Update- Pediatrician agreed to trial abx!

[Tattoomom]

I've been away, just busy trying to get back in the swing of things after the holidays.

 

I had a nice long conversation on the telephone with the Pediatrician about doing a trial of abx to see if it would help with ds's tics. She agreed but initially wanted to use Penicillin. I asked her if she felt comfortable trying Augmentin or Zithromax (I learned that here, thanks!) and at first she said no, but to my surprise when we picked up the script from the pharmacy, it was a Z-Pack! She advised me to repeat his bloodwork to check strep titers before we started the abx so we did. The bad new is the strep titers came back negative. The good news is after just 5 days worth of Zithromicin, his tics were basically gone!

 

She wrote the prescription for 250 mg. Zithromax (he's 106 lbs) and instructions were to finish the whole pack (2 pills first day, 1 pill the next 4 days) then STOP for 4 days, refill script and take the next pack.

 

He's currently in his "break" and just today, I can see a few tics sneaking back up.

 

I don't know what to do. I guess I need to call the Ped. again and discuss these results.

 

I know she puts a lot of faith in the blood titers (and he has none) so I assume she won't agree to PANDAS.

 

But what's the deal with the abx helping? Everyone in my family noticed!!! Coincidence? I think not!

 

What now? Advice?

[Tattoomom]

P.S.

 

Also had Sed Rate, CRP and IGG subclasses checked. They were all normal.

[earnestfamily7]

I've been away, just busy trying to get back in the swing of things after the holidays.

 

I had a nice long conversation on the telephone with the Pediatrician about doing a trial of abx to see if it would help with ds's tics. She agreed but initially wanted to use Penicillin. I asked her if she felt comfortable trying Augmentin or Zithromax (I learned that here, thanks!) and at first she said no, but to my surprise when we picked up the script from the pharmacy, it was a Z-Pack! She advised me to repeat his bloodwork to check strep titers before we started the abx so we did. The bad new is the strep titers came back negative. The good news is after just 5 days worth of Zithromicin, his tics were basically gone!

 

She wrote the prescription for 250 mg. Zithromax (he's 106 lbs) and instructions were to finish the whole pack (2 pills first day, 1 pill the next 4 days) then STOP for 4 days, refill script and take the next pack.

 

He's currently in his "break" and just today, I can see a few tics sneaking back up.

 

I don't know what to do. I guess I need to call the Ped. again and discuss these results.

 

I know she outs a lot of faith in the blood titers and he has none, so I assume she won't agree to PANDAS.

 

But what's the deal with the abx helping? Everyone in my family noticed!!! Coincidence? I think not!

 

What now? Advice?

 

if it were me I would start them again - regardless of her answer... you saw the proof the abx work! You can always check w/pharmacist about antibiotic questions too....

[Tattoomom]

if it were me I would start them again - regardless of her answer... you saw the proof the abx work! You can always check w/pharmacist about antibiotic questions too....

 

 

Oh yes, absolutely! I will definitely be starting him on the next pack this Friday, I just don't know what to do from there...

[faith]

tatoomom

as posted on the other thread, ..... is this the first time on abx? and is it usual or unusual to see a cessation in tics for a couple days or more? what will your doc do if you report that the tics were better when you finish up with the script? will she give more or longerm?

 

 

Faith

[thereishope]

His tics are basically gone?! I'm so happy for you. Have you called the ped yet? If you can get him to the office while the tics are gone so she can see for herself. How can she even deny the connection?

 

You are finally getting your answers. I'm so happy for you!

 

I wouldn't be surprised if she wants him off abs to see if they come back. If that happens just outright say to her that if he goes off the abs, the inflammation will return and you rather his brain not be damaged any more than it is. Sometimes those cut and dry sentences can make a difference.

[Tattoomom]

tatoomom

as posted on the other thread, ..... is this the first time on abx? and is it usual or unusual to see a cessation in tics for a couple days or more? what will your doc do if you report that the tics were better when you finish up with the script? will she give more or longerm?

 

 

Faith

 

 

This is the first time he's ever been on Zithromax. He took Amoxicillin back in October for an ear infection and I didn't notice any benefit there. He's been ticcing almost constantly since October (had swine flu and they flared up) I have no idea what the doctor will say or do.

