Jump to content
ACN Latitudes Forums

What happens if infected post IVIG


Recommended Posts

My son was 10 weeks post IVIG and we were happy with his progress and considered him on track for recovery when he somehow got a double ear infection while taking a decent size dose of Augmentin everyday. The day after he got the infection his OCD and anxitey flared bigtime. We wrote Dr. K to ask his advice but he was out of the country. When he finally got back to us he recommended that the ear infection be treated with at least 14 Days of Zithromax . The bold was what he used in his e-mail. Unfortunately we had done only a standard 5 day course of zith and it had ended a week prior to when we finally heard back from Dr. K.. My son is still not back to where he was before the ear infection so we probably have another IVIG in our future( insurance permitting).

 

Absolutely it should be a goal post IVIG to do everything you can to keep your child illness free. If they do get ill and it is an infection, from our own experience, and what Dr. K recommended, treat the infection agressiviely and for longer then what is normally done. Maybe if we had done the 14 days of zith immediately we would have been able to put a halt to the big immune response that occured.

 

I haven't posted in a while because I didn't want to post bad news and kept hoping we could get him back on track, but it is not happening.

 

 

 

What happens if a child post IVIG does get reinfected? Does is make it impossibly for IVIG to work or set it back a little? Do you have to start all over?
Edited by Alex
Link to comment
Share on other sites

Alex, thanks for your response and I am sorry you son isn't doing well right now. This is really hard. How do we keep our kids from getting infections? It is impossible. Are the effects of IVIG cumulative? The more you have the better you continue to get and less likely to be as severe? Was your son put on 500 mg azithro daily?

 

 

My son was 10 weeks post IVIG and we were happy with his progress and considered him on track for recovery when he somehow got a double ear infection while taking a decent size dose of Augmentin everyday. The day after he got the infection his OCD and anxitey flared bigtime. We wrote Dr. K to ask his advice but he was out of the country. When he finally got back to us he recommended that the ear infection be treated with at least 14 Days of Zithromax . The bold was what he used in his e-mail. Unfortunately we had done only a standard 5 day course of zith and it had ended a week prior to when we finally heard back from Dr. K.. My son is still not back to where he was before the ear infection so we probably have another IVIG in our future( insurance permitting).

 

Absolutely it should be a goal post IVIG to do everything you can to keep your child illness free. If they do get ill and it is an infection, from our own experience, and what Dr. K recommended, treat the infection agressiviely and for longer then what is normally done. Maybe if we had done the 14 days of zith immediately we would have been able to put a halt to the big immune response that occured.

 

I haven't posted in a while because I didn't want to post bad news and kept hoping we could get him back on track, but it is not happening.

 

 

 

What happens if a child post IVIG does get reinfected? Does is make it impossibly for IVIG to work or set it back a little? Do you have to start all over?

Link to comment
Share on other sites

My son was 10 weeks post IVIG and we were happy with his progress and considered him on track for recovery when he somehow got a double ear infection while taking a decent size dose of Augmentin everyday. The day after he got the infection his OCD and anxitey flared bigtime. We wrote Dr. K to ask his advice but he was out of the country. When he finally got back to us he recommended that the ear infection be treated with at least 14 Days of Zithromax . The bold was what he used in his e-mail. Unfortunately we had done only a standard 5 day course of zith and it had ended a week prior to when we finally heard back from Dr. K.. My son is still not back to where he was before the ear infection so we probably have another IVIG in our future( insurance permitting).

 

Absolutely it should be a goal post IVIG to do everything you can to keep your child illness free. If they do get ill and it is an infection, from our own experience, and what Dr. K recommended, treat the infection agressiviely and for longer then what is normally done. Maybe if we had done the 14 days of zith immediately we would have been able to put a halt to the big immune response that occured.

 

I haven't posted in a while because I didn't want to post bad news and kept hoping we could get him back on track, but it is not happening.

 

 

 

What happens if a child post IVIG does get reinfected? Does is make it impossibly for IVIG to work or set it back a little? Do you have to start all over?

 

Hi alex .....are you seeing doc k or doc b....i thought doc b did the last ivig....couldn't you have called him....

or was doc b still on a curve and looking for doc k's lead....

you're not on monthly ivig's

and how old is your boy??

