What is your diagnosis story?

I am sure this post has been on here before, but wanted to share mine.  My son and I had a nasty flu around Thanksgiving 2008 that we were both getting over for a few weeks.  It seemed that we were both clear and then Colby spiked a fever on December 16, 2008 so I knew he probably had an ear infection (happened that way a few times before) so I knew I had to make an appointment.  Also, he had been peeing completely out of his night-time pull-up during the night, was extra thirsty, and hungry, but I totally thought it was just a growth spurt and that I just had some extra laundry to do that week.  Didn't make the appointment that day or the next because was preparing for our holiday party at work, but when my daycare lady called Thursday morning and said it looked like Colby had thrush, I called and got an appointment for that day. 

When I picked him up to go to the doctor appointment that day, the first thing I noticed was his eyes and how they were almost "bugging" out and he wanted to go home with me immediately.  He was very thirsty and whined for a drink all the way to the office.  He wasn't going to be seen by his regular physician but I didn't care at that point.  He got his drink and with the nurse while waiting for the doctor, Colby proceeded to throw up all over me and himself.  The doctor checked him out and said that he had an ear infection and wanted to do a blood sugar test.  When he came back in with the results he said he had some bad news.  Colby's sugar was 486 and he needed to go to the emergency room at children's hospital, he might be diabetic.  He stressed to not go to urgent care, but to the er.

The doctor's office did not even had ready directions to the hospital and I was starting to lose it while writing them down.  The finally asked if I wanted her to write them and then someone else came in with print directions.  Thank goodness because at that point I could not remember for the life of me how to get there.  So we drove safely, crying, on the phone to my sister to say I probably wouldn't be in to work the next day, Colby crying for a drink then falling asleep.  About an hour drive and we were there...I drove right in front of ER jumped out and asked about parking.  Thankfully they had valet.

Did not have to wait too long in the ER waiting room.  Colby screaming and carrying on about being thirty the whole time.  People staring.  Got triaged, then admitted.  They started fluids first, insulin and sugars next.  He had an IV on each arm and slept most of the time.  Everybody was very nice.  Any time Colby woke up all I heard was..."I thirsty mommy."  He was being treated as a diabetic though and that threw me.

Moved to a room, told would be in for 3-4 days.  My goodness!  Thankful my sister came that night to give me some time alone outside.  The next day was the 99.999999999 percent chance that it was type 1 diabetes and that he had been suffering from diabetic ketoacidosis.  I liked that the doctor said that nothing anyone did or didn't do made Colby this way.  I liked that they were going to teach us everything they could.  I did not look forward to testing and injections.

What a crazy ride it has been and only a couple weeks later things seem better and easier.  Doesn't seem like it is even real sometimes.  Anyways, was wondering if anyone experienced the same...

I cry when I read this, and as write. Our story begins in the summer before he was diagnosed. It was June or July. My mother and grandparents have type two and I have a cousin that is type 1. So, my mom has always done periodic checks just to see. She called me that afternoon and said you should get Ethan checked. So i made an appointment and we went to the doctors. They did a urine test and said he is fine. He must of just drank pop or had a candy bar. They did not know much about type 1.  His sugar was something like 256. We in full confidence of our doctor went on with life. Then just a day before he turns five he is using the bathroom a lot and drinking a lot. Just thinking he is thirsty, it goes in it has to come out. So we go on and have his Birthday party and spend it at the Great wolf lodge in Traverse City. He is not his usual self. He is sooo thirsty, will not eat, and having to go potty all the time. I was upset, thinking he is playing games. We come home and again up many times to go potty and still having accidents in his bed, like four in one night. Then I told my husband E has to go to the doc. Something has to be wrong. I had to work so he took him. When he went to the doctors they looked at him funny. You want us to test him again? Yes! He said to them. They did not think that he looked sick enough and it would not be, But 1,000 Is our number! Yuppers, he was diabetic. My husband called me at work. I am a bartender. So bar full of people and I get this news. I was instantly sick to my stomach and full of tears. I could barely talk. I had my cook, who also could bar tend take over the bar and I left. I drove so fast that we met at the hospital for blood work at the same time. he was say 2 miles from there and I  about 15. I scooped him up and gave him the biggest hug and tried to hide the tears. I did not want him to be scared.The nurse at the hospital forced him down to give him his first shot in his tummy. He was frightened and that made for a long road ahead. they sent us home and that was scary. The next day to the Endo. I felt like omg, I gave him all that cake and he had a slushie. I did not know any better. We went to the store before we went to the Endo and bought all this sugar free stuff and tried to prepare E. Even though we had no idea what we were talking about. That part makes me giggle. They said he had no ketones and was shocked by that. We gave him alot of gaterade to drink whrn he was thirsty. They said the electrolites helped. The Endo staff was great. We cried so much that day and learned so much that day. We had to take a break and we walk to a micky d's for some air and reflection time. On the way back with tears in our eyes.. I said you know, It is going to be ok. Many people in this building are learning that they soon will lose their child. They will have things like lukemia and cancers. We have to manage his life, but we get to keep him. This building also holds the same place wher my older son has a different autoimmune disease. This his where they did his bone marrow aspiration and had to ask for consent to take a piece of his hip because it did not look good. I had about an hour of thinking that my baby would be taken from with this dreadful illness. But, god took care of and he is ok. But, I will not forget that feeling.  Thats when I knew, We will be ok.!  Sorry kind long! This is our story.

