My little man has T1D

On March 20th of this month my son which is 6 was diagnosed with T1D. My husband is also a T1D he was 12-13 when he had found out. My heart was broken but hey what can you do when you have to be the strong one since everyone else is freaking out! I Had to be strong!!! Anyways I’m about ready to scream and run. Everyone is getting pissed at me and telling me that I need to listen to them, Including my husband since he’s been one for about 25yrs now he “knows it all” and what I need to do!!but of coarse it’s not like the Drs say. Even his mom and grandma is telling me that I need to listen to him! IM flustered!! In the mornings it’s just my baby and I and we have to learn how to trust and rely on each other for this. During the summer it will also be him and I since I’m lucky enough to have a job with summers off! And on the other side I have my mom and stepdad saying “how this is the devil and he won’t have to be on insulin for the rest of his life” “let’s pray”!!! Seriously come on I don need this right now you’ve got to be kidding me! I’m just flustered and feel alone and pulled in 50 different directions!!!

I’m so sorry. My son was 3 when he was diagnosed and my mother had just passed away. We had promised to take in some children if the mother couldn’t break her drug habit so a month after my son’s diagnosis, I had a new born & 11 year-old girl move in. Not quite the same as your stressers, but I can feel how overwhelmed you must be.

Your husband needs to understand that this is all new to you and you NEED to do what the doctors are telling you, not what he’s telling you. Of course, he can offer some valuable experience, but ultimately, the doctors know what your son needs.

Your mom and stepdad need to be educated. Type One Diabetes (at this time) cannot be cured and no amount of prayer will change that. My son is 10 now, and is doing fine. He is actually at diabetes camp for 5 days. Everyone is just reacting to the diagnosis in their own way and lashing out. The bottom line is that your SON is the most important person right now and all the fighting has to be affecting him. Try to remain calm and just be there for him.

You have support all over. Big hugs are headed your way. It’s only been a few days so try to relax and not stress out your son. It’s not the end of the world, just a little hiccup in the road.

Hi, djworkman23 has said it perfectly in every way. I will add that your husband and your son are super lucky to have you in their lives. T1D in one’s child can stress a marriage and as djworkman mentioned, it’s important not to stress out your son. Your husband will have important insights to offer but your insight and instincts as a mother are equally important and valuable. Try to relax and let this be a bridge and not a chasm in your life as a family.

Most definitely: education for your Mom and stepdad ! T1D is real and at this time there is no cure.

Hang in there, you’re gonna make it and so is your son :wink:

Thanks for your guys support!!! It truly means a lot to me. I so far have done a good job I think of shielding my son from all the fighting. Most of the time its just easier to eat it up take what ever people are throwing at me and just leave it on my shoulders. To me its just easier than dealing with peoples opinions and attitude so my son dosent see me brake down or be weak thats the biggest thing I don’t want my son to see me being weak and walked all over…!!!

Ive read and heard of the 504 plan and am going to ask his dr about it but can someone please help me out at understanding it a little more. As an special needs associate I deal more with IEP’S than 504’s…….???

I wish I could help in that respect but I work at the school my son attends so I have always just “been” there and haven’t needed a 504.

As for shielding your son, good job. He has enough on his plate right now and you can ALWAYS come to us to “vent” when you are feeling overwhelmed and are about to explode. Trust me, I’m sure we’ve all been there at one point or another.

Our 10 year old daughter was diagnosed with T1D on Feb. 18th. We were totally overwhelmed with it all and grieved hard for a few weeks the dramatic change for her and our family. We are six weeks in and are starting to get the “new normal” down. Took our first family vacation last week (out of state) - lots of restaurants and dinners with family and friends - a bit nerve wracking but a great success - we did it!

We are now part of a club we never even imagined. It is amazing to learn about so many others in our little world who have T1D (kids and adults).

As I understand it, medical practices/treatments have changed much over the years - which might account for your husband’s approach.

We are novices - but at only six weeks in we are getting the hang of this! Please have hope - your boy is so fortunate to have you caring for him and to have a dad who has lived with this for so long.

