Reflux meds # 2 = FAIL!!!

Some people already know this but i thought i better update my blog anyway. On Thursday, just after i wrote my last post my doctor called and said she would like us to try another reflux med with Iyla. I couldn't get hold of the dietician still so we were kind of on our own. My doctor read out the ingredients over the phone and it didn't sound like there was any food product names in there that i knew so i thought we might as well try it. She wanted us to try Zantac. I picked it up that day and decided to try it on Friday. I had to give her 1ml twice a day. I gave her the first dose in the morning. She spat most of it out. For the whole morning she was really happy. Then 4 hours after she had the meds she started spewing. She did small spews constantly for 2 hours and screamed A LOT!! At the end of the two hours she did a massive spew but was thankfully happier after that. On Saturday morning she did a disgusting poo that exploded out of her nappy and soaked through her clothes. It was also full of mucus. Since that fail i have learned that Zantac is made using corn syrup. Wish i had figured that out before giving it to her...sigh.

Reflux meds = FAIL

I've been meaning to update this for a few days but i've been crazy busy and haven't had time. As my title tells you, the reflux meds were a big fat fail. So frustrating!! The first 2 days were good, she was lots happier, was sleeping better but was spewing HEAPS more. This already made me a little nervous but it seemed to be helping for the acidic pain of her spew coming back up. The 3rd day, she was terribly grumpy and sleep became a huge issue. Every sleep she needed to be rocked (well really shaken) to sleep. I was getting more suss by then but decided to give it one more try. Bad decision! On Monday she screamed almost all day long. Like a hysterical, in agony, someone please help me kind of scream. It was awful!! She was constantly pulling her legs up, wriggling and squirming in pain and there was nothing really that helped. I tried a bath but she wasn't even happy in there. Every now and again a tummy massage worked for a few minutes but then the pain just came back again. Getting her to sleep was a huge mission, but thankfully once asleep she was so exhausted she managed to stay asleep for 2 hours. It was a well needed break. Her spewing also became insane. It was one projectile after another, all over me, all over her, all over the house. She only did one poo a day during the trail but those were light green, so runny they just instantly got soaked into her nappy and there were globs of mucus through it. We stopped giving the meds and within 12 hours she was back to her normal little self. Poor little miss.

Now i just need to wait until i can get in contact with the dietician. She isn't replying to my emails so i think she may already be on holidays. Looks like things will be at a stand still up until the middle of next month. I'm in no hurry to start solids so now i just hope we can keep her reaction free for a few weeks. My nazi floor cleaning has started as Iyla is getting very ready to start crawling. She manages to get her self all over the place. I'm getting a playpen from a friend (which i keep forgetting to pick up) so hopefully having her more contained will make things easier.

I also want to take the time to thank everyone for helping me through this difficult time. I haven't been coping very well but to see how everyone is so willing to make me meals and give me words of encouragement and support mean everything.
A special thanks goes out to my amazing sister! You are the best! And my mum who is always a willing ear to listen to my complaining and help out in whatever way she can. Love you both a ton!

Just another update

It's been a bit of a hard past week, each day has slowly been getting worse. Iyla isn't reacting to her formula (unless it's building up to that...hoping and praying it's not!!) but she has pretty bad reflux from it. She is still very spewy and now hates laying down as it seems to cause her a lot of pain. You can just imagine how this is affecting her sleep. During the day she is taking hours to get to sleep once she is tired. She constantly squirms, screams and has to burp and spew. It's very tiring and extremely frustrating. Even when we hold her she has trouble falling to sleep, although it doesn't take as long. It's just a restart of the battle once she is put back in bed. I have raised her mattress to a 40 degree angle but it's not helping much. She is also only cat napping. Sleeping only 20-40min at a time. Randomly she will have good days and then sleep 1-2hrs at a time but that has only happened three times in the past week. At night it is still a huge battle to get her to sleep but once asleep she isn't waking too often. Usually 1-3 times a night screaming because she needs to burp or spew. She is probably just so exhausted from not much sleep during the day that she just passes out. Thankfully when she is awake during the day she is mostly happy, although yesterday was a horrible day of crying way more then she was happy. Her poo is still normal so that is what is telling me it's not a reaction.

I got a call from the dietician this afternoon and we are going to get a reflux medication prescribed for her and see if that helps. I already have a doctors appointment on Thursday and will hopefully get her onto Losec. I know it can take up to 2 weeks to see any improvement, i'm just hoping it's sooner. It's so hard to see my little one in pain so much.

