Newly diagnosed 2.5 year old in Hampton Roads, VA

First, I'm so glad to have found this place. I've been on the hunt for a few days trying to find some support. I don't know anyone with T1D other than acquaintances or sister/brother/BFF of friends who have the diagnosis.

Our diagnosis came as a major surprise. I'll admit, I'm still very angry over how it came about.

I suppose it started before Christmas when I developed a fever, chills, exhaustion....seemingly, the flu. I was down Christmas Eve all day and much of Christmas Day. My husband and Athena, my 2.5 year old, developed fevers on Christmas Day. My 5.5 year old daughter, Gia, followed suit the day after Christmas. We all battled what we believed to be the flu although I didn't even consider seeing a physician unless there were complications. My 2.5 year old still nurses and my daughters and I have a pretty clean diet (local food, organic, whole foods, etc.).

Athena's fever lasted 5 days. She complained of a headache and she started grinding her teeth during that time. On Saturday, she started complaining of her ear hurting. I put breast milk in it thinking it was a side effect of "the flu."

Sunday morning her fever had broken but she developed this deep, heavy, rapid breathing. She was tired and wanted to rest a lot (completely unlike my daughter, even when ill). She was drinking plenty of fluids and peeing almost normally although she did mention it hurt to pee. I considered UTI.

Our first visit to the ER happened Sunday night. Long story short, we were sent home with an ear infection diagnosis and prescription for Omnicef to cover "possible pneumonia" and "possible UTI." They DID ask for a clean catch, which she provided, and when we left triage, that cup of urine sat on the sink. I assumed it would be "sent away for labs" or some such medical jargon.

Monday was more of the same. Lethargy developed, the Kussmaul breathing (which I did not know was Kussmaul breathing), the drinking a lot and peeing a lot and grinding of the teeth continued. She had been wetting the bed every night despite my best efforts. For a kid who was fully potty trained by 14-15 months, this was shocking. I considered another ER trip, but my husband assured me she was just ill and would be well soon. She'd only had two doses of the abx, give it time.

Tuesday, New Years Day, was more of the same. By evening, I had myself convinced it was sepsis or some other awful diagnosis and called the On-Call nurse with our pediatrician's office. That nurse suggested we head back to the ER so I gathered up my baby yet again and took her out into the cold, dark, rainy night back to the Children's Hospital ER.

I saw two doctors during this trip. The first told me she was "certain it was just a very bad, cold..." I asked about the breathing and she told me my baby's body was "working very hard." I asked about UTI results, she told me there were no labs drawn. I asked if they would look at her chest, she didn't want to lift her shirt and disturb her, but she listened to her breathing and both ER trips, she was put on pulse ox with a beautiful 98-100 reading for the duration.

We were sent home to "give the Omnicef a few more days."

Wednesday was more sleeping, more lethargy, more drinking, no eating, no poop (hadn't pooped since December 26th/27th and hadn't eaten enough calories in days at this point), more grinding teeth, more complaints of headache, she stopped talking much, she stopped walking, she fell over when she tried to walk.

I made a "sick visit" appointment with her pediatrician for Thursday after I got off work in the early afternoon.

Here is when I start crying.

Athena wasn't rousing much at all that day. It was difficult to get her to stay awake for any length of time. She couldn't latch to nurse, she definitely wouldn't eat, she would request water and she would pee when I put her on the potty (supporting her entire frail body).

They weighed her. 27.2 pounds. My daughter was 34 pounds over the summer.

The pediatrician asked for a clean catch and we got it. They flu swabbed her.

Glucose 2,000+ and large ketones and flu positive for Influenza A. The doctor said "possible diabetes" and I nearly collapsed. People lose their legs from this! I thought. I didn't know much just a week ago.

They finger pricked her. 555. There was a lot of shuffling and rushing suddenly. I could hear my pediatrician's very stern voice on the phone with a doctor at CHKD (Children's Hospital we'd visited twice that week).