[Tattoomom]

His tics are basically gone?! I'm so happy for you. Have you called the ped yet? If you can get him to the office while the tics are gone so she can see for herself. How can she even deny the connection?

 

You are finally getting your answers. I'm so happy for you!

 

I wouldn't be surprised if she wants him off abs to see if they come back. If that happens just outright say to her that if he goes off the abs, the inflammation will return and you rather his brain not be damaged any more than it is. Sometimes those cut and dry sentences can make a difference.

 

 

Unfortunately, today I can see his tics returning so she didn't get to see the improvement that we saw while on the abx. He starts his next pack tomorrow so hopefully we will see the tics subside again. I put a call in to the Ped. this morning back have not heard back yet. I'm trying not to get excited just in case it was a coincidence? I don't know.... so confusing!!

[matis_mom]

His tics are basically gone?! I'm so happy for you. Have you called the ped yet? If you can get him to the office while the tics are gone so she can see for herself. How can she even deny the connection?

 

You are finally getting your answers. I'm so happy for you!

 

I wouldn't be surprised if she wants him off abs to see if they come back. If that happens just outright say to her that if he goes off the abs, the inflammation will return and you rather his brain not be damaged any more than it is. Sometimes those cut and dry sentences can make a difference.

 

 

Unfortunately, today I can see his tics returning so she didn't get to see the improvement that we saw while on the abx. He starts his next pack tomorrow so hopefully we will see the tics subside again. I put a call in to the Ped. this morning back have not heard back yet. I'm trying not to get excited just in case it was a coincidence? I don't know.... so confusing!!

Tatoomom,

I would recommend you take a short little video clip of him every day, and that way there will be no question about it. Or you can just keep a very detailed journal. I think if you bring your pediatrician "hard proof", she won't be able to dismiss it.

[T_Mom]

Mati'smom has a good suggestion here--Could you ask for a month of full-strength to see/document what happens? Keep detailed records, every 3 hours # of symptoms, and go from there?

 

 

Asking your doctor to call Dr L for a phone appt. -- re: antibiotic use, or call Dr. Leckman, Dr. T., etc. is another idea. Seems you may need some Pandas experience beyond your local doctor.

[colleenrn]

The first time I used Zithromax for my daughter I was given a Z-pack. I saw some improvement. When I learned here that an extended course is usually needed, my doc gave her 2 Zpacks, BUT told me to give the first pack then wait 5 days and start the second pack. When she was off it for those 5 days her symptoms came back, not as bad as before, but definitely back. When she started taking it everyday her symptoms were much better.

The fact that he responded so well to the Zith is great evidence for keeping him on it for a longer course and observe how he responds. I am sure you have read on this forum that negative strep titers in no way rule out PANDAS. That is just misinformation that a lot of physicians are going on, unfortunately.

 

Colleen

[momaine]

Can you print out the information that is on this site that states that titers are not always high in these kids and give it to her? Can you pay to have her consult with one of the specialists? When I let my dr. know that I was willing to pay for her to consult, it seemed like she really knew I was serious. I asked her point blank how far she was willing to go to help my dd based on what she knew so that I could line up someone else if needed. She was willing to help but then I still got scared and went to Dr. Trifiletti and I am SO glad to have him on board.

 

Angela

[Tattoomom]

The first time I used Zithromax for my daughter I was given a Z-pack. I saw some improvement. When I learned here that an extended course is usually needed, my doc gave her 2 Zpacks, BUT told me to give the first pack then wait 5 days and start the second pack. When she was off it for those 5 days her symptoms came back, not as bad as before, but definitely back. When she started taking it everyday her symptoms were much better.

The fact that he responded so well to the Zith is great evidence for keeping him on it for a longer course and observe how he responds. I am sure you have read on this forum that negative strep titers in no way rule out PANDAS. That is just misinformation that a lot of physicians are going on, unfortunately.

 

Colleen

 

Colleen,

 

This was exactly our experience!! Wow!

 

So, did your daughter continue to take the Zith?

 

My son starts his second pack today and I'm confident it will help. I'm just so worried about what happens when he's finished.

[colleenrn]

Tatoomom,

Yes. My 3 oldest kids have been taking Zithromax for 15 months.

 

Colleen