I think I can sleep tonight

[EmilyK]

So we got to see Dr. B today and what a relief to have some thorough testing and some immediate treatment with long term plan. I'd had quite enough of the others with their admonishment to keep doing what we're doing (therapy and OT) and see how he is in 6 months - as if that was working for us. DS even managed to swallow the giant Augmentin pill without a hitch tonight. I'm very curious to see what all the labs bring. He was tested for everything under the sun and DS2, DH, and I are also getting testing for strep and mycoplasma titers finally. Given the rate at which DS2 and I tend to get sick, we'll no doubt turn up something. So it was worth the total 6 hours in the car and 2.5 hrs in office and lab (they were super busy today), and for the first time in a long time I feel a small measure of peace.

[Hopeny]

When I took my daughter for her first Lyme appt I was so relieved I started crying. I felt similarly as well after seeing Dr. B. Enjoy your rest!

[PANDASmcnuggetsw/fry/coke]

Emily~~I am so happy for you. A plan and peace in your heart....these are awesome things! Rest in it!

[beeskneesmommy]

Yay! Dr. B and his thorough treatment plan are responsible for taking my son very, very far. He was still so sick when we landed there a little over year ago. He was put on a heavy abx protocol and although he heerxed for a couple fo weeks, and the recovery has been saw toothed, he has improved greatly over the year's time. We are choosing to do IVig next week because he still has flares and some low level symptoms, but he is fully functional in school and on track. Good luck and warm wishes!

[bigmighty]

Be aware that the first month on Augmentin may show a couple of social and behavioral set-backs. Hang in there and don't get discouraged if you see a few changes that might seem to be for the worse. Dr. B advised us to wait it out, then add a steroid taper. After 4 1/2 months on the Augmentin (with some prednisone thrown in after 2 mo on the Aug), DS went into full remission. It has been five months and still no OCD whatsoever. This certainly does not happen for everyone, but it did in DS's case. Also, get some Florastor and/or other probiotics if you don't already have them. The antibiotics kill all of the good bacteria in the gut and your child can get a C-Dif infection if you don't replenish. Hugs and hang in there - Suzanne

[Agnes26]

Be aware that the first month on Augmentin may show a couple of social and behavioral set-backs. Hang in there and don't get discouraged if you see a few changes that might seem to be for the worse. Dr. B advised us to wait it out, then add a steroid taper. After 4 1/2 months on the Augmentin (with some prednisone thrown in after 2 mo on the Aug), DS went into full remission. It has been five months and still no OCD whatsoever. This certainly does not happen for everyone, but it did in DS's case. Also, get some Florastor and/or other probiotics if you don't already have them. The antibiotics kill all of the good bacteria in the gut and your child can get a C-Dif infection if you don't replenish. Hugs and hang in there - Suzanne

 

Suzanne, this is encouraging. Can I ask what does of Augmentin your son is on. My DD7 is on 600 ES X 2 daily. She has been for about a month. The first two weeks were great. These past two have been horrible.

 

Hope this plan works for you. I hadn't occurred to me to have Myco titers for my husband and I, so thanks for mentioning.

Edited September 12, 2012 by Agnes26

[EmilyK]

We use Culturelle and lots of Kefir, so I hope that keeps his gut in pretty good shape. Dr B did ask me to continue to keep a log of behavior. Very happy for this board pointing me in his direction!

[bigmighty]

Be aware that the first month on Augmentin may show a couple of social and behavioral set-backs. Hang in there and don't get discouraged if you see a few changes that might seem to be for the worse. Dr. B advised us to wait it out, then add a steroid taper. After 4 1/2 months on the Augmentin (with some prednisone thrown in after 2 mo on the Aug), DS went into full remission. It has been five months and still no OCD whatsoever. This certainly does not happen for everyone, but it did in DS's case. Also, get some Florastor and/or other probiotics if you don't already have them. The antibiotics kill all of the good bacteria in the gut and your child can get a C-Dif infection if you don't replenish. Hugs and hang in there - Suzanne

 

Suzanne, this is encouraging. Can I ask what does of Augmentin your son is on. My DD7 is on 600 ES X 2 daily. She has been for about a month. The first two weeks were great. These past two have been horrible.

 

Hope this plan works for you. I hadn't occurred to me to have Myco titers for my husband and I, so thanks for mentioning.

 

 

DS takes Augmentin 875 2x daily - has been since December 2011. He was on a 19 day steroid taper in February - starting at 35 mg. DS was 13 and 77 pounds when this treatment was started. He is now 14 and weighs 102. He has grown 4 inches and gained over 20 pounds since the remission started in April. He improved slightly the first two weeks, then things were horrible for the next month or so. If you haven't already done so, get on Dr. B's or Jennifer's (PA) calendar for a conference call in about a month. It will give you a chance to report on how things are going and to see if they want to explore adding steriods in the future. Best, Suzanne