Lost and disorientated! Stumbling starter needs advice!

[Guest guest]

Hi everyone

Firstly, thanks to those who answered my yoghurt question. I will try it, as

Jack is mainly epileptic, and the autism is a result of the development delay

from his uncontrolled siezures.

Can I bumble on abit about how we're going and if anyone has any pearls of

wisdom I'd really love to hear them. I'm in the UK and no-one I've come into

contact with has ever heard of this diet and I'm probably slightly mad for even

trying it because I have to be the first to admit that Jack shows no real sign

of gut issues, but I'm desperate and...well, I'm sure you guys know how that

feels!

We started the SCD originally on 27th July after a failed stint on the

ketogenic diet. Jack can't use a spoon, so I couldn't give him the intro broth

etc, so I just fed him boiled chicken and well cooked veggies. I have to confess

I cheated because Jack loves his food and I didn't think he would eat the really

basic stuff, so I guess we really started off on an exclusion version of the

diet, in that I cut out dairy and all the illegal foods, but otherwise he ate

'normally': all legal foods, raw or cooked, and straight into the nut flour

recipes. The first week he did seem chirpier than usual (this could have been

his relief at coming off the keto diet though!), but there was no effect on his

siezures or his bms (can we talk poo for a moment? Jack goes every other day,

usually. He's still in nappies, but to me his bms are mushy, and before we

started this, they would always have large bits of food in them. Sometimes they

could be really mucusy, which is what got me to

thinking there might be a problem, but they're a good colour. I've raised the

gluten allergy question with all our docs, and they all say that Jack is too

healthy looking -he's a big chunky boy- for this to be an issue).

Anyway, week three Jack's siezures got really bad and lots of them, we were on

holiday at the time, and maybe this contributed to it. When we got back I read a

post from someone who had basically run the scd the same way I had and they were

advised to start again and cook everything - do it properly basically - so I

figured to give the diet a fair go I ought to do the same.

So, I started a fresh ten days ago and did the intro diet properly (amazingly

Jack suffered it very well!) for two days, then I started adding things

gradually. We are now on meat, fish, eggs, squash, courgette, green beans and

carrots, with cooked pear and apple and I had given him some raw banana but I'm

not sure if this didn't disagree with him or whether he was just having a bad

siezure day.

The thing is, I want to cut meat out of Jack's diet because of the possiblity

glutamate might be causing/contributing to his siezures, but I recognise the

fact he has a large appetite!. Can I add cooked veggies and fruit every day?

Like one a day now, or is that going to be too rapid? I have yet to see any

change in Jack's condition. Maybe this diet wont work for us, I don't know, but

I do want to give it the best chance, and I realise that it might take months to

have effect. How slow do I really need to go with Jack, given that diarrhea

isn't a problem for us? If I make sure I cook everything, will I be giving his

gut the chance it needs to heal if I press forward a bit more rapidly on

introducing foods? And can I give the yoghurt a go now, or should I wait a bit

longer given the fact I've only just started doing it properly, so to speak?

Does all that make sense? Sorry, I know it's a bit of a ramble, but I'm

feeling a bit lost and disorientated and I don't know if I'm just losing myself

in a little too much hope with this whole diet thing. Sometimes I'm completely

convinced that it all makes sense and that it could really make a difference,

other times I'm wondering whether I'm just in denial over the futility of my

son's condition (I guess this is the line the medics keep giving us anyway).

Any thoughts/opinions would be very gratefully received.

Take care everyone!

Anita, UK

Mother to Jack, 2.2 yrs, epileptic since 12months, autism diagnosis three

months ago.

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