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Luca’s Story

VERONICA’S & LUCA’S STORY

DAY ONE

The formula Luca drinks tastes like earwax. I am using up an old box of blackcurrant flavored earwax that Luca refused to drink, which is nearly at its use-by date. As soon as I drank the first cup of it I felt sick. Not a bit sick, REALLY sick. This eventually subsided after 2 hours, by which time I felt really hungry. This went on all morning – basically I could choose between feeling very hungry, or like I was about to throw up. It made no difference whether I drank it hot, cold or room temperature. Every time I coughed or sneezed, that horrible taste came back into my mouth.

Then I started diluting it with more than twice the recommended amount of water and I hardly felt sick at all. At this dilution it had very little taste as well, and I found I was able to drink more of it despite the considerable increase in fluid volume.

I got weird light-headed sensations a couple of times which I think were low blood sugar. I actually felt physically weak and needed to sit down. They went away when I had more Neocate.

When my husband cooked dinner the smell made my tummy rumble in the most amazing way. It was like a thunderstorm! The neighbors went rushing outside to bring in their laundry. (No, not really.) I wonder if a kid with an inflamed intestine would have felt pain?

Little Luca thought it was hilarious that Mummy was drinking his formula and didn’t eat food today.

DAY TWO

I did not have nausea today, except when I tried a full-concentration cup again. I wondered if I was just getting toughened up to that great Neocate taste, but apparently it is the dilution that makes the difference.

I also realized that if I space out the drinks of Neocate very evenly through the day (about one every 2 hours) then I don’t get light-headed. However I have been feeling tired and weak. I checked the calories and I have had 2,100 calories which is fine for an adult woman.

What I have been getting is salt cravings. I am fed up of having sweet stuff endlessly and I feel as if I don’t have enough salt. I am a bit of a salt maniac so maybe this is just me. Oddly enough I am not at all bothered by having just liquid and I have not had cravings for food at all. I think this is because eating has become such a dysfunctional activity in our household that it is a relief to drink in front of my son instead of eating while locked in the kitchen or sneaking a few rice cakes while shut in the toilet. I am also greatly enjoying the total absence of vegetable peeling and dish washing!

I have played around with mixing methods. I shake my son’s formula in a sippy cup and it never makes lumps but when I try to stir mine in a cup it just won’t mix. I scoop the lumps out with a fork and eat them. I find them quite nice! I must be mad.

At the risk of committing “over share”, I went to the loo today accompanied by lots of cramps and griping pains… the sort you get when you have developed a tremendous attack of holiday diarrhea. I’m curious to see if this is a transitional thing or if it continues.

DAY THREE

Oh this is just awful! I woke up today with a tummy ache so bad I walked into the kitchen bent over at 45 degrees and my three-year-old said “Oh Mummy! You’re like me! You need medicine.” I felt as if I had been punched in the guts.

I had incredible gripes and cramps all morning as if I was about to get a tremendous attack of diarrhea, and sprinted to the loo continually, but there
was actually no toilet action at all. If my son gets this, no wonder he is refusing all attempts at toilet training. How do you know when to run to the potty if you feel you are about to go LITERALLY ALL THE TIME?

I don’t feel any hunger pangs in my stomach at all now and I have to watch the clock all the time to remember when to drink more Neocate. I need to stick to every 2 hours regular as clockwork to avoid feeling weak and tired. My intake was below the right amount today as I just forgot.

The tummy pain gradually subsided after midday when I started getting diarrhea. Is this my intestinal bacteria staging a protest, now that they have nothing to eat? I certainly understand why my son gets so foul tempered before a bowel movement if he feels like this. I am wondering if I would benefit from a bit of fiber? I give my son an osmotic laxative. He has had fiber in the past which didn’t help, but I wonder if a kid on Neocate only would benefit from fiber AS WELL AS an osmotic laxative?

I gave my little boy a diluted version of Neocate today and he drank two cups back-to-back, which means he got the normal dose of powder he would have in one cup but he wolfed it down instead of needing endless coaxing. Quite a result! I am also watghing the clock to try to make sure he gets regular doses to maintain his energy levels. I am not sure how cooperative he will be with this….

DAY FOUR

Day 4 did not go at all as planned. I woke up at 3am with a sore throat, burning up my nose… yes, a cold. I crept into the kitcen for some vitamin C and a cup of Lemsip (In case you don’t know it, it is a cold remedy with paracetamol and epinephrine). Unfortunately for me, the only flavor I had was…yep, blackcurrant!!! compared to blackcurrant neocate it was simply delicious, which is not something I ever thought anyone in the world would say about Lemsip.