 

Here’s Kathy’s story - sorry it's so long!

 

On April 2nd of 2008 Kathy had an appointment with her Neurologist (she also has petit mal seizures).  She weighed 51 pounds at that time.  Everything goes fine for a bit after that.  On May 10th we were in the process of buying a new car.  As we were headed to the finance guy, she had to go to the bathroom.  The sales person had given us some water to drink (two water bottles) and she had already drunk almost her whole bottle by then.  So we go back to the finance guy after the bathroom and not 15 minutes later, she has to go again.  I noticed this, but wasn't really concerned.  I just figured her kidneys were working fine!

 

Fast-forward to the next week, she starts getting up 2 or 3 times a night to go to the bathroom.  And as soon as she’s done, she gets a drink of water too.  Then she tells me how in school she has to keep going to the bathroom in the middle of class.  A few times she almost didn’t make it to the bathroom, poor thing.  And in church on Sunday, she’s got to go twice during the service.

 

The weekend before Memorial Day, she wanted to go to McDonald’s for breakfast.  So we head out that Saturday morning.  She has pancakes, hash browns, and drank her whole orange juice before I could even start on mine.  Then she drinks half of mine before we even get home.  Not long after she says she feels icky…I told her to lie down and drink some water, it might help.  A little while later she still doesn’t feel good and ended up throwing up.  After that, she said she felt fine, so I figured it was just so much orange juice bothering her.  You know the acids and such. 

 

I took her to dance class that afternoon and noticed that she was really looking skinny – her leggings she was wearing were baggy on her.  Leggings should always be tight!  So when we get home I asked her to step on the scale – 46 pounds.  Not 6 weeks earlier she was 51 pounds!  10% weight loss in that short time can’t be right.  She’s also kind of listless and tired. 

 

Another thing I start to notice is her breath.  It smelled sweet – I can’t really describe it.  She would brush her teeth and not 30 minutes later, that breath is back.

 

So I head to Web-MD…yeah, I know, you’ll scare yourself silly on that site!  All four symptoms – thirst, frequent urination, weight loss, sweet breath – all pointed to one thing: Diabetes.

 

I talked to my husband and he didn’t know if we should take her in right away or what. I just thought we’d take her to her pediatrician on Monday or Tuesday, if they were closed on Memorial Day.  I know now that I should have taken her straight to the ER, but I didn’t know that at the time.  So I got her in first thing on Tuesday morning, May 28, 2008 - our "D-Day."

 

The doctor didn’t hesitate in her diagnosis, saying it was probably Diabetes.  They take a sample of her urine and she says it is positive for ketones, but they couldn’t get their glucose machine to work.  So she sent me to the lab for STAT blood work.

 

We got to the lab – which was just down the hall – and she was already ready to give another urine sample (only 15 minutes after the last one!) and they take her blood.  They told me about 2 hours I should have the results.

 

I went ahead and took her to school.  I head to work wondering, but knowing, what was probably going to happen.

 

I get the call at 12:30 from the doctor – her sugar was 704.  She has Type 1 diabetes and I need to take her to the ER right away, and that we’ll probably be in the hospital for 2-3 days.  I’m thinking to myself “Why would it take that long?”  Boy was I uneducated!

 

We get to the ER at 1 pm and hear from the doctors how it all is going to work.  Poor thing was so dehydrated that they could hardly get the IV to work.  Her blood was just sludge.  And it was then that I noticed how pale, listless and sad my little girl was.  I felt awful that I didn’t get her to the doctor sooner.  What could have happened had I waited longer bothers me more than anything else.

 

Daddy shows up in tears – poor guy is so sensitive.  He can’t hardly believe it either and is more the type to ask “Why her?  Why does she have to go through this?  It isn’t fair!”  I’m the one that took charge and said, “Okay, this is the way it is going to be.  How do we handle this?  Where do we go from here?”

