The diagnosis!

I really have to share our success.

Boo started Gluten free almost 1 month ago. We got the final confirmation of Celiac on the 19th and I met with a dietitian that said that she can't help me because I'm on the ball YIPPEE!

The changes in my sweet baby girl have been phenomenal. Her depression lifted within days of starting the diet. She has started skipping around the house, singing, humming and being a normal, healthy six year old :) Nothing can please me more. I realized I've never seen her happy though and that broke my heart. Her anxiety attacks are pretty much gone she's had 2, but it's also Christmas lol. She's stopped talking to her self in her bedroom at night (she would talk self hate for hours, alone) and we haven't seen a single tantrum in two whole weeks! She would tantrum for hours at a time.

She's started hugging me and kissing me all the time now, she used to hate to be touched. Her hand tremors have disappeared and she's now making eye contact with everyone most of the time. The pain, neuropathy and ataxia seem to be last on the recovery list, but I'm thinking that once she has some more body fat and constipation relief that will go too. The dr said not to expect major change before 6 months but to embrace what does come and boy am I embracing!

Honestly, I was pessimistic when it came to thinking about her recovery but I am falling completely in love with my girl all over again. I'm so happy she's happy and feeling like a normal girl! My life is returning to normal again, well a new normal :)

I will start to update more once the holidays are over.. start keeping track of the food I make. Yippeee I am just so happy for us

Day 6 GF

Things are going a little better. Shopping is no treat without my binder, lesson learned. Boo had a bad day yesterday at school, so it's hard to say if we had a temporary good streak or not. She's such a tough cookie. She read through the binder and is seeming more optimistic. We can keep a number of our favourites around and that's super, seems to help keep her attitude positive. I had a friend make a wonderful suggestion, that we sit, cut fliers and make a collage of the things she can have, try to focus on what's available rather than what's not. She says her belly still hurts once in a while, but that was when I asked.. we haven't had a night time complaint for a few days now. She is starting to read labels which is great as well, this morning I was limited on GF breakfast options she had Cocoa balls which didn't do it for her heh, and I asked and she was ok with the other kids eating waffles even though she couldn't. I felt like I was teasting her, but she was amazing and didn't even get upset...when I apologized she just smiled and said that's ok. I'm so proud of her and how she is handling all of it and choosing to make healthy choices for herself. The kids have a christmas food drive so I was able to send a bunch of glutened items to help empty my cupboards sooner. YAY! haha

All in all, she has a better attitude, happier disposition and seems to be able to focus a bit better. Improvement is awesome

Day 4 gluten free

So, this is taking more getting used to than I expected. Maybe I was naive in thinking that this would be easy, but so far it's not really that easy. Today is day 4 of GF for Boo. Day 1 was amazing, she was happy like I've never seen, the depression, anxiety and irritability seemed to lift the first day and although yesterday was a little rough for her I attribute that to lack of sleep the night before. She has energy, she walks around singing and gets the giggles something fierce. She complained about her tummy yesterday but that was the only time in the 3 GF days. YAY!
If these are the immediate results I am so excited to see what she's like in a couple months :) :) :)
There isn't a change in the neuropathy or ataxia yet, but don't expect to see that for a few months (from what i've read)

I just want my baby girl to be happy, and I think I'm seeing a glimpse of how happy she can be and it just warms my heart.

The take out experience...

So we decided on Saturday to do some shopping. Let the kids buy their gifts for each other and us. We left early morning after some GF pancakes and actually had a lot of fun while out. Then came lunch. We had 1 then 2 then 3 and 4 hungry children. 3 of which could eat anywhere and one that would be totally left out if we ate at the mall. I slipped over to the drugstore in hopes of finding a GF snack, and after about 25 minutes of label reading came up with some really nasty rice chips and a bag of pistachios. So ultimately we had to leave the mall, go back home to eat and then try to continue shopping later... which was a bomb.

So I realized that I need to be much more on the ball with packing snacks, especially for Boo even though she was relatively satisfied with the pistachios :)

Take out is out...

the first supper

We took a trip to Cambridge to a super fantastic store called El Peto today. It's a 100% gluten free bakery that does all sorts of great stuff. It was kind of crampy especially with 3 kids (1 in stroller) but the guy (Jesse) was amazing about it. I hate going into small places like that because well, kids are destructive, loud messy little beings that get worse in smaller spaces :) Within a few minutes Jesse had the kids eating GF cookies and goodies. He showed me all of the stuff they had, told me what it was useful for and what gluten filled item it replaced. I was so lost when I walked in and he was just amazingly helpful, I walked out with a few things to try and some free samples. I'd give this place a 2 thumbs up by far.

