Sunday, November 25, 2012

Possible answers....& a date!!!

Well Friday was definitely an interesting day!! I'll start with the GI appointment that we had since it was the one that I was really worried about.  Now let me start my saying that Monkey's GI is wonderful!!  She is very friendly and is so loving towards our girl that is just puts her right at ease. Se was able to give us some answers to the ongoing tummy ache & frequent bouts of vomiting.  She thinks that we are dealing with cyclical migraines!!  She has given us a prescription to try for 6 weeks. If we see no more vomiting & decreased tummy ache then we should have our answer.  & if that's it then we should be able to wean her off the meds & just use them for her high stress times & when travelling since she really does not travel well at all. BUT....if we don't see an improvement she is going to schedule an endoscopy to rule out IBS and to make sure that her celiac is not causing the problems regardless of the blood work. Seeing as how I get migraines and have for a really long time I'm guessing this is a likely diagnosis.

Now onto to exciting part of our Stollery visit......the Endo was super happy with everything we have been doing. Monkey's A1C was 7.9!!!!  Down from 8.5 last visit!!!!!  So very excited!!!!  Can you tell?! LOL. I asked about a sliding scale for her carbs and was given one for supper.  We can use 1:15 & just watch to make sure it doesn't bottom her out. He gave me full permission to play with it as needed to get those numbers right but let her have to freedom to eat what she wants. I can only use this scale though for supper since she is in Humulin N to cover her lunch time at school. I am also allowed to play with it a bit for breakfast but only on the weekends for now.  If anyone has any suggestions I love to hear 'em!

And the other big news is if course Insulin pump training!!  We were given a date of Feb 11-13 for our pump class!!  I'm not sure I've seen Monkey that excited in a really long time!  I know it is a ways off yet but it is something to look forward to & I'm sure the time will fly by especially with Christmas right around the corner!!

So that's all my news for now!!

Brandy

Friday, November 23, 2012

2 for the price of 1?

Things seemed to have settled down a bit here D wise. I know I probably just jinxed myself but oh well!!  Monkey has had some pretty decent numbers this past week. A couple lows & nothing super high (lots of 6's & 7's!!) which I'm glad about because tomorrow is parent report card day!  That's right, we're off to see the Endo!!   I'm actually really looking forward to this appointment. It has been 9 1/2 months since she was dx with T1 and we are tired of the strict regime that injections brings with it. Hopefully tomorrow we will get a date for our pump class!!  We have already chosen a pump, spoken with the pump company & have started the process to get her pump covered under insurance. Alberta Health doesn't cover any portion of an insulin pump right now. I think we've one of the few provinces left that won't cover a pump, at least partially so I'm praying between the 2 insurance companies we are good to go!!

Now for the 2nd part of my 2 for 1 title.......For the last few months Monkey has had a constant tummy ache. She wakes up with it. She falls asleep with it and it seems to be with her all the time. She doesn't seem to have an appetite anymore most days. She has started vomiting quite a bit again and she just generally feels unwell. Now her family doctor is AMAZING!!!!  If we go in with a problem he listens to us. He will take the time to try & figure things out. The tummy thing really started towards the end of June. She had a very nasty bout of gastro that landed her in emerg because we were worried about appendicitis. That turned out ok but she never really got over the tummy ache thing. Since then she has had gastro at least 7 or 8 times. She has lost a bit of weight (not a lot because she HAS to eat x number of carbs......I really wish we had a sliding scale for her carbs......but I digress). She has started getting circles under her eye again as she is not sleeping well at all.  Her family doc has ran all sorts of tests. She has had tons of bloodwork done & she also had an abdominal ultrasound done at the beginning of November. (Not so much fun for her since she couldn't eat/drink anything prior). Everything has come back clean. We've checked her celiac panels to see if she is getting cross contamination somewhere but the tests don't support that. So her doc sent things up the ladder to her GI doc. The Stollery phoned me today to say that the GI wanted to see us next Wednesday. When I told them that we were going to be at the Endo clinic tomorrow after they did everything they could to make it so we didn't have to go back next week. It's a 3 hour drive one way for us & that's if the roads are good. No guarantee of that this time of year!!  The booking receptionist called me back about 1/2 hour later & informed me that she personally went over to the GI's office to see if something could be done. Apparently the doc is not in clinic tomorrow but agreed to come in to see us after our Endo appt so we don't have to come back in!!!!  So happy!!!!  Especially since hubby is just finishing up holidays this week & wouldn't have been able to come with us next Wednesday.  Definitely God's hand at play in that one!!

