Nutriiveda for kids with apraxia or ASD

[APToddlerMama]

Just curious if any moms of kiddos with an ASD or apraxia have used nutriiveda and if so, what were your experiences? I've been on an apraxia forum for years and they're very into NV but there are numerous things making me think its a scam. However, I'm also hopeful that maybe its not...

Has anyone used it?

[petriescz]

Are you on the yahoo group apraxia list with Lisa Geng?  I am totally skeptical and think the NV is a scam.  She has been promising research trials for years yet all that is offered is 100% positive testimonials.  That in itself is a scam.  Are you a member of the Facebook group apraxia-kids support?  I would ask this question on those boards. Or just do a search on those pages for NV.  I have seen several threads on NV over there.  FYI-we decided against NV for our 3.5 year old son with apraxia.  He has made amazing progress with great speech therapy.

[APToddlerMama]

Yes...the yahoo group with Lisa Geng is the one I'm on. I thought the FB group was somehow related to her too but I will have to check it out. I swear she has like 7 different websites...she's got her hands in everything so it makes it harder to find unbiased info on NV. The fact that there is absolutely no research still on NV was one of the things that made me skeptical too. I've been hearing about it for 2.5 years .... Thanks for your input!

[dandelionsmiles]

I'm in that group too.  Not really so happy with the way that people who remark that Nutriiveda didn't help are treated.  The dynamics are...odd.  My guy is six, and we did do the fish oil, but most of it was speech therapy, and a lot of it.  He is doing so well that he would not qualify for speech from the school if it were not for the global apraxia dx.  Speech is considered a "support" now.  His articulation is at age level, and his language is above.  He still has vocal control issues, an "accent" for lack of a better word, and prosody issues.

[SpottedFoxx]

I've never heard of it and I'm on the FB page so it's safe :)  

I hate snake oil salesmen/women.  Preying on special needs parents is just hideous in my opinion.

[SpottedFoxx]

http://www.apraxiaadventures.com/2011/05/07/thoughts-on-nutriiveda/

Just found this.

[petriescz]

Yes, make sure your facebook group is the apraxia-kids group.  There are two of them.  I think Lisa Geng does have a ton of sites too.  I just found a plea to try Nutriveda from her on an autism support discussion board.

[APToddlerMama]

Thanks everyone! Ive done some more searching around and I'm pretty certain it's a scam. There is an SLP who writes a blog...Testy Yet Trying... Who has a daughter with apraxia. She details trying it on her blog too. As a side note, the blog is fantastic. She created basically a free version of Kauffman cards that you can print off.

[beachgirl]

I have no involvement with Lisa Geng or her organization. I began using NV for my daughter in February, when she was about 2.5. She was "unofficially" apraxic and still wasn't putting 2 words together. Within three weeks of starting the Nutriiveda, she was putting 4 words together. Her intelligibility and fluency have improved incredibly since then. We just had her retested through EDIS and her expressive speech was in the 94th percentile for her age. Needless to say, I fully believe this product works for apraxia issues, with one caveat - she had some weird behavioral stuff on the vanilla flavor, so we only use the chocolate. (I have no idea what would have caused that.)

Now, she has some ODD issues that the Nutriiveda has not helped. But it helped so much with her speech, that I don't care. I continue to pay for and use the product because it made such a tremendous difference in my daughter's ability to talk. I always feel so bad for parents on the other apraxia listserv who search so diligently for answers, therapies, studies, etc. but don't really have enough faith to try a biomedical approach. My heart goes out to them, and I'm thankful I am not there anymore (though I was not too long ago!). The Nutriiveda totally changed my world in that way. It made me a believer. :)

[SpottedFoxx]

Beach that's a heck of an assumption to make.  Just because someone hasn't gone down your path, doesn't mean they haven't tried a biomedical approach.  It also doesn't warrant your feeling sorry for someone because they chose to go a different way than your own.  I'm glad this product worked for you.  For every one "it worked", I can find a lot more of "it's snake oil" on this particular product.   Plus, your child was never diagnosed as being apraxic so your findings that this product helps apraxia really aren''t valid IMHO.  There are a lot of speech disorders that can present initially as being apraxia, when in fact they were other challenges.  