She came in and told us to get over there, we'd be admitted promptly. My daughter was very ill.

The waiting room was packed but they brought Athena right back. She was lifeless in my arms. She went from "having a really bad cold" to having about 15 doctors and nursing in her triage room listening, poking, prodding....Athena roused a little, enough to ask for water and cry and ask to pee. When I say "ask" I mean grunt and I knew what she needed. My daughter was chatty, she talked early and at 2.5 she knew words my 5.5 year old has yet to master.

Finally, a diagnosis. "She has Type 1 diabetes and she is in what is called diabetic ketoacidosis and she is very, very sick" they said.

I cannot quantify my rage at this point. I couldn't see anything. Everything blurred, the tears were streaming down my face, the coughing sobs I tried so hard to choke back were forcing their way from my chest.

I learned later that her metabolic screen showed a bicarbonate of less than 5, an almost non-existent potassium level and her blood was like maple syrup. She got various glucose readings in the ER all around 600. She was slipping into diabetic coma or had been combating it for hours at this point. She was mostly unconscious throughout the rest of Thursday, through the night in the PICU and into the morning.

Her labs corrected overnight which surprised the doctors and nurses and because the hospital was at capacity, they sent us to the floor Friday afternoon. Glucose checks with heel sticks (major mistake on the PICU's part) left bruising and cuts on her fingers. Her veins were no good and she was bruised from multiple attempts at lines. Insulin pump, IV fluids that rotated out glucose (to prevent edema), potassium (because her levels were so low) and what not were on tap. Her glucose plummeted faster than they liked and she dipped below 80 a few times. I still wonder the lasting effects from that.

Despite a low of 44 and maintaining pretty obnoxious highs of 250-350 the entire time we were in the hospital (two whole days), they discharged us Saturday morning. I had been given a stack of information, trained on how the administer the insulin, the when/where/hows of everything. We were trained on her diet and how things don't really have to change, except that everything is changed.

We've been home for 4 days now. It's like bringing home a newborn, isn't it? Except when Athena was a newborn, she slept with me and I nursed her and I never had to really wake up in the middle of the night. Now my iPhone blares at 1am and 5am to check blood glucose. And again throughout the day "check glucose" or "prepare lunch" or "Athena dinner prep" so we can stay on a schedule.

Her glucose is nowhere near leveling out. I've gotten readings of well over 400 but thankfully nothing below 120 yet. I'm thankful for that. The lows scare the pants off of me.



So here we are. Our "new normal" and I'll admit, I love a good challenge but I'm feeling overwhelmed, disorganized, sometimes hopeless, out of control and depressed about it all. I know it's not a death sentence, but when my 2.5 year old begs "not yet, mama, no "meddies" yet, two more minutes, please mama, it's ouchie" well....you get a little discouraged. I know we'll 'get there' and she'll 'get used to it' but right now our words have been turned upside down and it's all a little overwhelming.

If you'd made it through this, bless you. I realize it's a very long introduction! I'm wordy. I needed to get it out. I'm so angry. Not necessarily at her diagnosis, I'm thankful to have a reason for all this. I'm thankful my baby is smiling and walking and talking and laughing and eating and playing again already. I'm happy to see her face filling out already. I'm happy she's nursing again. But I'm angry at the ER for missing this TWICE. I'm angry to know that if I'd listened to those godforsaken ER doctors at my Tuesday visit and just 'given it a few more days', my baby may not be here right now. She had Kussmaul breathing for five full days and I haven't found much in my medical research that suggests there are many cases of small children who are able to withstand such a severe case of ketoacidosis and live to tell the story.

I'm filed complaints with the hospital, I'm writing a letter to the hospital Administrator, I'm filing a complaint with my city/state and I've considered talking to a medical malpractice lawyer. This can never happen to another child.

Oh, and my name is Jenna. I'm happy, so so happy, to have found this place.

