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Update, and what should we do next...


lmkmip67
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I have been so busy lately with school starting, our son in hockey and running my business. But I wanted to stop by and update, also have a few questions. I hope everyone is doing well, but i know every day is a challenge at times.

 

Ian is 8 and we are 4 weeks out from the 3rd IVIG. We have seen NO improvement. He is the same, if not worse, when he gets a cold. Dr. B suggested testing again for lyme through Igenex. we did a few months ago before starting IVIG, but there were a couple of inconclusive bands, I guess. I do have the results here now, so if anyone knows anything about specific bands, I can certainly tell which ones they were. Anyway, we are scheduled for IVIG #4 in about 4 weeks, but were told to wait until just before to get the additional blood test done for lyme. I guess IVIG can affect the results? SO we will do that. But the issue is Ian is just no better. A year ago he was diagnosed with PANDAS and we tried three different type of antibiotics. There was slight improvement on those, but not a lot. So then we decided to go the IVIG route. The issue is he seems to be the same, or worse, than when we started. We saw some improvement after the first IVIG, but then nothing after the second and third. I am kind of lost as to what to do next. Days are so hard with him. He has OCD, tics, etc. But the worst lately is the defiance and the way he talks to us. I am not sure how to curb that. it is embarrassing. I do time outs, take away privilages, etc. I also understand that some of it is impulse control this kids can't help sometimes. So I will talk to him later or at the time of and tell him that isn't appropriate etc. But it doesn't seem to help. We still do antibiotics and I do Motrin when it is bad. But he still has a huge issue with arguing, defiance and attitude. I think I could handle things if it wasn't for that. SO I guess my question is two part.

 

Does anyone have any helpful tips for handling the defiance and disrespectful way they talk to us?

 

And what should I be asking Dr. B this next time? What else should we be looking into? I know he did a co-infection panel. Everything else seemed fine at the time, except perhaps the two inconclusive bands for lyme. I just feel like I need some direction here as I am about at the end of my rope. I know it has been a hard week for him, and me. But I need to feel like there is some hope. Right now with the IVIG not working, I am feeling pretty darn hopeless. I am sorry for not being helpful lately to others. I will try to read more. I just felt all my reserves are used up and haven't had much time or energy to read.

 

Thanks!

 

Lisa

Edited by lmkmip67
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Does anyone have any helpful tips for handling the defiance and disrespectful way they talk to us?

 

Lisa

 

For the behavioral stuff, have you tried any of the techniques in "The Explosive Child"? I know they helped us when our DS was beside himself with anxiety and it manifested as anger and defiance . . . at us, at the world, really. Those techniques can help you set aside the "battle of wills" and work with your kid, instead of against, to come up with some mutually agreeable solutions. I think several families here have found that particular book to be helpful.

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Here are his results that show anything not negative from the Igenex. I posted on the Lyme board, too but figured I would add them here since I has talked about it. Dr. B said he was negative. But those look different than negative to me, but I have no idea what any of it means, either. so....lol

 

 

 

IgM 30 kDa +

IgM 31 kDa IND

IgM 39 kDa IND

IgM 41 kDa ++

IgM 83-93 kDa IND

 

 

IgG 18 kDa +

IgG 30 kDa +

IgG 31 kDa IND

IgG 34 kDa IND

IgG 39 kDa IND

IgG 41 kDa ++

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I had to bump this up because I realize what I need to ask now. I think I was confused a bit when I first posted. So we have our Lyme results from last January (in earlier post in this thread). Some seem to think they look lymie enough. Co-infections are talked about a lot. Dr. B talks about that, too. I assume Dr. B tested for relevant co-infections? I thought he did. Is there something else I should be looking at or asking him to test?? We did all the same tests everyone that sees him, does. I am also hearing don't bother retesting Lyme with the above results. So my thought is to check in with Dr. B and ask about skipping the lyme retest, set up an appointment with a good LLMD (I have a couple of names) and see if Dr. B would agree to starting more of a lyme combo of antibiotics in the meantime. Does that sound like the right track? I really appreciate the help in wading through this maze. I guess the only other thing is what other co-infections should we be asking he be tested for? Like I said, we did all the tests already that Dr. B orders, and nothing was found there in the original testing.

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I had to bump this up because I realize what I need to ask now. I think I was confused a bit when I first posted. So we have our Lyme results from last January (in earlier post in this thread). Some seem to think they look lymie enough. Co-infections are talked about a lot. Dr. B talks about that, too. I assume Dr. B tested for relevant co-infections? I thought he did. Is there something else I should be looking at or asking him to test?? We did all the same tests everyone that sees him, does. I am also hearing don't bother retesting Lyme with the above results. So my thought is to check in with Dr. B and ask about skipping the lyme retest, set up an appointment with a good LLMD (I have a couple of names) and see if Dr. B would agree to starting more of a lyme combo of antibiotics in the meantime. Does that sound like the right track? I really appreciate the help in wading through this maze. I guess the only other thing is what other co-infections should we be asking he be tested for? Like I said, we did all the tests already that Dr. B orders, and nothing was found there in the original testing.

 

I posted a response on the Lyme board but I thought this was a good read about how LLMD's might interpret the western blot and explaining why a negative Lyme test doesn't necessarily mean there is no Lyme.

 

http://lindaslymediseasejournal.blogspot.com/2008/08/western-blots-made-easy-by-dr-james.html

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Your son is positive and indeterminate for some very key lyme bands and looks very lyme like to me. It is so sad that parents are still realizing this after having gone through multiple ivig's. I don't even think you need to waste the money on re-testing at this point and would go ahead and make the appointment with a lyme doctor. Maybe even ask Dr. B to start a trial of lyme treatment untill you can get in with a lyme doctor. Usually the combination of antibiotics used will treat lyme and bartonella but you may still need to rule out other co-infections like babesia. Good luck.

Edited by momofgirls
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Ok, I think your right. I wrote to Dr. Bs office and suggested we wait on re-testing and asked to start a lyme combo. I am going to make an appointment with a local doc that was said to be an LLMD. We will start there. I assume we should continue with the IVIG, but I will see what Dr. B says....Thank you! I also will ask him about what other co-infections we should be testing for.

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Hi Lisa,

 

Keep pursuing all avenues and you'll get an answer. Does your son have elevated ASO and Anti-DNaseB? If so it might be a good idea to focus on that as well. I don't want to say that the lyme focus is false or wrong, but I think sometimes we get too far away from the strep focus, since, as far as they know, this is primarily a syndrome caused by antibodies to strep.

 

This article has been posted before. http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain . It is by a psychiatrist who believes in tonsillectomy for PANDAS and claims that the international literature supports this approach. At the bottom of the article you can access the reader replies, which the psychiatrist responds to most of. They are pretty interesting.

 

I know that tonsillectomy isn't necessarily the answer but I think for any of us, keeping the focus on eliminating all sources of strep, be they in the child's body, tonsils or nasal cysts, etc, or external, as in living with a carrier, should be on the list, if not at the top, of priorities.

 

Alex

Edited by Alex
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Thanks, Alex. That info is helpful. I take all info into consideration as I try to navigate this next course. It is so hard. sigh...

 

Does anyone recommend we see an infection disease doctor or anything? I am not sure how far Dr. B's powers go here in helping us when we haven't seen any improvement on this. Is he going to really focus on step only or what?

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