Once the reflux is sorted out, we are going to start Iyla on a thickened form of neocate formula called neocate spoon. She 'shouldn't' react to this but it has more corn in it i think as the thickener and there are still a few kids that do react to it. If she tolerates it, this will be her first introduction to a solid 'food'. It will also hopefully help for the reflux.

Once we know she is tolerating the neocate spoon, then we will start with solids. I'm guessing this is all going to take some time so she probably wont even begin solids until the end of January, early February. I'm in no hurry though. It's all too scary! She is starting to get very interested in food though, she watches us so closely when we are eating and is always trying to reach out and grab it. She will just have to be patient.

Poem about FPIES

Yesterday was a horrible day for poor little miss Iyla. I feel bad because i decided to start giving her the multivitamins on Sunday afternoon, obviously not the right decision. She had been doing so well on Saturday and Sunday morning and was finally over her reaction from last week. We did the muscle testing with the multivitamins and my arm was strong, which means she should have been fine with it. That was really the thing that made me give it to her. I want her vitamin D levels to be up before we start solids as we are hoping that will help her tolerate more foods. I gave her the vitamin drops at about lunch time and by that night things were already going down hill. She was really struggling to go to sleep and seemed to be in a lot of pain. She wasn't spewing any more then normal so i wasn't sure if it was the vitamins or not. That night was awful. She woke up so many times screaming and in pain. By Monday morning she seemed to be a bit better so i thought maybe it was just a fluke bad night. She was still a bit miserable and having trouble sleeping though. I gave her more of the vitamins at lunch time again. Because there was no real sign of reaction i wanted to try it again and see what happened. She was awake for an hour or so afterward but then when i put her to bed she only slept 20min. She woke up screaming blue murder and when i took her out of bed she did a massive projectile vomit. It was bright neon yellow as that is the colour of the multivitamin. 

For the rest of the afternoon it was a mix of screaming, crying, whinging, spewing, curling up in pain and not sleeping. I finally got her down for the night at 6.30pm. She woke a few times crying but patting her butt got her back to sleep ok. But then at 8pm she woke up screaming again. The poor little thing was in so much pain. As i was rocking her and trying to get her back to sleep i was inspired to write a poem about what it's like watching her have a reaction like that. It took till 10.30 to finally get her back to sleep properly, but then thankfully she slept good until 4.30 this morning. Hopefully today is better. We redid the muscle testing last night and my arm was VERY weak! Sometimes it does that when she has a build up reaction. I remember it with Abbey too. Definitely no more multivitamins though!!!

LIFE WITH FPIES…

The screaming has subsided now, I hold you in my arms.
I whisper softly in your ear, some verses from the Psalms.
You try to sleep, your eyes closed tight,
We all wish you to go night night.
But stomach pains will not recede,
A sleepless night just might succeed.

I watch your tiny body struggle, I kiss your clammy skin.
You wriggle, squirm and fight the pain, you bring your knees up to your chin.
Your breath is raspy, you cough and gag,
A massive vomit wiped up with a rag.
This misery I would take from you
It’s such a cruel thing for you to go through.

I stare at you and my heart just aches, I smooth your fuzzy hair.
Another cramp which brings a groan, it’s all too much to bear.
What can I do, but wait it out?
Just know I love you without doubt.
I’ll hold you close, for another hour
And pray that God will give me the power.

Rough week

This week has been pretty crazy. On Tuesday Iyla had a really bad reaction and it's killing me that i don't know what it was from. When she has a reaction (and i remember the same with Abbey) I kind of go in psycho mode, trying to figure out what caused it. She started vomiting at about 10am so it must have been between 7-7.30am that she was exposed to the food. The only thing that remotely makes sense is one of the kids touched her dummy or her after they ate cheerios for breakfast. But i didn't see them near her that morning so i'm still a bit baffled. But anything can happen and kids are so quick. Anyway she vomited every 20-30min till late that afternoon. In the end she was just vomiting bile. She barely slept and was completely miserable.
 
