Hello! I am new here but my 8 (almost 9) year old son is exhibiting symptoms of Type 1 and since it runs heavily in our family I am aware and monitoring. Main symptoms are frequent urination, sometimes getting up 10 times a night to pee and frequently during the day. It’s not always as much. Also there are some severe mood swings which seem to correlate with eating/blood sugar. It all started about 4 months ago when he was up practically all night having to pee. I had to keep him home due to no sleep from school. My husband took him to pedo who said urine tests all normal. Probably a virus she said. So it eventually got a little better but still the very frequent urination. Sometimes he is very thirsty but again not consistent. I started checking his blood sugar at various times of the day and keeping a log but so far his levels have been WNL. My question is what were your experiences BEFORE a diagnosis and was it something like this that got worse. If so how long between noticing symptoms and diagnosis?
As an aside he is going next week to do the tests from pedo and will be fasting.
Thanks in advance! I am trying to be proactive but it is hard finding out about the pre-diagnosis period as most information is targeted at those already officially diagnosed.
Also is it worth doing a consult with a pedo endocrinologist at this point or will they think I am a crazy, overprotective mom who reads the internet too much on medical conditions?
he there where you have the ability to monitor his blood sugars at home I don't think a trip to the endo would be warrented, my son had some hypo symptoms perhaps 6 months prior to D such as 'feeling' low after a bowl of junky cereal in the morning, I didn't think much of this as I can feel this way if I don't eat frequently there is no type 1 in our family and I didn't give it a thought at all until the frequent urination and thirst which really peaked after a week or two at most, I was strongly suspicious and bought a glucose meter which read HI I think if it is kicking in it doesn't fool around, perhaps it is more of a urinary issue keep your fingers crossed! best wishes oh and I would back off a tad, I'm sure your son is nervous at this point I would only test his bs if the signs intensify but I would see his pedi for other reasons and pray for those other reasons! amy
Go peds endo...my daugther had severe weight loss and extreme tiredness a week or so only before she was diagnosed and i took her to the peds doctor who told me she had mono and to go home as there was no treatment for mono... she never even did a blood or urine test...ended up in ER/ICU a few days later...point is, you need to have someone very familiar with T1 to do the diagnoses...wouldnt rely on what the peds dr says...however, if you are testing blood regularly, it should be showing up...best of luck!
With a significant family history of T1? No, they won't think you're crazy. They'll be delighted that for once they don't get a kid in DKA who is in danger of dying.
As an aside, there is a program that tests relatives of T1s to identify who may be more likely to develop the disease. Check this out: http://www.pathway2prevention.org/ and seriously, do not wait. It is far, far better to get a diagnosis and start insulin early on than to wait until symptoms become more obvious (and more dangerous).
In my son, I noticed copious urination at night (he was 1 1/2, so it consisted of frequent wet beds and/or waking at night because he was wet), crankiness, and frantic thirst. I *told* my pediatrician Eric had diabetes and I needed him to confirm it, but he was dubious... until he got the urinalysis result in his office. Then it was to the ER and in the hospital for a week, since my son had DKA. And *my* family has zero history of T1.
But here's the thing: I'd noticed the symptoms for 2 solid weeks before I took him in. All of what he was going through could easily have been teething, a UTI, or just one of those toddler phases. Had I gone sooner, maybe we could've avoided DKA... but you really cannot tell just how sick they are from outward appearances. Even the PedEndo who met us at the hospital, once the lab results were back, commented that Eric was "the healthiest-looking very very sick kid" he'd ever seen. So, yeah. Go. Go now. Don't wait.
My son's story is very similar to yours, Elizabeth, with the exception of being in the hospital for a week and that my ex-wife's family has multiple T1D in every generation.
Luckily, my ex was neurotic about him being a diabetic so she borrowed an old meter from her brother and checked our son constantly when he started urinating throughout the night and drinking a lot more milk/water than normal. Our pediatrician said he had a yeast infection and was "just thirsty" and not to worry. Happy to say we didn't listen.
As far as Hooly is concerned; I would say do what you feel you need to do that's in the best interest of your son, but don't scare him and make him think he has something that he may not have (yet). :)
As an update, we did all bloodwork yesterday including the Trialnet autoantibodies test for both kids and my husband. The dr mentioned maybe doing the GTT but we are going to wait on results before deciding at this time. Thanks for all the responses!
Thanks! That’s what I was thinking. I am hoping it is some other issue but when all else is good and the main symptoms he has are linked to that, it just doesn’t seem like something to ignore. Especially since it affects his daily life. I am being proactive and maybe even jumping the gun but I also know with Type 1 it can become an emergency really quick! Thanks for not thinking I am being silly or overreacting and for the advice. I will keep you posted.