 

We get a room and I stay with her for the next 5 days….5 days full of blood sugar checks, injections, IV changes, urine bottles, education, doctors, dieticians…I look back on it and feel it went so quickly.  Things changed so fast in a short time.  It was a whirlwind, really.

 

We got home and she was doing well, back to eating good, gaining weight.  In fact she was 51 pounds again by the time we got home from the hospital.  She takes her shots very well, she loves to check her blood sugar, and does it all like it’s nothing.  I’m so proud of her ability to adapt to this.  She has not once complained about any of it – I have never heard her say “I wish I didn’t have Diabetes” or “I don’t want to get my shot” or “I don’t want to check my sugar.”  I always say, if there was ever a kid that was built to handle this condition, it was my daughter.

 

Here we are 8 months later, learning more every day, realizing every day is different.  Once you think you’ve figured it out, it throws another curve-ball at you and you’re back to square one.  Life is like that I guess.  I only hope that she can continue her positive attitude towards this and grow with confidence and responsibility with it. 

Thank you for sharing your story, here is ours.  We noticed that our 3 year old son Connor was drinking and urinating a lot for about 2 days, the air was really dry and he has always one to get sinus infections so we thought that one was coming on.  Then I went out for a couple of hours and when I got home my husband told me that Connor had 2 accidents while I was gone which was not normal for him.  I immediately called the doctors office and spoke with a nurse who told me that it was probably behavior sense it was so close to Christmas, I told her that I thought it was more then behavior and suggested the sinus infection to her, she told me that we could bring him in if we want to but that it was probably nothing.  My husband took him in the next morning, they checked the sugar level in his urine and it was in the 500's they told him to pick me up and go directly to Children's.  When we got to Children's*not 20 minutes later) they tested his blood and he was immediately diagnosed with type 1.  We we were shocked, my husbands grandfather had type 2 and my father has type 2 but no type 1 other then my moms cousin on either side.  The doctors, dietitions, and nurses at Childrens were wonderful they started training us immediately so that we felt confident when we took him home.  We spent the night with him at Children's and brought him home on Christmas eve it was an immediate adjustment, we have tought him independence and now we would have to take some of that away from him, now we have to measure everything and count everything and we have to space his snacks out.  Its been over 2 weeks now and he is doing pretty well, he has tried to sneak snacks a couple of times when he does that I give him a cheese stick which usually makes him pretty happy.  I have noticed to that things have been more difficult for me emotionally I think its because my husband went back to work(he was on vacation when this happened)and Connor has started preschool again.  I have had a couple of people that don't know anything about type 1 try to tell me what I need to feed him and how I need to handle things, I am doing my best to tell myself that they have no clue what we are going through and that I just need to listen to the doctors, and people who are going through the same things which is why I am so happy that we found juvenation!  I'm orry this was a bit long but I wanted to share!

Mike and Virginia  

My daughter was five years old. It was two weeks before her 6th birthday. She is the youngest of six children and only girl. Our (literally OUR) princess.

Background info: I had no sugary product in my home. With five boys, caffeine and sugar was limited. LOL. So Carol Ann was basically challenged by her Easter basket.

The week after Easter she started wetting her bed and having difficulty making it to the bathroom. She seemed more tiered than usual. Her teacher called me up and asked me to come in for a parent-teacher conference. The topic was to get me to get my child to bed on time at night because she was sleeping in class. That day she had fallen asleep in the middle of a test, so the teacher, assuming I guess that I am a bad parent who lets her 5 year old child party all night, let her sleep and she missed the test. My Nurse Practitioner and mother roles battled fiercly within. There was no way my daughter could be diabetic, yet logically, red flags were going up.

My husband and I took her to the MD in the morning. They drew blood and my husband took my daughter out for lunch while I ran over to the University and gave a lecture. Right after my lecture was over, I got a frantic call from my husband who was desperately trying to get Carol Ann awake on the way to the hospital. Her fasting BG was 251 that morning but by the time we got her to the hospital, it was 891. She had electrolyte imbalances (Potassium) so she was having cardiac arrythmias. They put her on all kinds of IV drips and I watched her flaccid body slowly regain life and her cheeks turn rosy and pink. My husband had to get home for the boys to get off their buses. My oldest son was at work. (He was 17 at the time.)

My son had the funniest high school job. He was a mascot for a semi-pro baseball team, so after the game that night he came straight to the hospital to see his sister. This 6 foot 3 inch, muscular and strong young man picked his little sister's fatigued body up through all of the tubes, wires and monitors and held her close and began to sob uncontrollably. I rubbed his back as his sister smiled at him and said she was ok. Pointing to her monitor she said, "See, I got a 100 (her pulse rate), so I'm not going to die!" I will never forget this picture.