Peace to you.

Thanks for your support everyone I’m grateful along with this I do work a full time job plus I’m currently going back to school full time so that I can get my teaching degree and become a special Ed teacher! For the next year my classes will be online so that will be very helpful but with just my home life and family I feel so overwhelmed and tired and it feels like if I even hint for a break or just some “me” time I’m in the wrong but I can feel it I’m already wearing myself out! And I’m only on week 2!!! I really wish ther were another 3 or 4 of so that I’m not neglecting anything and making anyone mad! These once a week trips to the Drs for the next three weeks are killing me. That first Monday I went to my employer told them what was going on and got on FMLA since I’m my sons main care giver.

Of coarse my husbands count was low this morning and he is a mean low to. I Have to have him drink mt. Dew to get it back up. Then he’s ju a jerk the rest of the morning which isn’t fa to me. And then my little man sees it God I hope he doesn’t pick up on his bad habits!!!

Sorry I did relies that there is missing words those were suppose to be jerk and fair.

Jlynn83-- Do NOT be do hard on yourself, your husband, or your son! I am a T1D, diagnosed in 1963 and I am now 56! There are many “ups and downs” in having T1D. Believe me, no one knows that fact more than I do. I just want you to know that your husband and your son are very lucky. They are both living at a time when insulin has been greatly improved! I had to ‘begin’ with pork/beef insulins (as a child, youth, and young adult). Believe me, the rDNA insulins produced now are far better than the ‘older’ insulins. Remember, too, that your husband and son now have a pretty easy way to test their Bg’s. When I was diagnosed, we could only measure our blood glucoses with sticks that you had to urinate on–UGH! They were no where ‘near’ accurate! Believe me, I can fully understand where you are coming from. Live each and every day to its fullest. TRY to NOT let the “ups and downs” pull YOU down! Self-responsibility is the key to EVERYONE’S health!

Im sorry guys please don’t be offended by what i had said this morning I was just venting I was just having a rough morning.

Like I told you yesterday, that’s what we’re here for! Don’t ever apologize for venting. Trust me, we’ve all had our “days” and that’s the reason we’re here - to share them with people who understand. Hand in there Jlynn83!

I’m having another ruff morning my husbands count was low again and yesterday afternoon my son was so I called the dr and she said to up his scale from 15 to 20 carbs. And for some reason my family thinks that I am super woman!

Interesting, that I:Carb ratio as it’s sort of aggressive. My son had a 1:30 and 1:25 ratio for many years. It probably could have been a little more intense however the lows would have been worse.

So, to bring him “down” by 25 points of BG he would get 1 unit. Usually he would be in the high 200’s or more so he would get 4+ units. With your ratio, to bring your son down, say, 50 points, he would get 5 units… If I have done this right, then it seems aggressive for a small child. Everyone has their own ratio regarding what works, although as I’ve mentioned b4, our docs were quite worried about too many lows due to the hit to brain cells not receiving what they require to function.

Re your husband’s lows: I have very often heard that men get ornery and have emotions of anger when low. I know someone who occasionally has to have the help of police because she cannot control her husband, and when he is low he is irrational and will not treat the low. I wish I knew a solution to this as I am sure it wears you down as wife and mother.

My son, who is now in his 20’s has never been angry when he is low. He just cannot function. As a female who can become very low; if I hit BG of 35, I tend to get emotional and cry. I can’t help it – it’s all out of my control – and perhaps b/c I am wired differently as a female, my body’s response is to cry.

The daunting task is to prevent the lows…easy to say, super hard to do, I know.

As the other blogger wrote, DON’T apologize. T1D is hard. It seems those in this blog-forum truly understand – so you can Vent all you want or need :wink: Keep writing if you can…stay in touch.

yours truly

Ruff night my baby is not feeling good and getting sick

Is it diabetes related or something else? Either way you need to be sure you keep on top of his blood sugars and call the doctor if they get out of hand.

