This is very exciting news, and I am hoping that this news opens the doors into an awareness that there is an infectious component in the etiology of autism. A new retrovirus has been implicated as a possible factor of causation in autism and Chronic Fatigue Syndrome in adults. I have always wondered if there is some sort of HIV-like virus that was causing immune system dysfunction in our children and this could be it!
If you are interested in hearing more about this please watch these two brief videos:
Part One:
Part Two:
Showing posts with label treatments. Show all posts
Showing posts with label treatments. Show all posts
Wednesday, November 18, 2009
Monday, March 9, 2009
Yet Another Mountain to Climb
I can't believe it! All of my kids are sleeping at once! That never happens...it's nice.
So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.
I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.
*Sigh*
The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.
*Sigh again*
Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.
But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.
About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.
Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)
So while I have this free moment I know there are other things I should be doing I wanted to give a quick update about some new developments in Kaylee's treatment.
I have discovered after talking at length with the director at the NY clinic that Kaylee has an allergy problem that needs to be resolved by consulting with an allergist. She told me that Kaylee is one of those 5% of children that have greater issues than most.
*Sigh*
The allergist is 70 miles away, which is great. But now I have to wait until June 8th to see him! That's 3 months away! I cried (there I go again!) when I got off of the phone at their office. I wish I didn't have to wait to get Kaylee the help she needs so badly.
*Sigh again*
Kaylee is doing great if she feels well. IF. If her allergies are bad we have severe behavior problems with her. I just can't figure it out.
But not only is our waiting a problem, but we have to pay for all of her treatments completely out of pocket, and it looks like it will cost us at least $2000. We are already stretched so thin. I don't know how we will do this but we will trust the Lord to provide. He always has been faithful to us. We have seen Him provide miracles for us.
About the treatment we will be doing, it is called sublingual P/N (Provocation and Neutralization). It has to do with allergy drops that eventually help to desensitize the immune system. The nurse at the clinic said that Kaylee's inconsistent behavior is related to her dysfunctional immune system and that if we do this treatment it will "change our lives". I think she is right.
Uh oh, I think I hear one of the kids! So that's all for now. Please keep us in your prayers! We'll keep you in ours :)
Thursday, November 13, 2008
Autism 101 - Autism for Dummies
Finding out your child has autism is scary and the information you have to sift through is overwhelming (wow, that word is an understatement!) and daunting. In a short period of time you need to take life's crash course in what autism actually is...then the onslaught of medical, therapeutic, financial, legal information can make your head spin.
First, let me tell you that you should take a breath and let it out. You WILL know what to do and soon, and you will get through this. Give yourself time to digest the information. Don't be hard on yourself!
There is a grieving process you go through, too, but that is a whole other topic that is for another time. But it's critical to know that you can't wallow in your grief and depression for long, your child is depending on you! Now is the time to start taking action. The clock is ticking, and while it's important to weigh all of your options, it is also important to wisely and prayerfully make your decisions.
If you have a child with autism (or any other special need), God has entrusted you with a child who is special and needs you. God will help you and give you strength and wisdom if you ask Him. God loves your child even more than you do and He will be your very present help.
Most of the time, the doctor who diagnosed your child with autism will not give you much hope or help. They will most likely send you on your way and you will feel lost. But don't give up hope! What a blessing we have with the internet! So many people sharing information quickly.
Here are some tips:
1. Beware of charlatans! There are many people out there that say "this supplement cured my child", but they want to make a quick buck off of desperate parents. Don't buy anything until you ask around about it. I have saved a lot of money just asking around people I trust (I call them my "e-friends") Chances are...if it sounds too good to be true, it probably is.
2. Get into a good Yahoo Group about autism (maybe one in your state or just one that focuses on curing autism). This is how you make "e-friends". I know this has been so instrumental for me, I learned so much from other seasoned moms and I had a lot of support. It was so refreshing for me to not feel so alone.
3. Educate yourself! Read some good books not just about "curing" autism but also how to live with it! I will give book recommendations on another post that were instrumental for me.
This is not by any means an exhaustive list of things you should do, but it's a start.
First, let me tell you that you should take a breath and let it out. You WILL know what to do and soon, and you will get through this. Give yourself time to digest the information. Don't be hard on yourself!
There is a grieving process you go through, too, but that is a whole other topic that is for another time. But it's critical to know that you can't wallow in your grief and depression for long, your child is depending on you! Now is the time to start taking action. The clock is ticking, and while it's important to weigh all of your options, it is also important to wisely and prayerfully make your decisions.