So that's our 2 for 1!  Endo at 1 & GI at 3. Hopefully good news from the Endo & maybe some answers from the GI :-)

Hope all my DOC family/friends are well & Happy Thanksgiving to those of you who celebrate it in November!!

Sunday, November 18, 2012

The life of Crazy with D

Things have been a little (well maybe alot!) crazy around here this week.  I started a new Teacher Assistant position as my girl's school and D has been kicking our butt!!  Prior to this position I was at the elementary school across town.  Definitely more stressful when dealing with crazy a$$ numbers like we have been for the last couple of weeks.  Now keep in mind that we are in Canada so our BG's are measured in mmol/L so just multiply by 18 to get mg/dL.  Over the last 3 weeks we have had 4 sick days, 1 of which landed us in the ER on an IV drip.  Persistent high sugars over a couple of days that I was repeatedly correcting.....at least as much as possible on injections.  Monkey is currently on Humalog and Humilin N injections.  At supper that night she was 23.2 (417)  so I corrected.....again....and 3 bites into dinner I was hit with "Mama, my belly doesn't feel very good" and sure enough shortly there after I heard the unwanted "Bleagh!".  Now my girl has 3 extra units of insulin on board and NO carbs to cover it.  As the evening went on we tried juice, freezies & glucose tabs but nothing we could do would bring her sugar up.  I called the peds endo on call and he told me to take her in to the hospital. When we got there her sugar was 2.6 (46) :-(  We live in a small town so there usually isn't a huge wait at Emerg and they are REALLY good about getting peds patients seen quickly.  They had her in a room within 5 minutes and had an IV started about 10 minutes after that.  she was on a Dex drip for a few hours and the nausea seemed to have settled.  They let us go home about midnight and she seemed ok.  Of course I was up every 45 minutes checking her sugar levels but the nap I had the next afternoon really helped!  It took 2 days for her to finally start feeling 100% again.  What a long 2 days they were!

We actually had a few really good days as far as numbers go & I know that I should NEVER say that out loud.....it's like an automatic jinx!!  Apparently D hates it when we get comfortable.  Yesterday she woke up high again, 15.5 so I gave a small correction.  Her BG's hung out in the low 4's & 5's all day and now today we have been chasing lows ALL DAMN DAY!!!  She was 3.3 when she woke up, 3.8 at morning snack, 3.5 at lunch and it goes on.  I'm not sure what to expect when we have dinner tonight.  I am definitely looking forward to being on a pump.  The way her insulin is set right now is very hard to regulate.  She is on fixed doses and a fixed # of carbs at certain times.  & if she isn't hungry that's too bad she still needs to eat.  It's a good thing she has a good appetite most of the time!!

This week coming up is going to be an interesting one.  We have to head into Edmonton to see the Endo & her entire team at the Stollery.  It looks like it's going to be about a 3 1/2 hour appointment!!  Hoping for a good A1C and a happy Doc!!

Monkey's Diagnosis Stories

Yes you read the title right!  Stories is not a typo.  She has 2 of them.  

Our daughter was sick from about 9 months on. She suffered from horrible GI symptoms and vomited so frequently over the years that she damaged her esophageal sphincter and now takes medication for reflux. (A good week was only 3-4 times). I had her tested multiple times for Celiac over the years but the blood work always came back negative.  My husband is Celiac so I was sure this is what it was but when the bloodwork kept coming back fine I started to second guess my instincts. We went to our local ER countless times only to be told I was being an over excited mom & that my monkey only had the stomach flu.  Finally in kindergarten her symptoms couldn't be ignored anymore.  I could time how long it would be after she ate before she would be running to the bathroom with diarrhea & screaming for a bucket so she could vomit at the same time. They repeated the celiac panel again & finally we got a positive test result. In Canada you need a protein count of 7 to be diagnosed, hers was well over 21,000. I was devasted but knew we could do it. It took over 2 months before they were able to do her endoscopy & biopsy. When her Peds GI came into see us in recovery after the procedure she informed us that she had never seen so much damage in such a little person. Gluten free started & what a difference it made!!!!  All of a sudden my little girl was growing & thriving. She went from the 15th percentile on the growth charts to the 50th in 3 months!!  It was fantastic!  She finally was able to sleep through the night without having nightmares.

