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Okay, we saw the doc, more questions about his treatment plan


little red
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Thanks to all of the responses to my post yesterday. They were helpful and supportive!

 

So we saw my daughters specialist. I am still confused. He did okay antibiotics, but only for two weeks. He said at the end of two weeks, she will have either:

 

1) gotten no better or only a little better, hence the antibiotics aren't working and we stop them. Then try IVIG.

 

or

 

2) she will significantly improve and we will still stop the antibiotics. He believes that if she has greatly improved then you have either stopped the infection and dont need to continue antibiotics. Or, if we stop them at two weeks and her symptoms reappear then she was just getting the neuro protective properties that antibiotics can provide. And she will then need the IVIG.

 

My question is this: who cares what the method of helping is/was. Whether it is stopping an infection or neuro protective properties, if it is working, why not continue with the antibiotics. Maybe those neuroprotective properties give her brain and body a chance to rest and then heal some.My daughter had great results with 6-7 weeks of antibiotics the first time. We went for almost a year without a return. That is all I could ask for!

 

I am so hoping that this time we will see great improvement again (although the doc said with every episode the success of the antibiotics decreases) and I will definitely NOT want to take her off after only two weeks!!! It scares me to death! To see her improving and then to risk seeing her go back again because of withdrawal of antibiotics would break my heart.

 

So, do these docs feel betrayed if you seek another opinion and/or go a different route? Our doc is the only of I know of in our area (Chicagoland)and I would hate to be put on his bad list.

 

Thanks for sharing your knowledge and experiences. It means so much to feel that I am not alone in this most difficult and heartbreaking time.

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Many people see more than one specialist. In fact some have seen most all of them. If I could manage it, I would add to my list also.:-) You must do what you are comfortable with. If you got great results with antibiotics, then there is no reason not to go with that. IVIG isn't for everyone. In fact there is no guarantee that you will get good results with that either. We have used it with one child and not the other two. You may decide at some point down the line that you need it, but it sounds like right now the antibiotics are working well. You say you have two weeks worth. I would start looking for another doctor who shares your vision. Best of luck.....

 

Dedee

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We see another well known specialist, who believes that short term abx can cause the immune system and antibodies to disassociate, causing the autoimmune process to become further set into place. 2 weeks is not enough time. IVig is a big step and there are risks. It takes approx. 1000 donors to create enough product for 1 IVig treatment. It is an excellent option, I think when all other viable levels of interventions have failed. I have had a teleconference with Dr. K as well and chose the abx route, which is working so effectively at this time that our specialist seems to feel that my son is on the road to a full recovery. This is no small feat as he has been very sick for approx. 2.5 years. Now he is not. He is well. This does not work for everyone, but there may be much more digging to do prior to you taking this step. I have some more specific concerns about Dr. K's protocol that I won't write here, but you are welcome to IM me if you would like to know of them. You are doing a GREAT job! It is very hard to weed thru all of the options, especially when you are dealing with stress and fear every minute of the day! Keep up the good work and know that we are in your corner! -Kath :)

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