We are positive too......

[wornoutmom]

d - I'm so so sorry you are back to this place. Every good or even "not as bad" day here I thank "the universe" and accept gratitude for the day, because I know the next day it could all turn around. You must be beyond exhausted and heartbroken. I hadn't heard the MCIS moniker before but it feels fitting to our situation as well. I only wonder what the "rest" of colors are that docs haven't thought to look for yet. What was it about THAT virus that sent your son over the edge again. I am just crying tears of grief for you.

 

As far as convincing your son to take the meds/see the doctors I can only tell you what helped my son when he was at that point last year. First of all, I told him that I loved him more than the world itself and I would never give up trying to find answers or trying to help him, even if he'd given up on himself - especially when he'd given up on himself. I told him that I understood that the behaviors he was showing we'rent in his control - it was because of sickness and he could no more control that than he could a fever or a rash, and that no matter what he did (and as you know he got pretty violent/destructive) I would not blame him or be angry or love him any less. I told him I knew he was scared, and that I was scared too, but we WOULD figure this out, no matter how long it took. You might try explaining that you did IVIG last year not knowing if it would work, and it did - for a while. And he felt better for a while and you were a family for a while. And so you tried again, but it didn't work this time. So now it is time to try something different. It may not work. But you'll never know if you don't try - what has he got to lose. If it doesn't work, you'll just keep on searching and trying because that's how much you love him. For me, it was important to remind myself everyday that he was life alteringly ill and that helped me learn to react more with compassion in the midst of this craziness instead of anger and frustration. For him he started to believe that I really would do about anything to try.

 

One more thing. If you have the means and aren't already, I really encourage you to find a counselor to sort out all your thoughts and feelings with. I can't tell you how much this has helped me. Sometimes I get perspective, or just someone to bounce my thoughts off of, or sometimes advice, or just a place to sit still and cry. You are an amazing mom and you deserve that kind of support for yourself.

[Fixit]

 

- treatment for parasites/worms, can be herbs, Rx, and even avoiding onions/garlic/mustard helps, though does require significant diet change for most as these things are everywhere

 

- acupuncture can help things flow through the body better

 

Anyway, just some ideas, but mainly wanted to say I'm pulling for ya'all.

 

your saying to treat parasites AVOID onions garlic

i would think it was the opposite..espcially garlic

Edited January 12, 2011 by Fixit

[dabel]

Thanks everyone! I know that you all know how nice it is to have people out there (even if it is in cyberspace) that can relate to you! Wornoutmom....You got me! I read that in tears. I know that you know what I feel. Not that the rest of you don't. It is just that I have personally spoke with wornoutmom. Your suggestion is what I did when we first went down the PANDAS path. At that time explaining to him what was happening and that I understood that he was sick etc etc worked. This time he is really out of reach on this subject. He does not care anymore. He will not acknowledge that there is any thing wrong with him. I wish he was five again (that is when he really crashed) and I could force cooperation. Now I will have to resort to bribery as suggested by one of you. I am willing to open my checkbook. Heck I am willing to sell my house to help him if need be. I might have to do that if the medical bills don't stop rolling in. ) The problem is he is not too open to bribery right now because he is tired of the whole thing. Literally. I am not going to give up though!!! I will fight with all I am and all I have to help this child! I wish that there was a hospital for this! There is a hospital about 2 hours north of me that is actually going to be opening a Lyme's wing! I need that now! Where there is a will..there is a way. I have got the will, now I just have to find the way....

 

I LOVE the brown blob of paint analogy! I will never think of all this without seeing that blob....it looks a lot like a big pile of sh*t....and it feels like I am digging my way through a big pile of sh*t and have been for years. It really stinks after a while!!! Hope I didn't offend anyone.

[philamom]

Dabel-

Is there anyway he would take money as a bribe? I would offer my daughter $1 for every pill (or dose) she would take. As soon as she got a little better I was easily able to stop, and continue the meds. A little costly at first, but well worth the pay off. Great news about the Lyme wing!

[MichaelTampa]

 

- treatment for parasites/worms, can be herbs, Rx, and even avoiding onions/garlic/mustard helps, though does require significant diet change for most as these things are everywhere

 

- acupuncture can help things flow through the body better

 

Anyway, just some ideas, but mainly wanted to say I'm pulling for ya'all.

 

your saying to treat parasites AVOID onions garlic

i would think it was the opposite..espcially garlic

 

 

Yes, I am saying that avoiding onion/garlic/mustard has helped me enormously in treatment for parasites/worms, and I doubt it's just me, as this was an MD/researcher Hulda Clark who suggested it based on her research. She said that these three foods contain substances in them which feed the parasites/worms and help them grow.

 

It is true that many will suggest garlic, or at least garlic extract, for treatment of parasites/worms. Perhaps the extracts can help, if they don't have the particular substances that help the parasites/worms. I wish I knew the answer to that. But, really, I have used the garlic in the past and I didn't notice it helping, and avoiding these things has helped so much, so that's how I've been handling it. I am pretty strict about it 6.5 days a week, and then on Fridays we eat dinner at a restaurant and I eat whatever I want, even with onions/garlic/mustard. So, there is an in-between stage between complete avoidance that can also be helpful.

[LNN]

I truly was picturing blobs of paint when I wrote. But yes, s**t is a better image!