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Lyme/IQ/Hypoperfusion


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We had our meeting for IEP today and found out that son no longer qualifies. yeah. We will meet again to discuss 504 plan. Here was something interesting. While son scores very high on verbal IQ, he does not score very well on memory or processing IQ (a difference of at least 30 points). We had a spect scan done several years ago, before Lyme treatment began in earnest, and it showed temporal brain hypoperfusion. This is the part of the brain that leads to processing/exeecutive thinking. In my mind, there is a connection between the Lyme leading to hypoperfusion which in turn leads to poor memory. Columbia University (Dr. Fallon) and Brigham and Children's hospital (Dr. Steere) also see the connection and have published papers about it. The treatment of choice for this condition is IV Ceftriaxone. It usually works very well, although sometimes the patient regresses after treatment is discontinued.

 

We have been at this for over 2 1/2 years and he finally tested CDC positive in December. DS still has severe ankle pain, especially in the morning and pronounced fatigue. Do I ask Dr if there is an oral alternative to Rocephin? Do we ask about IV Rocephin? I am very scared of a PICC line and possible infections. Read, terrified. I want to err on the side of caution. We have appt in 3 weeks, so I am trying to come up with my list of questions.

Edited by cobbiemommy
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Just another thought as usual coming from the less is better perspective. :)

 

My son is doing neurofeedback which is like exercising the two sides of the brain and helping them work together. He has only had about 6-8 treatments so far and definitely sees improvement (and I do) in focus, less depression, thinking etc. The dr. has him rate about 10 different things each visit.

 

All he does is watch a movie while it is happening so treatment is fun. When he missed 2 visits with an illness recently, he could really tell the difference (so could I!). Have read that it takes at least 20 visits to really make it stick. We did some make-up visits when he missed the 2 weeks. Apparently, you can do many within a short amount of time. We just do weekly for payment/insurance issues usually.

 

Thank you for the information on the brain activity-it really makes sense with what I see in my son.

Edited by JuliaFaith
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cobbie -- can you refer me to those papers? excellent your ds is doing well to no longer need IEP -- did you see my recent post on the info i have learned about the differeneces btwn IEP and 504?

 

 

julia -- you are getting insurance to pay for neurofeedback? very interesting -- was that tough?

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I have thought about IV many many times because i know it crosses the blood brain barrier. I called Dr. Fallon once and spoke with him, it may be worth giving hin a call to get more information. If the Dr. Steere is Alan Steere I would not put much weight into anything with his name on it, according to what I read he insisted Lyme was a virus until it was impossible to take that stance any longer (Dr J at that point had already been treating/saving patients) and his mis-publications have led to thousands being mis-diagnosed and undertreated for Lyme. In the book Cure Unknown there is a lot of detail about Alan Steere's history with Lyme.

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I will site the papers, tomorrow. I do not care for the opinion of Steere too much myself, but when two respected doctors from very different points of view advocate for the same treatment for the same reasons it would seem to be because that treatment is effective.

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Cobbie,

 

We had an IV Port line installed in our son and he used IV abx for 6 months, including Rocephin. The port is much much less susceptible to infection and no issue with the child messing with it, but it does require surgery to install. Another plus is that a port can be left in for 2 or 3 years if need be.

 

On the hypoperfusion, you may want to consider HBOT. That is a great way to mitigate hypoperfusion. I do not frequent the boards that much. You can pm me if you would like more info. I would appreciate a copy of the Columbia study also. Thanks, John L

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