A little freaked out

[JoyBop]

DS age 4 has been doing amazing the past month or so since starting Zithromax. I was starting to feel like we were out if the woods until BAM!! School called. She had 102 fever and says her throat is too sore to swallow. Bringing her to the dr on a few hours.

 

The most frustrating part is that our pharmacy screwed up her Zith. I picked up her last few bottles and they premixed it. I'm supposed to reconstitute it myself as needed. I didn't have time to bring it back bc we were headed out if town. Im panicked that I have been giving her ineffective medication as it has a short shelf life.

 

The other issue us that I've waited 3 months to get in to the infectious disease pandas specialist which is tomorrow. I'm a little freaked that I might have to let the office know she's sick and I might not be able to expose her to their patients. My PCP told me not to make the call bc she is on abx and therefore shouldn't be contagious.

 

I feel so panicked and stressed!!

[dcmom]

Stay calm

 

My daughters both got strep while on multiple antibiotics (zith plus augmentin). My ped (not great with pandas btw) promptly put them on clindamycin. Clinda is the recommended antibiotic for strep. Your daughter is young- but I would ask the ped if they would consider a round of clinda. For my kids it clearly resolved the strep (they were culture positive). Resolving the resulting autoimmunity (pandas flare) was a separate thing, for that our neuro gave us steroids, which stopped the flare up.

 

Hopefully your daughter does not have strep- there is a summer cold in my area (daughter had it) that starts with a sore throat (no fever though).

 

Our focus for the last two years has been to not try to prevent pandas, rather to manage it. We have learned that we cannot (nor would it be healthy) prevent all illness in our kiddos, BUT we can be prepared to react quickly and aggressively (as needed) to halt the pandas in its tracks.

 

Do you have a pandas doc you work with?

[nicklemama]

Listen to your PCP and keep that appt. Youve been given professional advice. If the ID doc says anything, you can tell him you followed your PCP advice.

[JoyBop]

Well I did not call the office and I will be hitting the road at 530 am to make my appointment. Both kids are double booked at 9.

 

The rapid was negative. It will be a few days before the culture comes back. The PCP said the reason her throat looks so bad is that there is a broken blood vessel on her tonsils which are so swollen. I have no idea why, but we will repeat her blood work again soon. Last month her ASO was still well over the positive range.

 

I will let you know what happens.....she is definitely very sick.

[T_Anna]

Good luck at the appointment.

T.Anna

[JoyBop]

Dcmom you asked if we have a PANDAS doc. Well not yet, really. She has seen a PANDAS Ent but he only treats Ent problems but he did refer us to the ID dr we are seeing tomorrow. It can be very anticlimactic so I dare not get excited til I see how it goes tomorrow. I have waited so long and had so many opportunities fail. Fingers crossed!!

[Dedee]

Hope things go well for you. I know how it is to get your hopes up. Please let us know how things go. Thinking of you and your family.

 

Dedee

[JoyBop]

Thanks so much Dedee. I am just blown away by the wonderful doctor I met with today. He was compassionate and took the time to not only listen but explain so many things. I am beyond thrilled! The most important thing I learned from him is that we shouldn't be chasing the titres. He said the ASO can be elevated for a while year or two and is not an indicator so long as the numbers fall, however slowly. He recommended we check every 4 months unless we have a significant reason to look, such as fever sore throat, ect. But not to check blood just to follow the titres. I think we were expending a lot of energy wondering why the titres are still positive after all these months on abx. We are switching up their antibiotics. we are going to treat DS for an active infection on Keflex for 500mg BID for 10 days and then keep her on 250 BID for long term. (She's 4 and 42 lbs) DS is going to remain on Keflex 500mg BID. We will see how they do. He also referred DS for an immunology consult that I am excited about. This dr does administer IVIG if its appropriate. I couldn't be happier with how this appointment went. It gives me great comfort to know we finally have a PANDAS specialist that understands and cares.

[cobbiemommy]

It is great that you have a doctor in your corner and they are helping you get a team of good docs to help your child. I'm so happy for you.

[tpotter]

JoyBop...where is this ID doctor who "gets" PANS? Just curious. I didn't know they existed

[JoyBop]

Just pm'ed you the info