Update: One month after starting augmentin

[Debbie1]

Hi all,

 

Just wanted to keep everyone posted on our progress.

 

It's been a little over a month since dd12 finished a steroid burst and was put on augmentin. It was a rough month. She has had her share of bad days and days that seemed to be a bit better. dh and I both had strep, and dh had the flu. When things were getting better, her close friend had strep - and dd had three terrible days.

 

I am hopeful that we we may have turned the corner now. Since Sunday, she has been so much better. Her tics are still there, but greatly reduced. She has not looked this good since July. I do not know how she will be tomorrow, but I am really enjoying today.

 

If someone offered me IVIG tomorrow and told me my insurance would cover it, I would do it in a heartbeat even though she is doing much better. I am terrified that it is going to come back (I just might be posting again tomorrow!) and concerned about the strength of her immune system. To date, I have been told she is too mild for IVIG/PEX, but it just keeps coming back.

 

I have an appointment with Dr. B. next week (a consult without the kids) and all three kids are scheduled for t&a surgery at the end of December.

 

I am so worried about tomorrow when her cousins are coming for Thanksgiving. It was exposure to one of these cousins at a sleepover that started this latest exacerbation. They asked if dd could come home with them tomorrow to sleepover. I politely told them no (but was thinking NO WAY!!!). I just can't go thru that worry again right now. She seems to always get sick at sleepovers. I am banning them at least until after surgery (if not forever!) These cousins have had a ton of strep - I told my dh I want throat cultures at the door before anyone walks in our house (just joking but sort of not!) I better get a new can of Lysol before tomorrow...

 

Happy Thankgiving!

 

Debbie

[Debbie1]

Ok - my worries have been confirmed. Same cousin who started his whole exacerbation has strep again. She was supposed to come to our house tomorrow. I told her not to come. I want her brother cultured before he comes, but apparantly that is asking too much. He has already had his tonsils out (he was a strep carrier) and I am told he never gets strep now. Too bad I'm still skeptical.

[mama2alex]

Debbie,

 

So glad to hear your daughter is doing better! I hope you only have good news to post from now on. I think you are right not to risk having the cousins over. From what I've read, having the tonsils removed doesn't necessarily stop a person from being a strep carrier. Your number one priority is to protect your daughter's progress, so maybe just a quiet Thanksgiving at home without any guests would be the best way to celebrate.

[peglem]

My daughter has continued carriage after tonsillectomy. I think you're right to protect your daughter this way, but I bet you still feel really bad having to exclude relatives from your celebration. I admire you for being willing to do it anyway.

[matis_mom]

Ok - my worries have been confirmed. Same cousin who started his whole exacerbation has strep again. She was supposed to come to our house tomorrow. I told her not to come. I want her brother cultured before he comes, but apparantly that is asking too much. He has already had his tonsils out (he was a strep carrier) and I am told he never gets strep now. Too bad I'm still skeptical.

That's a tough situation but are doing the right thing. Just be thankful that they confirmed strep before your daughter got exposed!

Do the parents understand what's a stake for your daughter? I hope they do and don't judge you for protecting your daughter. Have a happy Thanksgiving!

 

Isabel

[Debbie1]

That's a tough situation but are doing the right thing. Just be thankful that they confirmed strep before your daughter got exposed!

Do the parents understand what's a stake for your daughter? I hope they do and don't judge you for protecting your daughter. Have a happy Thanksgiving!

 

Isabel

 

They have no idea what's at stake for my daughter - we have not discussed anything with them - so unfortunately, I look like the bad guy right now. I think we are going to have to explain what's been going on. I am thankful the one cousin was positive today, but I think her brother is still coming as well as other cousins so I am not sure we are in the clear.

 

Thanks for the support!

[Debbie1]

My daughter has continued carriage after tonsillectomy. I think you're right to protect your daughter this way, but I bet you still feel really bad having to exclude relatives from your celebration. I admire you for being willing to do it anyway.

 

peglem,

 

Thanks for the reply. How did your find out that your dd still has carrier problems? Is she still culturing positive?

 

Debbie

[matis_mom]

That's a tough situation but are doing the right thing. Just be thankful that they confirmed strep before your daughter got exposed!

