PMH frustration!!

We have now joined all the other people in realising how frustrating our health system can be! Lots of lack of communication! I received a phone call from PMH yesterday basically telling me that they had booked Abbey in on Tuesday. We have been waiting for this so it didn't even cross my mind that this date might not work and i just agreed to it. I spoke to Reuben later on and he told me that there is something wrong with our car and he has it booked in to get fixed next Wednesday and that we really shouldn't drive it for 4 hours, so i had to try change our appointment date. I had no number to call back to change appointments but thankfully someone rang me this morning to confirm our appointment. I asked her if there was a possibility of changing it to the week after and she said she would look into it and ring me back. By 4pm i still hadn't received a phone call so i rang her (i had remembered to get her number this time) only to be told that everyone had gone home at 2pm and i would have to call back on Monday. So now i have to wait all weekend without being able to make any plans and have no way to organise accommodation at Ronald MacDonald House like we were planning. If we still need to go up to Perth coming Tuesday i have no idea what we are going to do! I am just really hoping that we manage to get our appointment changed and don't have to stress too much. I really hate not knowing what is going on!

On a positive note we are very thankful that they are taking us seriously and that Abbey will get all the tests done that need to be done. We have been told that they don't know how long we are going to be up there for. It could be days it could be weeks. It all depends on how her tests go and also how her food trials go. I really hope we get some answers and that they will be able to help in some sort of way to manage to get Abbey tolerating at least a few foods. 

Abbey is still not eating any solids, but we have added an extra scoop of formula powder to her bottles to help her not feel so hungry. With the 4 scoops she was having before she was drinking 13 bottles in a 24hr period. Now with 5 scoops she is back down to 9 bottles. She is still very unhappy about not being able to eat and i am so desperate for her to eat again. I'm always so tempted to give in and let her have a bite. But i know that will only lead to hours of screaming. So a few tantrums is easier to deal with then that.

Her diarrhoea isn't as bad as it was before, in that she isn't pooing as often. But they are still very green, runny and foul smelling! Overall her mood is ok, but night times are getting worse by the day again. Hopefully it's not the formula causing this and its just her stomach getting used to everything again.

Saw the doctor

I finally got in to see Abbey's doctor this morning. We talked about her weird spaced out episodes and the doctor is convinced that they were seizures. She said these type of seizures don't cause any brain damage and aren't really dangerous, but she still wants me to try video one if we see it happen again. Then she can give me some more advise and tell me if they really are seizures or not. From there we will decide if anything needs to be done about them.

We also weighed Abbey and she has lost half a kilo. The dietician is not going to be happy with this. But i'm hoping it means that things with PMH will get rolling quicker. The doctor also wasn't impressed that we still hasn't heard from PMH so she rang them herself and got them to put us on the urgent list. We were meant to be on the urgent list months ago but obviously there was lack of communication or something. Hopefully this time is works and we can get another appointment and get some tests done to make sure nothing else is going on. 

In regards to Abbey's mood and sleep, things have improved heaps! On Friday morning i was at my wits end. She had been off all food for days and there was still no improvement. Things were only getting worse. I was heading off to Perth without the kids first thing Friday morning and i was so scared to leave Abbey with Reuben the way that she was. I decided to try put some onion juice in her ear just to make sure it wasn't another ear infection. (I actually think her reactions cause her ears to become inflamed along with her other cold like symptoms. I don't think they are proper ear infections but an ear ache can be pretty painful!!) 1 min after the juice was in both ears the screaming just stopped. She stopped throwing herself around and actually drank a full bottle for the first time in days and then went off and played happily! We were both stunned and felt guilty for not trying this sooner. I left for Perth a little more relaxed and Reuben did a fantastic job with the kids!! I managed a couple of full nights sleep with the aid of sleeping tablets just to make sure i did sleep the whole night! I feel so refreshed!! Abbey was perfect the whole 2 days and only woke Reuben once a night!! She kept up the trend last night too so lets hope it lasts!

