Help? Possible early Type 1?


#21

What a dangerous thread !!

So, “Confused” has determined that her son’s A1C is ever so slightly above the normal range for children. Normal range for children is less than 5.6. Her son is 5.7 - HARDLY ENOUGH TO COMMENT !! C-Peptide may be on the low end of normal, but, still is normal.

What have we accomplished? “Confused” - AND HER SON - are experiencing more and more anxiety as she is giving him unnecessary finger sticks. Those finger sticks don’t hurt much for those of us who have had diabetes for 30 years and have built up callouses and some neuropathy, For a 4 year-old, however, THEY HURT !!

My advice, perhaps see an Endo. Other than that, STOP WORRYING !! Don’t chase trouble, until trouble finds you.

Sometimes, if you look for a disease, you’ll find it whether it is there or not.

As for “just lookin”, saying normal blood sugars for children range from 60 - 90 - HOGWASH !! A blood sugar of 60 will have a 4 year old child confused, sweating, and shaking like a leaf.


#23

I understand your comment, but everyone here has given her the same response; “Go to a ped endo.” No one is providing an actual diagnosis, all I see are words of encouragement and guidance on what her next steps should be.

Being a parent means you are always worried about something, let’s all hope everything works out fine for Confused and her son. :confused:


#24

I apologize for my harsh response. But, I found some of those comments more alarmist then encouraging.

Out of curiosity, some of my friends and family wanted to see how their blood sugar reacted to food and those numbers are not that unusual.

I have had a number of incidents with one of my daughters where blood work came back wonky and had the potential to be indicative of serious conditions such as leukemia, muscular dystrophy, and even diabetes. We brought her to all of the best specialists at the children’s hospital. All the tests turned out to be negative … Thank God !! I don’t believe that worrying and anxiety served any purpose. The specialists said that sometimes, some children, are just outside of the normal range for many tests.


#25

That’s what tests are for: to find out either way and avoid guesswork. I stand by my previous recommendation: see the pediatric endo. If everything is negative, great! Peace of mind. If not, then the sooner you find out, the better.


#27

Trying not to worry about your kids is like . . . oh, I dunno . . . raking leaves on a windy day. :wink:


#28

I do not agree with this statement. I thought my 16 month old was showing the signs of diabetes, but I held off testing him because I didn’t want to hurt him with the lancets.

Finally, things were not improving so I tested him. I use the OneTouch Delica lancets and he didn’t make a sound or complain at all. They did not hurt. Of course he was high and I was kicking myself because I should have just tested him sooner instead of worrying about things hurting. He was diagnosed with Type 1.

At the hospital, they used some crappy medieval lancets (not the stone age ones that were used when I was in the hospital to draw those containers of blood they would milk from your finger and run off to the lab) and they did hurt and made him cry. So of course, I just switched back to the Delica lancets and he had no issues with testing to this day.

So moral of the story - if you use good lancets it will not hurt a 4 year old and it is better to test and have an answer than to not test because you are worried about the lancets hurting.


#29

Also, some of the test that the ped endos do run can come back with conflicting results. some endos want you to come in with a list of readings to basically “endorse” your need for the appointment. I had to have 2 weeks of readings when I took my daughter.


#30

On the flip-side of the argument, I do wish that 30 years ago, my parents had caught my diagnosis earlier and saved me a heap of grief.

When I was eventually told to come into emergency, the doctors said, without coming in, I had about a 6 hour life expectancy !!


#31

An all-too-common occurrence, even today. :disappointed:


#32

My 4 year old who is not diabetic frequently asks me to check her blood, maybe she’s curious or maybe just wants to be like her mammy. I have occasionally done it and on other occasions I have pretended to do it, with no lancet in the device. On these occasions she complains and asks me where is the blood! So I really don’t believe they hurt her, she’s not a masochistic after all, just an experimental 4 year old.