Unfortunately, Carol Ann developed a fear of death on that day. She has required one ER visit and one hospitalization since that day and it is very difficult for me to relieve that fear when she gets sick. As she gets older, I will be able to work with her on this.

I have had such a tough time with all of this emotionally. I'm the Mom that has to take care of everyone else and I am a Nurse Practitioner who is supposed to "know everything". As Mom, if I cry, I console myself and noone is supposed to see. Being a Nurse Practitioner is both a curse and a blessing. I know too much sometimes and it is frightening. "This is my daughter I'm talking about!" However, I have more resources available to me and am up on all of the newest research. (i'm actually a participating provider in TrialNet) I started a Type I support group where I live to try to make friends so that I can be the Mom. It's slow in starting but I have high hopes.

In May of 2000, our son was 8 years old and just a little over a month before his 9th birthday when he was diagnosed.  However, his story begins almost a year before that.  At a previous checkup early that year, I had talked to his pediatrician about Nathan having to go to the bathroom so much.  Whenever we were out, Nathan would always have to go to the bathroom and more than once.  It was kind of a joke, if someone needed to know where the restroom was just ask Nathan or me because we would know since he has to go all the time.  I asked the doctor about this and he just chalked it up to him have a small bladder as he had stopped wetting the bed years before and was not at that point.  I was concerned that it was the beginning of diabetes (I had seen an article in the Readers Digest on Type 1 and have a close family member who almost lost her grandson over the him not being diagnosed soon enough) but his doctor reassured me that he was fine.

That May I had noticed that the jeans I had literally just bought Nathan two weeks before were now too big and he had begun wetting his bed again even after he had gotten up in the middle of the night to go to the restroom.  At the time I was on the Atkins diet and had ketone strips in the house and decided to check his ketones myself.  They were a deep purple.  I called my pharmacist and asked him some questions.  He said to wait a bit and recheck him again and see what the numbers were and if the strips still showed high numbers then to call his doctor and get an appointment made.  I left him with a trusted friend of ours that night while we went on our date (fretting the whole time) she called me in the middle of the movie after checking his ketones again to let me know it still was the deep purple.

The next morning I called our pediatricians office telling them what I suspected and that I wanted him to be seen or I was going to take him to the Cooks Childrens Hospital.  They got us in that morning and checked his blood work twice and told us to go straight to Endo Clinic at Cooks Childrens Hospital and that they would be expecting us.  I called my husband who was at work and told him what was going on and that what we suspected was true, our son has Type 1 diabetes.  He immediately left work to meet us at the hospital.  I remember the whirlwind of emotions that we experienced that day and how literally life as we knew it was changed forever. We were very fortunate as Nathan did not have to stay in the hospital.  We were in outpatient at the Endo Clinic for a week.  I have read so many stories and feel very blessed that we caught it early on and did not have to endure what so many children and their families do when they are first diagnosed.  In June right around his birthday, he was diagnosed with hypothyroidism (which runs in my husbands side of the family).  It has been a long road since then and he has never complained. 

Emotionally I have struggled with all of this knowing his life is different and fragile, but I take each day as it comes and we do our best to educate him and his siblings so that he may have the best life possible now and when he is older as so much of what they do today affects their life in years to come.  However, one of the best sources of information that we received that first week was to send him to camp.  There were two in our area, a day camp and then one where the children stayed for three weeks.  That first summer he did not go as I could not bring myself to leave him with a babysitter much less three weeks with strangers.  Finally that next summer his doctor convinced me to let him go - that was one of the best things we could have ever done.  They have taught him so many things - to do his own shots, that he is not the only child with this disease and can do whatever he sets his mind to do (which we have always taught our children, just is nice to have someone else reiterate), and so much more.  http://www.campsweeney.org/ I highly recommend finding a camp, a support group and getting involved with JDRF - it is so much easier to cope with when you know you are not alone.

I know I have posted our story and I have been reading all of your. Each and everyone with a tear shed and a prayer sent. It helps to know I am not the only one who had cried or sometimes still do. But, The reason for this post is.... Does anyone else see the similarities? usually around a birthday....And docs reasuring us we are ok when we are not? Huh? Makes one wonder about the birthday thing? It has taught me to be persistant with my doctors also. God bless our children!

Yes, thank you to all for sharing and please continue to share.  Tears are good to shed...such a great release through all the pain and suffering.

This is pretty cool, though. I've never been on the "supported" end of it. It is nice to share with everyone! Do any other parents ever feel so overwhelmed by their caregiving role and "community education" role? Constantly managing, worrying over and teaching others, I lose sight of myself completely. Each story I have read feels like "my own". What do you all do to take care of your own needs? And what exactly are those needs? Just to be acknowledged? heard?

