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looneymom

Going Down To One Treatment A Week

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It's been awhile since I posted about Tyler. He is finally going down to one treatment of Pex per week. His doctor kept him on 2 treatments a week for the months of December 2013 - April 2014. He is gaining strength. When he first started Pex in August last year, he could not sit on a bench without back support. He is now able to do this for several minutes. Since February of this year, Tyler has been able to start doing core exercises and is beginning to gain strength. He is also able to do these without having tremors start. He is still not able to stand stand up and walk but he is able to balance on his knees in an upright position without having tremors. His body allowed him to start doing this a couple of weeks ago. His progress is slow but steady.

He still has a daily headache but his pain levels dropped down again this last week. Tyler was put back on Minocycline this month but another supplement he was on has been raised to a new level. According to new research this supplement can help ease neuropathy pain. Our doctor thinks the combination is most likely helping Tyler because he is being weaned off the Namenda. The Namenda had very little affect on his headache or scalp pain.

Tyler has very little fatigue during the day time and is sleeping through the night. He did get the flu in February and none of his symptoms flared like they did in the past. He stayed at his base line and was able to continue doing his core exercises without problems. He is able to stay focused and complete his daily school work without having to take naps. He passed all of his end of year state test examines and scored advanced in reading.

I am nervous about him going down to one treatment but if he goes down hill, our doctor will bump him back up to 2 treatments a week. If he stays stable, it is a good sign that the treatment has supressed his body enough and the anti neuro antibodies caused by past infections are out of his body. The pex seems to have stablized his immune system but still have several months of treatment before he is totally off the pex. He will be doing one treatment a week until the end of June and if all goes well, he will start going every 2 weeks.

He is still on his Midodrine but is taking less. However, his blood pressues still fall down about every 5 hours but he is due for his next dosage of Midodrine. However, I don't always have to give him a gram of salt with the Midodrine because his top number is at 110 or above. Some days he is only getting one or two grams of salt besides salting his food. If improvement contiues, he will be able to drop down on the Midodrine some more.

Here is the article on the supplement that may be helping Tyler with his neuropathy pain. I have done more research on this supplement and it helps cancer patients with this type of pain.

http://naturalmedicinejournal.com/journal/2010-08/therapeutic-effects-acetyl-l-carnitine-peripheral-neuropathy-review-literature#

http://www.sciencedirect.com/science/article/pii/S2213231714000214

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Hi Rachel!

I'm so glad to hear how Tyler is doing, thank you for letting us know!! This is really good news.. Thinking of you guys :)

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Hi Rachel,

How wonderful to hear that Tyler is improving ! What great news. Thanks for the update and for the supplement links.

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I understand your concern Rachel, keeping my fingers crossed for Tyler to do well on this new treatment plan!!!

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