patients of Dr. M. And I would suggest if you can get him back on abx now, I would do that. When we saw her the first time with my son, he had been on abx for almost 6 months, with our pediatrician doing 30 day courses at a time. It didn't impact her ability to help us, as she had the complete records from our doctor on hand and goes a lot by the patient history and the pre-screening forms they have you fill out.

 

Be prepared to be there for a while, I think our first appointment with her lasted most of the morning, have your questions written down - so you don't forget anything when you have her there. In addition to seeing Dr. M, you'll likely see one of her fellows who will start the history gathering, etc. We like Dr. Toufexis the best (I think she's still on maternity leave) and we've also seen Dr. Brown as well - whom we also like. They both are very thorough, and both were familiar with our case history prior to the appointment and had gone over all the records in detail that were sent over. Dr. M and her fellows are also very good about answering questions via email. I've always gotten an email response to my questions within 24-48 hours (non-emergency questions) - so if there are things you think of after the fact, email them and someone will respond.

 

As for your second question, yes - our son's symptoms have morphed over time. The first couple of episodes, we saw some of the same OCD patterns, but then they seemed to evolve to different things. Some got better and went away over various episodes, others got worse. He has only had a few motor tics as well, and each of these seem to have changed after a couple of episodes - his first was a mouth grimace, then after 3 exposures/flareups, that changed to a teeth grind/chatter, which has now changed to a stutter/head flap.

 

Our daughter who was recently dx (has her first appt with Murphy on Jan 4th) we saw in increased severity in her emotional lability (which with seperation anxiety were her first two symptoms that showed up). So much so that was what prompted us to have her evaluated. So yes, it's possible!

 

Good luck with your appointment, I'm local to the Tampa are, so if you need suggestions while you're here, feel free to PM me!

[Dedee]

I think Arial95 has covered it very well. You will like Dr. Murphy and her team. I dont think you will have trouble getting more antibiotics. Just make sure you give a complete detailed description of what you are currently experiencing and records from your current physicians office should suffice for the rest. She will likely do lots of lab work, but the antibiotics shouldn't affect that. You are in good hands. Best of luck.

 

Dedee

[sww817]

I think you will get a lot of informative responses to your post. My thought would be get him on another abx if you can get it. The response he has will be benefitial to Dr. M. Perhaps even more so that "seeing" for herself. As we all know, sometimes these issues pop up at times other than when you are sitting in a dr's office! So it would probably be helpful if you can get him the abx and document thoroughly the changes you see in him before your appt.

 

I can't help much with your other questions. We are actually about a week behind you seeing Dr. M also. But we are more years into this and I don't have the answers I wish I could give you! We definitely are PandaX as well and I think it makes things more complicated. I am interested to see what Dr. M thinks.

 

Good luck! I hope you get some answers.

[MomtoJake]

Thanks Arial95 and everyone!! I will call my Ped for the ABX. Thanks for the reminder about writing out questions, I probably would have forgotten to do it since things are so crazy right now. I also forgot to mention the extreme separation anxiety, so I have to carve some time out to write them down!! I guess you know how that is!

 

Regarding the labs- do they do them at the time of the appointment on site or give you lab orders to take to your regular lab? I want to prepare DS if he is going to get poked. ABX or no they will see a full PANDAS show when it comes time for that.

 

Thanks again, I really feel good about this appointment after reading that they will have studied my son's history etc. prior to the appointment.

[airial95]

My son has never been poked at Murphy's office, she always gives an order for the labs. My son has always had a pleasant experience there, and actually looks forward to going!!