Our first food trial: pumpkin

Monday 3rd August 2015

Today was day one for the pumpkin trial. I roasted some butternut pumpkin on Saturday (without any oil or seasoning, just pure slices of butternut pumpkin) and froze them. This morning for breakfast I gave George a small amount of defrosted roasted pumpkin which he eagerly gobbled up. It was a soft texture but I didn't mash it or anything. I'll double the quantity of pumpkin for breakfast tomorrow. George went to his carer and so far, so good. No reports of any reactions this far.

Neocate trial

George has been solely on formula for a couple of weeks now as we wanted to give his tummy and gut time to settle before our first food trial (which will be pumpkin). 

Unexpectedly George accepted a sippy cup of neocate on Sunday after weeks of refusing it. So we decided it was time to trial neocate to see if we could get any improvement with George's constant wet cough and runny nose. 

Sunday evening, day one: drank 150mls neocate. Woke very frequently overnight but top teeth have finally come through.

Monday, day two: eczema flared. Drank approx half his usual volume of pepti jnr in neocate. Mostly happy. No poos. Windy/gassier than usual. Small bottle of pepti Jnr consumed at midday.

Tuesday, day three: eczema extremely flared, especially behind ear and neck (found blood on his cot sheet this morning) gave cetrizine this afternoon for itching. Eyes red. Drank about half usual volume of pepti jnr in neocate. No pepti jnr consumed today. Poos twice, once at 10am (small amount) and again at 3pm (large amount). Generally happy today. Had a very big sleep from 11am-2:30pm.

Update: It has now been a week since George has been solely on neocate and things seem to be improving all the time. His cough and congestion is still there at times, however his runny nose appears to have dried up completely. He's only waking once a night and is happy, calm and settled during the day. Some mornings George has even woken up very happy and chirpy in his cot, content to play until I get him up.

We decided to start the pumpkin trial after his birthday party on Sunday. So Monday is day one of the pumpkin trial and I'll cover that in a new post. 

A stressful week

It's been a stressful week. George was weighed at Plunket on Monday and had lost a significant amount of weight. He had gone from 10kg to 9.3kg. I was really concerned and contacted his dietitian to let her know. She made us an appointment for Wednesday (today) to see her at Wellington hospital.  

In the meantime I stresssssssed out. We had finally found baseline for George but that meant he was only on formula. He wasn't getting enough calories. I felt hideously responsible and so guilty that my poor baby had been losing weight before my very eyes and I hadn't realised.  It was a terrible couple of days. Luckily Blair realised I was close to breaking point and knew he needed to be at the appointments on Wednesday too. I'm so glad he was there to support me. This journey can be so overwhelming sometimes. 

The dietitian appointment went so well today. All my worries were completely unfounded (they didn't call me a bad mum or tell me I was doing everything wrong) which was a huge relief. I thought I was going to burst into tears but I managed to hold it back. 

The dietitian calculated how much formula George needs per day and they have concentrated it to make it more calorific so he continues to gain weight. They validated my concerns that George was having reactions seemingly to all foods and said he can stay on just formula for another week til his gut has calmed a bit. I'm so relieved to have a proper plan, such good support and that Blair was there to hear everything too. 

We then went to get an upper gi swallow done for George which involved him having to drink barium and then being x-rayed in different positions to see how his oesophagus and tummy were looking. George was such a star, the nurse said he was so calm during the procedure and was really impressed with him. I felt so proud of my little guy.

The doctor said it was all looking ok from the initial images but is sending it to George's paed who will follow up with us. Obviously they'll need to look at the images in detail to check that all is well in his gut. But from what he could see there weren't any twists. And that is excellent news! 

I'm so glad it's all over. I'm just looking forward to getting George's gut healed so that we can start trialing food. 

Baseline

This is what baseline looks like! We reached it and remained there for three blissful days. Until George began reacting to lamb after 3 exposures (eczema flared badly, consipated, sleeping very poorly, clingy and grizzly). But for those three days we had an entirely different baby. One who was happy, sleeping well, had normal skin and normal poos. It was just fantastic. So now we know that baseline can be achieved and what it looks like, we can get George back to it after a reaction. 

A good night's sleep!

George slept so well last night. Down at 7 (a bit later than usual) and he woke twice for a bottle overnight. Up for the day at 7:30! Amazingly he woke happy! This is almost unheard of. We usually hear him crying and desperate to be out of his cot but this morning he was well rested and cheerful. 

I gave him a wee bit of lamb for lunch yesterday. He enjoyed it but wasn't able to swallow it, he kept choking and gagging. I think he got enough out of it by chewing anyway. Will give him some more today. 

Linda the dietitian emailed me a special FPIES process to follow when introducing new foods. The foods are divided into stage one, stage two, stage three foods. We are to start with stage one - obviously introducing one food at a time. If George reacts we wait for his body to recover before introducing a new food. Stage one foods include things like pumpkin, broccoli, apple, quinoa, beef and pork. Because George already tolerates lamb we keep that in. 

I think I'll start with pumpkin as I really  want George to have a vegetable. I'll start with a small amount (1/2 teaspoon) on the first day and then double the quantity each day. If all goes well I'll trial for 7 days then have a 2 day break then try the pumpkin again. Apparently the two day break can show whether the food is actually tolerated or not. I found this introduction process on a FPIES website and it seems pretty sensible so I think I'll try it this way to start with.

Foul, mucousy, sloppy nappies

Today (Tuesday 7th July) George had 2 dark green sloppy, mucousy nappies with visible lumps of pear. They smelt absolutely foul. This afternoon he had another but this one was a smaller quantity and it was a light brown colour. Still very mucousy and lumpy. Same horrendous smell. 

Last night he had pear for the first time in about 36/48 hours. He had about 3 quarters of a tinned pear. This morning he had a similar amount. 

Another foul smelling, green mucousy nappy this morning (Thursday 9th July) but in general I think George seems more content.

Cough cough cough....

So we've taken George off rice. He's had a small amount of pears last night with his reflux meds. Other than that he hasn't had anything other than his prescribed formula, pepti jnr. Which we've increased the amount of as we have decreased the amount of solids he's eating. But George is becoming increasingly miserable, mucousy, screamy... We're not reaching a baseline as I'd hoped. The doctor at Kenepuru said George does not have croup. He said there's a whole lot of mucous that is basically dripping down the back of his throat causing him to cough. He certainly does have a very runny nose - and it's mainly clear mucous that's running like a river. It just leads me to question if the obvious is right in front of us. Is it the pepti jnr? The mucous/runny nose/cough started right when George started on pepti jnr. We don't know if it is a coincidence as he also started in home care with another little boy at that time. It could just be a really prolonged cold. I'll ring George's allergist next week and ask him what he thinks. I don't know if it would be an issue to trial him on something like neocate or elecare and see if everything improves and if it doesn't then I guess we'll know it isn't the formula.

It's just so hard to have such a miserable wee boy. Blair and I are both utterly exhausted. The crying must be exhausting George too. It crossed my mind that I should start keeping a record of how often/how long George cries for in a 24 hour period. It feel like hours and hours. I wonder how long it really is?

Update 7/7/15: George does have croup, He's been given redipred which I gave him last night before bed. He had an extremely high temp (39.5) which came down with pamol but took 2 hours to come down to 37.