Finally someone listened!

So all of this started with a "typical" tummy ache in 09-08. Boo has been complaining about belly aches since she could talk to me. Call it gut instinct, paranoia, whatever I have always known that something was wrong with her. She was a cranky baby, never seemed happy or satisfied. She had what was labeled as unconfirmed RSV at 8 weeks old. Asthma symptoms soon followed and the Pediatrician at the time said that she had visible damage in the middle lobe of her right lung. Boo had pneumonia 5 times in the next year after that. In fact I think that she was sick most of the time. But because she was seemingly happy and all of her blood work always came back normal she was fine. He suggested trying to cut out milk to see if there was a possibility of a milk sensitivity. We did that and her symptoms improved. I still always felt that there was something more wrong. Just before she hit about 2 is when she started to complain about her belly. I had more blood drawn and our family doctor noted her unusually round belly. Again, blood came back normal and it was assumed that the tummy was just who she was. It was about this time that her belly button changed from being an 'innie' to an outie as well.

Boo was in full time daycare, I had noticed some behavioural stuff starting. She'd have tantrums that far exceeded what I considered normal. They'd last for hours. Hours of crying and screaming. I always felt like it didn't matter what I did, it wasn't enough to make her happy. On top of the tantrums I was also noticing umm.. odd things about her. She always stomped when she walked, her hand eye co-ordination didn't seem up to par, she rarely made eye contact when communicating, she wouldn't notice cuts on her her fingers or toes and she had a tremor when she was doing things. I brought it up at her next check up and the dr said to stop comparing her to my oldest that all kids develop differently. He drew more blood to check her sugars and since that came back normal, to give it time. In the mean time I started looking at sensory processing disorders and set up a meeting at her daycare.

Boo was a little over 2 when I spoke to her daycare. They were so receptive, she'd had the same caregiver--Carolyn for about a year at that point. Carolyn was fantastic, not only with Boo but also in the aspect that she had a child with sensory issues so she was open to the possibilities and assured me that she'd be more watchful, and she was. Carolyn noticed the small things that I noticed, she worked hard with Boo to get the hand-eye coordination up to par, got her writing with a crayon and re-affirmed that yes, something was not quite right there. I then made another appointment with my Dr, expressed my concerns and then insisted that she be referred for a sensory assessment. The waiting list for that assessment was 12-18 months long.

In the time we waited she stayed about the same with the exception of her ever growing belly. We relocated from up north to southern Ontario. This meant new dr's, new waiting lists and still no answers. The year after we moved was tough. I have to admit that Boo was placed on the back burner, after all according to the Dr. there was nothing wrong. We moved for a second time and I got pregnant with our last baby. The next year was consumed with that. We were still getting nightly complaints about tummy pain, I took her back to her Dr and still got "there's nothing wrong" I started noticing the hand tremors getting worse, the tantrums had gotten excessive at time and I still knew that something was off, so I started looking into a referral for sensory issues again. She had seemed like she was getting down, her mood more often was miserable and we rarely saw her smile. I started noticing that the once small things seemed to be getting worse. Not only did she have the worsening tremors, but at meal times she would knock her bowl off the table, or her cup. When pouring a drink more would end up on the table than in her cup. She was falling more when she was just even walking. I talked to her teacher at school and he said that he hadn't noticed and she was doing quite well in school. Again, blown off.

In March 08 she started looking pale. She wasn't eating well, she wasn't sleeping well and she started to really complain about her tummy. I booked another pediatrician appt and this time I said, something is wrong. She had been complaining about feeling tired all the time, she wasn't playing anymore and crying a lot of the time. We had blood drawn and I received a call a few days later. I had anxiety of not knowing but hope that maybe they found something to explain everything. We went to the dr and she was diagnosed with Mononucleosis. The dr said to let her rest and she will be better in a few weeks. And she was. Once she got her energy back she seemed a bit happier, maybe the rest did her good, who knows. We still had nightly tummy ache complaints but she did seem a bit better. I was still noticing the clumsiness but summed it up to maybe it was just her. I was in the process of getting a referral anyways, so I let it go.

At the end of September she got a stomach flu. She was the first to get it, she didn't really have any symptoms other than stomach pain and a very low grade fever. Over 2 days it progressed to the point that she wouldn't even stand. I took her to the emergency room. 9 hours later we left with a diagnosis of Irritable Bowel Syndrome. The ped. gave her a suppository to help get things moving. Her stomach was rock hard and more bloated than I had ever seen. I was genuinely worried. The dr had done an ultrasound and they could see how distended her bowel was. It was so swollen, they couldn't visualize her liver. But the Dr. reassured me that since all of her blood work came back normal she was fine. We came home with just that. When I looked it up it all seemed to fit. Maybe she'd had that all along, it did make sense. We went to see the pediatrician 2 weeks later. Boo was still very bloated but feeling less pain. I told the ped. that she still didn't look right to me, that I just felt like there was something more. The Dr. did an x-ray which showed severe constipation. She was so constipated that her stomach had stopped digesting the food that was going in. You could see her breakfast in the x-ray inside a severely distended stomach. The Dr. said to put her on a soft food diet, pump the fluids and see her again in a week. In the meantime, she gave Boo a perscription for an antacid, because her stomach was taking so long to empty, she didn't want the acids burning her stomach lining. The antacid had a lovely side effect of diarreah. It was enough to get things moving a bit for Boo, the pain went away and even though her belly was still bloated and quite hard, she seemed to have more energy, was happier and seemed to be feeling better. But if I felt around her stomach, I could feel hard masses in different spots. At the next appointment I said she seems to be feeling better, but she's still hardly having bowel movements despite prune juice cocktails and every natural food remedy or old wife tale. The Dr. said the some kids can have constipation that lasts months and to keep pushing fluids and soft, easily digestable foods.

Just before we left, having done my research I spoke to the pediatrician straight from my heart. I said "look, we have had tummy aches, and problems since she was a toddler. Maybe it is just IBS and if it is that will make me happy. But I have this feeling that there is more to this, to me she looks sick, she's pale and she doesn't keep up with the other kids. And with my family history of bowel diseases could you please test her for Celiac and Chrohns Diseases"
Her response was " In all honesty her blood looks perfect, in fact I couldn't ask for better, but yes.. I will ease your mind and do these tests. I really don't see them coming back positive"

October 30th, 2008 I took Boo to McMaster children's hospital for the bloodwork. Since it's not covered by OHIP in the labs unless it's done through a children's center.

November 5th, 2008 I received a call from Dr. Doyle's office, te kids' pediatrician in Hamilton. The nurse said that the dr would like to see me as soon as possible regarding Boo's blood work.
I asked if they found something, and she stumbled over herself "uuuh.. yeah the Dr. wants to go over the bloodwork" A million things ran through my head in that moment. There was something wrong, I knew what was on the blood requisition. She had either Celiac or Chrohns Disease. My baby. The nurse said that the Dr wanted to see me the next day, sinc that wasn't possible we had our appointment November 7th at 9:30. Dr. Doyle said that Boo is Celiac. I asked if there was any doubt, and she said that with the numbers that she has it's not likely anything else. The biopsy that was going to be required was just a formality. She was to be referred to Mcmaster Children's Gastro. Unit for a biopsy.

I came home and frantically Googled. I saw more and more how challenging this diagnosis was going to be. I had made an appointment for my other children, just for a checkup and Celiac screening. On the way to that appointment McMaster called me with an apfternoon apointment that day. And even though it created a crazy hectic day November 18th we saw Dr. Brill.