As for your earlier post about the ratios, my son (at the age of 3) was on a 1:20 ratio for the first few years. It’s been gradually creeping up and he is at 1:13 for breakfast and lunch & 1:15 for dinner. The wonders of a pump make this so much easier :slight_smile: I have become comfortable with adjusting them myself as needed. I’m not recommending you do so, just a heads up that you will eventually get better at these things. If I notice he’s running high consistently after meals then I make a slight adjustment and see if it helps.

I sure hope your son is feeling better soon.

He just got started throwing up last night and his numbers were all over the place anywheres from 365 to 102. But he didn’t have any keystones. He is just such a little guy (that eats me out of house and home) that I worry when he gets that I’ll. Now this morning he’s mad since he can’t go to school! Yesterday with the specialist she said that she thinks that we are in the “honeymoon” stage.

My baby boy also got his JDRF backpack and his bear Rufus that is like him and he won’t let it go for nothing!!!

Hi again,

HONEYMOON period is a phase where the pancreas secretes SOME insulin, so it’s just another guessing game in the management of glucose levels. When the phase is over, the body is 100% dependent on insulin and often the dose (and all the ratios) have to change. It’s kind of silly to call it a Honeymoon.

Yeah, as the other blogger stated the main action to take is monitoring BG with finger-sticks. Young kids usually become accustomed to this. I used to let my son give ME a fingerstick sometimes, so he wasn’t the only one getting this test all the time.

I became ** really ** tired of nurses and MDs asking me if I had checked everything so I wrote the list (below) and printed out a bunch of copies. Then I just handed to the nurse or the MD and said: "this is what I/we do EVERY time, so let’s understand each other."
It looks like a tough list but our brains run through all this stuff faster-than-lightening – way faster than technology.

Have been quite hesitant to put this out there in a blog, as everyone has their own “list,” and I do not want to cause any angst or controversy among the writers here in typeonenation.
It’s just my personal list and input as a Mom.
The last item #25, about gut feel, is just as important as anything else.
I think your husband, with T1D, will recognize many things on this list.

I hope my post isn’t a bummer / TMI. I really want to help if i can.

Decision Factors When Managing Insulin Dosages on a Daily/Hourly Basis

(These are the facts and/or questions we ask ourselves every time my son and I make a decision about how much insulin he is getting, or should be getting, in response to blood glucose level (BG) at the time)

BG = Blood Glucose
Basal = Baseline for homeostasis (homeostasis = healthy)

  1. Time of day

  2. Current activity level

  3. Past activity level(s)

  4. Near future activity level

  5. Prior BG levels (24-48 hours)

  6. Insulin type if using Lantus vs Pump

  7. Age of insulin (i.e., vial in use for 30 days or more)

  8. Most current basal dosage recommendations per MD and delivered via insulin pump or injection

  9. Most recent outcomes of dosage adjustments to basal, bolus, correction factors, I:Carb ratio

  10. Site of injections/pump infusion set

  11. Ketones (pos/neg)

  12. Growth spurt (Y/N)

  13. Food intake by TYPE:
    a. CARBs
    i. How many grams carb per serving?
    ii. Quick acting carb
    iii. Slow acting carb
    iv. Glycemic index of carb
    v. Fiber content of carb (subtract from grams of carb)

b. PROTEIN intake (type and amount)

c. FAT intake and composition (amount of fat in food combo)

d. How all 3 types of food work in concert when consumed together in a meal

  1. Food intake TIME OF DAY

  2. Food intake AMOUNTS (relative proportions)

  3. Overall health

  4. Age/hormones

  5. Stress levels ( “sick-days” stress the body)

  6. My son’s PERSONAL input to the decision process (this is the most important factor)

  7. Logistics (i.e., will I be able to get to my son in the event of an unpredictable response to changes in insulin dosage or type)

  8. Overall BG goals - both daily and average

  9. My son’s current level of understanding - this changes with growth/age

  10. Current weight

  11. Change in body weight (Y/N)

  12. “GUT” feel or intuition