It has been almost year and my son a1c is 11.9. Omg! I need some suggestions!

My wife went to the ped. endo for our son’s routine checkup. They checked him.
And told her, " you are poorly managing your son diabetes and we are gravely concerned.
We were taught from their nutrientist to give him healthy choices which we are doing.
And don’t deprive him if he is hungry but just cover him. We are about put him into sports
Activity to bring down his a1c number. His fingersticks are within 180 and 301. We are not
Ready for the pump. Any suggestions will be appreciated. My family is from Brooklyn, ny.

If all his fingersticks are between 180 and 301, no wonder his HbA1c is high. 11.9 is an average bg of 295. So evidently he is spiking when you are not testing. His after meal numbers need to be closer to 120-140. The basic fact is with diabetics all carbs cause bgs to rise, even healthy ones like fruit and whole grain bread. So these carbs do need to be watched very carefully and used in very small portions. I know you say you are not ready for a pump, but I do know many children adjust to them very well because it forces you to figure out what your basal needs are and adjust insulin accordingly. With your son going into sports I would be careful to have him test before he works out. The general rule is not to work out if you are above 250-300 because bgs could go higher.

Thanks for the reply.

Have they taught you how to change his insulin to carb ratio or given you a suggestion on how to do so?

Also if all his blood sugars are that high, it sounds like his basal rate is way too low…did they suggest how much to raise it?

If they aren’t giving you guidance or giving you the information you need to make those changes yourself…you need to find yourself a new endo NOW.

I agree that his A1c is too high, but I don’t think throwing all the blame on you and saying they are concerned is appropriate. If they are so concerned they need to show an effort to help you and suggest ways to help, things to do, and how to change his insulin regimen.

Hi there. I saw your comment on my profile page and then noticed this discussion you started so I thought I would reply here.

My son Caleb was 3 when he was diagnosed. At that time his A1C was 9.8. By the time we had our first endo appointment six weeks later his A1c dropped to 7.4. Two months later it was 6.4 and his therapy was largely injections that entire time.

For his age, Caleb’s diet was relatively large. We were provided a guideline of carbs per meal and his consumption was greatly in excess of that. All (mostly all) healthy things. My point is only that we have never deprived Caleb of food.

Nevertheless, the injection routine that Caleb was on was VERY rigorous. He ate 3 meals and 3 snacks a day all at the same time. His meals were the same amount of carbs each day - they were based upon his appetite, but still the same every day.

For the approximate three months that Caleb was on injection therapy, he used a combination of Novolog and NPH. He would get a shot before breakfast and a shot before dinner. The morning NPH would cover his midmorning snack and his lunch (the novolog his breakfast).

It was rigid and cumbersome. But that rigidity and routine kept his bgs in tight range.

For the past 4 years Caleb has been pumping. I see that is not something you are ready for. Not knowing your insulin regime, it’s hard to give specific tips, but techniques I find helpful that would be transferrable to injection therapy using a long lasting insulin like lantus and fast acting each time you eat are:

  • administer the insulin prior to eating, perhaps 15 minutes prior to give it a chance to start working
  • accurately carb count - we weigh and measure just about everything Caleb eats
  • establish any kind of routine you can and stick to it as much as possible
  • understand how different foods affect your son’s blood sugars. Being able to tailor dosing for Caleb for foods that do peculiar things to Caleb’s blood sugar has made a significant difference in his management.

    Those are just a couple of ideas. If you have more specific questions I would be happy to answer them. I would hope that your son’s doctor would have provided some ideas as well. I encourage you to review these ideas with him/her and perhaps prioritize the next steps. It’s not fair to provide feedback that you aren’t doing a good job without giving some guidance on how to do better.

Has it been since he was DX? If so, he is at the end of the honeymoon phase and his basel rate will need to be adjusted. Also above I read he is on NPH? The morning shot would not be covering the midmorning snack. When I was on that that really only started to work at lunch. Also he is young and growing so his insulin dosages will change a lot. If you are not getting any good guidance from the Endo you may want to find another one. Some of the ones I had in my past were stuck treating D as they were thought in the 80’s and never adapted to the new treatment methods.

I agree with everyone above that his entire regimen needs to be examined and worked with, and if this endo is not willing to do that, find one who will. If he is not working with you intensively, he has no right to chastise you for poor management! I also, even if you get a better endo, highly encourage you to educate yourself and learn how to manage and tweak your son’s dosages because you are dealing with this 24/7. The most up to date treatment, short of a pump is MDI which includes a basal (long-acting) insulin and a fast acting insulin for meals. He also should be using an Insulin to Carb ratio to determine his mealtime bolus doses, not a set dose or a sliding scale both of which are outdated and ineffective. The correct insulin:carb ratio (I:C) needs to be ascertained by trial and error. 1:15 is a good place to start and then go up or down until you are getting good results (under 140) 2 hours after meals. If he is high in between meals, fasting and bedtime than his basal dose is too low and needs to be tweaked one unit at a time and then waiting about 3 days to make another change until the results are where you want them. You also need to learn his correction factor (ISF) which is how much one unit of insulin brings him down and start doing corrections if he is high.

I strongly encourage you to get the book Using Insulin by John Walsh. Good luck. Also don’t hesitate to ask specific questions here. We need to know more about what you are doing now in order to make suggestions

Jellyman, I see you are an LPN. You take the full record of tests, shots, and food given in grams - hope you’re doing at least 7 daily tests - to a diabetes educator in your closest local hospital. Tell her you’re an LPN and ask for specific advice regarding carb ratio for the foods your son is eating. Ask so that you can get knowledgeable about it. Get to be an expert in this.