The vitamin C tablet got stuck in my throat and would not go down with water, so I panicked and ate a rice cake to shove it down. Then I sat feeling guilty for a whole hour because if my son did that, he would be in agony for the next 3 days.

Later in the day I had a flash of inspiration. Instead of coming off this thing by suddenly eating everything, why don’t I carry on as kids with eosinophilic disorders do if they go into remission? i.e. try eating one single food to test whether there is an allergic reaction.

So now I am pretending to be “trialing” rice and still drinking Neocate, and the result was not what I expected.

I am going utterly mad for food, all food, anything. I crave tastes and textures and variety. I have found the psychological side of this experiment puzzlingly easy so far, but that has all gone now. I am going nuts for food. I have ravaging hunger pangs, obsessive thoughts, and terrible attacks of anger or irritation when all I can have is yet another rice cake. My stomach has remembered what it is missing and is going berserk.

The cold has turned out to be very mild so that is not bothering me, thank goodness.

I had no cramps or tummy pains all day, in fact no toilet visits at all. It feels as if my whole tummy has come to a complete halt. I feel too full and it
is making me irritable.

I am going to try to keep this up for the rest of the week, just having rice and Neocate (and the occasional delicious cup of Lemsip!).

DAY FIVE

Today went well and the wild food fantasies calmed down a bit. There were a few twinges in the tummy department but no pain and nothing happening in the toilet!

I feel as if I have done the most amazing detox program. I suddenly feel cleansed and invigorated, which is certainly not what usually happens when I have a cold! I forgot to mention that since yesterday I have had no dizzy spells or tiredness. I really do want to go to the loo though. If nothing happens tomorrow I am planning to take a senna tablet.

I can definitely say that the following menu items are totally gross:
Puffed rice with neocate as milk
Boiled rice pudding with Neocate as milk
Baby creamed rice with Neocate as milk
Any form of rice contaminated with Neocate

I got so bored with drinking Neocate that I tried mixing it very concentrated into a syrupy mixture, left it in the kitchen and ate a spoonful, like soup, each time I walked past. It was very bitter but didn’t make me feel sick like this. I washed it down with a glass of water each time to make sure it didn’t do something horrible to my stomach.

I have also upped my intake and I had 2500 calories a day now (not including rice), which I think may actually be a weight-gain quantity. I’ll weight myself at the end of this!

All in all today was pretty uneventful.

DAY SIX

This morning I was mixing up a glass of Neocate and my little boy suddenly shouted,
“That’s MINE! Give that to me!”
“Oh, but Mummy’s having your milk too,” I said (we always call his formula milk). He clearly didn’t think the experiment was funny any more. In fact he was furious.
“What shall I have then?” I asked him.
“YOU… HAVE…. A CUPPA… TEA!!!!” he screamed. “AND SOMETHING FROM THE FRIDGE!”

I thought this was so funny and it seemed like the perfect moment had come to end the experiment. So I did. I just ate all the usual stuff and it was fine. Things in the toilet department seem to have gone right back to normal with no fuss either, which was a pleasant surprise.

The things I want to remember from this are:

1. On Formula I got very sensitive to the smell of what people had eaten on their breath. I always wanted them to get away from me and sometimes it made me feel very sick. I found alcohol and garlic the worst but even coffee was quite gross.

2. Cooking/food smells made my stomach and intestine spring into action dramatically.

3. My body stopped telling me I was hungry and I needed an external reminder to eat.

4. Nausea was always present to a greater or lesser extent.

5. I felt lightheaded and weak if I went two hours without a feed. Sometimes this coincided with a wave of nausea and it helped to eat a spoonful of sugar if I couldn’t face formula.

6. Extreme over share but I think it is useful to know… When I did my business in the loo it had that weird vomity smell and it BURNED. Wiping hurt and I needed to wash as a matter of urgency. I used cold running water which was wonderful.

7. I sometimes had cramps and thought I needed the loo imminently and this could go on for several hours. I could not apply my mind to anything when I was like this. Bending over and moving around was torment.

8. Having just one carbohydrate food to eat made a huge difference to how my digestion behaved and gave me a dramatically more stable energy level.

Oh yes, I weighed myself and I GAINED 2 pounds, which I’m not that delighted about to be honest.

All in all, I learned a huge amount about what my very young son goes through physically and emotionally. This has been so worthwhile as I have learned a great deal that will help me be a better and more understanding mother to him when he suffers.