No more soy

After another talk with my dietitian about all Abbey's tantrums and screaming completely ending after 18hrs off the soy formula; we have decided to call it a fail and move on. She talked to my immunologist and they have also decided not to even try the Pepti Jr formula with Abbey and go straight to a formula called Neocate or Elecare which is the least allergenic type of formula. So I'll be getting a script for it and will hopefully get it by the end of next week or early the week after.

It has been so nice to have Abbey happy again! We have had a great day! She has even decided today that she is finally interested in learning to walk and took her first 2 steps! She has been trying all afternoon. It is just a matter of her daring to do it, as we know she has the balance. She can stand alone waving her arms around like crazy and not fall over so she should be able to balance herself while walking I would think. 

She also learned to say her own name this week and its so cute hearing her. She says is very drawn out like 'Aaabbaayy'. She amazes me with how many words she can already say. I was trying to count them all and got up to 20. But there is probably more that i have forgotten. I think she is going to be a chatter box just like her brother! I guess that it's quite understandable though, seeing as Reuben and me are also big talkers. :)

Soy formula trial UPDATE

Ok, so since starting Abbey on the soy formula she has made everything very confusing. After her first 2 bottles she did one vomit, had one horrible diarrhoea nappy and had a few screaming fits but other than that was pretty happy. We gave her a break over night and we were pretty scared to start again the next morning thinking things would get worse. But oddly enough she was pretty much fine, except for the occasional random tantrum and a few small spit ups. Over night she slept really good except she woke up for 4 bottles! This is a warning sign for me, as it suggests comfort feeding. When Abbey has a slightly sore stomach she seems to think she is hungry and will eat just to make her tummy not hurt for a little while. Of course not realising she is only making it worse. Normally now she only wakes for 1 or 2 bottles during the night.

The next day the tantrums got worse. Abbey is normally a very happy content baby and when she isn't having a reaction i rarely hear her. She will play quietly by herself  or with Connor and not even be overly fussed if Connor steals a toy off her.

Then we get to last night and i can be pretty certain now that things aren't going well. She had two massive non-stop screaming sessions. The first lasted for 1.5hrs and the second 45min. These times don't sound overly long, but trust me, in the middle of the night it seems to take forever! I also know the screaming was worse then most of the screaming she does at night because Abbey even managed to wake Reuben up! In all these months that has only happened a few times! I finally managed to get her to sleep the first time by massaging her tummy with a heat pack and the second time that didn't work so i was left to walk around and around the house while holding her. She is getting WAY too heavy to do that with now though and my back is paying the price!

Today she has been a very very miserable girl and has wanted me to hold her constantly. I got a call from the dietitian and we have decided to give her a break over the weekend and give it another go next week. If it still doesn't work we will have to try the Pepti-Jr formula.

We have a plan!!!!

Well after 3.5 long weeks of waiting i finally heard from my dietitian and we have come up with a plan for Abbey. A big problem Abbey has had since she started drinking goats milk formula is that she has been seriously constipated. So bad that if she wasn't reacting to anything and having diarrhoea, she would have 3-6 days of nothing and then be in so much agony pooing it is like helping her through labour.

Apparently this can be another form of reaction in kids with FPIES and my dietitian wants me to get Abbey off the goats milk formula. We are going to try soy formula first and just slowly add little bits of it to her milk until she is having a full bottle.

We are really hoping she doesn't react to this formula, but if she does there is a type of formula called Pepti-Juniour for kids with protein allergies and we will have to get her onto that. I did try that with her back when she was 7 months old and she hated it! I tasted it myself and it tasted like poison. So hopefully she will be ok with the soy formula and not hate that too much.

After we have gotten her onto another formula and if her poo is back to normal we will start trailing her with solids.

I am so happy to finally have a plan. But i am also petrified. Soy can be a huge trigger with some FPIES kids and because Abbey has never had it we have no idea how she will react. I am going to give her some later this afternoon when she has her next bottle and i am really hoping it doesn't end up in disaster. Eeeekkkk

It's so hard to know

Right now we have a sick little munchkin. She started being really unsettled on Wednesday and her nose started dripping. By night time though she was having huge screaming fits and just wasn't going to sleep. Finally at 9pm she seemed to have settled properly and i decided to go to bed too.

