Finally got bloodwork results

[tantrums]

I got results from bloodwork done 6 weeks into the second course of ABX. Doctor said she wishes she had done them sooner, but this is when we got them. My ped is working with me, she is learning herself, so I can't fault her. So anyway, we have

 

ASO is 230 and Dnase is highly elevated

 

Should I ask for the doctor to try another antibiotic? He is on amoxi now. Has had problems (GI SEVERE) with others in the past, so it conerns me. But after 6 weeks, shouldn't the Dnase be down?

 

And no wonder he is still acting the way he is

[peglem]

How is he symptoms-wise? If symptoms are improving, I wouldn't worry too much about the titers. But, then, we've never really had high titers. The only thing I wonder is if your child may have intracellular strep. I don't think much is known about the rate at which titers fall, and I think you need to look at whether the titer is rising or falling over time, more than making a judgement based on a single value.

[tantrums]

His first episode was this fall, sadly December by the time I realized there was a serious problem. He was totally out of control at that time with rages, wouldn't sleep, tics were growing by the day. He was put on ABX at that time and responded well. Was referred to neuro who said it's just TS and wouldn't do long term ABX. Ped wasn't amused and after he started to flare again about a month off, she agreed to do long term ABX for us. It has been about 2 months and I haven't seen the rapid improvement I saw last time. Granted, he also didn't escalate to the extreme that he had.

 

I have to say, tics are very minimal. Rages aren't very bad. Just mostly mood liability, whines constantly and OCD behaviors. It just hasn't seemed to be changed at all in the past month.

 

It would have been so helpful to have bloodwork done the first time (decemeber) and then again in February/March so we knew the response. I think you are probably right, it's hard to know much from one level

 

However, this DOES answer my question from the other day of "could this just be TS?". Guess not and I think it is time for me to see one of the specialists.

[ajcire]

Tantrums, when was his last case of documented strep? and how high was dnase or did they not give you a number?

 

 

 

His first episode was this fall, sadly December by the time I realized there was a serious problem. He was totally out of control at that time with rages, wouldn't sleep, tics were growing by the day. He was put on ABX at that time and responded well. Was referred to neuro who said it's just TS and wouldn't do long term ABX. Ped wasn't amused and after he started to flare again about a month off, she agreed to do long term ABX for us. It has been about 2 months and I haven't seen the rapid improvement I saw last time. Granted, he also didn't escalate to the extreme that he had.

 

I have to say, tics are very minimal. Rages aren't very bad. Just mostly mood liability, whines constantly and OCD behaviors. It just hasn't seemed to be changed at all in the past month.

 

It would have been so helpful to have bloodwork done the first time (decemeber) and then again in February/March so we knew the response. I think you are probably right, it's hard to know much from one level

 

However, this DOES answer my question from the other day of "could this just be TS?". Guess not and I think it is time for me to see one of the specialists.

[tantrums]

The first episode, in December, he had a neg. rapid but a pos. culture. When he started to flare again in February, both were negative.

 

No number on the dnase

 

I'm looking at CHOP now. Anyone know about them there?

[JAG10]

Yes, we saw Dr. Elia at CHOP, she's a psychiatrist and first pointed us in the direction of PANDAS. It takes a long time to get an appointment. Her treatment options are SSRIs, minimal, short course abx or PEX, no ivig at this time.

 

Are you in the Phila. area? I'm in search of local PANDAS friendly docs and may have a good lead.

[tantrums]

Yes, we saw Dr. Elia at CHOP, she's a psychiatrist and first pointed us in the direction of PANDAS. It takes a long time to get an appointment. Her treatment options are SSRIs, minimal, short course abx or PEX, no ivig at this time.

 

Are you in the Phila. area? I'm in search of local PANDAS friendly docs and may have a good lead.

 

I'm not in the philly area exactly, but obviously I'm going to have to travel in some direction. I am in Lehigh Valley - Bethlehem.

 

I actually requested neuro or rheumatologist at CHOP. I did the online request, which seemed to work better than calling. when I called, they just shot me into the neuro message system. Online, I was able to explain symptoms and say I didn't know which specialty I wanted.