antibiotics and stomach pain

[Iowamom]

Hi,

 

Thanks for thr replies and encouragement--it's nice to know we're not alone!

 

She's been on Zithromax (250 mg/day) for 3 days now, and what a difference! WIthin the first day, not only did her stomach pain disappear, but the residual PANDAS symptoms went into remission as well. Hmmmmm......very interesting. I would have to say that Zithromax is the antibiotic of choice for her. As for how long to keep her on it, well.....I would say AT LEAST until she was in her early twenties, but more likely much longer than that. After losing all the progress she had made after her first IVIG, there is NO WAY I'm taking a chance on another relapse. When we had IVIG the first time, less was known about the role antibiotics plays in immune modulation and PANDAS, but I believe that clearly it is an important component in managing PANDAS. Yes, I'm worried about the possibility of antibiotic resistance, but we can deal with that later if we have to, right now PANDAS is an immediate concern. One of our doctors was trying to discourage us from treating her with IVIG by saying "IVIG carries serious side effects," but as I told her, PANDAS carries serious side effects. So that's how I feel about long term antibiotics.

 

I hate to introduce any additional source of worry for those families who have undergone a round of IVIG (or are considering it) by mentioning relapses, but information is power, as they say . When we first received IVIG it was touted as a cure, so I was not as vigilant as I am now. I was happy and delighted to be able to put PANDAS behind us, and move on with life. Honestly, we were so traumatized by the experience that I never wanted to even think about it! But....after having gone through a relapse, I have to say that it's not as terrifying as I thought it would be--we knew what it was, and knew how to handle it this time around, unlike the first time. Funny enough, you think you can;t handle any more, but it's possible to surprise yourself with your strength. So overall, I'm taking thr attitude of learning as much as I can, remaining cautiously optimistic, and keeping an eye out for further relapses. Also....I hate to say this (and I hope and pray that I am wrong), but I wonder if puberty really will take care of everything. I have a bad feeling that Drs don;t understand as much about PANDAS as they believe, and we as parents may have to continue some form of vigilance into the late teen/early twenties. But....who knows?

 

As for the typical symptoms of strep, I don;t think all of our PANDAS kids do present them all the tiem. When my daughter was first treated with IVIG, her PANDAS was at its worst, and yet her strep titers were normal. During her relapse, I believe it wasn't necessarily strep, but a slew of viral attacks and upper respiratory infections that were to blame.

 

So, thank you again for the resposes. I'll keep you up to date on the good, the bad and the ugly. Hopefully it will be mostly good.

 

Shelly

 

Shelly,

 

Hello. I am pretty certain you are the ones across the hall from us when we had our son out in Chicago. I am glad you got a different abx and it's working w/o the tummy troubles and things are improving for your girl. Our first two weeks have been up and down. The first week was pretty rocky; the second week more like waves. The symptoms have waxed & waned, not nearly as intense or as long lived. This morning was pretty rough, but he is doing better. Felt like a one step back day. We emailed Dr. K a couple days ago with our concern that boosting the immune system with IVIG and fighting an resistant strep infection on only 500 mg Augmentin a day at the same time may prove difficult post IVIG. (His titers have been very high & higher He replied immediately and increased the Augmentin to 875mg/2x day for 14 days. Now we're pushing the probiotic a bit harder. Evan has complained of some stomach issues, but I think we're doing better. I know Augmentin can be a tough one for some.

I'm anxious to see what this next week brings.

 

Thanks again for treating us to Starbucks! It was great to meet you folks.

 

Dawn

[sf_mom]

Fantastic News.... My hope of all hopes would never to see a relapse as it feels like we've come so far. BUT, as you said, I now know what to do. I'm glad your daughter is doing better.

 

-Wendy

 

Hi,

 

Thanks for thr replies and encouragement--it's nice to know we're not alone!

 

She's been on Zithromax (250 mg/day) for 3 days now, and what a difference! WIthin the first day, not only did her stomach pain disappear, but the residual PANDAS symptoms went into remission as well. Hmmmmm......very interesting. I would have to say that Zithromax is the antibiotic of choice for her. As for how long to keep her on it, well.....I would say AT LEAST until she was in her early twenties, but more likely much longer than that. After losing all the progress she had made after her first IVIG, there is NO WAY I'm taking a chance on another relapse. When we had IVIG the first time, less was known about the role antibiotics plays in immune modulation and PANDAS, but I believe that clearly it is an important component in managing PANDAS. Yes, I'm worried about the possibility of antibiotic resistance, but we can deal with that later if we have to, right now PANDAS is an immediate concern. One of our doctors was trying to discourage us from treating her with IVIG by saying "IVIG carries serious side effects," but as I told her, PANDAS carries serious side effects. So that's how I feel about long term antibiotics.