So I don't know if it's in my head or not, but today is Boo's first mostly gluten free day and she had a fabulous day. I didn't have the heart to say no to timbits this moring, I will have the strength just not yet. Today she had 2 oranges and timbits to start the day. For lunch she had GF pasta (still haven't hit that kraft dinner taste quite yet) and I made a loaf of GF french bread. She really liked that, they compared the flavour to a cross between "normal" bread and tea biscuits, and if I have to be honest... it was actually pretty darn good :) and now I am in the process of making supper which consists of rice, pork chops baked in GF cream of mushroom soup, broccoli and more of that yummy bread. I will report on the success of dinner but by the smell of the soup it will be scrumptious.

Overall I would have to say that Boo has had an absolutely wonderful day. I don't know if it's because she slept in, or because she's had very little gluten today but having a little girl that walked around singing, dancing and giggling while she played with her sister was heavenly. And if this is what I have to look forward to then I'll take it.

The Biopsy~ December 3

Well, it's amazing the strength you can see in your child given the right opportunity. Boo was a rock yesterday. I felt so much pride in how she handled the whole thing. She fasted after midnight for the procedure. She was allowed up to 8oz of apple juice by 10am which I gave to her then. She was hungry, but not as cranky as I expected. We arrived at the hospital at 12:30, her surgery was schedule for 2:30. We were in the child's play room for a big part of that time. She was changed into pyjamas and I was changed into scrubs so that I could go into the OR with her. We spent time talking, playing and watching movies. 2:30 came and went the OR had been unusually busy so we were bumped back. I think she was the last one booked for the day. Boo was getting overstimulated by the screaming children. She was starting to fade, hungry, thirsty, tired you name it. She kept telling me that she was excited to have the biopsy done so we could make her tummy stop hurting. It broke my heart and filled me with pride all at the same time. She understood it, why this was going on and the ultimate results. A few minutes before we were called back there was this wonderful older lady. Her grandson was getting surgery done and she had gotten the news that he did well. She was speaking a little prayer just under her breath. When we were finally called (at 3:30) she put her hand on Boo's arm and said "you'll be just fine" she said another little prayer under her breath. She asked if she could put some sacred Jerusalum oil on her arm, I said yes, but Boo backed off. So she put it on my arm. I'm not a religious person so to speak, I have no idea the ethnicity of this wonderful woman or her religion. But the honesty and sincerity of her words and her prayers lifted my heart. I will always be grateful for the kindness that she extended to my daughter and I.
So we were called back to the OR waiting area they gave us some fancy hair caps Boo was not pleased lol. They gave her a couple little hand knitted bears and filled her stamp book with more stamps and stickers. We waited there and met each smiling staff member one at a time. At 4:15 we were on our way to the OR. Boo had a big grin on her face, she seemed happy. We walked into the OR and she took a step back when she saw all of the people in the room. I whispered that they were all there just for her and only for her. She beamed them all a big giant grin and hopped up on the the table. They wrapped her in some hot blankets and she looked so cozy. I flashed back to when she was first admitted to the hospital at 8 weeks with pneumonia, she looked as vulnerable now as she did then. It took everything I had in me to keep smiling. They strapped her onto the table and put the mask on her face. My momma bear kicked in, I wanted to back out and take my baby out of that place and run. Logic told me this was not possible, but that was my baby on there. She did so wonderfully, she took deep breaths like she was supposed to, I saw her eyes glaze over and get spacey. Her eyes started to get watery and I noticed she had some hair in one of her eyes so I moved it away. As she started to go under the anesthetist said she would start squirming. Now when you hear the word squirming you think wiggling, or at least I did. This was not squirming, it was all kind of surreal. I have never seen anything like this other than during my mom's seizure episodes and then it was called posturing. Her eyes rolled into her head and her whole body arched her arms rolled backwards and her wrists flipped down tight. They kept assuring me that it was a completely normal response that the body fights the drugs unconsciously until they are out, thus the strap to keep her on the table. Once she was out they let me kiss her on her precious little head and led me out. As we were walking out the nurse asked if she had done this before, I said no, none of my kids have had surgery, she patted me on the back and said "wow, you are doing amazing" I took a deep breath and just broke. I couldn't stop the tears, she smiled and told me to get it out that it's a really hard thing to see. And it was.
So I left the area, went through the maze of a hospital to get a much needed drink. My original plan was to get something to eat as well, but there was no way I could stomach a bite. I went outside to make some phone calls. When I went into the PACU waiting area a few people looked at me and asked if I was Boo's mom. My heart and my stomach dropped. I had only been out maybe 10 minutes I went to go find someone and was immediately lost in my panic. I saw a nurse and told her that the Dr had been looking for me and that Boo had only been in a few minutes. She took me to the OR waiting area that we started in, and another nurse chuckled at my panic assured me that everything was fine, the biopsy only takes a few minutes. The surgeon came out a few minutes later and smiled and said she was perfect, it went exactly how it should. But pending the results of the biopsy he said she does indeed look Celiac and to go ahead and start her gluten-free. He said that I should also have everyone else tested, which I've started doing.
I went back to the PACU waiting area and waited. I was so relieved that it was almost done. After about 1/2 hour they called me to the PACU room. When I went in Boo was pretty out of it. They said she took a bit longer to come out than expected but was doing well. They brought her a popsicle. She was so angry that the IV was still in. They had netted her whole hand so she couldn't move and with her sensory issues, she obsessed and got seriously irritated. But other than her very croupy cough she honestly looked good. After about 15 minutes we were moved to the recovery area. Within minutes she was becoming more like herself, the glaze left her eyes and she was irritable but more like the little girl that I love with all of me. Our nurse went on a break or something so I ripped open a hole in the netting so she could at least stretch and wiggle her fingers and that provided a huge amount of relief. So we waited, we chatted she started moving about the bed and getting anxious to go home. By 7pm, she was released and home we came. In all of that, there was a point that she asked me what the Dr said, I wavered, I didn't know if I should be honest quite yet. But I had to, after all this is her journey not mine. As soon as I told her she broke down, she told me she hated her body. She hated that that was the way she was made and she was sad because "it's just not fair"