 

I am so sorry you had such a horrible diagnosis story -- you don't want to be a member of this club. No one does.

Here are diagnosis stories that other parents have offered. Unfortunately, many are similar to what happened to you. This has happened before and will undoubtedly happen again. I am not sure why in this day and age, a doctor doesn't do the simple test for diabetes.

You have a lot to learn to deal with diabetes, but it is a tiger that can generally be tamed. Your daughter will grow and thrive and live a life not all that different from someone who has a healthy pancreas.

 

Welcome to the forum. I just joined a few days ago too. My daughter was just diagnosed last month (3 years old) and interestingly her name is Athena too!

So sorry to hear about your bad experience with the docs. The frustrating thing is that such a cheap diagnostic test could have been done. I hope you get through to somebody with your letter.

 

Your story is not the first I've heard like that - especially with a toddler and missed diagnosis. It is heartbreaking - and just unacceptable they don't test the urine for sugar, ketones, etc. - or the blood. So easy to do.

William was dx'd at 26 months and we caught it early - which isn't typical. I guess fortunately for me, a co-worker several years before has a daughter who developed type 1 at 2 years of age and I remembered her diagnosis story very well. When William had similar symptoms I had him checked. The nurse who saw us first swore to me that because he looked so healthy he couldn't have diabetes - just a UTI.

The wonderful news is that you were persistent and got the diagnosis before it got any worse. With good care your daughter will have a happy and healthy life without limits. Not that it won't be work - as you already know.

We used an "inject-ease" when William was on shots - that REALLY helped. Try googling it. I also got him on a pump as soon as I could (within 6 months of diagnosis was the earliest they'd let us) - that allows for so much flexibility. The last thing is take a look at a continuous glucose monitor. We have a Dexcom G4 and that thing is like a miracle. It can wake you up at night if she goes too high or too low - and constantly shows the blood sugar. It is fairly accurate too. I would have killed for that when William was 2. You don't need to run right out but these things are good to research when you have the time.

I also suggest looking into attending a CWD conference. There is actually one coming up in Virginia in less than a month - in Crystal City, VA. It is a technology conference so a great place to learn about pumps, cgms, etc. Take a look here: http://www.childrenwithdiabetes.com/activities/DC2013/ There are programs for school age kids (whether they have type 1 or are siblings) but perhaps you could bring a caregiver with you (grandparent?) or a spouse or friend to help you watch your daughter. I actually went to my first conference when William was 2 - it is a great experience. There is a bigger conference in Orlando in the summer every year - in July. Look at the CWD home page. For that one they do have child care for ages 2+ I'm sure (cause we used to put William there). I'll be at the one in VA in February - can't wait!

He is almost 11 now - time flies. He doesn't remember life before diabetes - which seems sad - but he also doesn't miss an "old life" - his diabetes is normal to him - just a part of him like his hair color or the fact that he needs to brush his teeth, comb his hair, give insulin.... all the same to him. Well I think he'd rather bolus than brush his teeth.

 

Thank you for the warm responses. I'm sad there are so many like my daughter. She's a tough cookie, though, she'll make it through this early stuff.

It makes me really angry that doctors won't do a simple urine test. It takes seconds, ya know? Sigh....

I'm going to research the things you mentioned, it's all so new to me. I can't imagine getting this beast under control. Athena tested positive for Influenza A last Thursday and I'd like to think it's gone now but her BG is all sorts of wacked out. I'm happy if it dips below 250. Today was the first day she had a negative test for ketones since....ever. They were small - slightly darker than moderate on and off since I started checking her myself on Saturday. It's so stressful!

 

Hi Jenna,

Thanks for sharing your story, and I'm so sorry that your athena has also joined us.

My youngest son grady, 3 1/2, was diagnosed dec. 23 (last story under diagnosis stories above). I know just how you feel.. the shock, the frustration... the overwhelmingness (is that a word?) of everything we need to learn.

