antibiotics and stomach pain

[shjames]

Hi,

 

We just returned form Dr. K last week after a second round of IVIG (whew.....glad that's over!), and my daughter is now on 500 mg Augmentin a day in the am. The problem is that she's having stomach pain with the Augmentin, and I don't know what to do about it! She is also currently taking probiotics as well, but I beleive we may have to switch antibiotics.

 

She was taking Keflex after her first IVIG (3 yrs ago), and I wonder if it would be a better choice, or if it has lost the efficacy after 3 yrs of use? Hmmmmm.......any thoughts on the "best" antibiotic to prevent PANDAS relapse, and one that has little chance of stomach upset?

 

Thanks!

 

Shelly

[ShaesMom]

Have you tried giving it with food? could be she is allergic to augmentin.

 

So I have to ask--did your daughter have a relaspe of her Pandas symptoms? Did she get another strep infection?

[EAMom]

Hi Shelly,

 

I am also curious as to what happened in the 3 years, to cause a need to repeat IVIG?? Was your dd on antibiotics the whole time (which one? full-strength)? did she get another strep infection? How old is she now? Was she 100% for 3 years and then had a relapse?

 

We'd love to hear your story as there are a lot of parents on this forum whose kids have had IVIG in the past few months (or are thinking of having IVIG soon) and would love to know what to expect in the future.

 

BTW, my dd is on Azith. 250mg/day (54 pounds)...no issues with stomach pains. I would think Keflex would be okay to use as well?

[sf_mom]

I would also love to hear more about your story..... Our son just completed IVIG about 4 weeks ago and we are trying to figure out the long term plan regarding additional IVIG considering current deficiencies and antibiotics.

 

Our son is 45 pounds and on Azithromycin 250 m.g./per day no problem.

 

Thanks, Wendy

[EAMom]

I did find a post from last month, that explains more http://www.latitudes.org/forums/index.php?...art=#entry38640

 

Shelly, did you just do prophylactic antibiotics for 1 year after IVIG and then stop?

 

Did you consider the 1st IVIG to be completely sucessful (until the year of infections)?

 

How long after the first IVIG did it take for your dd to be 100%?

[colleenrn]

My kids are on Zith 250/day for one year with no stomach problems. Sometimes it takes a while (week or more) and their stomachs get "used" to the Augmentin. When my kids were younger and took Augmentin for ear infections, the first several days it gave them diarrhea and stomach aches, then it seemed like their bodies got used to it and they were fine. Do you give it with food?

 

Colleen

[shjames]

Hi everyone,

 

Thanks for the replies, I appreciate them very much.

 

Yes, we do give the Augmentin with food, which helps a bit, but not enough. I emailed Dr. K, and he wants to try Zithromax instead, so I guess we'll see what happens. The idea of trying to go without prophylactic antibiotics is unthinkable, so we have to work it our one way or the other.

 

Now, for the answers to the other questions....

 

My daughter had a horrifying experience with PANDAS when she was 6 yo after multiple (treated) strep infections. That was 5 years ago, and it was a nightmare to get it diagnosed and treated. She was shockingly, unbelievably ill, completely incapacitated. She was tested for brain cancer, epilepsy, sleep apnea, behavioral disorders, celiac disease, and it seemed like everything under the sun. I discovered IVIG early on in my searching, but could not find any Drs willing to perform the treatment for PANDAS. After repeated, endless searching, I found Dr. K, 2 years later. After a consultation and some testing (bloodwork, steroid burst) we scheduled an appointment and she received IVIG. There was an immediate improvement (about 50-60% better than pre-IVIG), very noticeable, possibly because she was so incredibly ill that ANY improvement would have been dramatic.

 

The healing continued (with various bumps along the way) for almost an entire year, at which point she was 100%, or so close that it was indistinguishable from 100%. She was on prophylactic antibiotics (Keflex 500 mg/day) for 1 1/2 years, during which time she was doing terrific. Unfortunately, we stopped the Keflex on the advice of her Drs, who felt she was out of the woods and were concerned about antibiotic resistance. No surprise, she began having multiple infections, and 2 1/2 years after her first IVIG, she had a relapse. With what I know today, it seems crazy that we stopped the antibiotics, and I'm kicking myself, as you can imagine. But as Dr. K told me, we're always learning about PANDAS, and some of the previous advice has proven to be at best ineffectual, and sometimes downright wrong.

