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We went to IVIG after 21 months of Augmentine XR 1000 x2. He is 110 pounds and has not had any complications thus far. He is still on that same dose currently. Waiting on test results that Dr B ordered to monitor (I think...kidney and liver and???). We'll be at Dr B's again in 2 weeks.

Edited by 3boysmom
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CandKrich-- Hold steady. It has only been 9 days since IVIG.

 

The results of IVIG may not be seen within the first few weeks. Many families have seen a turn-around at 4 to 5 weeks.

Don't be desperate, yet. --that would be my perspective having been through it in late May for our youngest daughter (11)...I could see "glimmers" of our previous sweet child just fleeting -- but definite glimmers those first 10 days...then the improvements gradually built (after a year of horrible times.) The turn-around was marked and obvious, but not overnight!

 

I would encourage you to carefully track the behaviors, the number of times, the symptoms and perhaps "rate" the day on a scale of 1 to 10 overall. Remain objective and remind him that the IVIG is going to be working to make him completely better, so he has that expectation too...then hold steady.

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I am sure you are desperate. I can tell you that in part, some of the regression you are seeing is from the IVIG and it will go away. Our daughter was a manic mess after IVIG and it took 4 weeks to start seeing improvement. We are three months post IVIG and continue to see improvement every day. Hold tight, and do what ever you have to just to get through the next couple of weeks. It's not easy, but it is worth it. I am all for the Augmentin as well. Try to stay positive and keep telling yourself this is going to get better. I am so sorry things are so hard. Best of Luck.....

 

Dedee

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Karen,

DS was on augmentin XR for about 6 months - we never saw any difference between it and regular augmentin. However, due to his weight (60 lbs), he could only take 1000 mg/day, which meant cutting the pill in half, which negated the time-release aspect. So the only thing we gained was an increase dosage from 800mg to 1000 mg per day.

 

We saw more improvement from doing the combo abx for lyme. Have seen additional improvements from adding zinc/B6 for KPU and now supplementing to help the methylation cycle. We have always seen improvements for apprx 2 months then we hit a wall, regardless of what we were trying. Did Pex, saw gains, stalled after 2 months. Did prednisone tapers, saw gains, stalled after 2 months. Started bartonella abx combo, saw gains, stalled after 3 months.

 

Now that we've added the vitamin/supplement stuff for KPU/methylation deficiencies (giving zinc/B6/magnesium/taurine and will add betaine/TMG shortly), we're seeing gains, plateau, then more gains. Have held off on any chelation (a 2 week visit from my 88 yo dad and an 8 day power outage not conducive to rocking the boat). But after seeing recent improvements, I may give the supplements more time before deciding on chelation.

 

No harm in a trial of switching abx. Just wanted to throw out a few other things to consider as a Plan B.

PVs,

Laura

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