When i saw the doctor today, she confirmed that Abbey's ears were pretty red and painful looking. We will continue with the onion for a few days and hope it clears up.

The only thing that is really causing concern now is diarrhoea. Yep, its back, and getting worse by the day. I'm not sure what to make of this and not really sure what is causing it. I'll get to talk to the dietician tomorrow so i will see what she says about it.

Back to NO safe foods

Things still aren't getting any better...its actually been getting worse. Monday night Abbey barely slept and yesterday she only had a tiny nap during the day and screamed almost the whole day. Yesterday I decided to pull all foods again. I am so devastated. Its the worst thing to have to tell a 17 month old that has only just started eating a few foods (and totally loving it) that she can't eat anything anymore. She has no idea that food is what causes all her pain and of course she doesn't understand why I'm not letting her eat. I think dinner times are going to cause some tantrums. Hopefully she only needs a week or two break before we can start adding foods again. She did sleep better last night, only waking for bottles and didn't do any screaming. But today she still isn't a very happy girl. I really hope cutting foods will improve things for us all and that it's not her formula causing the problems. The would be terrible!! She definitely reacts to her formula in more concentrated amounts but having it diluted has been working so far. If she is starting to react to even the diluted amount i don't know what we will do. 

We are also still waiting to see a doctor about her possible seizures. She hasn't had anymore so hopefully that means it was either from her feeling so sick she just didn't want to interact with anyone, or because she was dehydrated. 

Still not getting better

So, even though we have cut out spinach and canola oil, we haven't been seeing any real big changes in Abbey's mood, sleep or appetite. On Wednesday she had another 3 spaced out episodes that kind of freaked me out. We decided on Friday to retest all of her foods with the muscle allergy test and now everything is testing bad. We are thinking that one of her foods has been a very delayed reaction and that it has inflamed her stomach too much and now we are back to square one. Now the problem is working out which food is the truly bad one.

After speaking with Abbey's dietician we have decided to cut back down to 4 scoops of formula per bottle instead of 5. Cut back on the amount of probiotics we are giving her and only give it every couple of days instead of everyday. The dietician thinks its the probiotics that are the problem. They have potato in them and because it such a small amount it could have taken this long for her to start to react to it. We have also cut back on apple. Apple is pretty acidic so that could also be causing problems. We aren't cutting out all her foods though, so we can only hope that things start to improve with the changes we have made and that the problem isn't from one of the foods we are still feeding her. 

Since making these changes Abbey's appetite has gone back to normal. It's a bit hard to judge her sleep patterns because we went away this weekend and being away from home really messed her up. We will hopefully see improvement now that we are back at home. She is still spitting up heaps though and doing lots of burps, having hiccups heaps and she is also really gassy.

Her dietician also wants me to take her to see her normal doctor here to make sure her spaced out moments weren't seizures. Being lethargic and out of it can be a symptom of FPIES but we have never seen it with Abbey before and it usually comes on from lots of vomiting which causes dehydration. Hopefully there is nothing wrong and it was just from her being dehydrated from barely drinking for a few days.

Spinach is a fail

After Abbey got better from her horrible cold and ear infection we started a spinach trial. Like i said in the previous post i didn't think it would work. Although it sounds like a definite fail, with random stomach cramps, screaming, hardly sleeping and hardly eating, she didn't get any diarrhoea. I didn't want to call it a fail right away and after talking to Abbey's dietician we decided to stop until she was back to normal and then start again. In the time we stopped, her sleeping, eating and mood improved.

We started the spinach again on Monday and the last 3 days i have only managed to get 1 full bottle into Abbey throughout the day. She is still drinking 3-4 bottles during the night but that is no way near the 9 she usually has in a 24hr period. On Monday night she had 1 screaming fit during the night and woke me 5 other times just for cuddles or a bottle. Yesterday she had lots of screaming fits throughout the morning. It took a long time to get her to go for a nap and then she only slept 30min. She woke up screaming hysterically like she was being murdered. Once out of bed though she was completely spaced out. We couldn't get anything out of her. She refused eye contact, refused to talk, wouldn't eat. She just laid against us staring into space. It was so weird! I could even lift her arm and she would just let it flop down like she was fast asleep. This lasted for about an hour and after that she was back to her happy usual self. I spoke again to her dietician and we again decided to give it a break for a few days and then try again. Seeing as she still has no diarrhoea we aren't quite sure what is going on. 