((hugs)) from one mama to another...

 

So sorry you have to be here and that your daughter's dx was so traumatic and dangerous! No question is too silly to ask here...we've all been right where you are now. I would ask your endo for a blood ketone tester. It will give you more real-time results than the dip sticks. Even without the influenza, big bg fluctuation is super common right after dx. Hang in there--you'll get lots of good support here from families with young children!:cwds:

 

I'm so sorry to hear about the way your daughter's dx came about. My son was dx'd around the same age, and we saw almost everything that you did. The insatiable thirst, wetting the bed constantly, lethargy, and the labored breathing. I first thought that maybe he was coming down with a nasty bug, but when he started sleeping more than usual, I immediately took him to our pediatrician. He kept telling me that even though the symptoms were there, diabetes probably wasn't the culprit because we had no family history. Turns out both my sons tested positive for strep throat at the time, and to quiet my constant nagging and babbling about the possibility of diabetes, he did a urine test. Urine sugar came back at over 1,000 and finger prick came back at 325.

We went straight over to Children's in D.C. where he was hooked up to all sorts of machines and IVs. Luckily, we were able to leave three days later because we caught it early on, but during the time we were in the hospital, I was a complete mess. It is overwhelming in the beginning, and it still gets that way sometimes. Blood sugar can be hard to get within range during the first few weeks or so, but it will level out eventually. Just take it one day at a time and I promise that it will get easier. You just do the best that you can, and that's all that matters.

 

Wow, pretty tramatic diagnosis! Unfortunately, many doctors do not think of Type 1 diabetes in toddlers. When my son was diagnosed he was in a study and caught early. Our pediatrician was so grateful he was caught in the study because, and I quote, " I never would have had diabetes at the top of my list for a 13 month old baby. William would have been really sick before I thought diabetes."

Again, sorry for the diagnosis, but glad you found the forums so quickly! Believe it or not, it does get easier and less overwhelming.

 

Your poor baby. Thank God she is recovering. It is extremely maddening to say the least that docs don't think to do a simple urine test. I am so sorry she had to go through all of that trauma.

You are in a difficult time, and are in for at least a few hard months, followed by ups and downs that will become fewer and further between in time. However, there is a lot of light at the end of your tunnel. I like telling newbies, especially ones with very little ones...about my niece. She is an adult now, but was dx at 2...back in the "dark ages" when they didn't even send her home with a glucometer...just urine dipsticks. You are probably wondering about your child's future....this was my niece's...

She was an extremely intelligent girl...getting straight As throughout school, had lots of friends and activities. She was the first person in our area to get an insulin pump when she was around 12. She went to college, traveled internationally, graduated and became a teacher. She fell in love, married, and had two beautiful healthy kids of her own. She is now in her 30s, complication free...healthy and happy. Her D has never defined her or stopped her...it is just something she has to do each day to stay healthy. She is an inspiration to me and my son.....and THIS is what the future holds for your daughter. Never think otherwise.

Take care.

 

Oh my, I am so sorry this happened to you. I do hope things settle down for you soon... Consider writing a letter to the ombudsman office of the hospital system, tell them exactly what happened. This should NEVER happen to another child, yet it continues to happen, children/adults go undiagnosed.

All my best to you and your entire family, many hugs to all...

Kathy

 

Hi, Jenna. So sorry you have to join us here. Your story sounds a lot like ours. My dd was 1.5. I also knew next to nothing about D and knew no one that had type 1. She was also limp in my arms, in DKA and got a lot of medical attention all of a sudden. She was also very verbal for her age which was a blessing. My other 3 all had speech delays and I can't imagine what it would have been like to have them dx'd at such a young age.

I am also a VA girl but am up in MA now so not too close.

I thought it was like bringing home a newborn only worse too. People have babies all the time but this was completely new. You get through it though. It does get easier and more routine. My dd is 10 now and doing well with D. If they have to be dx'd, getting it young can be a blessing becaise they forget ever not ahving D and get used to it very quickly.

