purple66p Posted October 26, 2010 Report Share Posted October 26, 2010 My son started Augmentin (1000 mg, 2x/day) a couple of weeks ago after a 10-day larger dose (2000 mg, 2x/day). He is certainly worse with regards to loss of temper, losing it at the slightest provocation, especially in the evening. He holds it together for school and (mostly) when playing with friends. We have to walk on eggshells to keep him from losing his temper. Homework was a nightmare with lots of writhing on the floor as if in pain. He yells for a half hour before he can sleep; I'm talking full out, as loud as he possibly can. I think this is a compulsion, or a reaction to a compulsion to finish whatever project is on his mind. He'd try to stay up all night if we let him and work on his projects. This is really taking a toll on the whole family, especially my daughter. What next? Back to higher Augmentin? (I think we may have seen some minor improvement on that, but it could have been just wishful thinking on my part!) Ask for Zithromax? How much for 120 lb kid? Our family doctor is being very helpful. I posted here yesterday about his Cunningham results, which showed very high anti-Lysoganglioside. I expect we're going to end up at IVIg at some point, but I doubt if the family doc is experienced with that. Link to comment Share on other sites More sharing options...
T_Mom Posted October 27, 2010 Report Share Posted October 27, 2010 I just wanted to say I am sorry your son is going through this-- I wish I had something to offer. I know switching antibiotics has worked for some. I would be curious to know what someone like Tanya Murphy or Nicolaides would tell you at this point. Longer? Hold steady for a month and see what happens? I wish I knew. Link to comment Share on other sites More sharing options...
Sylvia Posted October 27, 2010 Report Share Posted October 27, 2010 Same boat, we started our youngest on 1000mg twice a day at the begining of summer with very good results, so we switched to 500mg Augmentin twice a day thinking that would be better. He regressed in several areas, but not all. I don't know if it was because we didn't go up high enough with the Augmentin - but his doc said since it wasn't active strep 500 2x day should be enough. After a month I have just switched him back to 1000mg Amoxicillin again. It has been almost a week back and not much change. Ugh! My concern with Augmentin was that it can cause an increase in ammonia. So I am giving AKG as well. I hope switching back to Amoxicillin brings the improvement we lost while on Augmentin! I just wanted to say I am sorry your son is going through this-- I wish I had something to offer. I know switching antibiotics has worked for some. I would be curious to know what someone like Tanya Murphy or Nicolaides would tell you at this point. Longer? Hold steady for a month and see what happens? I wish I knew. Link to comment Share on other sites More sharing options...
Tamistwins Posted October 28, 2010 Report Share Posted October 28, 2010 I am sorry for what your going through, I can relate unfortunately. My kids are only 7 and my son is only 60 pounds yet he us so strong. I can't imagine what I would when he is 120 Pounds. It definately weighs its toll on us. I am exhausted of fighting everyday. I'm so drained and so tired of the same old routine. We did ivig 2x and are still waiting for a miracle. I hope it comes soon for all of us. Keep strong! Link to comment Share on other sites More sharing options...
jjl Posted October 28, 2010 Report Share Posted October 28, 2010 I am sorry for what your going through, I can relate unfortunately. My kids are only 7 and my son is only 60 pounds yet he us so strong. I can't imagine what I would when he is 120 Pounds. It definately weighs its toll on us. I am exhausted of fighting everyday. I'm so drained and so tired of the same old routine. We did ivig 2x and are still waiting for a miracle. I hope it comes soon for all of us. Keep strong! I know you said you are still waiting for a miracle, but did the 2 IVIGs help at all? Just curious as I am brand new to this game and I thought IVIG was helping with symptoms? John L Link to comment Share on other sites More sharing options...
Tamistwins Posted October 29, 2010 Report Share Posted October 29, 2010 Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are Link to comment Share on other sites More sharing options...
Tamistwins Posted October 29, 2010 Report Share Posted October 29, 2010 Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are Link to comment Share on other sites More sharing options...
Tamistwins Posted October 29, 2010 Report Share Posted October 29, 2010 Hi John, I believe for many on this forum that ivig did help. After our first ivig my kids behaviour got really bad, they were so nasty. They speak of turning back pages well all of my sons oCD behaviours that went away on antibiotics came back. The Dr we see schedules ivig every 2 Months unless we have the results we were seeking then people cancel or delay a 2nd treatment. In our case I did not see positive results after first treatment and I was fearful to go ahead with a second treatment, but I am trusting out Dr. And I can't live with the way things are Link to comment Share on other sites More sharing options...
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