 

This time we recognized it quickly, and Dr. K gave her IVIG again 2 weeks ago today. Again, we noticed an immediate improvement after IVIG (about 30-40% better than pre-IVIG), and continued steady progress during the first week. The second week, she was about 40-50% better than pre-IVIG. Unfortunately, a week after IVIG she caught a cold and she took a half step back while she was healing. So currently, she is about 40-45% better than pre-IVIG. My hope is that this positive trend continues, and she will be 100% again soon. Although it is not as dramatic or noticeable, her progression through the healing process seems to parallel her experience the first time. I'll let you know more as we get further along, we're only at two weeks so far.

 

As to the question about her being cured, yes, at the time I did consider her cured. Now, with more information and experience, I've changed my mind about a one time cure. Now I think of the various options more as comprising a comprehensive treatment plan, rather than a cure. This doesn't change the way I feel about IVIG being the right treatment, it was (and is) the right answer in my daughter's case. It simply means that we can't forget about PANDAS, even after IVIG, even if she is 100% again. I always have to remain vigilant, at least until we get her through puberty, and then........who knows? I guess we'll deal with that when we get there.

 

Well, thanks again for the input, any questions/comments are welcome.

 

Shelly

[colleenrn]

Shelly,

How much Zith is Dr K prescribing. IMO, Zith may be better than Augmentin, just my opinion. Some do great on Augmentin.

 

Colleen

[dcmom]

Shelly,

 

Thank you so much for sharing your daughter's story.

 

I think, when they are doing well (for me anyway) it is easy to think this is in their past. I think it is a natural form of denial, and protecting one's self from so much constant worry. I think your story is so important for everyone to see, so that we know that even in the best times, pandas is still there, and we cannot let down our gaurd.

 

Wishes for continued healing for your daughter (and family)!

[EAMom]

Yes, thanks for posting Shelly! (and please keep us updated as to how things progress)

 

Dh and I were talking about how long to keep dd on abs (she's 9 now) and he said "until she is 50"....seems like a good age to me. And I'll be 85 years old making sure she takes those pills!

 

To me, 18 would be a minimum age...but the thought of these kids going off to college dorms to contract who knows what (esp. if you're not around to notice if they start to decompensate)...makes me say continue until they are done with college, and then re-evaluate.

[dcmom]

I agree EAmom. Dr Triffileti told me he had a patient that was 21 (he had seen her since she was a child), and had a relapse after contracting strep. So, although we hope and hypothesize puberty means something, I am not so convinced. Which stinks!! I hate the thought of having to continue the antibiotics indefinately. But I know that pales in comparison to if they have another episode.

 

Although I know everyone here doesn't aggree with everything in Saving Sammy. I am keeping two copies of the book. One for each daughter. When they are teens and young adults, they will listen more to something written in a book, than something I tell them, I am sure. I want them to know how debilitating (and fast) pandas can happen- so they remain vigilant. (only one is pandas, btw)

[Megs_Mom]

We also had a 3 year remission between episodes (3.5 and 6.5) so I agree with remission being the operative word. We are back in 98% remission now - well, my daughter is! I am not sure if I will ever be!

[KeithandElizabeth]

Hi Shelly:

 

I am sorry for your relapse!

 

Was it a virus or was it another strep infection that induced the relapse? I am under the impression that viruses, which are not prevented with antibiotics, can also cause the exacerbations and/or relapses.

 

I am curious as to whether or not a child who receives a successful IVIG treatment or PEX treatment shows normal symptoms of a strep infection (i.e. sore throat, fever, etc...) after their treatment? What is so hard with so many of our children is that they do not show the typical symptoms of strep and we therefore sometimes miss the opportunity to treat them as fast as we should.

 

I am happy that your second IVIG has helped your daughter......

 

Keep us posted.

 

Elizabeth

[EAMom]

I am curious as to whether or not a child who receives a successful IVIG treatment or PEX treatment shows normal symptoms of a strep infection (i.e. sore throat, fever, etc...) after their treatment? What is so hard with so many of our children is that they do not show the typical symptoms of strep and we therefore sometimes miss the opportunity to treat them as fast as we should.

 

I would suspect they would be the same in this regard as before.

[shjames]

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