 

I don't even know what to say, other than you are so smart for joining this forum so quickly, My son was diagnosed at age 3 which was exactly one years ago and I didn't join till a few days ago. I spent the majority of last year feeling so alone and misunderstood. I hated how everyone tried to downplay diabetes and say stupid things like "oh, well just dont give him sugar." The best was when someone told me I was being to overprotective. It was like I was living in a different universe than everyone else. Even my own family doesn't seem to get it or understand the impact it has on us collectiely as a family.
You are smart for sharing and reaching out. Your daughter will adjust and this will all seem like second nature to her soon. But don't neglect yourself and your feelings. Hopefully we can all share and help eachother

 

Thank you for sharing your story

Thank you for sharing your story. It really goes to show what we moms know all along - we know our children and know when something is wrong. Sometimes you just have to be persistent and get doctors and nurses to believe you and take you seriously. I wonder if things would have been different at a "Children's Hospital." We have a wonderful Children's hospital and pediatric ER here where all pediatric doctors are on staff.

My son was diagnosed at 2 1/2 - 3 years ago. I noticed symptoms quickly (my husband is a type one also). Even though he was diagnosed before he was really sick - his blood sugars were still 680. The children's hospital er here got us right in.

You DO feel like you have been hit by a train and will struggle with finding a new normal - but it WILL Get better. Just take it one day at a time and come here for support. Moms and dads here know more than pediatric endos because we live with these children 24/7.

I hope you do pursue your medical claim. Why these doctors wouldn't have done a complete workup or urinalysis is beyond me.

 

Oh my goodness, I left out that important part, didn't I?

The ER I speak of? IS the Children's Hospital in my area.




Thank you all for your kind responses. I have always felt the need to be amongst those who understand whatever it is that I am going through. Years ago, when I experienced my second miscarriage (but first that truly hit me in a horrible place), I sought out a support group. Then again when I became a single mother. And now, as a D Mom. I'm so thankful for places like these. Places I can go unleash my anger, hurt, sadness and sorrow without my babies being the brunt of it.

We're getting there. Feens' (Athena's nickname) levels are still mostly high all the time, 24/7 but here diabetic counselor says we're doing a great job and the high sugars aren't nearly as concerning as the possibility for lows. We haven't had any dangerous lows since the hospital and I'm thankful for that.

Now we just wait for the blood work results on her Celiac testing. Sigh. As if T1D isn't fun enough, right? :cwds:

 

On my grandsons 3rd birthday (this past June, 2012) he had 'flu' like symptoms. Always asking for somthing to drink, he's eyes were sunken in. My daughter took him to his doctor. I had texted her to make sure to ask the doctor to check his blood sugar. Well when the doctor examined him she said he just had a 'bug' and went to leave the room. Thankfully my daughter insisted that the doctor check his blood sugar. She said there was no need to, but my daughter still insisted. Thank goodness she did. The doctor checked it and sent them right to the Childrens hospital in Ann Arbor. He was type 1 diabetic. If not for my daughter insisting for a blood sugar reading, who no's what would have happened to him. When I took my children to the doctor (a regular family doctor) first thing he would do is check their blood sugar. Of course this was years and years ago, but I would think that seening the symptoms of a child that 'could' be diabetes they would check just to make sure. Its been 7 months now and we are still trying to get his blood sugar to 'normal' levels. Making the changes the doctors tell us to. He is such a sweet little boy. It's hard for us to see him go through this. He is a trooper tho. He will choose a finger to be tested. And he will choose where he wants his shot. At first I couldn't give it to him, I was so afraid I'd hurt him. The first time i gave it to him he said, Good job Gamma, it didn't even hurt. I think one of the worse things is to get a 3 year old to eat. He does pretty good, but sumtimes he just doesn't feel like eating. That's when 'airplanes and rockets" come into play. He will open his mouth (hanger) and finish eating. I hope that it gets easier as time passes. My daughter just had a baby girl, and we are worried that she may have it to. The doctor said there is no test right now to see, but her chances of having it are only 2% more then average. So we are keeping our fingers crossed. Thank the people who write on this site. It helps to know we are not alone.

