Question about strong flavored batch of NV Chocolate and an update

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My daughter Niamh will be 4 next month she was diagnosed just over a year ago

by a developmental pediatrician with suspected verbal apraxia (and since then

her neurologist has said she probably has global Apraxia too).

She is on ProEFa 2 capsules daily, and has been on NV off and on since last

summer. I say off and on as we have periods where she takes it fine, then she

stops wanting to take it and refuses the food it is in.

Initially she was on vanilla (the most we consistently got into her was 1/2

scoop per day), then she went off it so we tried chocolate which she didn't

like at first but we gradually increased the amount she took.

I thought we had finally cracked it a couple of months ago as we were

consistently getting a scoop a day in - I hid a tablespoon of vanilla in her

cereal then gave her a container with 2/3 scoop choc NV and a spoon and called

it chocolate sprinkles - she would add it to her cereal and eat it up. In fact

she liked it so much she was drinking the leftover milk from the bowl (she

typically won't drink milk or milk substitutes at all ). I even got her to drink

a glass of NV choc milk (made with a little traderjoes organic choc syrup) -

which is huge as I've never got her to drink any kind of choc milk before.

Then 3 weeks ago she and I went on a trip to Ireland and this coincided with

opening a new can of Chocolate NV. The new can smells totally different - it has

a strong herbally type smell the previous batch didn't. She missed 2 days as we

were on planes and travelling, then the first 2 days at my mums she ate hardly

any breakfast. Then she started saying no sprinkles and would totally refuse to

eat it if there was any in it (and just putting a little vanilla in didn't work

either.)

We are home now and I'd really like to get her back on the NV - any ideas on how

to overcome the strong herbally smell/ taste of this batch ? (I have 2 cans of

it which is a couple of months supply so I don't want to order more).

She was in EI ST from 18m to 3 years, and had been getting 3x a week 30 min

individual ST through the school district since she turned 3. She attends a

normal (private) preschool 3x a week. I started NV around the same time we

transtioned to SD. We were never told what grade her Apraxia is, but her current

SLP (who only started working with her last June after she was already on NV),

said based on the notes and assessments done when she transitioned she thinks

she was Moderate then.

She has made a lot of progress in the last year - she is now quite a chatterbox,

and although she still doesn't sound like a normal almost 4 yo people understand

her much better than a year ago. She still has many sounds she can't make eg " K'

- she can say Car spontanously but no other " k " words (she can say a few more in

therapy), " F " she can say some words in therapy but none spontaneously, " G " -

she just had a breakthrough and can now say gas, go, goose, ghost spontaneously

(all words we have worked on), but no others, she also can'y say " S " , " R " , " L " ,

some " B " words she can say others she can't.

She also has some strangeways of saying things, and does things like using

" asking " to mean both asking and telling, mixes up names of mealtimes eg calling

lunch breakfast etc etc

Anyhow, everyone who knows her comments on what huge progress she has made in

the last year.

I had voiced some concerns earlier this year about her poor prewriting skiils

and lack of handedness, and although she is still behind she did seem to be

improving on the full scoop (and started to show a slight preference for her

right hand)

We have never seen dramatic changes in a a few days of being on NV - it has

always been more like she just progresses faster on it.

She did seem to be making even more progress on a full scoop a day (kept getting

messages from her SLP saying what a great session she'd had).

We have never seen regression when she is off the NV, but it does seem like her

progress is slower off it.

So I really want to work out how to get her back on NV - any hints on how to

deal with the " herbally batches " . Also I wanted to get an OT assessment done in

the next few weeks before her IEP - should I keep her off the NV until thats

done ? (her IEP is in 4 weeks, her dev.ped follow up isn't until a month later).

Thanks,

mum to almost 4yo twins Niamh (Apraxia) and Aidan (previously globally delayed

now pretty much caught up, sensory issues)

and 7 yo (NT)