New to Pandas/IVIG scheduled-advice welcome

[mama bear 1]

Hey Everyone! I have not been keeping up with all the posts of late. Was so busy in the drama of dd official Pandas diagnosis in January after positive results with steroid burst and a small improvement on a month of anitbiotics. Seeing Dr. K --we really like and trust him decided to do the IVIG based on his recommendation and seriousness of dd debilitating symptoms and age. DD is 13 and will now be taking 8th grade over since she was not able to function much since September when the rug was pulled out from under her with the sudden onset of symptoms.

 

Next week is the big week and Im a little nervous but very hopeful as well. I would love any suggestions from the warriors on this forum who have gone before. dd had high micoplasma test results. Has allergies and asthma. Most of the posts I read seem strep related so Im wondering if the post IVIG treatment will be different? It my understanding that at the 3 month post IVIG mark we should have a pretty good idea of how well it will have worked and should know by 6-9 months if she may need a 2nd round.

 

Also, does anyone know of any success stories of kids who were hit with this at 12 like my dd? Ihave heard a more than a few wonderful and encouraging stories of kids who were under 10 but not any of kids who got it when they were older. I'd appreciate any advice at all as this is such an exhausting fight. Thank you in advance for your support.

[cobbiemommy]

Has your child been tested for antibodies to strep? How about any blood work for Lyme and co-infections? Do this now before you do IVIg. I cannot recommend this strongly enough. If you wait and need to do these tests after IVIg, you are likely to get inaccurate results for up to six months because of the antibodies from the IVIg.

 

We also liked (and still do) Dr. K and he prescribed the right treatment, but for the wrong reason. We did not get insurance preapproval and thus paid a lot of money out of pocket. Turns out, our son has no antibodies of his own to strep. Finding these things out now, could pave the way to get IVIg paid for in the future as an immune disorder.

 

Mycoplasma requires more antibiotics than Augmentin, which is standard protocol for Dr. K after IVIg. Minocycline is the med of choice by most physicians for Mycoplasma.

 

Honestly, we had a wonderful four week honeymoon after the first IVIg, but at six weeks we knew already that he would need more medical intervention.

 

May peace be with you and I hope you have a wonderful experience.

 

Cobbie

[LNN]

Just a personal opinion, but until the mycoplasma is gone, IVIG will not give you the success it might give you if DD was/is infection-free. Augmentin is not the abx of choice for mycop. Here's a background article FWIW http://www.morgellons-uk.net/?p=467

[little red]

I would suggest doing a search on the topic of IVIG and mycoplasm on the forum. I agree with Cobbie. Getting the right diagnosis and using the right codes could definitely help with costs, especially since so many kids end up having the IVIG so many times.

[mama bear 1]

Thank you for your responses. DD last active infection of Micoplasma was last summer before everything went south. We unfortuantly did not get in to Dr.K until December well after she had recovered. Did test her for many other things--came back negative for Strep/Lyme-- Epstein Bar/Toxoplasma/CBC and Thyroid came back as normal.Had Immune Globulin test and it came back relatively normal (she has allergies/asthma) but showed no immune disorder. After that she was on Azithromycin 500mgs for a month and had trouble with the big pills/digestive issues (she doesnt swallow them had to break them up mix with water-smelled and tasted like cat food) Now pre IVIG has put her on Augmenton for 10 days. It comes in a liquid form. I will check with Dr.K about the antibiotic for the post IVIG and read the mycoplasma posts as well. I am so greatful for the information shared here. It helps me be a better advocate for dd and will hopefully speed up her recovery or at least lighten the load. Unfortunately,our insurance will not cover the IVIG so this will be all out of pocket.

How do you know if your child has no antibodies to strep? Is there a special test for that? Is there someone else to go to for a 2nd opinion in the Midwest? East Coast? Who would you recommend? Please let me know. Thank you all again!!

[mama bear 1]

Cobbie, having trouble searching the files. What key words would get results needed. Pls let me know. Thanks again!

Has your child been tested for antibodies to strep? How about any blood work for Lyme and co-infections? Do this now before you do IVIg. I cannot recommend this strongly enough. If you wait and need to do these tests after IVIg, you are likely to get inaccurate results for up to six months because of the antibodies from the IVIg.

 

We also liked (and still do) Dr. K and he prescribed the right treatment, but for the wrong reason. We did not get insurance preapproval and thus paid a lot of money out of pocket. Turns out, our son has no antibodies of his own to strep. Finding these things out now, could pave the way to get IVIg paid for in the future as an immune disorder.

 

Mycoplasma requires more antibiotics than Augmentin, which is standard protocol for Dr. K after IVIg. Minocycline is the med of choice by most physicians for Mycoplasma.

 

Honestly, we had a wonderful four week honeymoon after the first IVIg, but at six weeks we knew already that he would need more medical intervention.

 

May peace be with you and I hope you have a wonderful experience.

 

Cobbie