If you have a child with autism (or any other special need), God has entrusted you with a child who is special and needs you. God will help you and give you strength and wisdom if you ask Him. God loves your child even more than you do and He will be your very present help.
Most of the time, the doctor who diagnosed your child with autism will not give you much hope or help. They will most likely send you on your way and you will feel lost. But don't give up hope! What a blessing we have with the internet! So many people sharing information quickly.
Here are some tips:
1. Beware of charlatans! There are many people out there that say "this supplement cured my child", but they want to make a quick buck off of desperate parents. Don't buy anything until you ask around about it. I have saved a lot of money just asking around people I trust (I call them my "e-friends") Chances are...if it sounds too good to be true, it probably is.
2. Get into a good Yahoo Group about autism (maybe one in your state or just one that focuses on curing autism). This is how you make "e-friends". I know this has been so instrumental for me, I learned so much from other seasoned moms and I had a lot of support. It was so refreshing for me to not feel so alone.
3. Educate yourself! Read some good books not just about "curing" autism but also how to live with it! I will give book recommendations on another post that were instrumental for me.
This is not by any means an exhaustive list of things you should do, but it's a start.
Tuesday, October 14, 2008
To heal or not to heal?
Recently someone left a comment and implied that it was wrong of me to ask for God to heal my child of autism. They also stated that autism "doesn't need to be healed" and that I need to accept my daughter the way she is.
While I understand where this person is coming from, and I am sorry if these blog posts make you feel like you are different or unwanted because of autism. You aren't, you are special and important to God! I am so sorry for the burden that you have to carry. You must be a courageous and very strong person...
However, you don't know my whole story, either. I know this person may feel like when we are trying to "heal" our children we aren't accepting them or loving them for who they really are...That autism is who they are and they can't get out of that. I suppose that in some cases that may be true. But I do believe that we need to love our children right now and play with them and be with them as they are. My little girl is one of my best friends in the world and I love spending time with her.
But if the work we are doing to help her get better is wrong, why is my daughter getting better with treatments?
My daughter suffers from medical issues, such as immune dysfunction, daily fevers, diarrhea, food sensitivities, yeast overgrowth, and more. My daughter does not have Autism. She is sick! She is so sick it is causing her development to stand still.
My daughter is and has been suffering. She used to scream in pain as I changed her diapers. She cowers in fear over the simplest situations, like washing her hands, or having water run down her head, or playing in the tunnels at McDonalds. She used to be sickly thin and pale due to constant diarrhea and not obtaining the nutrients from her food. While other kids are playing with each other, she is by herself singing. Kids run away from her because all she knows how to do is say "hi" and try to hug them.
My husband and I accepting Kaylee and loving her no matter what but fighting to get into her world and bring her into ours. We love our daughter and even if she still has autistic tendencies and we will still be crazy about her if she stays the same! Just because we are seeking to get her better, it doesn't mean that we don't love her, just the opposite: we are willing to do anything to give her a better life.
Long story short: don't get down on us parents of children with autism, we already have it hard enough. We need help and encouragement.
While I understand where this person is coming from, and I am sorry if these blog posts make you feel like you are different or unwanted because of autism. You aren't, you are special and important to God! I am so sorry for the burden that you have to carry. You must be a courageous and very strong person...
However, you don't know my whole story, either. I know this person may feel like when we are trying to "heal" our children we aren't accepting them or loving them for who they really are...That autism is who they are and they can't get out of that. I suppose that in some cases that may be true. But I do believe that we need to love our children right now and play with them and be with them as they are. My little girl is one of my best friends in the world and I love spending time with her.
But if the work we are doing to help her get better is wrong, why is my daughter getting better with treatments?
My daughter suffers from medical issues, such as immune dysfunction, daily fevers, diarrhea, food sensitivities, yeast overgrowth, and more. My daughter does not have Autism. She is sick! She is so sick it is causing her development to stand still.
My daughter is and has been suffering. She used to scream in pain as I changed her diapers. She cowers in fear over the simplest situations, like washing her hands, or having water run down her head, or playing in the tunnels at McDonalds. She used to be sickly thin and pale due to constant diarrhea and not obtaining the nutrients from her food. While other kids are playing with each other, she is by herself singing. Kids run away from her because all she knows how to do is say "hi" and try to hug them.
My husband and I accepting Kaylee and loving her no matter what but fighting to get into her world and bring her into ours. We love our daughter and even if she still has autistic tendencies and we will still be crazy about her if she stays the same! Just because we are seeking to get her better, it doesn't mean that we don't love her, just the opposite: we are willing to do anything to give her a better life.
Long story short: don't get down on us parents of children with autism, we already have it hard enough. We need help and encouragement.
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