 

I hate to introduce any additional source of worry for those families who have undergone a round of IVIG (or are considering it) by mentioning relapses, but information is power, as they say . When we first received IVIG it was touted as a cure, so I was not as vigilant as I am now. I was happy and delighted to be able to put PANDAS behind us, and move on with life. Honestly, we were so traumatized by the experience that I never wanted to even think about it! But....after having gone through a relapse, I have to say that it's not as terrifying as I thought it would be--we knew what it was, and knew how to handle it this time around, unlike the first time. Funny enough, you think you can;t handle any more, but it's possible to surprise yourself with your strength. So overall, I'm taking thr attitude of learning as much as I can, remaining cautiously optimistic, and keeping an eye out for further relapses. Also....I hate to say this (and I hope and pray that I am wrong), but I wonder if puberty really will take care of everything. I have a bad feeling that Drs don;t understand as much about PANDAS as they believe, and we as parents may have to continue some form of vigilance into the late teen/early twenties. But....who knows?

 

As for the typical symptoms of strep, I don;t think all of our PANDAS kids do present them all the tiem. When my daughter was first treated with IVIG, her PANDAS was at its worst, and yet her strep titers were normal. During her relapse, I believe it wasn't necessarily strep, but a slew of viral attacks and upper respiratory infections that were to blame.

 

So, thank you again for the resposes. I'll keep you up to date on the good, the bad and the ugly. Hopefully it will be mostly good.

 

Shelly

[sf_mom]

Dawn,

 

So glad your son is doing better as well. Can't wait to hear how the increased dose of Augmentin works. Seems like it is doing the trick for most.

 

-Wendy

 

Hi,

 

Thanks for thr replies and encouragement--it's nice to know we're not alone!

 

She's been on Zithromax (250 mg/day) for 3 days now, and what a difference! WIthin the first day, not only did her stomach pain disappear, but the residual PANDAS symptoms went into remission as well. Hmmmmm......very interesting. I would have to say that Zithromax is the antibiotic of choice for her. As for how long to keep her on it, well.....I would say AT LEAST until she was in her early twenties, but more likely much longer than that. After losing all the progress she had made after her first IVIG, there is NO WAY I'm taking a chance on another relapse. When we had IVIG the first time, less was known about the role antibiotics plays in immune modulation and PANDAS, but I believe that clearly it is an important component in managing PANDAS. Yes, I'm worried about the possibility of antibiotic resistance, but we can deal with that later if we have to, right now PANDAS is an immediate concern. One of our doctors was trying to discourage us from treating her with IVIG by saying "IVIG carries serious side effects," but as I told her, PANDAS carries serious side effects. So that's how I feel about long term antibiotics.

 

I hate to introduce any additional source of worry for those families who have undergone a round of IVIG (or are considering it) by mentioning relapses, but information is power, as they say . When we first received IVIG it was touted as a cure, so I was not as vigilant as I am now. I was happy and delighted to be able to put PANDAS behind us, and move on with life. Honestly, we were so traumatized by the experience that I never wanted to even think about it! But....after having gone through a relapse, I have to say that it's not as terrifying as I thought it would be--we knew what it was, and knew how to handle it this time around, unlike the first time. Funny enough, you think you can;t handle any more, but it's possible to surprise yourself with your strength. So overall, I'm taking thr attitude of learning as much as I can, remaining cautiously optimistic, and keeping an eye out for further relapses. Also....I hate to say this (and I hope and pray that I am wrong), but I wonder if puberty really will take care of everything. I have a bad feeling that Drs don;t understand as much about PANDAS as they believe, and we as parents may have to continue some form of vigilance into the late teen/early twenties. But....who knows?

 

As for the typical symptoms of strep, I don;t think all of our PANDAS kids do present them all the tiem. When my daughter was first treated with IVIG, her PANDAS was at its worst, and yet her strep titers were normal. During her relapse, I believe it wasn't necessarily strep, but a slew of viral attacks and upper respiratory infections that were to blame.

 

So, thank you again for the resposes. I'll keep you up to date on the good, the bad and the ugly. Hopefully it will be mostly good.

 

Shelly

 

Shelly,

 

Hello. I am pretty certain you are the ones across the hall from us when we had our son out in Chicago. I am glad you got a different abx and it's working w/o the tummy troubles and things are improving for your girl. Our first two weeks have been up and down. The first week was pretty rocky; the second week more like waves. The symptoms have waxed & waned, not nearly as intense or as long lived. This morning was pretty rough, but he is doing better. Felt like a one step back day. We emailed Dr. K a couple days ago with our concern that boosting the immune system with IVIG and fighting an resistant strep infection on only 500 mg Augmentin a day at the same time may prove difficult post IVIG. (His titers have been very high & higher He replied immediately and increased the Augmentin to 875mg/2x day for 14 days. Now we're pushing the probiotic a bit harder. Evan has complained of some stomach issues, but I think we're doing better. I know Augmentin can be a tough one for some.

I'm anxious to see what this next week brings.

 

Thanks again for treating us to Starbucks! It was great to meet you folks.

 

Dawn

[shjames]

Dawn,

 

Yes, that was me, and you are welcome! IVIG is never easy, but Starbucks helps.

 

I'm so glad to hear your son is doing better, but don't get discourage dif there are ups and downs. Healing seems to be a process, but at least you're going in the right direction!

 

Take care,

 

Shelly