Ever heard of Celiac Disease? Or as we refer to it around here.. Silly Act. Just 6 short months ago this was one of those things that just wasn't on my radar. Sure, I'd heard the words, I even know a person or 2 who has it, but it just wasn't something I ever thought about. Then my eldest daughter got sick. It seemed like the flu that just never went away! After a few weeks of daily vomiting I started to get concerned. I know what you're thinking... "a few weeks! Dawn, what took you so long". LOL, well when you have as many kids with the issues we have, you just don't jump into panic mode that quick! She had seen the doctor in that time and she was still able to function... sort of. When we hit the one month mark and she was now loosing an average of a pound a week... Then I was in lion-mom mode!
After hearing me talk about her symptoms, a co-worker of mine told me about her son's 2 year ordeal with the same symptoms and his eventual diagnosis of Celiac Disease! Well, I was certainly not going to do this for 2 years! I had to much else to do! So, I got home and Googled like a mad women. Thankfully, we already had a scheduled appointment with her Pediatrician to go over the previously ordered extensive blood, so I didn't have to wait long to talk to her about my new suspicion. Sure enough, at that appointment we were told that all the blood work was fine. A relief and frustration at the same time. More detailed blood work was ordered and the Pediatrician reluctantly agreed to add the Celiac tests to the reacquisition. Two weeks later, right as the doc's were about to admit my daughter to be tube fed (she wasn't keeping anything down by this point) the results came back! Overwhelmingly positive for Celiac!
PHEW! We have an answer, we have a fix! It's not life threatening... and she can live a normal life... without wheat that is. What a relief from a 2 month ordeal. I can't even begin to describe the almost instant transformation! Within a week of being wheat free, she was back to herself! Keeping everything she ate down (yay) and full of life and energy again, a mixed blessing as any parent of an ADHD child knows!
Then reality sets in! Why are Gluten free food so darn expensive! What? I can't feed her convenience food? I have to check everything from medicine to lip balm for gluten? This is more work then my other daughters peanut/nut allergy! Everyone in the family needs to be tested? Yup, it's an inherited autoimmune disease, so chances are high that other family member have the disease as well. The good news is that 2 of the three other kids tests have come back negative. We are still waiting on 1. And then there's mine. Positive! YUK. O.K. so now it's personal, ugh.
Like my daughter, my own results were almost immediate and astonishing! 3 days wheat free and I was down 5lbs!! My midsection is flattening out for the first time in years!! The best part is that I'm not tired anymore. I love that I finally have the energy to chase my kids around and don't need to nap with them anymore. Almost makes it worth a lifetime without smarties. My big question; How much of a role has this celiac played in my ongoing battle with depression and anxiety? All those times when I felt like I just couldn't function and blamed depression... Maybe I just had to much wheat. See! donuts ARE evil!
Friday, May 22, 2009
Thursday, May 21, 2009
That was not on the schedual!
A bit of a background, in case you don’t already know, is that our son Tyson was diagnosed with Epilepsy September 2007 after having his first Grand Mal seizure on his first day of School, then 4 more in the 2 days that followed. He had extensive blood work and a CT scan to rule out anything more serious, then a EEG and an EKG to confirm the diagnosis. The months that followed held a few more EEG's and an MRI. During this time we discovered his allergy to latex. Have I mentioned how much I love God's humor? I'm not kidding... I think I would love to just 'hang out' with God, we'd have a lot of fun laughing at the ironies of life.
For about 8 months after the diagnosis, we struggled daily with Drop seizures and Myoclonic seizures (10-15 a day). A Drop Seizure ( Atonic) is when he suddenly, and without warning, looses all muscle tone. It's like he turns to jelly, but can fall quite hard. He has had drop attacks while on the stairs, resulting in quite the tumble down the stairs. He has taken drop attacks at the kitchen table, with his head hitting the table, hard. He has had a drop attack while drinking hot chocolate, scalding his hands and face. Drop attacks have caused his teeth to cut into his lips, they have caused countless bloody noses and bruises and general cuts and scrapes. In short, the drop attacks quickly became the most stressful part of his journey. Of course, he would still have some Tonic Clonic (grand mal) seizures that would last an average of 6 mins (yes we have Ativan on hand) followed by a 4-6hr loooong deep sleep. And just for good measure, he would throw in the occasional Absence.
Then came a magical day when hubby and I realized that Tyson hadn't had a seizure for a few days... then a week.. Then a MONTH! We FINALLY had the right mix of medicine! Trust me when I tell you that was a battle on it's own. There were days when I didn't even recognize him. He was a completely different child. There was hallucinating, uncontrollable compulsive behavior, self destructive behavior.. the list of side effects is long but thankfully we have a great Neurology team at McMaster Childrens Hospital. Tyson's Nurse is always just a phone call away witch is very comforting among so many uncertainties. After a lot of prayer, patience, and persistence we eventually got the right combination of meds to get his Epilepsy under control.
So where are we now? well. If you've ever been told that God takes hard times and uses them for good, believe it! While in the middle of the fog, I never would have believed that God was using the experience to transform me, but he did! I went from meek, mild mannered soft spoken shy girl to the lioness I should have always been! Just try and get in between me and one of my kids... Or chocolate! I've had to learn to fight and advocate for the sake of my kids, speak up, ask questions and not take no for an answer! The thought of these things would have made me throw up 5 years ago!
Tyson still has the occasional drop seizure and once in a while he'll have one of the others but it's manageable. We've learned to accept a last minute schedule change to accommodate the need to recover from a seizure. Some times we even enjoy the unscheduled down time!
We've moved on. Epliepsy is just part of who he is. No big deal. Now, we're on to tackling the next mountain... His ADHD!
