Update after Dr. B visit

[KaraM]

Well, we had a 6 month follow up visit with Dr. B. yesterday. Our dd8 has been on Zithromax since March and is doing quite well. Dr. B did not want to change anything (except switch to a pill at my dd8s request since the liquid tastes so bad - she did fine swallowing it in cut in halves this morning). She will stay on this at least through March. He did order a chem screen to check her liver (we had been giving her Motrin quite a bit over the summer). He also recommended we add Culturelle to her pro-biotic intake. We had just been giving her yogurt.

 

He said one of the reasons he thought she was responding so well to just the antibiotics was that we had caught PANDAS relatively quickly (her symptoms first started at the end of last summer - so we began abx about 6 months later). he said some children who have it for a few years before treating can respond to antibiotics alone, but most need more (i.e.IVIG).

 

My dd was also showing some low antibody levels to the Prevnar vaccine and Tetanus, but he said he does not recommend any vaccines or immunizations - not even Flu. He does not want to cause an immune reaction.

 

Long drive for a relatively uneventful appointment - but I am thankful that we seem to be doing the right thing. I'm also thankful that we do live close enough we can actually drive there within a day.

 

Kara

[Fixit]

Well, we had a 6 month follow up visit with Dr. B. yesterday. Our dd8 has been on Zithromax since March and is doing quite well. Dr. B did not want to change anything (except switch to a pill at my dd8s request since the liquid tastes so bad - she did fine swallowing it in cut in halves this morning). She will stay on this at least through March. He did order a chem screen to check her liver (we had been giving her Motrin quite a bit over the summer). He also recommended we add Culturelle to her pro-biotic intake. We had just been giving her yogurt.

 

He said one of the reasons he thought she was responding so well to just the antibiotics was that we had caught PANDAS relatively quickly (her symptoms first started at the end of last summer - so we began abx about 6 months later). he said some children who have it for a few years before treating can respond to antibiotics alone, but most need more (i.e.IVIG).

 

My dd was also showing some low antibody levels to the Prevnar vaccine and Tetanus, but he said he does not recommend any vaccines or immunizations - not even Flu. He does not want to cause an immune reaction.

 

Long drive for a relatively uneventful appointment - but I am thankful that we seem to be doing the right thing. I'm also thankful that we do live close enough we can actually drive there within a day.

 

Kara

 

Uneventful is good!!!!

So...your dd has been on abx for 6 months...your keeping the dosage, just changing form of intake ?

No...vaccines..., is that indefinitely...as in never again....or did he think in x years it might be an option...

and do you have a percentage of improvement...ie 50% better 70% better since starting abx...

i guess you are still seeing improvement???

I am glad things are working...keep us updated..

[thereishope]

I was gonna say the same thing, Fixit...Uneventful is good! Glad all is going well and the appt went well too!

[KaraM]

You are absolutely right - uneventful is good ! I don't mean to sound like I'm not thankful for that!

 

The dosage is slightly higher in the pill (the 1 tsp of liquid was 200-225 mg, the pill is 250). He said that was not a big difference. If we had stayed with the liquid, he would have kept the same dosage.

 

I didn't ask about how long to go without vaccines - I'm assuming for now while PANDAS is an issue - hopefully it will go away!

 

I am happy to report she wavers between 95% and 100%. She's been holding steady at that since mid September. Above 90% all summer.