Nine days in and things are changing

[cobbiemommy]

DS is nine days into a new regimen designed by Dr. B and Dr. J. We are doing a steroid taper, Augementin XR, Biaxin, and Tindamax pulsed on weekends. He has done really well until today. Huge OCD meltdown about his sister. He had spent the afternoon with his cousins which went great. As soon as I showed up with his sister, all heck broke loose. She is generally the target of his OCD.

 

He had not eaten much and went for a walk to the local park, so he really had a lot of exercise. I don't know if it was low blood sugar, fatigue, ocd, herx, or all of the above. Just glad its over.

 

The plus side is he is not walking as awkwardly and his posture is better. This morning, he came down the stairs and I could not even hear him! He fixed his own breakfast, which is not something he usually does. His red cheeks are really flaring and getting hot. He had blood drawn and was so calm about the whole process. We went to a restaurant and he even sat away from me, which is highly unusual.

 

Not sure where I am going with this, but if any of you have experienced something similar, I would love to hear about it.

 

Cobbie

[T_Mom]

Hi Cobbie-- This sounds encouraging!

 

You said that "he has done really well..until today" -- That is GREAT!

 

the fact that he is "not walking as awkwardly", and he fixed his own breakfast, -- sat at the restaurant -- and even "away" from you!!! Fantastic!

 

Sounds to me like you are seeing really great indicators, and soon! 9 days in to the new treatments, this is really encouraging. There will always be 'blips' along the way as the reactions fade.

 

I have found my own tendency is to scrutinize each day, when a treatment change is made, instead of trying to step back and look for a week-to-week trend.

 

This trend sounds really, really good to me! How long is the steroid burst and may I ask how high for his weight? Take care and I would certainly be encouraged with this--

[michelew]

Hi Cobbie-- This sounds encouraging!

 

You said that "he has done really well..until today" -- That is GREAT!

 

the fact that he is "not walking as awkwardly", and he fixed his own breakfast, -- sat at the restaurant -- and even "away" from you!!! Fantastic!

 

Sounds to me like you are seeing really great indicators, and soon! 9 days in to the new treatments, this is really encouraging. There will always be 'blips' along the way as the reactions fade.

 

I have found my own tendency is to scrutinize each day, when a treatment change is made, instead of trying to step back and look for a week-to-week trend.

 

This trend sounds really, really good to me! How long is the steroid burst and may I ask how high for his weight? Take care and I would certainly be encouraged with this--

[michelew]

Hi, Cobbie. This does sound promising. You are lucky that you have found doctors willing to think outside of the box, & willing to try a combo of abx with steroids. I'm thinking that this may be what my son needs. My son is a very severe case, and has been suffering for over a year. We just learned of PANDAS/PITAND last October, and immediately started him on abx, as a Mycoplasma Infection was confirmed. At first he was only on Doxycycline, then 3 weeks after starting the Doxy, he underwent an IVIG, and then about one month later we added Azithromycin to see if this combination abx therapy would work. After about a month after adding the Azithromycin (500 mg/daily)...we started to notice some improvements. We're still not sure if the reason why he improved some was because of the Azithromycin, or maybe the IVIG had finally started to kick in, or maybe the Doxy was finally making a difference. At any rate, there's no way of knowing for sure. Unfortunately, about one month ago, almost all of the gains he had made, started to slip away. Now we're at a crossroads and wondering what to try next. We're thinking that maybe it's time to switch antibiotics, but I also like the idea of trying a steroid taper. Since inflammation is presumably what it going on, trying a steroid seems to make sense. The reason we haven't pursued steroids, is because at the end of November, we actually took our son to see Dr. Murphy, PANDAS expert here in Florda, and she acted like this would be very risky. She told us that we would have to have an entire team of doctors ready to jump into action, as she said that steroids can sometimes cause PANDAS kids to become even more psychotic. I'm sorry if it seems as though I'm rambling. I was just really interested in learning about your son's protocol. I like how they are using three different abx, and also trying the steroids. How is he doing today? Are you continuing to see improvements. Also, if you would not mind, could you please share with me the dosing of his abx, & also the dose and duration of his steroid taper. We have an appt. with my son's Neurologist on Monday, and I would like to discuss possibly getting more aggressive with his treatment.

 

I hope your son is still improving, and that the one bad day was just a "blip" in his recovery process. Any information you can share would be greatly appreciated.

 

Thanks, Michele