IVIG dosing

[nevergiveup]

Worried Dad, I can totally relate to the winter flu and virus issues. After years of miserable winters with my dd sick pretty much 30 school days per year. My dd had a horrible overnight attack last may that rocked our world, she was 12 at the time and we had thought her Pandas was in remission. She has spent the last 6 months recovering. And although she is laughing and loving her friends again and school, we have decided not to enroll her in school this winter. She will be taking a break until March. She is very upset but we feel she is still recovering and we know we could loose her again if she has a bad relapse. I have always struggled with the need to protect her and the desire to let her lead a normal preteen life. Last May tipped the scales for us, and we are now leaning towards the protection side of things because she was so ill in MAY, JUNE and JULY she wasn't leading a normal preteen life anyway.

Its been an extremely hard decision, but we are going to try it to see how it goes.

[Ellen]

Mom MD, I remember you said that your son had an allergic reaction to PEX, so in your case, I think it would be especially important to pretreat with Benedryl and mention this to whoever is doing the IVIG. Also, there might be some form of IVIG that he is less likely to react to and if I were you, I would request that. We are most likely going to do monthly IVIG with Dr. Bouboulis starting some time soon, and since my son has low IGA, Dr. B will give a use a low IGA version to reduce the likelihood of a reaction. You may want to call him and get his opinion on the best brand to use for your son. Since he is an allergist/immunologist, he would be a good source of info on that.

 

Ellen

 

I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Does anyone have anything to add...

[Worried_Dad]

Yeah, I've thought about this... but until a few months ago, we had no local docs who would prescribe the abx for our PANDAS son, much less our other boys. The DAN doc we finally found is awesome... but she's out of network for our insurance and VERY expensive. (And of course, we're still in mega debt from the 2 rounds of IVIG last summer.) So we haven't started taking our other boys to her yet.

 

We did get everybody else in the family tested for strep (throat cultures) to make sure we're not obvious carriers. No positives... but if it's harboring somewhere other than the throat, not sure we'd know.

 

It's certainly something to consider. May have to try it, just as a precaution. For now, we've just repeatedly nagged school and daycare to alert us the minute there are any reported strep cases around our other 2 boys. And our PANDAS son, of course, is home-schooling. (He hasn't been at school for any length of time for 2 1/2 years now.)

 

Thanks for the tip!

 

 

I'm so glad your son is showing improvement. FANTASTIC NEWS!!!

 

Have you considered putting your other boys on prophalaxis antibiotic for the winter months? I know keeping our 2 1/2 year old twins healthy is key to the health of our family..... We have them on homeopathic anti-virals http://syntrion.eu/usa/products/syimmune-tablets and because the 2 1/2 year boy is suspected of PANDAs he is antibiotics until further testing is completed. We also have rapid strep tests at home bought on line to swab when needed.

 

-Wendy

[mom md]

So the nurse called and said we were set up for IVIG next Monday and Wed 1mg/kg at Levine Children's hospital in Charlotte. That dose not work with my schedule but isn't supposed to be done on two consecutivedays anyway?

[FallingApart]

that dose should be 1 mg/kg EACH DAY. I found this confusing for the first few infusions. Good luck to you. We are in the hospital right now doing our monthly infusion.

[mom md]

I know it is 1mg/kg each day but should the days be back to back? Doing one day on Monday and then one on Wed does not seem right.

that dose should be 1 mg/kg EACH DAY. I found this confusing for the first few infusions. Good luck to you. We are in the hospital right now doing our monthly infusion.

[Worried_Dad]

That seems odd to me, too, Mom MD. We've done 3 rounds of IVIG with Dr. K in Chicago and - as you said - it's always been over 2 consecutive days.

 

 

I know it is 1mg/kg each day but should the days be back to back? Doing one day on Monday and then one on Wed does not seem right.

that dose should be 1 mg/kg EACH DAY. I found this confusing for the first few infusions. Good luck to you. We are in the hospital right now doing our monthly infusion.

[FallingApart]

I'm sorry. I misunderstood. We are on our 5th IVIG and all have been consecutive days and at the dose you mentioned. Did they say why they are doing it that way?

[mom md]

Nevermind. The nurse messed up and it is two consecutive days. I am just glad I knew enough to ask or she would have messed it up. I am not sire if she is new or they just don't schedule a lot of IVIG at the allergist's office. We are set up though now for Monday and Tuesday next week at the Children's hospital.

Yeah!!!