Since Tuesday she has barely been drinking, her sleeping at night has been terrible, she is still having lots of stomach pains and still doing lots of random big vomits and constant spit up. Yesterday i was seriously considering taking her to the hospital because she was starting to get pretty dehydrated. Her nappies were almost constantly dry. In a 24hr period i think she only did 3-4 wee's. I decided to wait until late afternoon yesterday and finally when she woke up from her nap she got hungry. She drank 2 bottles within 4 hours and then finally her nappies were getting full again. This morning she woke up and she had wet through her nappy. I've never been so happy about wet clothes and bed sheets. Today she has been happy and hasn't spewed half as much.

We also got some results back from her blood tests. We found out that she is low on iron and vitamin D. It seems to be quite common in FPIES kids to be low on vitamin D and i've heard lots of success stories about more foods being tolerated once the vitamin D is sorted out. Iyla needs to go on a multi vitamin (which i'm hoping she doesn't react to) and she will have another blood draw in 3 months to see what her levels are then. NOT looking forward to that!! 

Horrible horrible torture

Poor little miss Iyla had to have blood drawn today to test for IgE mediated allergies (these are the normal allergies like peanuts, lactose intolerance ect and should come back negative) and also to test her vitamin levels just in case something is lacking there. It was so horrible! Two nurses had to do it, one holding her down and the other drawing the blood. I got to be the good guy trying to comfort her. I wasn't very good at it though because i was trying so hard not to become a blubbering mess myself. Poor Iyla went hysterical. It was so sad.

She is doing really good on her new formula though. As you know we have slowly been introducing it adding a little more of it to each bottle every day. As the days have past over the last week we have been seeing a little bit of improvement every day. She has been happier, she has spewed less and her sleeping has been getting a lots better too. Going from waking 5+ times down to only once on Saturday night. Then yesterday we started giving her full neocate. She slept through the night last night and has been REALLY happy today and has barely spewed. She has only soaked 2 burp cloths instead of the usual 6-10 a day. After the way Abbey reacted to neocate we were sure we would be in for the same drama. But so far so good! It's very promising...but we can't get our hopes up too quickly yet. It took her 2 months to start reacting to the goats milk formula and 2 weeks to start reacting to the Allerpro one. It could still happen. But for now we will just thoroughly enjoy our happy little girl and hope and pray it continues to work for her :).

Offically FPIES

I know everyone is really interested to hear how we went at PMH and i'm sorry it's taken so long to write this post. We didn't get back home till late last night and i only just have a spare minute now while the girls are both sleeping to sit down and write about it.

Our appointment went well. Most things seemed to be in our favour too which was awesome! We found parking really close which we weren't expecting. It made us half an hour early for our appointment! We went for a walk first but then got into our appointment after only 10 minutes of waiting! We were a bit in shock expecting everything to take ages! The only thing that wasn't in our favour was waiting for Iyla's formula at the PMH pharmacy. That took over an hour so we didn't end up getting out of there till after 4pm!!

The allergist we saw was really nice and i pretty much just told her Iyla's life story. She confirmed FPIES. Especially after her reaction to the oats a few weeks ago. So for now her diagnosis is acute FPIES to oats (which means vomiting reaction within 2-4hrs after ingestion) and chronic reaction to dairy (which means delayed build up reaction over a few weeks with random vomiting/screaming/diarrhoea episodes.) We know there are more foods that cause problems but because she hasn't had anything else orally they are 'unofficial'. We are just going to keep Iyla away from the ones she seemed to react to worst through my breast milk until she is at least 18 months.

She also has to go on neocate formula as we had already guessed. I've started that slowly today. It tastes disgusting so it will take a bit to get her used to the taste. For this week i'll mix 30ml of neocate to 90ml of her allerpro formula and then slowly add more neocate and less allerpro until it's all neocate. I am hoping and praying she will tolerate the neocate ok. It's very common to have reaction type symptoms for the first week as their bodies get used to it and also flush out the other things she has been reacting to. So it will probably be a rough week.

Once she is at baseline with the neocate she has to stay on that only for 6 weeks. Then with the help of the same dietician who helped us with Abbey we will slowly start introducing foods. We are going to start off with the foods Abbey tolerated the best. So pumpkin will be our first. I'm so nervous about this stage, but really hoping we can at least find a few foods she is able to tolerate. I'm also hoping we don't have too many accidental exposures to foods we know she is allergic to. If we can keep her away from them it will make life so much easier. But with how sensitive Iyla is, a slip up will be extremely easy.

Thanks to everyone for their thoughts, prayers and messages. Again i'm blown away by your support!!