Update on Caleb after 1 month on NV

[Guest guest]

Hi everyone

My son, Caleb is 33 months old and has a provisional diagnosis of verbal

dyspraxia (in UK so not termed apraxia). He has very little spoken language

that is clear to people other than us but his receptive language is good.

He's a typical toddler, boisterous, has temper tantrums, and can be very

defiant, but he's also a cheeky, lovely boy. As we are in the UK, the

health system is very different to in the US, and his diagnosis is from a

speech therapist rather than a pediatrician. I am in discussions with my

husband regarding seeing a paed to have a thorough assessment of him, but at

the moment he is fairly resistant. If anyone has any advice as to how I

could go about persuading him that this would be a good idea, please let me

know!

We started Caleb on NV 1 month ago. He eats 1 scoop once a day mixed with

yogurt and 2 capsules ProEFA and 1 capsule ProEPA. I'm not sure if we should

spread out his dosage over the course of the day? We have seen some

improvements in his behaviour, his hair is thicker, the excema on his skin

seems to be improving and everyone is commenting on how tall he is. We are

seeing some language improvements, although these seem to have plateaued.

He really struggles with intelligibility and I'm getting so frustrated with

the situation as well, which I'm sure isn't helping.

I'm not sure now how to move forwards. The wait for NHS therapy is about 6

months, and we are paying for a therapist to see him but at £60 ($110 ish)

per hour, this is really difficult for us to have more than twice per month.

I feel as though I've reached a point where I don't know what to do for the

best, and I'm struggling with the toddler behaviour while watching my

friends' children blossom into creative, imaginative little people which

breaks my heart. I also have a 7 month old so I'm having to balance a lot

of needs.

The NV is definitely having a positive effect, but should I increase his

dosage? Should I split it over the course of the day?

Any advice on any of my issues would be very gratefully received!!

Many thanks

Mawgan

[Guest guest]

Hi Mawgan!

It's more common for some reason in our group for the moms to be a bit more

aggressive in seeking evaluations for our " late talking " children while our

husbands feel we should just give them some time. If the mom and dad work well

together the two opinions can actually work very well because then there is a

balance. So good that the two of you are talking it out. I don't know exactly

what you can say to him to make him agree with you about taking Caleb to see the

pediatrician- but one thing I used to say to relatives that thought I was being

overly paranoid was " I'm sure you are right but I want to do this just in case-

so I never have to look back and say " if only " and typically that worked for

me. Perhaps some of the dads here can provide greater insight?

And for you...please try not to compare your baby to others who don't have any

delays in speech. If you can try for one day, one hour even to not be able to

say anything you would go wild with frustration. I mean imagine not even being

able to express important thoughts! And in addition many of our children are

affected in a multifaceted ways- so even more to deal with. What I can assure

you is that the way your child is today compared with others his age is not

necessarily any indication of future success. That's why they have classic

fairy tales like The Ugly Duckling http://ivyjoy.com/fables/duckling.html Most

important one important lesson learned in between the lines of this story is

that the duckling should be protected from those that would misjudge him harshly

to protect his delicate self esteem. In HS your son may be the golden child and

the table turns. I mean...hey you know the Radcliffe story -you're from

the UK!

And besides, it's my opinion that those of us that have our children on fish

oils and NV will have an incredible edge in academics, growth, and cognitive

function over the rest. I know you've read this -but for those that haven't

http://pursuitofresearch.org/science.html

As far as NV, fish oils, surges

The fish oils as they are fat soluble I believe it's fine to give them once a

day -many of us do and while in some cases children do need to have more than

one dosage a day (especially in regards to ADHD and school days) the NV it's

highly recommended to split into two servings as it's water soluble.

Is Caleb regular or constipated? Is he well hydrated

http://pursuitofresearch.org/faq.html#serve And just to point out -the

recommended amount of liquid is not just for those on NV...it's the amount of

liquid that is recommended for humans in general

Also while I don't typically go by weight -one of the parents with a 23 month

old that weighed 40 pounds (Google says that 18.14 kg) also only noticed more

subtle improvements at one scoop, and based on the weight I told her to check

with her child's pediatrician about raising the dosage up to two scoops (split

into one scoop twice a day) and Beth sent me

" I doubled the dose today. After his first scoop, he started spouting out

phrases and words out of nowhere. Like after each bite at lunch, he would say,

" Mmmmmm good stuff! " HE said a lot more too. I had his hair cut today and the

stylist said she could understand what he was saying. I wonder if there is a

correlation. I don't know how quickly NV kicks in to know. I guess this would

be a surge for sure. "

(Beth is a friend of Ginny's from this group who has 3 autistic son and a

husband with TBI on NV. Beth isn't a member here but if you would like to speak

with her let me know and I can introduce you via email offlist)

So...not knowing Caleb's weight unless he's a larger child like Beth's I'd stick

to the one scoop and just try splitting that into 2 dosages a day. Are you

using a level or heaping scoop? For sure you could split one heaping vs level

scoop in half.

We've read many times that sometimes it's just a wee difference of a half scoop

more that we see the more dramatic vs milder improvements- and of course look

for 'all' of these areas at once! http://pursuitofresearch.org/pursuit.html

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