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kimballot

Update on DS - now 19

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Hello old friends and new acquaintances-

 

It is hard for me to believe that I've not posted on this forum since 2014. Our story is long and complex and new folks who are looking to follow a story that was very difficult for a long period of time but is continuing to improve can look up my old topics. There was a time when I knew every post on this forum and checked in hourly for new information.

 

DS has had PANDAS for most of his life, with a lengthy history of chronic sinusitis and two large flares - one at age 7 and one at age 13. The one at age 13 was really devastating and he spent his high school years trying to come out of it.

 

He is now 19, and is really peaking after coming out of the second exacerbation. He finished High School last January, graduating with a local degree from the alternative high school program. He started taking a couple of classes at community college that semester. I did not think he could do it due to continued brain fog and executive function problems, but he stuck to it and finished two classes with grades in the A-B range. I was so proud!

 

This semester he took 3 classes in community college (tried to take 4, but one was math and he still cannot do that - had to drop it). Again, grades in the A-B range and this time I did not do any work for him. I did not help him keep up with his assignments or figure out when he needed to study. It just sort of clicked! Today he said "I think if I was healthy in high school I could be going to a really great college right now!". I said "You are young and you have your whole life in front of you to make up for lost time. You have many years to go to college and learn all you want to learn".

 

He also drives, has a part time job at a pizzeria and is a manager there. He has friends and goes to concerts and buys Christmas presents for his friends - a really supportive group of young men and women.

 

The last post I wrote in 2014 is here http://latitudes.org/forums/index.php?showtopic=22747&hl= How far we have come in a couple of years.

 

All that being said, I also know we are only one infection away from a crash and that stays with me all the time. He is still taking rifampin and doxy and has been for 2 1/2 years, and he still gets HDIVIG every 8 weeks. We want this to become a thing of the past, but every time we try to wean him off he crashes. It is very scary. I continue to look for new doctors and new answers. A new doctor thinks there might be an underlying metabolic disorder that has caused the immune dysfunction, so he had a muscle biopsy recently and we now await the results.

 

The hardest part for me now is allowing him to become the independent person he so wants to be. I want him to be independent and make his own decisions as a 19 year old boy should start doing. I've cut the reigns when he goes to his regular doctor appointments, but I usually send him with a typed- out updated history since I won't be in the room. Today he told me that wants to start going to his specialist appointments alone and I am petrified. I worry that this may be a manic episode because he seems so un-depressed. I worry that he will miss something or that the doctors won't know what to do without me in the room prompting them. I don't know how to let go of this control or if it is even the right time yet.

 

So, my PTSD continues, but my son seems to be doing well, all in all. I pray each night for all of the PANDAS families and I continue to do all I can to help all of our children. If you are feeling lonely, scared, overwhelmed, or just plain sad, please know that you are not alone. Keep the faith, stay connected, and never stop searching for answers for your child.

 

All the best to all of us in the new year ~

 

 

 

 

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Kimballot --

 

Great to hear from you, and so happy to hear about your DS's progress, successes, etc. You've worked so tirelessly to help him, and you should pour yourself an extra glass of bubbly this New Year's a toast yourself! :D

 

As for the whole letting go of the apron strings things, I hear you! I've been doing the same for the last year or so . . . sending DS into his own doctors' appointments by himself, and then hoping he'll share with me the primary items, advice, etc. He usually does, but I really have to work hard at not prying beyond what he offers up. <_< That's also translated into my turning over his supplement regimen to him entirely. I can see, now while he's home over the holidays, that some days he pops in a zinc and/or a B6, and other days he doesn't, which would have, at one point in time, freaked me out. But he seems to be doing well and managing himself and his life well, so I continue to work really hard at "dialing it back." Way easier said than done, though!

 

Here's hoping you and yours have a fabulous New Year and 2017! :wub:

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Kimballot- I apologize if I'm missing something, as I'm not familiar with your case. But has Lyme been ruled out?

So glad he is doing well.

Elise

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So nice to see you on the forum again too! You were always a few steps ahead of us in recovery, and were a guiding light! you talk about "now the your son is home for the holidays", so I am assuming he is away at school or living away from home now? So very glad for you and him! I remember that he did very well in High School and really has a good head on his shoulders!


 

 

Kimballot --

 

Great to hear from you, and so happy to hear about your DS's progress, successes, etc. You've worked so tirelessly to help him, and you should pour yourself an extra glass of bubbly this New Year's a toast yourself! :D

 

As for the whole letting go of the apron strings things, I hear you! I've been doing the same for the last year or so . . . sending DS into his own doctors' appointments by himself, and then hoping he'll share with me the primary items, advice, etc. He usually does, but I really have to work hard at not prying beyond what he offers up. <_< That's also translated into my turning over his supplement regimen to him entirely. I can see, now while he's home over the holidays, that some days he pops in a zinc and/or a B6, and other days he doesn't, which would have, at one point in time, freaked me out. But he seems to be doing well and managing himself and his life well, so I continue to work really hard at "dialing it back." Way easier said than done, though!

 

Here's hoping you and yours have a fabulous New Year and 2017! :wub:

 

Edited by kimballot

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Kimballot- I apologize if I'm missing something, as I'm not familiar with your case. But has Lyme been ruled out?

So glad he is doing well.

Elise

 

 

Yes - We have done igenex 3 times now and never any lyme. Igenex was "indeterminate" for bartonella, but my son developed bart stretch marks about 3 years ago, so we started treating for Bart. Just had Galaxy lab bart test last August and it was the first test to come back positive for Bart!! Just had him retested today - hoping to see the numbers dropping.

 

This disease truly is like peeling the layers of an onion. He has had a crummy immune system since birth with chronic sinusitis and every cold and flu possible. In 2010 his exacerbation started after H1N1 virus but as we investigated we found sinusitis, a sinus cyst that needed immediate surgery, hypogammaglobulinemia, and bartonella.

 

A teenager I once knew with severe disabilities told me: Yard by yard life's mighty hard, but inch by inch it's a cinch. Sometimes I feel like it has been millimeter by millimeter and sometimes we move two millimeters forward and one back... but overall it is moving in the right direction!

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Hi,

 

How do you all handle the candida from antibiotics?

 

Already giving probiotics but candida still very high on blood tests.

 

thanks

My son is on multiple abx in his battle against lyme - and we are constantly fighting yeast. We use several natural yeast fighters (Candicidal and Kolorex and we switch these out each week - Candicidal one week and Kolrex the next) he also take two Florastor capsules daily, multiple probiotics and garlic. I'm researching caprylic acid as well and may add that to the mix too. it's a beast that is hard to tame.

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thank you, i'll add both to the mix.

My son uses saccharomyces boulardii as a probiotic as it can be taken with antibiotics. When he was younger, yeast was more of a problem and we frequently used diflucan as an anti fungal. (I don't think you can do diflucan with saaccharomyces bollards). We also used acidophilus but always had him take it 2 hours apart from antibiotics.

 

Best wishes.

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Thank you so much for this update! I have followed your posts for years and it is so good to hear that he is doing well. I also understand the feelings that come with letting them be more independent. I am trying to do this now and it is hard. :unsure:

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