Monday, November 3, 2008

Toddler Night Waking - Stomach Aches Cramps

Well we are still waiting for Cooper to have his endoscopy and bowel biopsy to check on his fructose and sucrose malabsorption hydrogen breath test results. I have been following a very low fructose and sucrose diet. Along with no dairy, no soy, no egg (due to protein intolerance).

Are there any other food groups left!
The vegetables that I tend to use with low levels of fructose and sucrose less than 1% include:

Mushrooms, and
Green Beans.
There are other vegetables and fruits but a two year old is hardly going to chow down on Chinese cabbage or Asparagus.

I tend to make a Zucchini sauce which is a substitute for tomato sauce. I add salt, pepper, mixed dried herbs (only a little), Nuttlex (dairy free spread), dextrose to give it a bit of sweetness, celery, broccoli and even some rhubarb which gave it a tang. He loves it. I blend half of it with some steamed water. Then pour the other half into the other veges and meat.

2 strawberries per day
Alternating with 2 finger joints sized pieces of rock melon
I'm afraid to go any higher with his dosage of fruits because he seems worse with a lot of fruit.

Beef (mince)

Corn Puffs
Corn & Rice Cakes
Biscuits (home made)
Diet Jelly
Cakes (home made)
Plain Potato Crisps

We are still using wheat (as this needs to be in his diet for the biopsy to test for Coeliac disease.
I make all his biscuits (low sucrose - use dextrose or another artificial sweetener) (low fructose - I give fruit a miss and use cocoa, or imitation vanilla flavouring) (no dairy or soy- because of his protein intolerance).

I'm very careful what I put into his mouth, but still he wakes with stomach aches almost every night. It's very distressing and wearing us down. He is tired during the day and this morning he was tired by 10am because of two episodes of night waking with stomach pain. He fell asleep for three hours, but was awake tonight with tummy ache. When he is having tummy cramps, he lay's down in a darkened room with his eyes closed, twisting in pain from the cramps. I'm always by his side. I've tried various medications to takes the pain away, panadol, natural stomach cramp solutions, but nothing works. We both just wait till the cramps in his tummy subside after about 2-3 hours per session.

All Cooper wants when he has a stomach ache is to be cuddled, he just wants to be with me, his mum. I can understand that, I just wanted my mum around me if I was feeling off colour. Yet, Cooper's problems are not once in a blue moon they are almost every night.

When we lie there in the dark together, he wraps his baby fingers in my hair and runs his fingers through it. I guess it gives him comfort to know at least I'm there with him. I almost think he thinks that stomach aches are normal. He will occasionally wince in pain and say 'Tommy Ake' in his baby voice. Bless him.

All a mum wants to do is protect her child. I am his guardian, I am his advocate, but I'm left with a feeling of helplessness. Nothing I'm doing is working. It's so frustrating. I can fix everything else in my life but not his pain. Every day I try to think what can I feed him that won't give him stomach cramps? Every few minutes I'm thinking what is causing his pain. It begins to consume almost every waking moment. Every morning I wake up, I immediately think of the list of foods that won't cause night waking. What food should I leave out today! What could have caused his stomach ache, was it the sprinkle of mixed herbs, or the rhubarb! I feel like screaming sometimes.

It's not making sense, I am following the diet. This week I've even tried to remove wheat, but without any change. Wheat has Fructans, which may or may not be giving him a problem. I try to approach every day with a positive outlook, and think about what I can prepare meal wise that will be safe. It just isn't working. It seems to have gotten worse.

I think about what it was like to have a normal life. When your baby or child is night waking in pain you can't possibly live a normal life. Life is far from normal. It affects how you think and feel. It affects your energy level, it affects you mentally and physically. It affects Cooper he's obviously tired, and therefore clingy. He was once happy to go to child care, not anymore. I can understand that, who wants to go to the child care when you have had little to no sleep and a crook stomach all night.

Well it's a brand new day tomorrow ...and maybe what I feed will work.


Mason said...

I know this blog was written awhile ago but I wanted to see if you found any solution? I feel like my 15 month old son is having the same issues... thx,


Liz and Cooper said...

Hi Jen,

There is no magic bullet for this. It's just been trial and error with Coopers diet. He is turning 4 in 22 days time and I hope that he can can tolerate dairy in time to come but he is still on rice milk, low sugar diet, but he is able to eat much more fruit so that is wonderful.

We are going to see an immunologist before the end of the year is over but the waiting list is long.
I have since had another baby and the pead told me to go off all dairy while i breast feed to prevent it happening again.

I just wonder what they are putting in food to have so many kids with food reactions.

There is light at the end of the tunnel.

kylee said...

Hi Liz, I 2 know this was written awhile ago. I have just been in tears reading your blog as it's me all over and my son James! We have just been told he has malabsorption of fructose and Sucrose. He is 16 months, old and it's been heart breaking to watch. since finding your blog and PDF on foods etc. I find myself feeling so angry at all the suagr and subsituites they put in foods and how they can get away with it! waiting to see Pead and get a Pead dietician WCH adelaide. thankyou for sharing yours and Coopers journey.

kylee an James x

Becky Ogden said...

My 2-year-old doesn't have an official diagnosis of this yet (she does have Eosinophilic Esophagitis, though), but I could've written what you wrote myself.

Lindsay Green said...

This was written so long ago but I came across your blog and it sounds exactly like my daughter. I only read this specific page and it was meant for me to come across tonight because I feel exactly like you here- worn out exhausted heartbroken everyday watching my one year old in pain at night. Just curious if your son sufferered from reflux with this as well? Thanks again for sharing your story.