My heart goes out to you parents with such young children...I feel almost 'lucky' for our story...In March of 2006,our 16 year old son, Jacob, was diagnosed. Jacob is an athlete and it was basketball season, so he was busy with practice and workouts. He had the flu one weekend and laid on the couch miserable, but did get better.  One evening he was in the kitchen and upon looking at his butt, which was a pretty nice one...very athletic:), I noticed it just wasn't ...there! and asked him what happened to his butt? We laughed and chalked it up to heavy workouts. Then a couple days later at the dinner table, he was complaining about how much he had had to go to the bathroom that day and left the table to go again. His dad, an RN, said that that wasn't normal and found some ketosticks he happened to have (he has always been a bit of a hypochondriac and had various nurse supplies around:) THey tested his urine and it was just black...darker than any register on the ketostick bottle. So they raced over to my father-in-law's who has type 2, to test Jake's blood and called me in a panic that they were headed to the ER..he was 400 something.  So Jake spent the night, we went in the next day with the educator and dietition and came home with a new lifestyle.  Sitting with the educator, I could not stop the silent tears dripping one by one down my cheeks, but not wanting my sweet son to see. When we got home, the only thing Jake said and has said since is, 'THis sucks, Mom". He easily and willingly learned his care and started memorizing the carb chart. I get almost sick when I think of what was actually happening to his body with that flu, a virus which was responsible for causing his T1, but I know we could have done nothing at all to prevent it.

Then, the following week he started driver's ed. class...three hours per class. This first class, the teacher always shows a movie about organ donation to encourage new drivers to have it on their new licenses. Well, guess who needed an organ donation? Yep, a diabetic. This guy's horror story came out in this movie and scared Jacob almost out of his mind (because he still had to sit there for another 2 1/2 hours before we could pick him up). When we did pick him up, the look in his eyes was just heart-wrenching...half wild with fear, half hurt. He thought we were hiding information from him and that all diabetics ended up like the guy in the movie. We were finally able to convince him that that guy in the movie was a worst case...that he wasn't one who took care of himself and didn't do what he was supposed to do as a diabetic.  Finally, after lots of tears on all of our parts,  he was convinced.

 

Jacob takes extremely good care of himself and is at Ohio University now as a freshman. He is on Novolin and Novalog which seem to be a perfect fit for him. I would like him to go on the pump which could allow him a little more freedom at college, but he says,"Hey, Mom, if it's not broke, why fix it?" I know Jake was chosen especially to have to deal with T1 for a reason. He is an excellent ambassador for the disease (he is a communications major)and we all feel that he will be a better person because of it and that he was lead down this path, rather than one he may have been on before, for a reason..to bless people through this.

Thanks for reading and sharing. God bless all of our 'babies' and their care givers!

I have been meaning to contact those that were diagnosed over Christmas - your boys are the same age as when my son Lucas was diagnosed.  It was just a few days after his 3rd birthday(he is almost 6 now).  Our family was in the midst of a move from NYC to Baltimore.  My husband had started work in Baltimore and commuted home (NYC) on the weekends.  I was finishing up some projects (I am an architect) as well as letting our oldest son finish Kindergarten.  Myself and the boys (I have 3) had come down with the flu...a week later, Lucas was still "not quite right" while the rest of us had recovered.  He was drinking an enormous amount and although he had been pretty much potty trained, he started having a lot accidents.  I googled "thirsty child urinates" and of course got so many things for diabetes.  I flat out did not believe it and thought I would ask the dr. at his 3 yr old checkup in 2 weeks.  Well of course that night I had it in the back of my mind and I emailed my husband about it.  He said to take him to the dr. - this is easy for him to say, I had 3 little boys alone in NYC.   Luckily, I called and said I did not need an appointment, I would just walk in and have him pee in a cup and walk out.  Which I did.  I had walked 3 blocks towards home (Lucas so exhausted was walking too as his baby brother was in the stroller) when they called on my cell and told me to get to NY Presbyterian immediately.  When we got there he was so high the meter could not read his numbers.  Of course my husband caught the first train home and we spent the better part of a week in the hospital.  They said if I had waited the 2 weeks, he might have gone into a coma - thank God for google.

Lucas is doing really great - he has such a warm heart and is always thinking of others.  He is in Kindergarten this year and is on a pump. 

rmeadowsaprn...when you say needs, do you mean as the parent of a type one or as an individual?  :)

And yes, I feel so overwhelmed, but I just do it (probably some bottling up going on too) because it means my little guy gets to have some normalcy again.  I think throwing the toddler  aspect in there too is just so much more difficult, but maybe I am just whining like a little toddler.  I have lost sight of myself since I had my son due to many factors, but I feel like my small sacrifices will benefit him in the long run.  Before diagnosis I was just starting to think of me again because you cannot take care of others if you do not take care of yourself and I was at my limit.  Just a little harder now, but I think we will acheive a good balance for the both of us soon.