The only thing I could think to say was "no baby, it's not fair, but you are still perfect because this helps to make you who you are"

Pre-Op ~ December 2nd

We did the pre-op a day before the actual procedure. We arrived at the hospital by 9:30. Now I have to say, McMaster Children's is a phenominal hospital. They answered all of our questions and made Boo a part of what was being done to her. They have a team called the Child Life team. They took Boo into a room, showed her a picture book of the OR and what would be done. She was allowed to touch the masks, IV and heart stickers. They really did a great job at preparing her for what was to come. We met with an anesthesiologist and filled out all of the paper work. They Gave Boo a passport to get a stamp for each stage of surgery. Check-in, getting jammies on, going to the OR, waking up, and going home. This proved to be one of the best things that they could have done for us. That book gave her incentive to wait as long as we did. They gave us a patch for her hand so she wouldnt feel the iV and off we went.. 4 hours later haha

Nov. 18th appt.

We saw Dr. Brill at 3:30 that afternoon. He did a thorough history which pleased me, he noticed the tremor in Boo's hands and witnessed her poor co-ordination. He told me that he was going to test her thyroid because that can sometimes explain the tremor. I asked secretly hoping that this could be something else, and said although it's possible don't get your hope's up. I asked if the Neuropathy and Ataxia will persist after a gluten free diet and he smiled and said "probably not, the difference you will see in your child will be incredible. But for now keep the gluten coming at least twice a day so we get a nice good sample" His optimism gave me some hope, I am totally willing to do anything to make her feel like she's normal. When he did his exam he noticed the same masses in her stomach, and said she's really constipated. I said she's been like that since September. He said he didn't want to treat that either until the biopsy, but when I went to book the biopsy to tell his receptionist that we're hoping for a cancellation. Because the appt. had been booked last minute, I was completely overwhelmed. I didn't have my list of questions and my brain felt overloaded. Although the secretary was gone when we left the appointment, I had to return the next day for blood work so I went first thing and got her biopsy booked for December 3rd, 2008, her pre-op appoinment is today December 2nd and the followup appointment is booked for December 19th at 9:15.

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.