Then grade 3 happened.  We had noticed that Monkey was having trouble focusing in school & just didn't seem herself. At the beginning of December my husband slipped & broke his ankle & ended up having emergency surgery to have a plate & pins put in. He was taken by ambulance to the nearest major centre 3 hours away. We followed & stayed with his parents while he was in the hospital. Monkey wet the bed 2ce in 4 days but we all figured it was just stress. After we came home things didn't get much better. She was hard to get out of bed for school, she started sleeping in on the weekends (totally out of character). In January her & I flew to San Diego with friends for a work conference. While we were there she was really out of sorts. Her tummy hurt ALL the time. She vomitted a couple times and kept complaining that her legs were sore & she was too tired to walk. I figured she had been glutenized and left it at that. When we came home I noticed she was drinking quite a bit but figured it was just the difference in climate. (It's quite dry in the mountains where we live.) her skin was really dry & she was constipated. I thought that was odd since she had always fell on the other end of the spectrum. I encouraged her to drink more water at school.  I noticed her jeans were all getting too big in the waist but thought she was just getting taller again.  3 weeks after we came home from San Diego she went X-country skiing with her class.  She came home from school & wet her pants walking up the driveway from the bus. She laid herself down for a nap & turned down dinner. The next morning she got up, ate 1/2 piece of toast & went back to bed. She slept on & off all day & was running a fever. I just figured she had another bout of gastro. Sunday she was ok & she went to school Monday. I had to drive hubby into the city to see his orthopedic surgeon that day so monkey was staying at my mom's house. Gramma had to pick her up from school because she almost fainted on the playground during lunch recess. She napped & then seemed ok. That night while we were in the city I was talking with hubby's mom telling her all this & thinking to myself I needed to get her blood sugar checked just in case.  Wednesday morning she was an absolute BEAR to get going & even hubby commented that something was wrong. I spent all day trying to get her into the clinic to be seen but kept being told to bring her to walkin after school.  As soon as she got home I took her down. We waited about 45 min before being seen.  The resident we seen took a urine sample & weighed her. When I seen her weight but heart dropped. She had lost 6.5 lbs in 3 weeks!!  When he came back with her results he said there was glucose & ketones in her urine & that we had to go to emerg for more tests. I knew what it was as soon as he said ketones. We stopped at home to grab her dolly & tell hubby what was happening. When we got to emerg they were expecting us. They checked her BG & it just said HIGH.  That confirmed it. My baby has Type 1. When they did the lab work it confirmed a BG of 39.9 mmol/L (718). They told me that she was just starting to go into DKA. What followed after that was just a blur. We spent 6 days in Edmonton staying with the in laws getting training. It was all done through out patient at Stollery Children's since she wasn't considered critical. That was Feb 8 of this year.

Her last A1C was 8.4 and we are now starting the process of getting her on pump therapy. It will likely be Feb 2013 before she will be able to start.

Wednesday, November 14, 2012

Welcome to Diabetic Gluten Free Adventures!

Welcome to Diabetic Gluten Free Adventures!  


I'm not entirely sure what I'm doing so please go easy with me!!!

I  have been reading quite a few blogs written by parents of T1's or PWD in the last couple months.  Most of them I have read every single post from the beginning of the blog.  I must say that the posts have made me feel that I am very much NOT alone on this crazy journey!

This is somewhere that I am hoping I can share some laughter, share some tears, vent some frustration and get some "same-same" that all T1 parents crave!!

Our daughter was dx with T1 in Feb 8, 2012 at the age of 8.  I will post our Dx story when I get the emotional strength to do so!!  Anyways.....since her dx things have been exhaustingly crazy.  We have dealt with great teachers, not so great teachers and friends & family with varying degrees of interest/support.

Thanks to MeriWendy, Nicole & Denise for already making me feel welcome in the D-FB/blogging community.  I am looking forward to getting to know ReynaJoanne & countless others soon!!


Hopefully I'll get the hang of this "blogging" thing soon!!


Brandy