He said to me this morning that he wanted to be a big brother.  One little glitch, mommy needs to get herself together first, find a lovely man, get married (again), and then see what happens.  It was so cute though, I could not help but say, "Ok baby."

Docs reassured me for three years that the lump in my breast was nothing because I was just too young.  I fought from 20-23 years of age to get it addressed and finally got a doc that was concerned because it had turned from a liquidy substance to a harder substance and was growing.  It turned out the be nothing (thank goodness) and they just removed the whole thing but it taught me to be an advocate for knowing one own's body and then knowing your own children. 

The similarities are there for sure, kind of amazing and glad to know we are not alone in this.   

Our story is a little different as our daughter wasn't diagnosed until right before her 20th birthday.

In February of 2004, Megan was away at college (thankfully not far).   She calls me and says "Jessica just checked my blood and I'm at 400 something."   I asked her what the heck she was talking about and who was this person?  She tells me she's a friend of her's, her father has diabetes and that she noticed Meg was losing weight and drinking a lot of water.  At that time, I knew absolutely nothing about diabetes-zilch, zip, nada.  I tell Meg to call our family doctor.  She does and calls me back and says "He said he needs to see me but I told him I won't be able to make it there before he closes so he told me he needed to see me first thing in the morning."  I tell her okay, I'll meet her at the doctor's office.  Not 5 minutes later she's back on the phone and says "Dr. R. called back and says I need to get to the ER."  Now, it's about 2:30 p.m.  She's in Chicago.  We're thinking it'll take about an hour to get to her, by then it'll be rush hour so it'll take over 3 hours to get to the ER (didn't know at the time that even if you're in an HMO if your doctor tells you to go to the ER, you go the nearest one). Soooo, I say "Well, do you feel well enough to take the train?" because it will only take her a half hour to get to the train station and us about 45 min. to get there.  I know, you're all cringing but remember, no clue about numbers, DKA, etc.  She says yes, I call her father and we head out to meet her.  Get her to the ER (which is normally wall-to-wall people) and there's one other person in the waiting room.  They take her right back, hubby goes to register and I settle in for what I know is going to be a long wait.  Not 10 min. later the nurse comes in and says to me "I'm going to take you back to her.  She's critical."  Now I'm starting to panic.  "Critical?"  What?!!  Her sugars were so high they weren't registering except as "critical".  Again, I still didn't have a clue exactly how bad things were.  So we go back, she's up, she's talking, making sense what's the problem?  Doctor comes in, looks at her, looks at the chart.  Looks at her.  Looks at the chart.  Says "You're Megan?" "Yes"  "Well, you should either be dead or in a coma.  You certainly shouldn't be sitting up and talking to us."   turns out her numbers were over 800.  As you all know, the next few days were a crash course in handling Type 1.  I was petrified when she went back to school.  It was a rough couple of years, I can tell you.

After about a year, Meg decided she wanted to move back home and I'm really glad that she did.  Since then, she has been diagnosed as a "Fragile (use to be referred to as "brittle"), insulin resistant type 1 diabetic".  She always was an overachiever.  Over the past years she's been in the ICU just about every 3 months.   In July of 2007 she ended up on a ventilator and receiving the "Anointing of the sick" (use to be called "Last Rites" in the Catholic Church)-turns out her meter wasn't working (always check those darn meters!).   We still have ups and downs but have learned to roll with the punches.

Even with all we've been through, you moms and dads of the little ones are my heroes.  Unless Meg's not doing well, I'm not the one that has to deal with schools, other parents, figuring out dosages, birthday parties, school treats, etc.  My hat's off to you.

 

Well, to start off, I guess, being an avid reader is what really saved my daughter's life. I used to read "The Baby Sitters Club" book series. I don't know how many of you are familiar with that, but Ann M Martin included a girl, Stacy, who was a diabetic, in the series.  "Stacy" did a book once that explained about her symptoms and what happened. Now, remember, I read those books back when I was in elementary school, some 20 years ago!

I owe Ann M Martin a million thanks for helping me recognize the symptoms as soon as I did.