#33

Thanks for your concern Tim35. Just so you are aware I have asked his doctor to refer him to the pediatric endo. The doctor and I had talked about it at my son’s appointment yesterday. We discussed with the non suggestive numbers really in one direction or the other with the tests that had already been done there really may not be a whole lot more that the endo can do but play wait and see with us. So, I took a day to think about what direction I wanted to go. I really don’t want to be a burden or a worry wart if there is no reason to be. As you are probably aware it’s not always easy to get an appointment with a specialist. Our doctor can certainly send a referal but it may be a month or more down the road before they are able to see him. They are obviously going to take their more urgent patients first. So in the mean time I was looking for maybe a little reassurance that I wasn’t completely off my rocker. Maybe a friend who could say, yes this is what I went though and your not crazy to worry. Or of course the reassurance that hey his numbers are not indicative of anything concrete, keep watching, be vigilant but don’t fret. I am very well aware that if by chance he is headed down the road to a type 1 diagnosis there is not anything I can do to change that. Sometimes people share common stories, common symptoms and can give reassurance that the outcome whatever it is, is going to be just fine. So yes, I have asked for the referal. I am doing everything I’ve been asked to do to ensure my son is happy and healthy. Again thank you for your input.


#34

Hi Michael. I am a member if typeonegrit. We have 1000s if parents there with kids with and without type 1. Some of those parents have their nondiabetic kids run a cgm. Their 24 hour traces invariably show blood sugars on the lower side of the stated range and with very little variability.

Dr Bernstein also states in some of his works that nondiabetic kids typically run lower than adults.

My daughter (now that’s she’s eating low carb, no meds) also shows overnight cgm readings in the 70s… Vs. Low 100s before.

We are not trying to be alarmist. We are encouraging op to look into this further and be vigilant, which she is doing. There are way too many stories of kids diagnosed late…

The last person on here I talked to with a similar story did have her daughter diagnosed with early type 1, daughter is now on insulin, and is doing well.


#35

They are. My kids, my sisters and their kids all get to be tested because of me being diagnosed and using insulin before age 46.


#37

Hey Confused. We can call empathize, and this reminds me of my journey with my daughter which I write about here: My 13 year old daughter'S dexcom data- suspected diabetes

Before jumping to any conclusions, it’s important to see the endo and get the antibody tests done.

Good luck, and we’re all here for you and your son.


#38

Thank You all for your replys and support. I went online and ordered a kit from Trialnet. I will also be calling the doctor in the morning and insisting on that referal. We went to the pool today. My son went to the bathroom 4 times in 3 hours without drinking anything. We came home. He ate some gummie lifesavers (not the best after swimming snack) and he fell asleep. About 30 min after he had finished eating, while he was asleep, I checked him. He was at 235. I freaked out. Checked him at 1 hour, he was 183, at 2 hours 134. So, he came off that spike fine but I’m uncomfortable with him going that high even if it was candy. We certainly will be restricting sugar (candy) until we figure this out.


#39

Hi Confused,

The 235 and bathroom 4x in 3 hours without drinking is a concern. Glad that you’re calling the Dr first thing tomorrow.

Our pediatric endo told us that any spot numbers over 180 will already result in a diagnosis.

Please watch his hydration levels. If he’s peeing and not drinking, he’s at risk of dehydration. If he becomes weak / lethargic please take him to the nearest emergency room, being sure they check his sugars…

Please have him eat low carb for now (meat, non-starchy veges, dairy, nuts, cheese, etc), which should put less stress on his pancreas and stop him going so high.

Best wishes to you and your son.


#40

Hi,

How is your son going now?


#41

Thank you for checking. A referal was sent to the pediatric endo today so I’m hoping to hear about an appointment in a day or two. I also set up an appointment for both my kids to have blood draw for Trialnet. That’s July 10th…hopefully I’ll have some answers on my son before then. It’s so confusing. I’ve been checking him a little less because it really is stressing both of us out. I try to check his fasting in the morning it’s usually 98-100. I caught a spike today of 183 but it’s hard to know when to test throughout the day. Before meals and 2 hours after is hard because he truly eats ALL day long. He always has something in his mouth. I hope we have an appointment soon. I’ll keep you updated when I hear.


#42

Best wishes to you and your son. How are you going with eating lower-carb. I’ve found some great recipes recently.

My daughters love lowcarb icepops made with fresh strawberries, cream, almond milk, cream cheese, lohan or erithyritol sweetener, and strawberry essence. All blended up and Frozen. They scored it 10/10 and I’ve got repeat orders. :slight_smile: We are also doing pretty well with cloud bread, and nut based breads… which they eat with sugarfree peanut butter.

My kids have an appointment for trialnet testing when we’re back in Australia on 29th June. I’m hoping to get some answers there too.


#43

We have an appointment with the Pediatric Endocrinologist next Wednesday. Finally. Thank Goodness.