Lots of updates and a very solid pass!

I'm sorry for the lack of posting lately... Life has been tremendously busy. We pulled George out of his in home care situation and hired a full time nanny to care for him at home. George just wasn't coping with all the bugs he was picking up and it was making life extremely distressing for all of us. Hiring our nanny has been the best thing we've done as George has been SO well and so settled since she started. It's taken so much stress out of our lives too. Definitely the right choice. George is 13.5 months at the time of writing this blog post.

We have very good news too- that George has passed pumpkin- butternut, buttercup and crown pumpkin are all safe for him! He is thoroughly enjoying pumpkin twice or three times a day. We have roasted it and cut it into bite sized pieces so he can feed himself. Our nanny Fiona was clever and made little puff like things with pumpkin and neocate which turned kind of tacky when baked. These provided a new texture for George which is really important, so that he learns to bite and chew properly.

We trialed parsnip but only got to day 4 when we pulled it. George had extreme sleeplessness and was very very unsettled. We decided it wasn't worth it for parsnip, which isn't a terribly useful veggie. I waited until he settled back down and we went straight into the next food trial which was cauliflower. George enjoyed cauliflower and has been eating it steamed and roasted. He likes holding it in his hands and biting bits off. 

George's weight is no longer a worry at all either. He's been having fortnightly checks at Plunket and is a hefty 10.85kgs now. He is doing really well! So well that we are going to try cutting down on the night time bottles and talk to our dietitian Linda about how much neocate he needs in a day now we have calories coming in from pumpkin too. Such a relief not to worry about that!

Next up is a mini trial. We need to see if George will tolerate and accept the next stage of neocate, the 12m+ one. It comes in vanilla and unflavoured so we shall try both and see which one George likes best. 

After that we will trial a fruit. Apples are first on the list so we will give that a go. George has eaten apples in the past but they flared his skin so we stopped them. This was right around the time we started solids though, so hopefully his gut has matured enough to accept them now.

One thing I'll never get used to is the horrible wait after trailing a new food... Those first 4 days are terrifying for me. I hover over my phone anxiously waiting/hoping not to hear from our nanny. We do trial for the first time on a Saturday morning but in my experience reactions (well, acute ones) happen after a couple of exposures. Luckily this hasn't happened for months now!!! 

It's so good to share such good news on this blog. I think back to the two months George spent solely on formula when we pulled all foods from his diet to let his gut rest. It was such a worrying time, but it was the best thing we did. It was the right choice to start again. Onwards and upwards from here! 

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.

Croup??

Croup again tonight? It certainly sounds like it. The doctor we saw at Kenepuru after hours says it isn't though. However we had an extremely wakeful night (every hour I think it was until 2am, then every 2 until 7am). George is certainly very mucousy and has a persistent cough. He's not happy at all, very whingy, clingy, refusing to sleep. Lots and lots of crying. He has two extremely tired parents today who are escaping to the grandparents today for respite care. Thank God. Not sure how much longer things can go on like this... It's enough to wear anyone down.

No more rice

No more rice in George's diet as of last night (2nd July 2015) and tonight George went poos without screaming! Could it be as simple as eliminating rice? Has it been rice causing issues all this time and we didn't know? Feeling quite terrible about that...

He did refuse to sleep and screamed for the majority of the afternoon however. I wonder how long it will take for the rice to leave his system?

Update- more poos this morning and we didn't even know it had happened til I caught a whiff! This has pretty much never happened! George seems much happier too- he's crawling around (he didn't like crawling before) pulling himself up to stand and he slept pretty well with a 1am and 5am waking. Fingers crossed things continue to go well.

Rice- could it have been causing chronic reactions all this time?

Now that George is diagnosed we can start to look at what's triggering him the most. I'm thinking rice which has been the biggest staple of his diet since solids started at 5 months. Although his symptoms started at 5 months too. So as of last night rice is out of George's diet. Just pears, lamb and pepti jnr. 

George's symptoms- which is call a chronic FPIES reaction:

Miserable a lot of the time he's awake

Many episodes of screaming during the day for seemingly no reason- can go on for hours

Waking a lot overnight (every 2-3 hours)  and waking screaming/crying every single time (nightmares? FPIES?)

Severe constipation 

Screaming when going poos

Eczema flaring no matter how much steroid cream is used

Clinginess- much more than normal

Heart murmur detected 

Very gunky right eye 

George's eczema journey

Some photos of George's eczema before we got it under control and got a decent staph management routine in place. George had 5 long courses of antibiotics within 3 months to try and kill the staph infection that continually returned. We finally found relief for him through a combination of manuka paint, cetromacrogel moisturiser and hydrocortisone ointment. 