I'm glad i did because from midnight onward i defiantly wasn't getting much. Abbey woke up and screamed blue murder for an hour. She was in obvious pain, wriggling like crazy and throwing herself around. She just didn't know what to do with herself. It really looked like she was reacting to something but with gastro going around i started worrying that she was getting that. I also hadn't given her any food and i hadn't found her eating anything off the floor. The rest of the night she would sleep for 5 minutes and then scream for about half an hour and this just went on and on.

By Thursday night the diarrhoea had started and she still was very miserable and having random screaming fits. Since finding out about Abbey's allergies i have become an expert poo inspector. It usually has the answer i'm looking for. Reaction or just teething? Has she eaten something i didn't notice or is her poo normal? Well this time i found my answer with 2 tiny pieces of grated carrot staring me in the face.

It's times like this i have to try stop myself from feeling guilty. We had salad with grated carrot for dinner on Wednesday night and obviously i had dropped some pieces on the floor without noticing. I wish that i had super powers to spot every bit of food that has landed on the floor so that i can clean it up before Abbey gets it. But believe me when i say, she is the one with super powers for finding dropped food! She spots it instantly and will hone in on it in a heartbeat. I can never get over how quick she is, and then a huge battle follows to get it out of her mouth! Abbey having teeth now doesn't help. She can chomp down pretty hard with those pointy things!

Well anyway back to the story. I had my answer with the carrot but i was still wondering if gastro still was the main cause and in a way i was waiting for the vomiting. But it never came. Although not going to sleep till after 10pm on Thursday night and still having random grumpy/crying/screaming times she pretty much slept fine for the rest of the night.

On Friday morning i decided it was just a reaction to the carrot and i was thankful that she didn't get gastro. She still wasn't herself on Friday but having a bad cold probably didn't help with that. During the day though she got into my nappy bag that was in the laundry cupboard. She is getting taller now and things she couldn't reach before she can now. I wasn't that fussed though as she was having fun and i didn't think there was anything in there that could cause any problems. Well i was wrong. i had forgotten to take out Connor's drink bottle and unfortunately it still had some juice left in it. (probably starting to ferment YUCK) I hadn't seen her drink anything and was hoping so bad she hasn't but we found out a few hours later that obviously she had. So we had another night of screaming and diarrhoea.

Its always such a guessing game as to what could be wrong with Abbey when she cries. But i am thankful that when she isn't reacting to something she is the most perfect baby out so it does make my guessing just that little bit easier.

                                                 Here is my poor sick little girl

Lets start at the beginning...

To start this story I really need to go back to the beginning and give you the history of Abbey's life.

She started out as a very chilled out baby for the first few days. But she did have jaundice so we expected her to get a bit livelier. By the end of the week she was screaming lots at night and waking every half hour to an hour. She was also doing lots of spitting up. At first we didn’t think much of it she was only a tiny baby and they often suffered from colic. We expected it to get better…it didn’t.

When she was 2 months old I saw a doctor thinking she might have reflux. They suggested I try putting some rice cereal in her milk and see if that helped. That afternoon I expressed and added a little bit of rice cereal to my milk and fed it to her. That night was one of the worst of our lives!! She started spitting up like crazy and she was completely inconsolable for 4 hours until she eventually passed out from utter exhaustion. I was in tears feeling so bad for her that she was in so much agony. It was awful! We never tried that again!

We still didn’t really think much about her spitting up and screaming other than that it could be reflux. I tried raising her mattress on a 45 degree angle, burping her lots throughout feeding and holding her on a 45 degree angle while she fed but nothing improved it. 

She was still 2 months old when I took her to see my chiropractor as I had heard that they can often help colicky and reflux babies. He checked her over and she was pretty much fine everywhere, but he suggested I cut dairy out of my diet to see if there was an improvement. There was! He also suggested not to feed her any soy as she might have a milk protein allergy which is common in babies and soy also can affect them. The improvement wasn’t a miracle cure but things did seem to be a little better for a while. I just found it really difficult to not eat dairy and I slipped up heaps. 