[APToddlerMama]

Thank you for sharing your experience beachgirl. It's not that I don't believe in a biomedical approach, because I do. I'm just not sure if NV is something I believe in.

[beachgirl]

Hi SpottedFox --- I was just trying to share my experience in the hope that it might benefit someone else. That's how I came across Nutriiveda in the first place (on a blog), and what made me consider using the product. Whether you try it or not is, of course, completely your choice!  However, it is absolutely within my rights to feel sorry for whomever I wish to. I don't mean that in a patronizing way. I just mean, I see so many parents going through these laborious, time-intesive, expensive, excruciating therapies to try to get their kids to talk, and my heart does go out to them. I have no idea if NV works for everyone. It did for us. And FYI, my daughter was unofficially diagnosed with apraxia by a developmental physician and SLP, separately. The problem is that she was only two, and it was against the policies of both of their groups to give an official diagnosis before the age of three. I have the word written on reports from both the MD & the SLP, so I'm pretty sure I'm not mistaken. 

Of course, I believe Nutriiveda works. However, I understand being a skeptic. I am one as well. :)  It is within your power to say that you won't try the product. But you cannot say that it has not worked for other families. 

And AP, I understand thinking that it is not something you are sure you believe in! But truly, you just can't know if it works for YOUR child until YOU have tried it. I was very skeptical of NV going into it, but desperate. After a rough couple of weeks on it, just when I thought I would stop, my daughter began talking and hasn't stopped since. Every time we have taken her off NV (2 times for 2 weeks each time) we have seen significant regressions, not in sentence length but in articulation. Incredibly sloppy word articulation, words running together, & also less facial expression again. I hope she doesn't have to be on this forever. The lady who I buy it from online said that her son took it for 2 years, "got better," and now is off it completely at age 4. I have seen his before and after videos and they are persuasive. If that is our story as well, I will be happy with it. 

I wish the best to all of you and your children. 

[beachgirl]

Also, AP, you say you believe in the biomedical approach. I'm curious as to what you have done. We do a modified GAPS diet but started that over a year ago. Also, do you have your child on CoQ10? I like that supplement a lot for energy, which of course helps them talk! We also tried fish oil + E for a while and I actually found that it (weirdly) made my daughter have more meltdowns, tantrums, aggressive behavior etc. No idea how to explain that one, though I've tried researching it. Also, I've heard carnosine is good. Have you tried that?

Just curious what other biomedical approaches parents take for apraxia. Thx!

[APToddlerMama]

Originally Posted by beachgirl 

Also, AP, you say you believe in the biomedical approach. I'm curious as to what you have done. We do a modified GAPS diet but started that over a year ago. Also, do you have your child on CoQ10? I like that supplement a lot for energy, which of course helps them talk! We also tried fish oil + E for a while and I actually found that it (weirdly) made my daughter have more meltdowns, tantrums, aggressive behavior etc. No idea how to explain that one, though I've tried researching it. Also, I've heard carnosine is good. Have you tried that?

Just curious what other biomedical approaches parents take for apraxia. Thx!

We've tried lots of diets...GFCF, yeast, Feingold, fail safe....and also fish oil and vitamin e, digestive enzymes, zinc, vitamin d. He has more going on than just apraxia and had sensory issues and hypotonia, as well as fine and gross motor delays. We have found CF to be incredibly helpful, as well as fish oil. I think the enzymes are helpful too.

