OT-Parents of children with Autism- Have you ever tried AGAPE supplement??

[Stitch76]

I originally posted this on the DISabilities community board, but have gotten very little response, so I thought I would post it here as well, in case someone on this board could be of help.
My 7 year old son has Autism and SPD. Recently he has started to refuse any and all vitamins. This includes all the chewables, the gummy types, and powders that you mix into food or drinks, (HE can taste it, even if I can't). He also won't even drink Pediasure, because he thinks it's yucky.
I am at my wits end, and frankly about to pull my hair out. I know it is very important for him to get his supplements. And as a mother, I have been worrying myself silly trying to come up with a really good alternative. Given his diagnosis and plus the fact that he's small for his age, we have to find something.
I have searched and read about countless supplements, and I ran across this site for AGAPE supplements. It seems like it has a lot more things in it than a regular multivitamin, and is geared especially for those with Autism.

http://awakennutrition.com/agape/home.html

It is a liquid which I think he may take, he usually doesn't fight when I have to give him liquid medications. But it's $100 a bottle. That's a lot for vitamins, but if it does all it claims it can, it would be well worth it. However, I'm always leery of "If it sounds too good....."
Before spending that kind of money, I would like to hear from someone who has actually used it, and hear their opinion. Did it help your child?? If so, how long were they on it, before you could tell it was helping?? Also did it have any negative interactions on medications they were already on?? (My son is on 20mg of Metadate CD to help with his concentration in school, and 4mg of Cyproheptadine to help with his appetite, and to help him sleep.)
I know no matter what, AGAPE wont be a miracle CURE, but if it helps my son any at all, I'll try it in a heartbeat.
Any information on this would be greatly appreciated! Thanks!

 

[My2CrazyGirls]

I originally posted this on the DISabilities community board, but have gotten very little response, so I thought I would post it here as well, in case someone on this board could be of help.
My 7 year old son has Autism and SPD. Recently he has started to refuse any and all vitamins. This includes all the chewables, the gummy types, and powders that you mix into food or drinks, (HE can taste it, even if I can't). He also won't even drink Pediasure, because he thinks it's yucky.
I am at my wits end, and frankly about to pull my hair out. I know it is very important for him to get his supplements. And as a mother, I have been worrying myself silly trying to come up with a really good alternative. Given his diagnosis and plus the fact that he's small for his age, we have to find something.
I have searched and read about countless supplements, and I ran across this site for AGAPE supplements. It seems like it has a lot more things in it than a regular multivitamin, and is geared especially for those with Autism.

http://awakennutrition.com/agape/home.html

It is a liquid which I think he may take, he usually doesn't fight when I have to give him liquid medications. But it's $100 a bottle. That's a lot for vitamins, but if it does all it claims it can, it would be well worth it. However, I'm always leery of "If it sounds too good....."
Before spending that kind of money, I would like to hear from someone who has actually used it, and hear their opinion. Did it help your child?? If so, how long were they on it, before you could tell it was helping?? Also did it have any negative interactions on medications they were already on?? (My son is on 20mg of Metadate CD to help with his concentration in school, and 4mg of Cyproheptadine to help with his appetite, and to help him sleep.)
I know no matter what, AGAPE wont be a miracle CURE, but if it helps my son any at all, I'll try it in a heartbeat.
Any information on this would be greatly appreciated! Thanks!

Wow, I have never heard of that. Do you have a local TACA chapter by you?

 

[Stitch76]

Wow, I have never heard of that. *Do you have a local TACA chapter by you?

Sadly no, Kentucky doesn't have one.
DS's school is awesome, without his School Aid, and all the Therapists' that work with him, I couldn't do this.
However, when it comes to support, information, and Doctors the area where we live sucks. (Very rural part of KY)

His pediatrician looked at me like I had two heads when I first started having concerns with DS's regressing development right after his second birthday. She told me there was nothing wrong with him except that he was "excitable", and a late "bloomer", and I was worrying for nothing.
Finally after a year of this, she got me on the waiting list to have him diagnosed, 9 months later, we FINALLY got to see someone. So he was almost 4 before he was diagnosed, and we could even get him in any therapy. It was a nightmare, and she never once said she was ever wrong.

So, most of my information comes from doing research on my own, reading books, surfing the web, and just hoping I run across something.

 

[My2CrazyGirls]

Sadly no, Kentucky doesn't have one.
DS's school is awesome, without his School Aid, and all the Therapists' that work with him, I couldn't do this.
However, when it comes to support, information, and Doctors the area where we live sucks. (Very rural part of KY)

His pediatrician looked at me like I had two heads when I first started having concerns with DS's regressing development right after his second birthday. She told me there was nothing wrong with him except that he was "excitable", and a late "bloomer", and I was worrying for nothing.
Finally after a year of this, she got me on the waiting list to have him diagnosed, 9 months later, we FINALLY got to see someone. So he was almost 4 before he was diagnosed, and we could even get him in any therapy. It was a nightmare, and she never once said she was ever wrong.