After photos

It's FPIES

Today, Thursday 2nd July 2015, George was diagnosed with FPIES by his paediatric allergist. What a relief to have a diagnosis. 

Coconut oil trial

Started 30th June 2015.

Day one: 1/2 tsp in rice and pears for lunch

Refused sleep for carer Kirsty in the morning. She ended up doing a big drive around for George to sleep. Strange green poos reported by Kirsty. Screamed a lot in the afternoon from 4pm onwards. Slept poorly, waking at 7, 9, 10, 12:30, 1 and then 6:15. Eczema badly flared around temples.

Day two: 3/4 tsp in rice and pears for breakfast/lunch

Refused any more after only a few bites (but not unusual) at breakfast. Ate very little for lunch. Very unsettled late afternoon/evening. Refused to sleep. Much crying. Eczema badly flared around temples. Woke at 10, 12, 6.

Day three: Lamb slices fried in coconut oil

Poos this morning - large amount, quite pale and fluffy. Much screaming during poos, much crying. Refused sleep (cried) at Kirsty's so she popped him in the car for a drive and he went to sleep for an hour. Very very very upset all afternoon at home with me. Wouldn't settle even with bunny. Went to sleep in the car within a minute of leaving the driveway and slept for 20 minutes, Woke very upset. Drank more bottles than usual today. Ate a very small amount of pears and lamb for dinner.

Poos with undigested food in it

This morning after taking 1ml of milk of magnesia George had a big poos. It was soft and sticky and had visible large and small bits of undigested papaya in it. George screamed and then cried whilst he was pooing and then he was much happier and willing to have his morning nap afterwards. 

Reaction to...?

Eyes swollen and red after using new eye drops and taking 1ml milk of magnesia this morning. Had poos within 1 hour of taking milk of magnesia. Gave 2 ml cetirizine antihistamine- George was coughing and coughing in a choking sort of way.

45 minutes later after antihistamine...

Update: George had another reaction like this on Monday 29th June. It was the milk of magnesia. Antihistamine was given again. Have started lactulose 5ml twice a day.

Papaya/pawpaw trial

Trialing papaya/pawpaw, starting Monday 22nd June. George seems to enjoy the flavour and texture. I couldn't find and fresh so I bought tinned papaya.

Is it normal to see whole I digested pieces of papaya in his poos? I will ask George's dietitian next time I see her. 

Unsure if it's a pass or not. May need to retrial later.

Croup

George was seen at Kenepuru hospital for coughing on Sunday 21st June. Oral Steroids given by doctor at Kenepuru for croup. No more coughing for the next two nights but the cough has returned Wednesday 24/6 and sounds wet.

Avocado Trial

Avocado Trial- beginning Saturday 20th June 2015

Day 1: Ate 1 teaspoon of mashed avo, within ten minutes red rash around mouth and itching.

Day 2: immediate red rash and itching cheeks and face. Refused to eat any more than 1 teaspoon of mashed avo.

Reaction to potato

24th May 2015- George had a reaction to potato (boiled, peeled, Agria) which I had reintroduced after a few weeks of not eating it. His face swelled up especially his left eye and that side of his face.

Zucchini causing explosive poos?

Today we travelled to Otaki to see Blair’s Mum for her birthday. I’d started giving George some zucchini earlier this week. On the way we smelt the most hideous smell from the back seat. George had had explosive diarrhoea that covered him right up to his armpits. We’d never seen anything like it. It smelt tremendously vinegary. Looking at photos from yesterday and the day before I can see George’s skin is beginning to flare again, especially on his temples and forehead. His cheeks are also red and beginning to look quite scaley.

Vomiting after eating baby muesli

5 April 2015: projectile vomiting after eating baby muesli (oats/wheat based)

Ended up in hospital after vomiting as banana incident a fortnight previously. Vomited to fluro yellow bile.

Photo taken 5 minutes before vomiting started: 

Photo taken at Wellington hospital emergency department once vomiting had stopped.

Projectile vomiting after eating banana

31st March 2015: projectile vomiting after eating banana

Mashed banana, 4 hours later George began projectile vomiting and didn't stop for over an hour. Vomited until bile (fluro yellow in colour). Very pale, floppy in between vomits. Went to see doctor, kept for observation until vomiting has stopped.

Reaction to Orange kumara/sweet potato

2nd March 2015: puréed Orange kumara. Woke screaming 4 hours later and face looked like it had been burnt. Red swollen eyes. Very itchy. Applied steroid cream.