Nutriiveda for kids with apraxia or ASD - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 22 Old 07-31-2012, 12:15 PM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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?
APToddlerMama is offline  
#2 of 22 Old 08-01-2012, 02:22 PM
 
petriescz's Avatar
 
Join Date: Jul 2011
Posts: 8
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

petriescz is offline  
#3 of 22 Old 08-01-2012, 03:59 PM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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!
APToddlerMama is offline  
#4 of 22 Old 08-02-2012, 06:22 AM
 
dandelionsmiles's Avatar
 
Join Date: Aug 2012
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

dandelionsmiles is offline  
#5 of 22 Old 08-02-2012, 06:47 AM
 
SpottedFoxx's Avatar
 
Join Date: Feb 2010
Location: Philadelphia Area
Posts: 815
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

Eyelet likes this.

Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
SpottedFoxx is offline  
#6 of 22 Old 08-02-2012, 06:49 AM
 
SpottedFoxx's Avatar
 
Join Date: Feb 2010
Location: Philadelphia Area
Posts: 815
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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

 

Just found this.


Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
SpottedFoxx is offline  
#7 of 22 Old 08-06-2012, 04:18 PM
 
petriescz's Avatar
 
Join Date: Jul 2011
Posts: 8
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

petriescz is offline  
#8 of 22 Old 08-06-2012, 08:37 PM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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.
APToddlerMama is offline  
#9 of 22 Old 08-13-2012, 06:11 AM
 
beachgirl's Avatar
 
Join Date: Jul 2008
Posts: 47
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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. :)

beachgirl is offline  
#10 of 22 Old 08-13-2012, 09:21 AM
 
SpottedFoxx's Avatar
 
Join Date: Feb 2010
Location: Philadelphia Area
Posts: 815
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.  


Walking to raise money for Apraxia - feel free to join me if you are in the area or donate http://www.apraxia-kids.org/southjerseywalk/juliefoxx
SpottedFoxx is offline  
#11 of 22 Old 08-14-2012, 01:26 PM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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.
APToddlerMama is offline  
#12 of 22 Old 08-14-2012, 02:19 PM
 
beachgirl's Avatar
 
Join Date: Jul 2008
Posts: 47
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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 is offline  
#13 of 22 Old 08-14-2012, 02:25 PM
 
beachgirl's Avatar
 
Join Date: Jul 2008
Posts: 47
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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!

beachgirl is offline  
#14 of 22 Old 08-15-2012, 06:50 AM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Quote:
Originally Posted by beachgirl View Post

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.
APToddlerMama is offline  
#15 of 22 Old 08-16-2012, 04:12 PM
 
beachgirl's Avatar
 
Join Date: Jul 2008
Posts: 47
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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. :)

beachgirl is offline  
#16 of 22 Old 08-16-2012, 09:22 PM - Thread Starter
 
APToddlerMama's Avatar
 
Join Date: Oct 2009
Posts: 2,173
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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 smile.gif
APToddlerMama is offline  
#17 of 22 Old 09-10-2012, 10:24 AM
 
Apraxiamama's Avatar
 
Join Date: Sep 2012
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I have four cases of chocolate Nutriveda (retails for $88.00 +shipping) for sale. Make an offer if you are interested! Thank you!
Apraxiamama is offline  
#18 of 22 Old 10-03-2012, 08:50 AM
 
mandog73's Avatar
 
Join Date: Oct 2012
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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. 

mandog73 is offline  
#19 of 22 Old 10-15-2012, 07:27 AM
 
Mamabear76's Avatar
 
Join Date: Oct 2012
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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.

Mamabear76 is offline  
#20 of 22 Old 10-17-2012, 10:48 AM
 
kwynsMom's Avatar
 
Join Date: Oct 2012
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

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

 

thanks!

kwynsMom is offline  
#21 of 22 Old 11-27-2013, 08:32 AM
 
kimmy13's Avatar
 
Join Date: Nov 2013
Posts: 2
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Hi Kwyns mom,

 

did you ever try th nutriiveda? I have a 14 year old apraxic son. And wondering if I should try it.

 

thank you :)

Kimmy

kimmy13 is offline  
#22 of 22 Old 09-10-2014, 09:23 PM
 
Join Date: Sep 2014
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
our experience with apraxia and Nutriiveda

My experience with apraxia is not with a child but an adult who developed apraxia due to a huge brain hemorrhage. He had 90 days of rehab for right side neglect and aphasia with apraxia of speech. A friend whose son has apraxia had wonderful results with NV chocolate. When she heard about my husbands problems, she gave me a couple of jars of it and told me where to order it if it seemed to help. Well he began doing better with his speech and we started ball room dancing 3 months after rehab. I wasn't sure the Nutriiveda was helping or what, because of much therapy continuing. Sometime this year I began cutting back on the NV and completely stopped it by mid July. By late July the apraxia was back with a vengeance and it was like my husband had not improved at all in the past year. I lay in bed all night racking my brain trying to figure out what was going wrong. He couldn't even get the simplest words out, and not any phrases. I realized that the only change was the Nutriiveda being taken out of his diet. I started it back right away and in a few days he was improving and the other day I was coaching him and was trying to get him to say subjective pronouns with a verb and said " We Drive, I_____" He mumbled something and giggled and I asked him to repeat what he had said. He said "You drive 500 miles and hour" HE was actually able to tease. Now, I have noticed when he doesn't get 3 to 4 scoops a day divided between morning and evening, there is a return of the apraxia. Just my 2 cents worth. Oh by the way, I decided to take it also because I am his full time caregiver and still working full time as a Hospital radiology sonographer also. I believe it helps me cope with the sleep deprivation that comes with caring for someone with type 1 diabetes and seizure disorder. Oh by the way, my husband quit having seizures when I increased the Nutriveda from 1 scoop a day to 3-4 scoops / day. He was still having seizures till then, in spite of seizure meds.
Wife of stroke victim
sewingmom is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off