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looneymom

Made Some Progress But Went 2 Steps Back

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Well my son was starting to make some progress. He was doing 3 treatments of PEX a week and showing improvement in a few areas. His hoarse voice and speech problems disappeared totally when he was doing 3 treatments a week. His tremors kept getting less and less and he was able to do a few exercises without the tremors starting. The doctor wants to get him back to this baseline.

When he went down to 2 treatments the beginning of this month, his hoarse voice and speech problems came back, his vocal tic started increasing, and his tremors are worse. He told us we would see small changes at first and he was right. I had know idea how small they would be but it was worth the wait. The small dosage of predisone has helped with moods. He is perkier and more talkative. Starting this next week, he will be doing 3 treatments a week for the next 6 weeks. Can't wait to get back to that base line.

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Rachel:

I'm glad you and Tyler saw some improvement (even if it is small changes). Keeping my fingers crossed that Tyler will continue to improve!!!!

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Your guy is such a trooper and so are you. You both have hung tough through this and I'm praying that you will be successfully on the other side of this sooner rather then later.

At least this is hopeful, you now have some evidence that the treatment is working. I was on pex for 4 months and I was getting treatment with another women who had cidp. She had been getting it for many years and it was the treatment that worked best for her and helped her have a better quality of life. In her case cidp never clears completely and requires lifelong treatment.

With time hopefully they will be able to clear these antibodies from tyler's body and he won't need to stay on it long term. It is hopeful that your doctor feels that is possible. If he ends of needing to stay on it long term though, it can be done the women I mentioned was retirement age. Had been having it for decades and still was living her life thanks to the pex.

I pray his course ends up being shorter and successful. Here's to more and more perkier, cheerier and talkative days.

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Praying for Tyler and you Rachel. You are both awesome.

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