 

Hello

I sit here reading your stories and reflect on the day I found out about my nine year old daughter, Arynn. I see a little of our experience in each of yours. Arynn was diagnosed near the end of September, and now life is different, but we are managing. Our Children's Hospital is great, although it is located over 90 miles away. We've connected with our local support group, and love them, but I also look forward to being a member of this community.

 

It must be something about Hampton roads. My son was missed dx'd and we were told he was being a typical toddler with the drinking and peeing. Until I e night he was throwing up, having diarrhea everywhere and was too weak to sit up. Rushed to the ER and blood sugar was 1000! He was basically in a coma the next 24 hours. They out IV in without him noticing, he would occasionally open his eyes and look around but then would quickly fall back to sleep. This was in sept 2011. 5 days after my daughter was born. I still melt down and have days where they are a constant struggle. I def recommend a pump as it can give smaller, more accurate dosing!!!

 

I know that this is a bit old, but I just saw this thread and wanted to add my voice to it. We are in Virginia Beach when my then 2 year old showed symptoms. My dad has type 1 (was diagnosed in his early 30's), so my mom was always checking me and keeping an eye on my brother and I.

She was showing symptoms over Christmas, but my husband kept putting it off as she was growing. She was drinking more so therefore peeing more. The day after Christmas, I could not ignore it any longer. We brought her to our local pediatrician who tried to tell me that it was the flu. I did not believe him and demanded that he test for diabetes since I was paying for the test. He came back after traumatizing my 2 year old saying "Good catch Mom!" I was furious and filed a complaint on him. I had to tell him a few times to test her.

We were then brought to CHKD in Norfolk where we had the best experience. Thankfully, we had caught it early enough so we were only in the hospital fro a few days to train us on how to take care of her. I KNOW how difficult it is and how much it can hurt to see your baby like that. I can tell you that it really does get a bit easier, but you will still have rough days. Our Endo is Dr Satin Smith and my family adores her! CHKD may not be the best, but the Endo unit there is amazing.

Feel free to drop me a line if you need anything or just to rant! When you decide to go on a pump, we may have a wonderful way to brighten it up for your daughter! My husband came up with it, and my daughter just did it to me last night (4 years later).

 

27 month old granddaughter dx on july 21 '13

i just found this post this morning as i have started the search for a forum to belong to...meghan was quickly dx just yesterday ...all week i kept telling my daughter that something was wrong w/ meghan...i have a sister, who is now in her 50's, that was dx when she was 10...we are a "medical" family so to speak, my daughter ( meghans mom) is an ER tech in one of the best hospitals for children here in nj and my other daughter is an RN in washington state...so we are very "medically" aware even though i am not medically trained i am very in tune , hard to explain, anyway by the time meghan was taken down to the ER in sunday by her dad,( my daughter was working there that day) she already had an idea of what the answer would be..her test was off the chart at over 600 and she was already DKA..this is so overwhelming for all of us and as a team we know we have to pull it together i am also meghans caregiver 3 days a week so training is a must for all of us in the coming weeks..she has 2 sister ages 8 and 7...our big problem, we fear, is that meghan is not an eater! only kid i know who won't eat which may be a blessing in the yrs to come as far as having to "take things off her" but how do any of you handle making a baby eat? she is 27 months old and feisty! and also not potty trained..i am looking for any and all advice on here.. as always getting info from moms and caregivers is always the best...can someone please share their stories w/ me?...i don't want to be the helpless grandma, i need to be able to be confident when i am w/ megs and know i am helping her not causing more issues..thanks and sorry my story is so long..