My daughter was diagnosed with pre type 1 six months ago at a physical - based on testing positive for 3 antibodies and elevated blood glucose levels. She is not on insulin therapy and has an A1C of 5.7 She is on a lower carb diet. Initially at her diagnosis her endo told us she would be on insulin therapy with in weeks.
Just looking for similar experiences, advice and info on topics like food, school and emotions.
It’s been so confusing and frustrating.
@PreT1DKinderMom hi Catherine, welcome to Type One Nation and the club no one wants to be in.
I am sure the endocrinologist told you that the malfunction of the autoimmune system is not caused by anything you did, and that insulin producing cells are now being attacked by her immune system.
There are studies and trials taking place regarding lengthening the time she can make insulin, one of them are as follows:
…the prevention study at http://grassrootshealth.net/t1d We are actively recruiting, and the “cocktail” of high dose Omega-3 fatty acids and Vitamin D came from my friends at JDRF!
There may be other trials you can take advantage of, do not be afraid to press your doctor for information… however you must surely know that there is no cure for Type 1 diabetes…
Once she can’t make insulin anymore, then she will be dependent on synthetic insulin, which is required for the metabolism of sugar for every cell in her body except her brain… and the only way to administer insulin is by subcutaneous shot(s). She will also have to test her blood sugar regularly or continuously with instruments that are available.
Public schools have 504 medical plans and the school will make full accommodations for your daughter.
The community here is based on sharing information from people with type 1 diabetes (like me! I have 40 years experience) , and people taking care of others with type 1 diabetes so you are in the right place.
The JDRF may have a local chapter near you - you can go here https://www.jdrf.org/chapters/ and put in your zip code. The Chapters have fund raisers and it is a chance to network with others in your area.
I hope you are getting all the support you need. We are here for you.
Joe
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#ADA2019 just wrapped up. It included information about a new drug that has delayed T1D onset in some children. Now I can’t find the link, I’m sorry but research news stories about the ADA 2019 scientific sessions. Maybe your doctor can help.
Found it. Here’s a blurb from the TrialNet newsletter:
Study Confirms Positive Lasting Effects of Low-dose Thymoglobulin® in Newly Diagnosed Type 1 Diabetes
Findings from a TrialNet clinical study published in Diabetes show low-dose Thymoglobulin® preserved insulin production and improved long-term blood sugar control for 2 years in people newly diagnosed with type 1 diabetes. Thymoglobulin® is approved by the Food and Drug Administration (FDA) for prevention and treatment of kidney transplant rejection.
Hey any update on your daughter… how is she doing? My daughter is on her way as well, unfortunately she is to young ( 24 months) to have the anti-bodies test done she needs to wait till April at 30 months. Her A1C started at 4.8 in July but in October is now 5.1, still low but we see the rise in glucose. We have had spiked as high as 275 so we continue to monitor her. How did you recognize a problem? Just trying to find more parents who noticed the problem before the problem truly existed.
Hi Kathleen!
Thank you so much for reaching out you have no idea what this means to me! It’s so difficult finding others like my daughter. She is still the same. She gets high sugar but it goes back down.
We recently changed endos and now go to Mt Sinai in NYC. We love her doctor! She listens, is empathic and genuine. She also has a slightly different view on things in terms of what’s high, etc.
The highest Violet has ever got has been in the 300’s - which is too high. Just once while on vacation she already had 250bg and ate a huge carb meal and spiked to 400 - but it came down with in minutes.
It’s so confusing! But her doctor told us that in order for her to start insulin her numbers would have to be consistent - for example high for days in a row with out coming down. She’s never had that.
We did recently get prescribed an insulin pen for emergencies if she did ever spike for too long.
She tests herself. She knows how to count carbs and read nutrition labels. She is able to make correct choices in what foods work for her sugar level. She also knows that fluids and exercise help bring sugar down. She’s quite frankly AMAZING!
We take things one day at a time…even though she’s not on insulin it’s still pretty stressful. Sometimes she wants to eat but can’t because she has a spike or wants a carb heavy treat. We do let her have special treats just not everyday.
Kid first, diabetes second!
How is your little one? Do you test her daily? Where are you located? How are you holding up?
Look forward to hearing from you.
Catherine
We test her daily but not always, usually only if we sense something wrong. For example, I can tell by looking at her when she is high, she is flushed restless and extremely thirsty, so we test. I also test her in the morning to make sure we aren’t missing a high fasting glucose. We recently switched doctors too, we see a guy in CHOP, he’s ok but old school. He doesn’t really want to talk about the elevated glucose because its not consistent and all the test we have had at the doctors never show the high’s only our at home meter. We live near upstate NY but on the PA side, were about 30 minutes from Binghamton NY, not sure if your familiar with that area. I am mostly stressed haha, it feels like I am the only one concerned about her high numbers so that’s frustrating but so far my daughter is handling it like a champ. She is only 2, so although she is unable to test herself we test when she askes to be, I want her to learn what her body is telling her.
How did you know your daughter had a problem? What made you start testing her?
It is SO stressful! I think we moms take the brunt of it. I’m mega stressed tonight because she went to bed with high sugar 260. I just worry so much. My daughter gets irritable and cranky when she’s high and feels hungry. Even when we watch what she eats she might spike for no reason. It’s tough.
Where in upstate? I’ve been to Binghamton a million times. We love a place called Speidie & Rib Pit!
That’s so cool she asks to be tested!
I requested her sugar be tested because after being hit with some viruses all in a row in the span of 6 weeks she every now and then just wasn’t herself. Pale looking. Crabby. So it came back she had hyperglycemia. That was a year ago. The endo told us she’d be on insulin within a couple weeks as taught us how to calculate insulin and so forth. It was terrible!
My daughter similar, she had pneumonia 3 times last year between December and March, I knew something wasn’t right. One morning in April I went to get my daughter out of bed and she wouldn’t wake up, we rushed her to the ER and found out her blood sugar was 40. Doctor in the ER told us it was a fluke and would likely never happen again, unfortunately it happened 3 more times before we were able to see the Endocrinologist in June. He has us start testing her regularly, that’s when we started to notice elevated blood sugars around mid-late June. The number slowly crept higher until we she was consistently above 130 just about all day long with spikes near 300 but than all of a sudden late July her numbers started coming back normal, some highs but mostly normal. Now once or twice a week we get a high fasting or high random but nothing consistent. Trial net advised us this is normal in the beginning, for her numbers to fluctuate but to really pay attention to signs of hyper/hypo and to monitor more closely during illness.
I know the place your talking about :)… I work in Johnson City which is just outside Binghamton. Its nice honestly just talking to someone who understands where I stand, I feel like everyone including my husband thinks I’m nuts haha
Would you like to exchange phone numbers - we could text instead of email? I’m so happy to have met you!
Yeah that would be awesome. 201-850-2386