IVIG and Antibiotics

[mama2alex]

I'm meeting with the new pediatrician again tomorrow and need some input. He let us try 375mg Azith per day for a month because we thought there might be more strep left (maybe in his gut or elsewhere). So we're almost done with the month and his symptoms have not improved at all. So tomorrow morning I will have to explain why I want Alex to remain on the antibiotics long-term. I'm okay with lowering the dose back to 250mg, but I'm not sure what he'll say. We may be doing IVIG as soon as next Tuesday and I don't want to risk having a break between courses of anitbiotics. Can anyone help me with an explanation of why we need to be on 250mg Azith DURING and AFTER IVIG? He's somewhat conservative about abx and I may need to convince him.

 

I should have this all down by now, I know, but I've had a cold, my brain is fuzzy, I haven't had a full nights sleep in over a week and I'm just TIRED. Any help would be much appreciated!

[sf_mom]

Just met with Fredrick Lloyd yesterday and he was SUPER helpful with Romy and gave us a prescription for a YEAR, 200 m.g. of Azithromycin daily. He also referred us to Lewis again... this time for Romy. He is great listener. Ordered any lab I directed him too.

 

I think all you have to say to him is due to the seriousness of your son's condition antibiotics alone will no longer do the trick, he has no antibodies to wage the war going on in his body. Remember it takes antibiotic plus antibodies to mount a response to the underlying bacteria/auto-immune response. Dr. Lewis believes this to be true and why he is willing to treat your son with IVIG (donor antibodies). He also took several articles/papers from me to read..... included was Madeleine Cunnningham's paper (which he might have already read) and the presence of the S. Pyogenes in Kawasaki's study. I jokingly said, he been chosen to become an expert.... he laughed and said he was willing to help as directed, just keep giving him the information. I even told him what the IgG results would be once they are received........ low end of normal.

 

-Wendy

[EAMom]

Dr. Lewis was the one who told us that Azith (250mg/day 54 pounds) would be safe for our dd to remain on for YEARS....so if you can get Dr. Lewis to tell your ped that the abs are safe long-term, that might make your ped feel better.

 

However, if you didn't have any improvement on 1 mo. of Azith, I wonder if you should try a high dose of Augmentin (if you haven't already done that). It seems that there are some kids that just do better on one antibiotic vs. the other.

 

Also, have to checked family members (throat cultures) to make sure there are no carriers in the household?

 

Can anyone help me with an explanation of why we need to be on 250mg Azith DURING and AFTER IVIG?

 

The easy answer is that if you son gets another strep infection, that can "set the wheels of PANDAS" into motion all over again, and the benefit of IVIG will be undone.

 

Is your doctor primarrily objecting to the dose of Azith. or the long term abs?

[mama2alex]

Just met with Fredrick Lloyd yesterday and he was SUPER helpful with Romy and gave us a prescription for a YEAR, 200 m.g. of Azithromycin daily. He also referred us to Lewis again... this time for Romy. He is great listener. Ordered any lab I directed him too.

 

I think all you have to say to him is due to the seriousness of your son's condition antibiotics alone will no longer do the trick, he has no antibodies to wage the war going on in his body. Remember it takes antibiotic plus antibodies to mount a response to the underlying bacteria/auto-immune response. Dr. Lewis believes this to be true and why he is willing to treat your son with IVIG (donor antibodies). He also took several articles/papers from me to read..... included was Madeleine Cunnningham's paper (which he might have already read) and the presence of the S. Pyogenes in Kawasaki's study. I jokingly said, he been chosen to become an expert.... he laughed and said he was willing to help as directed, just keep giving him the information. I even told him what the IgG results would be once they are received........ low end of normal.

 

-Wendy

 

Thanks Wendy! THis puts my mind at ease.

[mama2alex]

Dr. Lewis was the one who told us that Azith (250mg/day 54 pounds) would be safe for our dd to remain on for YEARS....so if you can get Dr. Lewis to tell your ped that the abs are safe long-term, that might make your ped feel better.

 

However, if you didn't have any improvement on 1 mo. of Azith, I wonder if you should try a high dose of Augmentin (if you haven't already done that). It seems that there are some kids that just do better on one antibiotic vs. the other.

 

Also, have to checked family members (throat cultures) to make sure there are no carriers in the household?

 

Can anyone help me with an explanation of why we need to be on 250mg Azith DURING and AFTER IVIG?

 

The easy answer is that if you son gets another strep infection, that can "set the wheels of PANDAS" into motion all over again, and the benefit of IVIG will be undone.

 

Is your doctor primarrily objecting to the dose of Azith. or the long term abs?

 

The doctor isn't objecting - I was just nervous because he seemed SO cautious about antibiotics last time we saw him. He had to have another doctor agree to it. But it sounds from Wendy like it will be fine, at least for Azithromycin. I don't know whether he would agree to high dose Augmentin though, as he was very concerned about side effects with that one. I went in there wanting to try it, and he pretty much talked me out of it.

 

Did you ever talk to Lewis about high dose Augmentin? I'm very confused about why we can't get him better with just antibiotics, but maybe he's had this going on for too long. We think his first severed exacerbation was 4 years ago, but it seems like this might have been going on with more subtle symptoms since he was a baby. Or maybe he does need the high dose Augmentin because the Azithromycin isn't strong enough.