Do the parents understand what's a stake for your daughter? I hope they do and don't judge you for protecting your daughter. Have a happy Thanksgiving!

 

Isabel

 

They have no idea what's at stake for my daughter - we have not discussed anything with them - so unfortunately, I look like the bad guy right now. I think we are going to have to explain what's been going on. I am thankful the one cousin was positive today, but I think her brother is still coming as well as other cousins so I am not sure we are in the clear.

 

Thanks for the support!

.

It's a personal decision, but once we knew what was going on, we were very open with all our family and friends. Once people know, it's much easier for them to understand the child's behavior, and your own obsession with not mixing with anyone who may have strep (or anything else!).

Is it too late for a change of plans? Could someone else host so you guys can stay clear? I don't know how long you've been dealing with this, but for a lot of families it is so hard to clear everyone again... even if your PANDAS dd doesn't get it, someone else in your household could, and they you start all over again, not only trying to test/treat everyone, but also getting your daughter back from a possible exacerbation, not fun!

Again, it's a personal decision you and your husband will have to make, but the stakes are pretty high. Maybe if the mom of the child that has strep could just get the brother tested that would give you some peace of mind.

Hope it all works out!

Isabel

[peglem]

My daughter has continued carriage after tonsillectomy. I think you're right to protect your daughter this way, but I bet you still feel really bad having to exclude relatives from your celebration. I admire you for being willing to do it anyway.

 

peglem,

 

Thanks for the reply. How did your find out that your dd still has carrier problems? Is she still culturing positive?

 

Debbie

 

Yes, she still has positive rapids from time to time. And it has been very frustrating when we go see specialists and they keep saying "she's just a carrier, she's not getting strep infections." Their implication is that carrier state is benign, cannot be causing problems for her, and a way for them to dismiss all those positive strep tests and hence, the correlation w/ exacerbations. So, I've been in denial about her being a carrier, because I know for sure that its not benign!

 

Saw her pediatrician today...he's terrific! We're going to try combo rifampin/augmentin to get rid of the carrier state...then keep her on full dose augmentin for awhile- at least until we see Dr. Latimer. Funny, the pediatrician thinks I'm so smart- I keep telling him I'm learning from other parents...he's getting collective wisdom, not just mine!

[faith]

Ok - my worries have been confirmed. Same cousin who started his whole exacerbation has strep again. She was supposed to come to our house tomorrow. I told her not to come. I want her brother cultured before he comes, but apparantly that is asking too much. He has already had his tonsils out (he was a strep carrier) and I am told he never gets strep now. Too bad I'm still skeptical.

 

 

wth? wow, what an annoying person, lol! does this kid have any symptoms that you know of (tics, etc.)? or is he just causin trouble for others, ....

 

Faith

[EAMom]

Don't feel bad Debbie...we just cancelled our Thanksgiving plans with close family friends b/c one of their dd's tested positive for strep today (they have 2 other children who could also be incubating!). Fortunately, they understand...know about our situation. We were supposed to go to the grandma's for dinner (she hosts a large party)...so dh had to call her as well. She was perhaps a bit less understanding ("what do you do about exposure from school?" etc.) It's just not worth the risk (after we had IVIG this past Aug) of exposing our PANDAS dd (or having her strep carrier sister catch it) and messing up the gains from IVIG (and possibly needing to repeat).

[Debbie1]

Yes, she still has positive rapids from time to time. And it has been very frustrating when we go see specialists and they keep saying "she's just a carrier, she's not getting strep infections." Their implication is that carrier state is benign, cannot be causing problems for her, and a way for them to dismiss all those positive strep tests and hence, the correlation w/ exacerbations. So, I've been in denial about her being a carrier, because I know for sure that its not benign!

 

Saw her pediatrician today...he's terrific! We're going to try combo rifampin/augmentin to get rid of the carrier state...then keep her on full dose augmentin for awhile- at least until we see Dr. Latimer. Funny, the pediatrician thinks I'm so smart- I keep telling him I'm learning from other parents...he's getting collective wisdom, not just mine!

 

You have been through so much. I'm glad to hear you at least have a pediatrician on your side and that you have decided to go see Dr. Latimer.

[Debbie1]

Too bad we live on opposite sides of the country. We could have had a strep-free Thanksgiving together!