Another Day.. Another Test!

As each test is ruled out another is thought of and tried and tested..


So a biopsy, ultrasound, pee tests, blood tests and different trial and error with medication we have now rolled around to a possible condition Milk Protein Allergy. Which is like Lactose Intolerance but whereas Lactose is an intolerance to the sugars found in milk. Milk protein is an allergy to the protein in Milks. With a milk protein allergy you have to exclude many items of food more than what a lactose would need to. Such as all animal milks.


This is the only certified medical test which either rules it out or confirms it and it means that Noah has to be on a exclusive dairy free diet for 12 weeks. This will either show his poo to go to normal or will stay the same. 

So for the next 12 weeks:

Noah will be moved onto Soy Milk for his nighttime bottle and his nap time bottle. His usual snacks of biscuits (he is a massive sucker to biscuits and will become your best friend if you offer one) and down to his main meals which will have to be altered. This includes Mash mixed with milk and butter will be substituted for Soy milk and dairy free butter.

Its not a massive change and looking at the ingredients of the main foods he eats shows that a lot of what we give him is free from dairy all together and only a few minor substitutes. Just to give you a better view of the change, I'll write out what he usually eats vs what he has to change.


Breakfast

Half a slice of toast with butter.

Substitute

Dairy free Butter

Lunch

Half a sandwich with Butter and Peanut Butter. A handful of quavers and fruit.

Substitute

Dairy free butter and change of Crisps

Dinner

Cod Cakes and Mash with Beans.

Substitute

Soy milk and Dairy free butter for the mash.

Snacks

Digestives or Rich tea biscuits, Fruit or if hes been good.. A Freddo!

Substitute

Swap biscuits and change to dairy free chocolate. 

He also likes to drink Juice or squash through the day so no subs there. 


As this shows, It's only a small amount we have to change but if it helps Noah I would happily switch everything just to see him get better!


The next steps:


So if the test rules positive and we start seeing changes, we will permanently move over to this diet and slowly reintroduce foods over a few months or years as what his consultant chooses. He would also be going for regular check ups at our local hospital and will have regular weigh ins to see how this diet is affecting him.

If the test rules negative and we don't see any changes, we will continue the massive list of tests. As like hell am I going to give up on my little guy!
These tests will be a blood test to rule out Celiac. A wheat/ gluten which would exclude all gluten from his diet for 12 weeks and see if anything changes. This would then move on to different food groups and eventually either rule out all food or find a food he cannot deal with. When that is negative we could possibly be moved to a different hospital. 

This hospital (Great Ormand Street Hospital, GOSH) Is the UK's biggest children's hospital in London. Which is 8 hours away from my home. This hospital would have seen millions more cases like Noah's compared to my small tiny country hospital. They also have a Machine which is the only one of 2 in the whole of the UK. This Machine is entered into Noah's bum and goes up to his bowels and intestines and will replicate a poo and then monitor his nerves and responses to needing and going to the toilet. This tests for muscle/tissue/nerve weakness and rule out/confirm if there is a problem down there. 

That possibility could be years in the future and nothing to worry about now. For now it's a diet and lifestyle change and fingers crossed and hope for the best situation.


So what made this idea of a Milk Protein Allergy come around?

Whilst waiting months upon months for his biopsy, I decided to take things into my own hands and do my own research. This brought up a webpage that told me, that it could be mistaken for Hirschsprungs. It listed the symptoms of:

  • Poor Weight Gain
  • Failure to Thrive (reluctant to feed)
  • Eczema
  • Constipation or Diarrhoea
  • Re-flux
  • Colic

All of these symptoms except Diarrhoea, is what Noah has and has had since he was born. It then made me dig deeper into his notes and correspondence with medical professionals. 

Just to all my non UK readers:


In the UK, Parents are given a red book when a child is born, the keep this book until the child is 5, and it contains space for medical professionals to write whats happening, weight/height/head measurements. Jabs (vaccine) updates and information and different things for when a child starts school.

Back to the point..

I read these notes from the red book that his health visitor had left and I looked at his weight charts. What I found was, that every important stage he went up.. his weight and poos declined. So when he was born he didn't poo for 5 days! Then I looked at 4 months old when we started weaning. This weight dropped a little and the notes confirm that his eating went down and his poo became less regular. This then happened again when we introduced solids at 6 months and then again at a year old when we introduced Full fat milk. 

Can you see the connection?

  • Formula was added
  • Baby jars which included a lot of dairy was added
  • Solid food with added small amount of full fat was added
  • and now lastly when we introduced Full fat and it went completely downhill!

Can you see yet?

The more dairy/milk we added into his diet the worse he got. 

I then took this to a consultant who shrugged me off like I was a silly over worrying mother. I had pages and pages of information and research and it was disregarded in 0.2 seconds! How could I ever know what was happening? I wasn't a doctor! 
A doctor I am not.. But a mother I am! I spent time and effort and countless nights spent reading and researching. To be told I was being silly! This then moved onto me demanding another consultant. This one listened to me ramble and let me explain my research and finding and agreed that there was a connection and told me that he was impressed with the connection and amount of time I had spent figuring this out. I am impressed myself.. I should just go and get my doctorate..

This is what led us to now. I will write regular blog posts with updates and if its working or not. But for now I have to wait for Noah to see a dietitian to advise us and help us as we are cutting a massive portion of his milk which is his main source of weight gain at the moment, she will also give him vitamins and calcium he may be losing from this experiment. As the last thing I want is for his weight gain to decline!


Keep your fingers crossed for healthy poos!

Until next time..

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