After last night and today though i have decided to call it quits. Abbey slept fine until about 11pm. She just woke twice for a bottle but then went right back to sleep. From then onward though it was awful. She woke me 7 times between 11 and 5.30am. So basically hourly. Today she has also still been having heaps of stomach cramps and had another weird spaced out episode. I'm still not sure what that means but its a bit scary. We decided to do our awesome at home allergy test with all her foods again just to make sure nothing else could be the problem. It turns out canola oil and spinach are the ones giving her problems. So we will be stopping the oil too. I really really hope she is back to her happy self soon and starts eating again!! 

Being sick makes things so confusing!

Last week Thursday Abbey had the start of a cold. It wasn't bad, just a runny nose and a bit of night time coughing. The next day she was totally miserable and started getting diarrhoea that was pretty mucousy. At first i thought it was from the canola oil we were trialing. Runny nose and a cough are a very common allergy symptom for her with food and adding the mucousy poop to that didn't look promising. I was so disappointed but decided to pull the canola oil and see if things improved. Although her mood didn't improve or her cold, the diarrhoea settled. I really thought it was the canola oil and was expecting things to keep getting better. They only got worse though as the next day she developed a high fever. Because she reacts to normal panadol and nurofen i have the panadol suppositories for her. I tried to give her one but her diarrhoea had returned and within minutes she had pooped it out again. I tried another straight away with the same results. Her fever was just getting higher and higher. Those were the last two suppositories i had left so i rang Reuben to ask him to pick some up on his way home. I am very thankful that he came home early at 4.30pm because by that time her fever was so high the thermometer wouldn't read it anymore. It was just beeping at me like crazy and flashing high on the screen. I think it must have been over 40 degrees. I was going to take her to hospital straight away but Reuben convinced me to take her for a lukewarm shower first and then when she was out see if the panadol had worked at all. (thankfully she managed to wait half an hour before pooping again.) She almost fell asleep on me in the shower and we wasted a lot of water! But oh well, anything to make my little girl feel better. After i had dressed her again i rechecked her temp and thankfully it was down to 39 degrees. Still high, but after another 10 minutes it was back down to 37 degrees. What a relief!! 

The next day her fever stayed at around 38 degrees all day and the next day she had no fever at all. But she was still very miserable. On Sunday night she basically screamed blue murder all night. She refused bottles and i just couldn't calm her down. By 6am after i had finally gotten to her sleep after another one of her screaming fits, it hit me that she was always pulling on or putting her hands over her ears and that she screamed worse if i laid her a certain way on me in the rocking chair. I started to wonder if she might have an ear infection. When she woke up later on that morning she started out happy, but within half an hour was a hysterical screaming mess again. Knowing she reacts to all antibiotics i didn't even want to bother with a doctor. I used some amazing onion juice and put a few drops in both ears. Within 5 minutes the screaming stopped and she was touching her ear like it was brand new. :) She was back to herself after that and although we had a lot of wake ups the next night from coughing, it seemed she was finally better.

It seems weird that i am thankful she was just sick and not reacting to the canola oil. But food is so important to us and every fail is devastating! Colds and flus come and go within days but if a food is a fail she will lose it for a long time! Since her cold went away we have returned to the canola oil without any problems and have classed it as a pass!!! Yippee!!! We have now started spinach as of yesterday but this one isn't looking too promising! I hope in a few days i have some good news, but i'm really not expecting it after the screaming and tummy pains we dealt with last night and this morning. 

 Abbey with Reuben just before our shower when 

her fever was over 40 degrees

 I kicked Reuben out of bed to deal with Abbey

at 4.30am after basically not sleeping for a 

whole night. This is how i found them 

at 8am when i got out of bed.