Negative strip after 18 days on ab, but behaviors same

[lboll]

Hello,

As mentioned before, we are very new to PANDAS and its treatment. My son has been on Augmentin for 18 days. He was on 1500 mg and then raised to 2000, but since there is no XR here in China, we decided to go back to 1500. Before he started, he had a positive strep test, but his titers count was only 299. We thought it was still worth proceeding and trying out the antibiotics.

 

After 18 days, there is virtually no change in his behaviors. Well, actually his behaviors worsened if anything. He was waking up at night, pushing furniture around, yelling, and the list goes on.

 

We went to the doctor tonight. His rapid strep came back negative. The doctor said the test may not be reliable as my son was not cooperative. Anyway, my husband is questioning whether to continue this journey or not. I'm trying to explain why we should continue even though his test came back negative, but I don't quite understand it all myself.

 

So is this correct? Even though his strep test came back negative, it could still be hiding in his body- such as pockets in his tonsils, sinuses, or skin. And, if he doesn't have strep himself, he could still be exposed to strep which would keep his behaviors coming. Is there more to this? I feel like I'm missing some really important information, but am so new to it all that I'm not sure exactly what it is.

 

The doctor and I decided to put my son on Zith. He was concerned about high dosages of this as it stays in your body much longer than Augmentin. My son weighs 65 lbs. So we are doing 250 mg. a day for 3 days and then every other day after that. My doctor is the first to admit that he knows nothing about this subject and is basically going by my word. So any advice is appreciated.

 

One other thing: My son's urine has tested positive for Protein on his last 3 tests. Has anyone else ever had this happen with their children?

 

Thanks again everyone! I'm so thankful for this group.

[lboll]

Oops, I meant negative STREP, not Strip!

[thereishope]

I would have said to see if you can get a script for Zith and you did! You could ask the doctor to swab the sinuses, the anal area, etc for strep. I believe strep in the gut is done through a stool sample.

 

I think if you are on antibiotics you can get a false negative on a strep test. Can someone answer that?

 

How does your child respond to Ibuprofen? have all family members been tested?

[lboll]

I would have said to see if you can get a script for Zith and you did! You could ask the doctor to swab the sinuses, the anal area, etc for strep. I believe strep in the gut is done through a stool sample.

 

I think if you are on antibiotics you can get a false negative on a strep test. Can someone answer that?

 

How does your child respond to Ibuprofen? have all family members been tested?

 

I haven't really tried him on Ibuprofen. Should I be adding that in as well? I read in another posting that Ibuprofen is for inflammation. I'm guessing that's inflammation on the brain? How much do you recommend? Would I use children's ibuprofen?

 

Our family has not been tested. If we are tested, and come out positive, what happens with that?

 

Thanks!

[thereishope]

You know what maybe I should do a reminder thread about Ibuprfen. It seems that info is slipping through the cracks. How old is your child and how much does he weigh?

[ajcire]

I know my dr. said that we would get a negative on strep culture if he was on antibiotics even if he had it.

[lboll]

Thank you, Vickie. My son weighs 66 lbs.

[thereishope]

My bottle says for 66 pounds, you can give 250mg. Equals 2 1/2 teaspoons for the liquid.

[CZL]

Thank you, Vickie. My son weighs 66 lbs.

 

lboll,

 

1. Add probiotic as well while doing antibiotic ( I am also too new about this). you can search probiotic on TaoBao ( if you don't know, ask some local friends, they all know Taobao), you can get some probioitc on-line which is made in US, price is much higher than it in the US though.

2. I don't know your situation, I hesitate to say, but I do really want to suggest, if I were you I would go back to the US to see dr there right away. What I have had so far is always frustration+desperation.

[sf_mom]

My son is on 500 mg daily of Azithromycin and he is 45 pounds. Strep could be anywhere in the body. I was told by our Dr. that if you've been on antibiotics rapid and culture would most likely be negative. I would run his titers: ASO and Anti-DNAse-B to see if they are elevated.

[EAMom]

Does your son swallow pills? You can give him 1.5 tablets (get a pill splitter) of the 200mg size Ibuprofen's up to 3-4 x daily (short term ie days, long term ie weeks/months you may want to give less). Give with food.

 

At 66 pounds I would not hesitate to give 500mg/day Azith. for a month, to see if there is any effect. My dd has been on 250mg/day since June 08. She started at this dose at 44 pounds (almost 8 years old) although she is up to 58 (9.5 years old) now.

 

If your son is on abs, the culture is likely a false neg. For our (non-pandas, I hope) strep carrier dd (who is not on long term abs) we we wait at least 2 weeks after the last antibiotic dose b-4 re-culturing. (You can re-culture sooner, and believe a positive result, but a negative result could likely be false just b/c you tested too soon.)

[lboll]

Thanks so much for all of your answers. I now understand about the false positives and it makes complete sense.

 

I will probably contact one of the PANDAS doctors in the US for a phone consult, so my doctor here can work with one of them. I think he's beginning to get a little skeptical, especially since my sons behaviors didn't change at all on the Augmentin.

 

I'm still wondering about the protein in the urine and wondering if there's a connection? Thanks again!