Follow-up trip & Dentist protocol

[JAG10]

Hi Friends,

 

We returned from our 5 day trip to Chicago (if anybody decides to drive from the north east coast, Cleveland is a good halfway point and Metroparks Zoo is FANTASTIC!!). DD10 is now 9 weeks post IVIG and we went for a follow-up and once-over for my younger dd7 while we were at it. Dr. K was VERY pleased/giddy with Court's progress at this point! I've posted that I'm pleased too, but it is reassuring to hear it from the doc who sees so many. We talked about expectations clinically and our setting expectations for her academically. He felt my younger daughter was fine, but giant tonsils and adenoids that need to come out.

 

Dr. K discussed the importance of treating infections in anyone in the household aggressively. How OCD is Court's sore throat for strep or infections and to be vigilant. So, it was interesting what happened at the dentist today. Both girls had appts for check-ups. I updated the medical history and was fully expecting the weird or vacant looks regarding IVIG/PANDAS. To the contrary, I was pleasantly surprised! The dentist examined her, but would not let them clean her teeth. She said she needs sealant on a 12 y.o. molar, has one cavity and a few primary teeth ready to come out. She said she would not clean her teeth or do any dental work without her abx being increased. She said "She's come too far to mess this up now!" That was almost verbatim what Dr. K said on Monday! So, she wants him to fill out this form either with him calling in an increase to her abx for cleanings/dental work or write down the abx, dose and duration and she'll write the script.

 

She must have some experience with PANDAS bcs when we were leaving, she patted my back and said "Good job, Mom. I know this wasn't easy."

 

Moving mountains one bucket of soil at a time.... it's true, that's what we are all accomplishing.

 

Jill

Edited July 30, 2010 by JAG10

[Mary M]

That is such an amazing story. I literally called my dd12's dentist today to cancel her appt for Aug 9 as I just couldn't take the risk of having her receive dental work so close to the IVIg and this new, gradual progress we are seeing. Your dentist is AMAZING and should be commended for carinf so much about her patient. I am totally impressed by the care or to put it better "lack of care-that was the best thing she could have done" that she provided---wise and insightful and understanding.

Mary

from Michigan

[philamom]

Hi Jill,

You are definetely moving mountains girl! I'm so impressed with your cross country hike and equally estatic to hear your daughter is doing well post ivig! I hope at the 12 wk mark you will see even more gains!!!

[mkur]

You need to find out how and why she was familiar with PANDAS. I would like to have something to present to my dentist. I tried to get antibiotics for my son years ago but no one listened.

 

I'm so happy for you and your child. Lots of luck!

Edited July 30, 2010 by mkur

[Doug]

Yeah!!!

I am happy to hear good news.

Tracie

[dcmom]

Jag 10-

 

Awesome news! These stories of our kids getting better really lift me up!

 

On the dentist:

 

I have decided to take the opposite approach of avoiding the dentist. I now take my girls every 3 months. We haven't had flare ups with cleaning (I just continue the full strenght abs we are still on)- but I am extremely concerned of letting dental care get away from us, and them having to have anything other than a cleaning. My dentist was very understanding also, and actually looked up pandas after I talked to him about it. I think if you just tell your dentist that it is the same mechanism as rheumatic fever- they will get it.

[JAG10]

Jag 10-

 

Awesome news! These stories of our kids getting better really lift me up!

 

On the dentist:

 

I have decided to take the opposite approach of avoiding the dentist. I now take my girls every 3 months. We haven't had flare ups with cleaning (I just continue the full strenght abs we are still on)- but I am extremely concerned of letting dental care get away from us, and them having to have anything other than a cleaning. My dentist was very understanding also, and actually looked up pandas after I talked to him about it. I think if you just tell your dentist that it is the same mechanism as rheumatic fever- they will get it.

 

Yep, there were questions about rheumatic fever on their medical update form. I wrote a note to attach to the form since PANDAS doesn't quite fit a "check the box" form at the moment Dr. K wrote back to up from 250mg to 1000mg 2 days before and 3 days after.

[norcalmom]

Great dentist! the word is getting out.

What antibiotic? How much does your child weigh? Thats a big increase!

 

We are due for a cleaning too.

[JAG10]

Great dentist! the word is getting out.

What antibiotic? How much does your child weigh? Thats a big increase!

 

We are due for a cleaning too.

 

Augmentin, she is 10 y.o., 5'1" and 87lbs. Tall girl so when you add behavioral regression to a girl who physically looks older than she is, it's worse. Thankfully, it's getting better and better. She is now the older sister to our 7 y.o.; the condescending tone may not be welcome by little sis, but it is music to my ears!

[T_Mom]

Thanks for the great news JAG10 ! makes me smile.

[Johnsmom]

Sounds age appropriate behavior to me! That would be a symphony you are hearing!

 

 

Great dentist! the word is getting out.

What antibiotic? How much does your child weigh? Thats a big increase!

 

We are due for a cleaning too.

 

Augmentin, she is 10 y.o., 5'1" and 87lbs. Tall girl so when you add behavioral regression to a girl who physically looks older than she is, it's worse. Thankfully, it's getting better and better. She is now the older sister to our 7 y.o.; the condescending tone may not be welcome by little sis, but it is music to my ears!

[SmallButMighty]

Hello, my son just had IVIg and I am wondering if someone could explain why dentist visits are a concern and how to navigate -- we have one coming up. Any info you could share would be so appreciated!