Link to comment
Share on other sites

We also had an ear infection while on Augmentin + Zithromax, they had to add Rifampin. I wish someone would come up with a protocol for after IVIG/ plasmapheresis, so we are not scrambling around when things start going downhill. We are hoping to do plasmapheresis at the end of July (waiting to make sure we are strep-free here). That is the one thing that is stressing me out, the feeling that strep is everywhere and even if we do plasmapheresis it may be for naught if he gets re-infected right after.

Link to comment
Share on other sites

We also had an ear infection while on Augmentin + Zithromax, they had to add Rifampin. I wish someone would come up with a protocol for after IVIG/ plasmapheresis, so we are not scrambling around when things start going downhill. We are hoping to do plasmapheresis at the end of July (waiting to make sure we are strep-free here). That is the one thing that is stressing me out, the feeling that strep is everywhere and even if we do plasmapheresis it may be for naught if he gets re-infected right after.

 

who are you doing plasmaphereis with...doc k

is it getting covered by insurance....

i feel like that might be a better 1, 2 process....pheresis then ivig...but i could be wrong

Link to comment
Share on other sites

What happens if a child post IVIG does get reinfected? Does is make it impossibly for IVIG to work or set it back a little? Do you have to start all over?

 

In our case, we had essentially 6 months until our daughter had a fever and with a rapid return of many of the symptoms. This was despite staying on antibiotics. It was not clear to us whether the fever was due to a bacterial or viral infection. The symptoms were not as bad as the chaos that started the whole mess (probably 60% of the worst). We waited a month in hopes that the normal pattern of the exacerbation that we had observed pre-IVIG (i.e., 2 week ramp, 1 week plateau, 4-5 week fall) would happen. We had the ramp, the plateau and the fall, but the baseline did not return to the pre-fever (post-IVIG) point -- i.e., we had a baseline change.

 

I know, not the best news, but that's what happened in our case. We had 6 months of calm and things are settling, but we're not back to "normal".

 

Buster

Link to comment
Share on other sites

Mati's mom-

 

OR maybe you will be lucky?

 

My dd had pex in October. She had a complete and immediate remission of symptoms.

 

She got H1N1 in November, and within 25 hours of fever subsiding, was deteriorating fast into another full blown episode. We got her on a month long steroid burst within three days, which totally stopped the decline by the second dose.

 

She is now stable. I would say we haven't gotten back to the 110% immediate post pex level, but she is probably at 95%, which we are really happy about. She does have flares if she is exposed to strep. Thankfully- she hasn't been sick since. I will be a basket case next time she is sick, but plan to have steroids in the closet to tamp down any immune overreaction.

 

Sigh.

Link to comment
Share on other sites

Mati's mom-

 

OR maybe you will be lucky?

 

My dd had pex in October. She had a complete and immediate remission of symptoms.

 

She got H1N1 in November, and within 25 hours of fever subsiding, was deteriorating fast into another full blown episode. We got her on a month long steroid burst within three days, which totally stopped the decline by the second dose.

 

She is now stable. I would say we haven't gotten back to the 110% immediate post pex level, but she is probably at 95%, which we are really happy about. She does have flares if she is exposed to strep. Thankfully- she hasn't been sick since. I will be a basket case next time she is sick, but plan to have steroids in the closet to tamp down any immune overreaction.

 

Sigh.

 

hi dcpom...

who did you do pex with????

you never did ivig to follow up???

Link to comment
Share on other sites

Dc mom this is good to know. Who do you see? What dose prednizone? My son took 50 mg prednizone for really bad headache on Sat. (finished with IVIG on Friday) on Sunday morning his OCD was pretty good. That only lasted until Sun. night though. We are now turning back the pages really bad.

 

quote name='dcmom' date='May 26 2010, 02:54 PM' post='69059']

Mati's mom-

 

OR maybe you will be lucky?

 

My dd had pex in October. She had a complete and immediate remission of symptoms.

 

She got H1N1 in November, and within 25 hours of fever subsiding, was deteriorating fast into another full blown episode. We got her on a month long steroid burst within three days, which totally stopped the decline by the second dose.

 

She is now stable. I would say we haven't gotten back to the 110% immediate post pex level, but she is probably at 95%, which we are really happy about. She does have flares if she is exposed to strep. Thankfully- she hasn't been sick since. I will be a basket case next time she is sick, but plan to have steroids in the closet to tamp down any immune overreaction.

 

Sigh.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...