This past summer, Hannah started displaying odd symptoms. The first was sleepwalking. EVERY night, sometimes 2 or 3 times a night. Then she started drinking tons of water, 3 or 4 gatoraide sized bottles of water each evening before bed, plus about 10 during the day, while at camp/daycare. Plus, she was eating me out of house and home, I could not keep her satisfied.I was thinking "it's summer, she is running around, it's hot, and she's dehydrated, and burning energy". Then she had an "accident" at a local street festival. She has never done that. She potty trained in about 3 days when she was 19 months old. We spent a week up in Mackinaw City/Island, and she was moody, lethargic, and really not herself. That was the last week of July.

 

I mentioned this to my mom, who is a type 2, and she agreed with me that it was probably all due to how busy she has been all summer, camping, 2 different summer sleepover camps, and running around.

On 8/22/08 Hannah was going to go up to my mom and dad's house to play for the day, as they live on Paw Paw lake, and she wanted to go swimming, etc. I asked my mom the night before if she could please check her blood sugar for me, just out of curiosity, and told her about what I remembered from the BSC books.

I got a phone call from my mom at 11:32 AM saying that she had checked Hannah's sugar, and it was at 397, she had called the doctor, and had an appt for 12:15. I remember shaking, and my heart started pounding. I told my boss I was leaving, and ran out of work. Dr. Barrett checked her urine, said that there was sugar in it, and told me to take her to the lab to get tested, she was going to do a STAT, and to call her in one hour. When I called her at 1:30 that afternoon, she told me Hannah's sugar was at 471, and that they have a bed waiting for her at Bronson Methodist Hospital (Kalamazoo MI) and I need to be there NOW. I threw a bunch of stuff in a bag, called my mom, asked her to meet us and drive us to Kzoo, since I was in no shape to drive.

The staff at Bronson was wonderful. I still keep Jen (her nurse and educator) in my prayers, as she gave me a TON of strength that weekend.

The worst part for me, however, was that Hannah hadn't eaten all day, since 9 am, and they didn't want her to eat till they had her hooked up to an IV and other tests done. She was really dehydrated, but thankfully, no keytones. I ordered her meal, and they brought it into her room at 9 pm, while they were trying to insert the IV. They still had not checked her sugar for the meal, and they told her the IV had to come first. That was the only time she cried. She was hungry, scared, and wanted nothing to do with the IV, she only wanted her food. I am not a violent person, but I was ready to puch out every person in that room, all I wanted was to get some insulin in her so she could eat, they could do the IV in 10 minutes.

I left the room as soon as it was done, and she was eating, and made it about halfway down the hall before I lost it. My Dad and Jen (the nurse) followed me, and I was grateful for their support. Believe it or not, that is the only time I have allowed myself to cry. I just feel that I need to stay strong, as Hannah's dad (my ex) isn't much support, so I need to be 100% strong for her.

 

I just wish that there was a support group around my area that I could turn to, to vent sometimes. Hopefully, one will be started soon! I am working on it.

 

Melanie-

It is so tough to be strong for everyone while being torn apart on the inside. I know exactly how you feel. And not only do you want to be strong for your child, but it's expected of you simply because of your role as Mom. Uuugh! I have yet to find a venue or someone that allows me to to be weak, even if for only a minute! I started a Type 1 support group in my area and trying to get people together can be very difficult because even though there are so many Type 1s, they are scattered and you have to really route them out. Hang in there and if you ever feel like venting, feel free to email me and do so! You're totally allowed to feel whatever way you want to and still be a great Mom and caregiver.

Rita

Rita,

 

Thank you for the reply. I came accross this blog spot yesterday during my searches online, and let me tell you, I feel so much better knowing there are other parents out there who feel like I do.

 

Just as an update, I found out yesterday that there is a support group starting in my area next month. A co-worker has a friend who's daughter was diagnosed 9 days after my daughter was, and Francine is starting a group, but, unfortunatly, the first meeting is on a night I have tickets for myself and Hannah to go see Riverdance (can't wait, I love that show).

 

Thank you for the invite to email, don't be suprised if you hear from me :o)

 

Have a WONDERFUL weekend!

I read these stories and get so emotional - you are all so amazing.  I had to run something in to our diabetic clinic the other day and I noticed a mom and dad with all the familiar literature, equipment etc. in front of them and the dazed, overwhelmed looks on their faces that I remember so well.  The nurse introduced  me as a mom of a child with diabetes and asked them if they had any questions for me.  They asked a few and then the mom said, Do you ever stop feeling overwhelmed?  I just started to cry with her and felt like such a dolt because the nurse was probably thinking I could say yes and offer strength to this mom.  But no . . . not always sometimes I'm strong and sometimes I'm still pretty emotional.  It's been 2 and a half years since my daughter's dx.  My daughter Mackenzie is much stronger than I am.