For about 8 months after the diagnosis, we struggled daily with Drop seizures and Myoclonic seizures (10-15 a day). A Drop Seizure ( Atonic) is when he suddenly, and without warning, looses all muscle tone. It's like he turns to jelly, but can fall quite hard. He has had drop attacks while on the stairs, resulting in quite the tumble down the stairs. He has taken drop attacks at the kitchen table, with his head hitting the table, hard. He has had a drop attack while drinking hot chocolate, scalding his hands and face. Drop attacks have caused his teeth to cut into his lips, they have caused countless bloody noses and bruises and general cuts and scrapes. In short, the drop attacks quickly became the most stressful part of his journey. Of course, he would still have some Tonic Clonic (grand mal) seizures that would last an average of 6 mins (yes we have Ativan on hand) followed by a 4-6hr loooong deep sleep. And just for good measure, he would throw in the occasional Absence.
Then came a magical day when hubby and I realized that Tyson hadn't had a seizure for a few days... then a week.. Then a MONTH! We FINALLY had the right mix of medicine! Trust me when I tell you that was a battle on it's own. There were days when I didn't even recognize him. He was a completely different child. There was hallucinating, uncontrollable compulsive behavior, self destructive behavior.. the list of side effects is long but thankfully we have a great Neurology team at McMaster Childrens Hospital. Tyson's Nurse is always just a phone call away witch is very comforting among so many uncertainties. After a lot of prayer, patience, and persistence we eventually got the right combination of meds to get his Epilepsy under control.
So where are we now? well. If you've ever been told that God takes hard times and uses them for good, believe it! While in the middle of the fog, I never would have believed that God was using the experience to transform me, but he did! I went from meek, mild mannered soft spoken shy girl to the lioness I should have always been! Just try and get in between me and one of my kids... Or chocolate! I've had to learn to fight and advocate for the sake of my kids, speak up, ask questions and not take no for an answer! The thought of these things would have made me throw up 5 years ago!
Tyson still has the occasional drop seizure and once in a while he'll have one of the others but it's manageable. We've learned to accept a last minute schedule change to accommodate the need to recover from a seizure. Some times we even enjoy the unscheduled down time!
We've moved on. Epliepsy is just part of who he is. No big deal. Now, we're on to tackling the next mountain... His ADHD!
This is not what I ordered!
Welcome to the first post on my new blog about us! I thought I'd start out by sharing a bit of a background... to catch you up to speed so to speak.
Remember back to grade school? Playing pretend, imagining who you were going to marry and how many kids you would have? I was going to be an astronomer, marry a surgeon and have 2 perfect children. They would be on the honour roll and of course be the most well behaved children you ever met... not to mention popular and athletic!
Fast forward to the present. Married, yes. Surgeon? Unless you're talking about altering and fixing music gear, the answer is no. My Career is a part time job at the bank and my kids, well... don't you just love God's sense of humor? I have 4 wonderful children and I did manage to get the popular and athletic part (I'm allowed to brag), but, although I believe my children to be ultra genius, our current educational system would beg to differ with me. Einstein and Beethoven would have been labeled ADHD as well, but for some reason that doesn't get my kids A's in school! Instead, I find myself constantly meeting with the teachers of my 2 ADHD kids to discuss strategies and behavior. I've got a whole blog planned on that topic!
Just in case having 2 ADHD kids in the house wasn't enough to keep us on our toes, Hubby and I also managed to throw in Epilepsy, Celiac Disease, Asthma and some Anaphylaxis. Think food allergies arn't a big deal... you try planning a week of meals with NO wheat, Gluten, tomatoes, legumes or nuts! Oh, and just for kicks, do it on a very tight budget and limited time. This is where irony kicks in, I don't even like to cook and I've never been good at planning ahead! I'm learning.
Thinking back to the playground, I don't remember putting a major depression or anxiety disorder in my 25 year plan. I certainly didn't plan on marrying a musician or the roller coaster of life being so unpredictable, but somehow I've managed to stumble on happiness anyway. Go figure, mom was right after all.
Remember back to grade school? Playing pretend, imagining who you were going to marry and how many kids you would have? I was going to be an astronomer, marry a surgeon and have 2 perfect children. They would be on the honour roll and of course be the most well behaved children you ever met... not to mention popular and athletic!
Fast forward to the present. Married, yes. Surgeon? Unless you're talking about altering and fixing music gear, the answer is no. My Career is a part time job at the bank and my kids, well... don't you just love God's sense of humor? I have 4 wonderful children and I did manage to get the popular and athletic part (I'm allowed to brag), but, although I believe my children to be ultra genius, our current educational system would beg to differ with me. Einstein and Beethoven would have been labeled ADHD as well, but for some reason that doesn't get my kids A's in school! Instead, I find myself constantly meeting with the teachers of my 2 ADHD kids to discuss strategies and behavior. I've got a whole blog planned on that topic!
Just in case having 2 ADHD kids in the house wasn't enough to keep us on our toes, Hubby and I also managed to throw in Epilepsy, Celiac Disease, Asthma and some Anaphylaxis. Think food allergies arn't a big deal... you try planning a week of meals with NO wheat, Gluten, tomatoes, legumes or nuts! Oh, and just for kicks, do it on a very tight budget and limited time. This is where irony kicks in, I don't even like to cook and I've never been good at planning ahead! I'm learning.
Thinking back to the playground, I don't remember putting a major depression or anxiety disorder in my 25 year plan. I certainly didn't plan on marrying a musician or the roller coaster of life being so unpredictable, but somehow I've managed to stumble on happiness anyway. Go figure, mom was right after all.
Subscribe to:
Posts (Atom)