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Finally! Some good news about my daughter.

We have been giving her supplements for mineral and bacterial deficiencies for many months now. It takes a lot of time and some have to be given 15 minutes before she eats, some are once a day or twice a day. We got the results of a recent blood test and it looks like we are having an effect. Milk allergies was still over a hundred, anything over 30 means you react to it, 70 is a full allergic reaction. This seems bad but it might have been 2 or 3 hundred and now it may just be over 100. The grains were 70 and now they are 13. The same for most of the stuff that was in the 70's, it is all much lower. The leaky gut is going away. This means she is getting more vitamins out of the food she eats, and her digestive system is normalizing somewhat.
She seems pretty happy and sharper, so we'll take it. It is nice to know the effort and hard work we are doing is paying off. Be happy.
:dance :brad :bliss :boldpurpl
Everybody have a drink on me.
:bar

Great news Roy! Our prayers are with you and your family.
 
Alright!

VERY HAPPY for you and your family, Roy!!! Keep on hangin in there.


Riding Like the Wind...

CHASMAN
 
Roy,

What a tough thing to deal with, the illness of your child. I'm so happy that your daughter is improving and getting better. How old is she?

BM
 
Roy,

What a tough thing to deal with, the illness of your child. I'm so happy that your daughter is improving and getting better. How old is she?

BM
She is 10 now. The West Nile hit when she was almost 5. That is bad enough, but then you throw in complications from it, like leaky gut and Scoliosis (curvature of the spine) and you sorta get pissed.This is why I have a hard time with Karma because she has done nothing to deserve this, even if I have.
 
Your situation puts things in perspective, Roy. I need that once in a while. Thanks.

I hope that things continue to go well, and you can post more good news!!
Perspective is important.

I like the story in the movie City Slickers that Curly (Jack Palance) told about the one thing, that makes a man realize life is worth livin'. Billy Crystal wanted to know what it was. His answer was that it's different for every man, and the man has to find it out for himself.

I found out what mine was. :nod
 
HOORAY for Rachael!!!!!!! :rofl
This is awesome news Roy - I'm really looking forward to seeing her (and the rest of the family) again.
 
HOORAY for Rachael!!!!!!! :rofl
This is awesome news Roy - I'm really looking forward to seeing her (and the rest of the family) again.
Hi Becky! :wave

The Dells Rally is probably going to be the next time she mingles with the biker crowd, unless I take her to the 105th HD party. :laugh I know

Mr Bex Beemer said he has to work so he wasn't sure why you said you could make more rallies, but I know.
Tell him to have fun at work and we will save a seat for you by the campfire. :laugh
If you brought your bike, and I and Dave brought ours, we could be a bunch of smart esses.
 
Roy

Does your health care provider monitor Rachael's West Nile viral load ( the amount of virus in her system ) ? Sometimes this is just academic if there is no anti-viral medication that can be used in treatment but it still can be a measuring tool. Or are they monitoring her lab work and replacing what is needed such as vitamins and immune boosting agents ?

The improvement is great that shows that her body is responding well and is trying to correct whatever damage that has occurred. Does the health care people for-see more improvement over time ?

I am happy for the change thus far and your hope is restored.

Yes. :laugh

There is no anti-viral medication for West Nile. We found a place that had significant results at first onset of symptoms by administering High Blood pressure medicine. This appeared to stop the onset of the symptoms, no swelling, no brain damage. Unfortunately, we discovered this about a year after it happened. The brain damage had already occurred, that is that. The Neuros were all like, "Well, a bad thing happened, you're just going to have to accept it." To me, that sounds like giving up, which I don't do easily, especially where kids are concerned. The first Neurologist said " I believe she is going to be 5 years old for the rest of her life." She had given up on Rachael already, that is why we left her.


That is also why we have high hopes for this Autism Dr, they treat the symptoms happening now, like the leaky gut and her low levels of Zinc and other things, and are monitoring her lab work, as you said. The Autism Dr does see more improvement coming, but there are no guarantees. Nothing would make me happier to know she was going to recover fully, if we keep doing what we are doing. However, I don't know that, and it sort of haunts me. I try not to think about it. Still, we can try to make here as good as she can get, and keep her happy. If you are going to have kids, IMO, you must do the best job you can for them.
 
It's a wonder you people survive with no blood in your bodies, 'cuz your hearts are so big! Thank you everybody.


The only thing better than this, would be her full recovery and her becoming a BMWMOA member and rider. Then I would know she was in the company of some of the best-est people around.

:wave

Great news Roy, it took about 5 years for this first good news, now we await Rachel recovering however wishing that she becomes one of us (MOA member), doesn't she deserve something special?

regards, Rod.
 
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:dance :clap :clap Great News, here's to things continuing to improve, you've got a strength and fortitude that we all should aspire to, Dude!

Jeff
 
:dance :clap :clap Great News, here's to things continuing to improve, you've got a strength and fortitude that we all should aspire to, Dude!

Jeff
Thank you.

Yabbut, if you had told me that before, I would have insisted it wasn't true. I am not so sure it isn't desperation and stubbornness.:laugh
 
Great news Roy, it took about 5 years for this first good news, now we await Rachel recovering however wishing that she becomes one of us (MOA member), doesn't she deserve something special?

regards, Rod.
Good point, I don't know if I will be able to afford it by then.
:laugh

You are right though. She is, and deserves, something special IMO.
 
Well, I'm late to this dance, but...

Just wanted to let you know that I'm jumping on this bandwagon of good news.

Glad to hear this, Roy.
 
Thank you.

Yabbut, if you had told me that before, I would have insisted it wasn't true. I am not so sure it isn't desperation and stubbornness.:laugh

Well whatever works to get you where you need to be to keep going in light of such as you have faced works for me (and obviously has for you!).

You and your family are always in my thoughts.

RM
 
Well whatever works to get you where you need to be to keep going in light of such as you have faced works for me (and obviously has for you!).

You and your family are always in my thoughts.

RM
Thank you RM, and Thank you everybody else for the kind words.
:wave
 
Ok here is an update for those large hearted individuals here following the story so far. I know there are a few of you.:heart
Her original diagnosis remains unchanged.
We had an appointment with the Autism Dr. He said she is responding well and the "leaky gut" seems to be going away. She can start having some of the foods she couldn't. He also gave us some more supplements (her daily requirements already fill a 8.5 by 11 sheet of paper)
Hopefully, we can discontinue some of them eventually, that would be helpful. Every summer, I take FML and stay home for 3 week days each week, and my wife does the other 2. She continues to improve, and I have noticed she is better in swim therapy this year than she was last year. Rachael is holding her arms out and grabs the float on her own. I don't have to hold her hands on it anymore. Progress is still very slow. It's like being caught behind people who steer their motorcycle through corners on a great twisty road, very frustrating.
Always improving, my biggest fear is it will stop. We do everything we can to insure that doesn't happen. We are looking at some auditory treatment for her now. We are trying to decide if it is a scam, or a viable treatment.
That is all, everybody have a great day and ride safe. :wave
 
Progress!

Good to hear that Rachel is making progress in so many areas, Roy. We are all cheering for her. :clap

What is the auditory treatment? Most of these things work for some and not others, but are marketed as a panacea for all. You have worked so hard at finding treatments which will work for Rachel. She can't help but benefit from the deeply caring environment you provide.

Holly
 
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