Our NV update

[Guest guest]

Hello all,

I wanted to send along an update on my 4.5 year old son's progress on NV and

where we are at now - it may not be the " update " you are expecting, but it might

also offer another option to try if you are not seeing the results you hoped for

with NV or just have misgivings about it. I had on NV for two weeks - we

began with 3 days on 1/2 scoop, then increased to 1 scoop for a few days and

then tried 1/5 scoops for a few days before reducing the dosage back to 1/2

scoop for the remainder of the two weeks he was on it. The reason we had to

reduce the dosage was that was starting to hit his head constantly and

having violent outbursts/tantrums; he was also starting to make very unusual

rapid and unfocussed eye movements that almost looked like absence seizures (he

has never had any seizures before and his EEG was normal 4 months ago). We were

expecting some of these side effects as others giving NV to their children had

mentioned similar things, but 's behaviours were so uncharacteristic of

his otherwise even-tempered and happy disposition that it concerned us,

especially the head hitting which he never ever did before. , did however

make some language gains in the short time he was on NV - babbling more, some

spontaneous words, and better eye contact. Initially he slept better, but then

as the dosage increased, his nights became wakeful and he was up for two hours

every night which was hard on him and us! As says that NV is dosage

dependent, we decided to back up our dosage to where we saw gains, but none of

the negative side effects - that was 1/2 scoop for (he is only 31 lbs).

In the end, we began to wonder about NV and it's long term usage - is this

something he would need to take for his whole life or risk regressing? That is

what appears to be the current position on NV and we wanted to try to find a way

to " heal " 's symptoms rather than just manage them with a supplement. We

decided to discontinue the NV for now and begin the Specific Carbohydrate Diet.

Here is what has transpired on our first 3 weeks on SCD: has adapted very

well, despite our worries that he would NEVER eat the foods allowed as he was an

incredibly picky and limited eater! In terms of food, I started SCD by offering

foods with the textures I knew liked - I substituted strips of pork loin

for the ham strips in the very beginning and that got him going on plain

baked/boiled meats; he liked applesauce already so adding pearsauce was easy; he

liked popsicles so I make carrot puree/grape juice popsicles and red grape juice

and avacado popsicles. Adding simple " dry " foods has helped immensely - the egg

bread, banana " cake " and pumpkin/squash " pie filling " are staples that he eats

every day and allow me to hide copious amounts of vegetables in his food! At the

moment, he eats everything I give him and has a good appetite! I remember

starting the SCD and saying I would aim for 10 days and here we are at 21 and

doing well. I do cook ALOT and that is hard on me and takes much planning b/c I

can't just pull something out of a box - I work full time and have two other

children so it takes much committment to keep up with SCD, but it is so worth

the effort. is more present and makes eye contact almost consistently

now; he is so much more even-tempered and responding to requests more readily;

he is taking fermented fish oil daily which is helping his language skills - he

had little or no functional language 3 weeks ago and today he is using many

words to label or request - he is also finally calling me " mommy " - that alone

has been worth every late night of cooking! babbles constantly and is

starting to sing songs that he knows - I am certain that will speak -

maybe not in the next month or two, but certainly in time and that is a precious

gift that the SCD is giving us - it is allowing his tummy to heal so that the

nutrients and supplements can be absorbed and do their job! is a happy

little boy who attends preschool full-time - his caregivers have noticed much

more attention and interaction from him and they have been 100% cooperative

about his dietary " rules " , supporting us in any way we ask, for which we are

grateful. Finally, is regaining some motor skills he lost a year ago - he

now eats nicely with a spoon and he is beginning to undress himself; he is also

showing gains in motor planning - can you believe he is pedalling a tricycle

when just 3 weeks ago he couldn't? That's no coincidence in our eyes! There have

been many surprises over the last few weeks, at first very subtle, and now daily

- the SCD is indeed restrictive and labourous to follow, but no other supplement

or " therapy " or intervention has given us these gains in so little time!

We are looking forward to moving forward with - sometimes slow, sometimes

by leaps and bounds, but moving forward at last!

Tatyana

mom to 4.5 ASD

[Guest guest]

That is fabulous! Congratulations!