Our daughter was recently diagnosed with Celiacs Disease. I have mentioned this on social media and to friends and family, and received the waves of support and resources that I knew I would. You guys all rock! But I have yet to really write a post explaining how we got to that point in the first place.
So here goes nothing. My lesson to share about the medical system when you’re a mom.
What you will learn from this post:
- Doctors don’t know everything & can’t always see the bigger picture
- Doctors/nurses & moms have very different ways of prioritizing facts
- A mom should always trust her instincts & push back when needed
It started out with our regular visits to the Well Baby Clinic at the local medical center. After her 12 month visit, they started to notice that her weight gain was slowing down considerably compared to her height and head size. She was dropping in the weight percentile, but remaining normal or above average in other areas.
At her 18 month check up, they noticed and even larger gap and started having us come in once a month for regular weigh-ins. To me, this was a great precaution on their part & showed a greater concern for tracking her growth more closely.
Just after 19 months, they called me to discuss that they were concerned and that they wanted to refer her to a pediatrician. I completely agreed and said I would like to see them as soon as possible.
Then I heard nothing for over 2 months.
Then this happened and I got pissed off.
I called back and started basically demanding that we get into the pediatrician. I understand that these appointments can take time, but it had been nearly three months since I had apparently been referred and I had heard absolutely nothing.
 |
| Lilly in June. To be fair, she is sick in this photo, but you can see how her belly sticks out & how pale she is. Her belly was always out like this due to gas & constipation  |
 |
| Lilly in early August. This was just 6 weeks after we removed gluten from her diet. She gained 1.5lbs in 6 weeks! Plus her belly has been normal, she sleeps better & looks overall healthier. |
Within a few days of calling, I received a call from the local pediatrician’s office to book an appointment two weeks later to see him at the Midland hospital. I was starting to feel relived.
Lilly and I went to her appointment where the doc inspected her up and down and asked me a ton of questions. He showed me how her weight had started to slow down after 5-6 months and asked what we would have introduced at that time. One word: cereal.
This set off a warning for the doc who began talking about possibilities. The top of his list was Celiacs Disease. He handed me a requistion for over a dozen blood tests and sent us on our way. He said that if it came back clear, we would see him again in three months for a simple follow up. If not, we would get a call and meet him at his office in Orillia.
My poor husband had to take Lilly to get the blood work, as I was just starting a new job…and then had to take her again a week later when they called and said they needed more info. He told me it was the single most horrible thing he has had to do yet as a parent. Honestly, mother-to-mother, I am glad it was him and not me!
Two weeks after the blood work was completed I got a call. We had to go see him in Orillia. Part of me was relieved, because it meant they had answers. Part of me was heartbroken, because it meant there were not the answers we wanted.
We went to the appointment, sat down in his office and the first thing he says to me is, “So, Lillianna has Celiacs.” And that was that. There is no cure, just solutions to live with it. We discussed for the next 30 minutes what those solutions are and how to gather more resources.
All in all, this is a simple thing to live with. It means some changes to our diets and how we view food in our household, but compared to all the things that children can be diagnosed with, we got off very easy. I am well aware of that.
But it doesn’t stop me from thinking, that in an ideal world, all children would be born perfect & healthy & stay that way till they grow old. Wildly idealistic, as always.
It never hurts tone wildly idealistic.
Thanks! I have always been the daydreamer type who looks at things and says, “wouldn’t it be great if…”
You are very right about trusting motherly instincts, even over doctors. Glad your little one is okay. I just had an experience where a doctor nearly gave my daughter morphine for no reason!
cherrypietwins.blogspot.com
Thanks Samantha! Living in Canada, I know I can’t complain about much with regards to health care. For the most part, it is pretty awesome. But I do find I have become more critical as a mother and I am not afraid to speak up more where she is concerned. That’s crazy that they would give her that strong of a pain reliever for nothing!
I am so glad you got it figured out! I know Celiac can be hard to diagnose and often doctors miss it and say it is something else.
I’m quite idealistic too – My daughter has a handful of food allergies, and I can’t help but hope they’re the kind she’ll outgrow. She’s nearly 10 now, I think the chances are pretty small…but I still hope!
Absolutely there is still hope! People can grow out of allergies well into their later life. Regardless, have the battle is just being aware of them and making sure your daughter is armed with the knowledge to make the right choices around her food. My older brother is like the bubble kid – allergic to everything – but he has learned to ask the right questions wherever he goes & lives with it all quite easily now.
So glad they were able to diagnose something and now you can respond to it. My dad also has Celiac Disease – has been diagnosed about 5 years now. Back then it was almost impossible to find anything yummy to eat. At least now the market is getting bigger with more gluten free food. And there are more and more recipes out there for yummy snacks! Good luck as you navigate this challenge!!
Thanks Kat! Yes, it has gotten much easier. Some of the choices are quite expensive, but with the right tools and recipes, you can get pretty close or even better at home. We promptly went out and got a breadmaker, waffle maker & two cookbooks!