 

I've been sick with a sore throat and my son's symptoms have increased since that started, so I had a rapid strep test and culture on Saturday - both neg. My husband is getting checked today. We both have wondered if he's a carrier - I don't think my husband has ever been diagnosed with strep since I've known him. I've been diagnosed with strep twice since Alex was born and I had a VERY sore throat both times.

 

Thanks for responding!

[nevergiveup]

Mama2alex,

 

We have tried both high dose azith and high dose aug XR both seemed to have benefits, when my dd seemed to be stagnating (sp?) We switched and she would improve again. Sometime alternating can prevent building a resistance. It was amazing how well she improved when we put her on high dose azith then it was even more remarkable the improvement on augmentin then again when her improvement did not progress back to azith. Anyway, I am glad that your IVIG is soon. What dose did they settle on for initial IVIG vs monthly?

[mama2alex]

Mama2alex,

 

We have tried both high dose azith and high dose aug XR both seemed to have benefits, when my dd seemed to be stagnating (sp?) We switched and she would improve again. Sometime alternating can prevent building a resistance. It was amazing how well she improved when we put her on high dose azith then it was even more remarkable the improvement on augmentin then again when her improvement did not progress back to azith. Anyway, I am glad that your IVIG is soon. What dose did they settle on for initial IVIG vs monthly?

 

Thanks NeverGiveUp - this is a good perspective. We did see an initial improvement on a fairly low dose of Azith, then nothing when we upped it either time (125mg to 250, then 250 to 375). Maybe we do need to try Augmentin.

 

As for monthly dose, I forgot to ask! We are doing 2g/kg initially, and I'm glad you reminded me because I should here from them tomorrow and will ask about the monthly dose then.

[EAMom]

Did you ever talk to Lewis about high dose Augmentin?

Nope. But reg. dose Augmentin didn't work that well for us and Azith. worked quite well.

 

I'm very confused about why we can't get him better with just antibiotics, but maybe he's had this going on for too long. We think his first severed exacerbation was 4 years ago, but it seems like this might have been going on with more subtle symptoms since he was a baby. Or maybe he does need the high dose Augmentin because the Azithromycin isn't strong enough.

 

I don't think it's a matter of Azith. being stronger than Augmentin (or vice versa). Azith. might be better in for certain strains of strep and Augmentin for others. It sounds like more strains in the East are resistant to Azith. However, Azith. is supposed to be better at getting intracellular strep and it is also immune modulating/anti-inflammatory.

 

If you haven't seen improvements with Azith, I think it makes total sense to try high dose Augmentin for 1 mo. and then re-evaluate. Of course you're getting IVIG soon...so that might confuse the "experiment!"

 

I think Azith. is a nice one for long term prophylactic use b/c it has a long 1/2 life...so you only have to give it daily (or less) and if you miss a dose you're still protected. IMO (I know Dr. K still rx's 1x daily Augmentin for prophylaxis) Augmentin needs to be 2x daily (like pen) to prevent strep. If you look at its 1/2 life, its not much longer than pen.

[sf_mom]

I wouldn't worry too much about Dr. Lloyd. He is very on board and gets the severity of PANDAS. I'll be interested to know your experience after your visit.

 

I would also say you've been having no progress with the current antibiotics due to a potential rise in cross reactive antibodies from recent illness/es and potentially from the recent vaccinations. Again, the antibiotic does only half the job..... the correct antibodies does the rest. Shortly he will be given the donor antibodies required and he'll improve dramatically.

 

I would give the Azithromycin more time post IVIG and then switch if there isn't FURTHER progress after several rounds of IVIG.

 

By the way, with each IVIG the cross reactive antibodies get stirred up.... causing a reaction hopefully milder and milder as each month passes. Wishing you all the best with the up coming treatment.

 

-Wendy

 

 

 

 

Mama2alex,

 

We have tried both high dose azith and high dose aug XR both seemed to have benefits, when my dd seemed to be stagnating (sp?) We switched and she would improve again. Sometime alternating can prevent building a resistance. It was amazing how well she improved when we put her on high dose azith then it was even more remarkable the improvement on augmentin then again when her improvement did not progress back to azith. Anyway, I am glad that your IVIG is soon. What dose did they settle on for initial IVIG vs monthly?

 

Thanks NeverGiveUp - this is a good perspective. We did see an initial improvement on a fairly low dose of Azith, then nothing when we upped it either time (125mg to 250, then 250 to 375). Maybe we do need to try Augmentin.

 

As for monthly dose, I forgot to ask! We are doing 2g/kg initially, and I'm glad you reminded me because I should here from them tomorrow and will ask about the monthly dose then.

[nevergiveup]

All great advise on abx, I think the key is high dose abx. Your son is getting a very strong dose of ivig. Remember to have him drink lots of water starting 24 hours prior and during IVIG's. (I cannot emphasize this enough) This will help with the headaches a lot. Also "stirring up the antibodies" is one nice way to put it. Although some kids don't have this issue, many do. As my daughter says " it(IVIG) can really make the OCD bad afterwards." But her overall health is soooooooo much better. And she will tell you that she finally feels normal after years of OCD. She gets another one next week so she is not looking forward to a slight set back. I am hoping after several more she will not have "the stirring up of the antibodies". It lasts now about 3 days. I look foward to hearing about your sons progress and healing.

[mama2alex]

Thanks! You guys are my lifeline.