When she was 4 months old I thought I would try her with solids thinking that maybe the night time screaming was due to being hungry. It’s so hard to know if I was feeding her enough with breastfeeding. We started with rice cereal and things went from bad to much, much worse! She basically wasn’t sleeping at night, and she was spitting up so much she was soaking 6-8 spew cloths a day and needed to have a change of clothes often 3 times a day. She also got really bad diarrhoea and would have poo explosions where the poo would end up all the way up her back and into her hair. It was bright green in colour and was a bit mucusy. We stopped that after looking on the back of the pack and realising it had traces of dairy. I bought another brand without dairy but that didn’t help anything. Things just got worse every day. She even started all the screaming during the day. After a week we stopped the rice cereal. Over the next two months we tried different foods on and off but everything just seemed to make her spew more and scream worse at night.

By the time Abbey was 6 months old I was a complete mess! She was usually ok during the day, but come night time she was a changed baby. She would go to bed at 6 most nights but then always wake half an hour to an hour later and then scream and scream and scream. This usually lasted till 11 or 12. Then once she finally fell asleep out of complete exhaustion she would still wake me between 4-10 times. 4 was a REALLY good night and 10 was the most common. She couldn’t sleep any longer then a 2 hour stretch and she would often have a few hours of inconsolable screaming. I was totally and utterly exhausted! 

I started seeing doctors again and was going every week. The first time she had an ear infection so we thought that was the problem. She was given amoxicillin and reacted REALLY badly to that! She couldn’t even sleep 10min straight without waking in obvious agony. She got diarrhoea really bad and an awful nappy rash. By day 5 I couldn’t handle it anymore so stopped giving it to her. We saw the doctor again and he said it sounded like she had reflux but he didn’t want to prescribe medication just yet. He wanted me to try raising her feeding position again to see if it helped. It seemed she did a bit better for 4 days but then things got bad again.

I saw a different doctor and while we were there Abbey did a massive projectile vomit and the doctor said it seemed like she had reflux. (what everyone was telling me) They prescribed Abbey some medication but it made no difference at all.

A few days before she turned 7 months I decided to take her back to my chiropractor as I had heard that he also did allergy testing. I brought along a sample of my breast milk, some cows milk and some corn as I had been feeding her a baby food jar with corn in it and she had been spitting up extremely bad and screaming even worse. Well the test was done by surrogate muscle testing. http://naethawaii.com/muscle-testing/ All three samples showed that she was allergic or intolerant to it. When I got home i got Reuben to help me with the testing and we tested food after food and it seemed she was intolerant to almost everything! I decided to immediately give up breastfeeding and tried to feed her a formula designed for babies with protein allergy. She hated it and refused to drink it. At 1am the next morning after she hadn't eaten anything i decided to just go with the goats milk formula i had in the house. She gulped it down! The next morning we tested it and are still thankful to this day that she can handle it! It is very unusual to have a milk protein intolerance and be able to handle goats milk as the proteins are very similar. But we aren't complaining! 

Over the last 6 months we have made a few mistakes with the allergy testing and have realised she often has build up reactions to food too. We will do the allergy test before we feed her something and it will test fine but then we will notice the spitting up and screaming starting again and redo the test and it will say she is allergic to it. We have still had heaps of reactions. Especially to food she picks up off the floor. Even the tiniest amount can cause her to react and sometimes she doesn’t even have to swallow it. 

But now we finally have answers to all of our questions. I am so thankful that we decided to go to Princess Margaret Hospital to see an immunologist who diagnosed Abbey within 10 minutes of being in the room. Her classic list of allergies and her symptoms didn't leave much to the imagination. Before the diagnosis i already guessed Abbey had FPIES but getting it clarified by a professional was a great feeling and knowing that we are going to get help from now on is also really nice. I was a bit scared that they wouldn't diagnose her as she has never had the violent vomiting reactions to food and that is usually the main symptom. But FPIES is still very unknown and doctors are only now slowly finding out all the different variations of it. Abbey has vomited a few times from her reactions but her symptoms are mainly the diarrhoea, spitting up and non stop screaming in pain. 

So there you have it, a summary of Abbey's first year. Now if you are interested stay tuned as I wait to hear from a dietitian and we start with food trials. Although a few weeks ago she had 6 foods that were safe for her - wheat, apple, pumpkin, cauliflower, honey and sugar. After a few bad reactions in a row her stomach is a mess and she is sadly back down to none being safe anymore and has been living off a diet of only goats milk formula for the past 2 weeks. I am terrified to try anything new, as i know we will lose lots of sleep and worse of all Abbey will probably be in a lot of pain but i am really hoping we can add more to her diet.