So, most of my information comes from doing research on my own, reading books, surfing the web, and just hoping I run across something.

The TACA website has a ton of information. You can also join a yahoo group. What is the closest big city to you? It must be frustrating not having other parents locally to talk to. But I am sure you can find support from TACA even if you don't have a local chapter. I know the person that runs our chapter, so I will ask her if people out of the area can still get hooked up with a TACA mentor....that would be awesome for you.

 

[Stitch76]

The TACA website has a ton of information. You can also join a yahoo group. What is the closest big city to you? It must be frustrating not having other parents locally to talk to. But I am sure you can find support from TACA even if you don't have a local chapter. I know the person that runs our chapter, so I will ask her if people out of the area can still get hooked up with a TACA mentor....that would be awesome for you.

The closest big city is Nashville, TN (2 hours away).
The only support group I have found locally is in a town about 30 miles from me, but it is for parents of older children (middle school and older).
It is frustrating, and overwhelming. I just want the best for my little man. He has made great strides thus far, since his diagnosis three years ago, but we still have so much farther to go. I am always finding new things online to try. Some work, some don't, but that's the beauty of Autism, no two are alike.
Thank you for checking with your TACA chapter, I appreciate it.

 

[DOREEN1779]

I never used AGAPE but we do use Super-Nuthera. All the liquid vitamins taste vile. What we do is mix it with peaches ( Gerber baby) and add it to oatmeal. It works for my DS. I live in Central Jersey and we have very large concentration of children with Autism. Support groups are run through the pediatric departments of local hospitals as well as the school. You should ask your case manager to look into creating a support group for parents. You need the support as well as your son. There are a lot of "snake oils" out there and you need to be careful. I would first make an appointment with the Developmental Pediatric Neurologist and have them order bloodwork to check for abnormalities. Some of these vitamins are really high in areas such as Zinc and your son could have adverse reactions. I think seeing a Nutritionist is probably a good idea as well. There are dozens of people on the DIS Boards that understand what you are going through. Trust me, we understand because we have been through it and if you need someone to talk to just PM me.

 

[Stitch76]

I never used AGAPE but we do use Super-Nuthera. All the liquid vitamins taste vile. What we do is mix it with peaches ( Gerber baby) and add it to oatmeal. It works for my DS. I live in Central Jersey and we have very large concentration of children with Autism. Support groups are run through the pediatric departments of local hospitals as well as the school. You should ask your case manager to look into creating a support group for parents. You need the support as well as your son. There are a lot of "snake oils" out there and you need to be careful. I would first make an appointment with the Developmental Pediatric Neurologist and have them order bloodwork to check for abnormalities. Some of these vitamins are really high in areas such as Zinc and your son could have adverse reactions. I think seeing a Nutritionist is probably a good idea as well. There are dozens of people on the DIS Boards that understand what you are going through. Trust me, we understand because we have been through it and if you need someone to talk to just PM me.

Thank you!

 

[megan10310]

You sound like an excellent mother. He is lucky to have you as his advocate! I hope you are able to find a supplement that works.

 

[Stitch76]

You sound like an excellent mother. He is lucky to have you as his advocate! I hope you are able to find a supplement that works.

Thank you! I try my best.
I hope I find something too, (soon!)

Meanwhile I'll keep reading, and studying,
and most importantly loving my little man for his bouncy, flappy, spinny, funny, loveable, little self.
He is our family's heart. He has taught us more about LIVING LIFE, than we ever knew possible before he came along.

 

[taramesu]

I'm not familiar with AGAPE but I have contacted the manufacturers of various vitamins/supplements (for my DD5 w/PDD-NOS) to ask for free samples. Only once was I told that samples were unavailable.

I'll ask some of my fellow Autism momma friends & report back if any of them are familiar w/AGAPE.

 

[Stitch76]

I'm not familiar with AGAPE but I have contacted the manufacturers of various vitamins/supplements (for my DD5 w/PDD-NOS) to ask for free samples. Only once was I told that samples were unavailable.

I'll ask some of my fellow Autism momma friends & report back if any of them are familiar w/AGAPE.

Thank you for the info.

If I can't find out anything about this particular product, I am open to suggestions on others. I just want to try to find something that will help with his nutrition, that he will actually take.
I'll see if I can get some samples once I find something that sounds promising.