So Im sat here today, doing some work on the GlutenFree UAE Facebook page, and I decided to re share everyones personal stories. These stories make my heart ache every time I read them, they make me more determined then ever to keep going, to stand up, whenever I can and keep talking about Celiac disease and gluten. While there are still doctors out there now knowing the signs of Celiac disease, my job, and the job of others like me, is not over. We need to keep at it, keep talking, keep sharing, keep liking each others blog posts and keep on nagging everyone around us. Because although we may at times seem like a broken record, there are so many people out there who still need rescuing from the hell they are living in. We were rescued, we should have been rescued earlier, I cant change that, but I CAN try and change it for others.
So here it is, the story I cant rewrite ever again because it pains me to much to even read it. But this is Aili’s story, and ultimately also mine.
This is Ailis story. Aili has Celiac disease.
Aili was born in May 2009. The pregnancy was difficult requiring hospitalization for 1 month, and when she arrived in the world she was 6 weeks early.
Aili was never an easy child, obviously at first we put it all down to her being premature, then as she got older she earned the titles difficult, stubborn, hot tempered, bad sleeper etc etc. The list grew by the day.
She had endless problems with constipation, at times she would go over a week without doing a number two. Again, we put it down to her being premature and her digestive system not having matured enough, so struggled on with baby massage and sleepless nights. When it was time for weaning she point blank refused most foods. I dont think she actually ate anything properly until she was 1, and even then she ate very little.
Our older child started school when Aili was just over 1, and then the illnesses started, to many to even mention here, so we will stick to the big ones only. Victor who had never been to nursery seemed to pick up every single bug, and offcourse everything was also passed on to Aili. We had tummy bugs and colds with endless coughs, then Victor got pneumonia and was admitted to hospital for 4 days. Hugely stressful time as a parent. Less then a month after Victors pneumonia Aili got sick again, worse then usual. We tried to keep her home with daily visits to the clinic (difficult children dont do well in hospital), but she eventually got so bad we loaded the whole family to the car and went to the A&E, she seemed to get worse by the second!
We were sent to the fast track clinic from A&E where a nurse spotted Aili and promptly took us back to A&E, Aili was very very ill. She was admitted and tested positive for RSV. Her oxygen levels were so low had we kept her home longer she would have possibly suffered brain damage as a result of lack of oxygen. 3 days in to her stay her breathing was better but her heart rate was starting to go all over the place, she was on every monitor available at this point…. at one stage her heartrate dropped to 35 and noone knew what on earth was going on, We became heart patients instead of RSV patients. The RSV (which affects premature babies/children alot worse then full termers) had hit her hard and it had gone from her lungs to her heart muscle. Eventually we were sent home with follow up appointments with cardiologists as well as the usual doctors.
Her heart is fine now, we have received the all clear, but I am not sure I will ever fully recover from seeing my daughters heartrate go from normal to almost stopping.
A few months passed and Aili had stopped growing. She cried more then ever before, even in her sleep, she would not sit and play for even 2 minutes on the floor (not that she ever really did before either).
So we held her, we held her at night when she slept, we held her when she was awake, we held her when she played. Food was still a constant battle and she still did not each much. It seems we were in the doctors clinic atleast twice a week. I would phone up and before even asking for an appoinment the receptionist would ask if it was Aili’s mum calling.
We were told RSV can take children a long time to bounce back from, so we struggled on, not really looking for answers, we thought we had them!
A few more infections, more bouts of diarrhoea then back to constipation, I kept breast feeding because it was the only thing she seemed to want. Her stommach was always bloated and as she started talking more and more she would now tell us daily that her stommach hurt. I went to the doctor (again!) this time looking for answers, RSV still affecting her just didnt seem likely anymore.
We did stool samples, bloodtests, etc etc, everything came back ok. She got another bout of diarrhoea and also vomiting, she had aways vomited on and off, but together is never a good thing. We spent days in the clinic with an IV and nights at home.
After days of not getting better and no medicines seeming to help again we went to hospital and got admitted, she was dehydrated and her iron levels were found to be so low they wanted to give her a transfusion! STILL noone had answers for us….
4 days in hospital and off home we went, I made her a big bowl of pasta, and she vomited again…. I think we all knew at this point that this was not just some tummy bug, something must be very very wrong with our little girl…..
Our doctor called and told us some tests results had come back and we had to come in. I knew which tests had been taken so I think I knew then that it was either dairy or gluten. I prayed for it to please be dairy, please please let it be dairy! It wasnt, it was gluten and our lives changed forever.
I say our lives changed, but they changed for the better. We took Aili off gluten and within days she was calmer, the crying eased off and she would sit and play with her brother for short periods. After a week or so she came to me, pointing at her stommach and said, “look mummy, owie all gone!” (That made me cry)
Her bad temper calmed down and she seemed a little bit to us like someone had given her a tranquilizer. For the first time ever I was able to stop and chat to other mums at school run, because Aili would wait patiently rather then scream her head off. I was able to go for drives that took longer then 10 minutes, I was able to complete a supermarket shop rather then giving up half way through.
People I hardly knew were coming up to me saying our daughter seemed different! For the first time I realised just how bad things had been and how stressed I had been, slowly slowly we started to relax and be a family again. We still felt awful though that for all that time, our little girl had been in so much pain.
I am not going to go in to the long story of doctors visits or the rest of Ailis diagnosis, or even how I came to start Gluten Free – U.A.E, because this is Ailis story, not mine.
She is now a happy 2 year old, she is growing again, she no longer has stommach pains, and we are enjoying spending time with her.
Aili’s mum – Linda
EDIT 2014, Aili is now a happy 4 and a half year old, You can follow her journey on her mums (more personal) blog, Gluten Free & Me ( <– that is here!)