 

Her diagnosis was 2 weeks before her 11th birthday.  Her and I and another mom and daughter were on a 4 hour road trip to their hockey tournament.  She was feeling fine but I noticed over the course of the drive that she was drinking a lot.  Her water, my water, a pop, another water - stops to pee at gas stations and one on the side of the road.  That night she got up to pee twice in the night which was unusual.  The next morning she played hockey and I watched as her energy started out good and then it seemed to drop dramatically - she also waved her water bottle at me because she needed it filled up.  I should add here that my husband has type 1 (since he was 13 - we were told our kids had a 2% chance more than any other kids to develop diabetes - I think now that statistic is higher) Anyway, I always have the symptoms in the back of my mind and when she got off the ice and said her legs were really achy I knew.  Whenever her dad has a high blood sugar his first symptom is aching legs.  I took her to a pharmacy and asked to use their glucometer and it just said HI.  At the hospital it said critically high - we live in Canada and measure bg differently, she was 33 but with no ketones.

So we went to the hospital and I checked her in and between sobs told them I thought my daughter had diabetes. Mackenzie cried because she wondered if she could play hockey again - that broke my heart.   Two days at this hospital and then they let us drive home to spend another week at our local hospital.  

She was diagnosed 3 days before halloween so she pigged out on sugar free candy - and the next day payed the price!!  The day after when we were meeting with the dietician for our education piece she taught us about sugar alcohols and how they are hard on little stomachs - we looked at each other and laughed because we learned that one the hard way and a day too late!

I remember wondering if I would ever lose the knot in my stomach, the anxiety. It took awhile but mostly now it's gone.  It comes back on occasion but I know we have the tools and knowledge to deal with glitches.  I try and remind myself that in the big scheme of things there are families dealing with worse diseases with possibly tragic results and I am thankful for the advancements in research and daily care and like all parents I dream of a cure.  My husband was told as a child there would be a cure in his lifetime and he needed to take care of himself to take advantage of that cure - now I hope the same for my daughter too.

PS: She's still playing hockey  :)

This is Cara's story:

On February 13th 2009 we realized that diabetes was our new reality.  After one month and a half of sickness, a few visits to the doctors office, a course of antibiotics and 4 hours in an E.R. waiting room our 3 year old daughter was diagnosed with type one diabetes.

The first thing people say to me when they find out about Cara and diabetes is how did you know that she had diabetes?  The answer that I give is that I did not know.  It took about a month and a half to figure out that there was something really wrong.  Maybe it was because she would get sick with the flu (so we thought) and then in four days or so she would begin to get better.   Just as she was starting to seem better she would get the flu again.  Every time that she would get sick a few of our other kids would seem to have the same thing.  Cara started taking a little longer to get better and soon she was not getting any better and having very different symptoms then the other  children.  The weekend before she was diagnosed she formed a yeast infection.  Which later I found out it was caused from all the sugar in her urine.  I was socked and a little embarrassed, thinking that it was something that I had done, not bathed her well or not made sure she wiped herself properly after going to the bathroom.  I'm not sure why mothers always seem to blame themselves.  A few days after the yeast infection formed she began peeing A LOT.  She was always in the bathroom about 2x's more then normal.  So I thought a yest infection + heavy urination = bladder infection.  Then soon after she was extremely thirsty, always asking for anything to drink  juice, milk, water and Cara never asked for water she would actually complain about having to drink water normally.  She also had lost a tremendous amount of weight in a very short period of time and that is what scared us the most, she was 26 lbs and when she was 18 months she was 27 lbs.  We made another doctors appointment for Cara.  The doctor ordered blood work, like it was no big deal and sent us home.  We had lunch and Cara went down for a nap because she was so tired.  When she woke up from her nap she vomited for the third time in about two months.  I thought to myself there is no way that she has the flu three times in about 2 months.  This is when I brought her into the E.R.  I was actually scared they were going to think I was crazy for bring my daughter to the emergency room for the flu.  I knew that something else was wrong.  As I was getting ready to leave for the E.R., my husband said "it my be diabetes".  Four hours later the doctor told me the same thing Cara had type one diabetes.  Her blood sugar level was 53.2mmol or 957.6 mg/dl when she was admitted to the pediatric floor.

Just a side note: I am Canadian and our blood sugar numbers are measured in mmol's not mg/dl like the USA.  So the blood sugar numbers that I give must be X by 18 for example Cara's blood sugar when she was admitted into the hospital was 53.2 mmol which is 957.6 mg/dl

Nicole, it's so scarey what you had to go through.  That's just one of the things (although it's a major one) that I really detest about this disease/condition.   It masks itself as so many common, everyday illnesses or the "signs" can usually be attributed to something else so that the majority of us never even think about diabetes. 

I'm so glad she was diagnosed in time!