13 month old with chronic reflux

[mama]

I have a very difficult bub who has been diagnosed with chronic reflux and also sleep apnea.

I am almost at the end of my tether - he drinks lactose free milk and the only thing he eats is vegemite on toast. While we were trying a lot of solids when he was a little younger he used to react to everything. eg. he would start crying while he was being fed and then scream for hours and hours and hours before bringing it up and still screaming. As a consequence of that he now refuses any new taste and will not take anything from a spoon.

He has had a barium swallow, ph probe, ultrasound, and endoscopy (for EE). He is on the highest level of zoton and we've tried motilium (anti-nausea), and thickener.

I don't know what else to do to try to get him to eat or whether there is something else at play.

I'm worried that he has a developmental delay. He is 13 months and doesn't crawl but will walk if i hang onto his hands. i've been told he just is a bit slow at moving because he has had so many problems with reflux.

He is a stressed baby and cries an awful lot.

[ticklish]

Oh mama - I am so sorry that things are so difficult for you.

I have been living with a very stressed baby too but my DS#2 is only 8 months old and is settling down now. I have been at the absolute end of my tether too - so I do know what it is like - DS#2 had severe sleep issues and wouldn't sleep day or night.

Obviously your son is recieving medical treatment and care - this must be very stressful for you with all the tests and medication.

I was just wondering has any mention of allergies/intolerances been made. I was just wondering if something like Sue Dengate's site or books might help you piece some of this puzzle together. Google Fed Up and should come across her site. I just had a look in one of her books that I have and she has some information in there on reflux and sleep apnoea. Many intolerances to food are not medically recognised as being linked to medical conditions but I know personally that DS#2's screaming and lack of sleep does appear to be related to certain food intolerances. Vegemite is high in amines - I think - please someone correct me if I am wrong and these are one type of food chemical that can cause a problem. My DS has been helped by a low salicylate diet - he is a bit grumpy today because I think I ate something a little too high in salicylates yesterday - I still learning and don't always get it right!

Hopefully someone will come along with some more specific advice and experience with sleep apnoea and reflux.

I wish you all the best and hope you have some relief soon,
TICKLISH

[mama]

Argh. I just typed up a big reply and managed to lose it..

thanks ticklish.. my bub has sleep issues too.. can sleep only 15 mins a day and takes 3 hours to put down at night and then wakes up half hourly crying because I'm not there..

I talked to his pediatrician about him having food allergies and intollerances and he said that nobody would test him until he was old enough.

I'm positive he reacts to vegemite as the other day when he was eating his toast he managed to get some vegemite on his shoulder and when I wiped him over with a flannel after he'd finished, i noticed a red rash right in the spot where the vegemite had been.. but its the only thing i can get him to eat.. i have no idea what to do next - he just refuses everything else no matter how hungry he is.

he was premmie also so I think sometimes that is also part of the reason why he is such a stressed child.

Either way, I'm not sure what else to do.. I hate seeing him like this and feeling like I'm unable to help and nobody else can help either...

[ticklish]

Mama, I can hear how much this is getting you down

The sleep issues sound so familiar. We used to have hours upon hours of trying to settle DS#2. ATM he is sleeping reasonably well.

It definitely sounds like you have a very sensitive little man there.

Intolerances are impossible to test for - the way to find out what is upsetting your little man is by way of elimination and exclusion diets. You will need to find a dietitian/allergist who can help with this. I am yet to find one - I am discovering what upsets my man through on my own ATM but am seeing our paed again in a couple of weeks.

Allergies can be tested - through skin *****s testing - not always accurate though and it is not true that he can't be tested now - however I understand that there is a higher incidence of false negatives the younger they are. My DS#2 has had allergy testing - it came back negative but we were told that it would be more accurate when he was 12 months plus.

Where are you? You might like to post a thread seeking recommendations from mums who have sensitive kids and know where to find specialists and help - this can be the biggest battle and it is easy to feel defeated with faced with a largerly unknowledgeable medical profession when it comes to these things. There are others who have been through this and you are not alone. The specialists can be hard to find.

If he gets a rash just from having Vegemite on his skin - then yes, definitely go and see if you can get hold of one of Sue Dengate books. I think she also has link to a forum on her website where you may even find mums who have been through the same thing. Also Friendly Food which is a recipe book from the Royal Alfred Hospital might help you too.

Will he eat pureed fruit? Pureed pear - without any skin - is one of the least allergenic foods. What about vegetables? Potato( white and peeled) is also low in natural chemicals. Pumpkin is moderate but my boy tolerates it. Meat? Try some minced lamb. For cereals - generally rice is considered to be low allergenic. But these are things that you really need some professional advice and assistance with.

There is help out there! You are not alone.

TICKLISH