[beachgirl]

Thanks very much. Can you tell me what CF stands for? My daughter also has mild truncal hypotonia, as well as gross motor delays. (the fine were resolved with the NV and her OT now says she is age appropriate in this area) She previously had oral sensory issues (screamed when mouth was touched, covered ears in stores, etc.) but that has since gone away. Have you ever come to a conclusion as to root cause? Did you have leaky gut or yeast issues during pregnancy?

sorry, I guess this has gotten off topic from the original thread. Hope that's ok. Those should be my last questions. :)

[APToddlerMama]

CF is casein free. I really have no idea of the cause of his issues.... I wish I knew. I'm sure I do have a leaky gut as well but who knows. Good luck

[Apraxiamama]

I have four cases of chocolate Nutriveda (retails for $88.00 +shipping) for sale. Make an offer if you are interested! Thank you!

[mandog73]

Hi there. I came across this when I was searching for some info on Nutriiveda to show a friend. I just wanted to jump in and say that I am a mom of a 4 year old and a 5 year old. My 5 year old has a genetic syndrome, severe apraxia and autism and my 4 year old has autism. I first tried Nutriiveda for them in May of 2010 after taking it to my pediatrician and neurologist who both agreed it couldn't hurt (although they were skeptical it would help with speech... they said the whole food nutrition and vitamins and minerals would be good for them). They have both been on the chocolate NV now since May of 2010 and they absolutely love their "chocolate milk". I have see amazing progress. The only supplements they get are this and fish oils and my oldest takes a supplement for a deficiency. I am one of the biggest skeptics out there when I see all of the psychiatric drugs and other medications that doctors suggest for autistic kids. This is just my opinion, but I wanted to share it from a mom who pays for the supplement every month and is not a sales woman (I don't sell it and I don't get it free... it is pricey but worth it to me). My severely apraxic son has recently started reading and talking. I do not believe one thing is the answer but rather several and I don't think any one thing is for EVERYONE, but for us, this worked as part of a whole therapy schedule. 

[Mamabear76]

Just came across this post while searching for info about other treatments.  I am familiar with the Group that you all have mentioned and we did try Nutriiveda in the past.  In our case, it did not seem to make any difference in our child and we stopped using it. The Nutriiveda was sent via an "Auto Ship" because the Company that manufactures it is a Multi Level Marketing Company. Per the "group leader's" own Website... (the one that sells the Nutriiveda), she is an independant executive (or distributor) for the MLM Company.  One must wonder if there is a profit to be made from selling this Product.  Another problem with the Nutriiveda is that it is set up to be shipped on a monthly basis.  This Product's original intent was to be a weight loss Product for adults and the "adult dose" is 2 scoops 2 times per day.  In regard to using it for children with Speech issues, the Group Leader advised that younger children should have smaller doses. Even though children should have smaller doses, the amount of Product that is shipped each month is equal to what an adult would consume....therefore, a parent of a young child will end up with a surplus of the Product. People spoke about this problem, but nothing was done to change the issue.  There have been many questions and concerns about this Product, and the Group Leader does not seem to answer them IMO.  The Group appears to be heavily moderated.....especially in regard to use of this Product...if one asks a question, it may be deemed as an "attack" on the leader.  Questions are often put down or deleted.  Seems like only positive, glowing reviews and comments are accepted. People have posted valid Research Studies re their concerns about some of the ingredients in this Product and one of these was deleted.  Some children are now taking MORE than the suggested ADULT DOSE of this Product now....this is concerning.  Most concerning, is the manner in which any question or comment that even "hints" at being a negative one re the Product is not taken seriously, and is attacked or put down. As with any Product, both the good and the bad should be considered valid info by a person who suggests/promotes use of it.  The Group used to appear to be extremely one sided, and this reduced my level of trust in it.  We had several extra containers of the Nutriiveda built up when we stopped using it.  I hated to throw it away because we spent so much money on all of those cannisters.  They sat gathering dust for a few months- big waste of money.

[kwynsMom]

where are you located??   i'm in ontario canada....  interested in trying to see if this would benefit my son of 14.

thanks!