Ask to borrow her books or anything she sees might help you. Get down to the brass tacks of what’s in breakfast, what exactly is in lunch, what is in snacks that he’s eating, and what exactly in grams is in supper. Ask from what the CDE sees on the papers you bring, if you can start upping the basal dose or if need be, give two doses of it. Be absolutely a grizzly bear about going after this.

We love you and your family. You need a support system in a live person made up of some of the nurses who are nearby, and you should take advantage of them. Be sure you ask for a certified diabetes educator. Take her some lunch at her desk so she’s close to her books. And spend your time pumping her. Be aggressive about it.

My daughter now is 2 years and half old, she was diagnosed at 14 months of age.
We use injections, but as soon as omnipod arrives here, or other patch pumps, we will go with micro (classic pumps are too big for her now).
First please tell us more about what your doctor teached you and what you do.
I’m from Italy, so we have three main meals, and for each meal we do a bolus (we use humalog but would like novolog beacause has a broader choice of mixed insulins). We do lantus in the morning and it lasts 24 hours for us. We started with NPH, but it left holes of basal insulin during the day so I started to mix NPH and humalog in the morning and in the evening and it was very difficult to compare one day with the other and learn from experience.
NPH has variable action.

If your son hates injections, try to use insuflon, a cateter that you change every 3 days. Than you can inject first NPH and than Novolog into insuflon without additional pain (so that novolog washes out NPH from the 0,5U the cateter contains). Probably you need NPH at evening and at morning to cover 24 hours. If your son is always high could have not enough basal insulin, and boluses too small.
My doctor gave me fixed doses, but I had to change them day after day to find the right balance. If you are lucky your doctor will tell you, otherwise change doctor and meanwhile do it yourself (sad but true).
If 2 hours after his meal you have BG higher than before meal, his bolus was too small. If after 3 hours his bg start rising, his basal is too small.
Use Novopen junior or Echo, which have half unit gradations.
Learn CHO (carboidrates) counting: we use fixed CHO meals, but during the week we change same food with others to mantain the same CHO total, and fine tune insulin dosage.

If you can, ask for lantus even if it’s “off label” under 6 years of age. Don’t use NPH.
Lantus is far from perfection, but let you learn from previous day and do your CHO counting to find your parameters.
For lantus you should always use syring, because very small dose changes are important: you can’t use a pen with only 1 unit gradation. I measure 1/4 unit with syring.
Lantus cannot be mixed with other insulins, so you can’t use insuflon for that.

I tell you my experience to let you know what your doctor MUST tell you. Put him questions about what I said and see if he has answers. If not, look for another one.
You have to be autonomous in day by day changes, but you need a doctor to put questions and get answer about terapy and analize data.

Best wishes and keep going.

Questions: Are you using a food scale? Do you write everything down? EVERYTHING that goes into his mouth, every shot, every test? The difference between a small potato and a large potato can be double the carbs. It’s important to get real about what he’s consuming. Weighing and measuring will be required until you’re all experts at picking out and knowing the number of carbs in everything he eats. You can’t guess. You have to know.

I have a friend who taught me, “If I can’t count it, I can’t eat it.” Words to live by for diabetics who are struggling with control. If you can’t know what’s in his food (e.g. a random number of bites of a big blob of lasagna at a restaurant with who knows what in the sauce) then get something else (turkey on whole wheat with lettuce, tomato, mayo and mustard – or a known number of whole grain crackers with a teaspoon of nut butter on each cracker and six baby carrots – something made of “components” that are easier to count) or cook/eat at home for the majority of meals (95%).

There are several really good books out there that will help you understand what he needs: “Using Insulin” and “How to Think Like a Pancreas” are both very helpful.

I’m a type 2 on multiple daily injections, and I’ve dropped my A1C by half just by getting real about exactly what I’m eating and by learning how to set up my basal, insulin-to-carb ratio and correction factor.

Until you know these four values, you’ll be shooting in the dark:

  1. exact carb content of each meal and snack
  2. insulin-to-carb ratio for his body
  3. basal rate for his body
  4. correction factor (how much insulin drops him how many points) – for bringing down his bg’s when elevated

Everyone’s body is different. You have to figure these out for him (with the help of an experienced and knowledgable professional, if possible, but only if they know what they’re doing.) Please note: if they recommend something called a “sliding scale” then they’re behind the times and you need to look elsewhere for more up-to-date help.

I haven’t had a poke come in over 160 in the past ten days – 95% of them are under 130. Before I found TuDiabetes and started reading and learning, they used to be over 250 on a daily basis – even up into the 380 to 420 range several times per week.

If I can do it, then anyone can. I mean that from my heart. Take care, we’re rooting for you!!!

I’m wondering if two daily shots of Levemir might be better than the Lantus for small children, as Lantus has a tendency to burn during/after injection?

Just a thought.

I honestly don’t know what insulin is best for small children – but I do know that I hate the burn from Lantus, and I’m a ‘big girl’ of 54 years. ;0)

I am another one that would suggest getting Using Insulin by John Wash or Think Like a Pancreas by Gary Scheiner. You will get more understanding about using insulin from those books than you are getting from your doctor.

I am one that hates logging but sometimes when you are having a problem, it really does help.

If you are using one shot a day of Lantus, maybe splitting it into 2 will help or even consider switching to Levemir (or vice versa if you are using Levemir & that is not working).

Sometimes prebolusing for meals helps – if your son takes his injection 20 minutes before eating, it helps with some of the spikes.

He doesn’t use lantus nor levemir, he uses NPH.

20 minutes with novolog for a 3 years old child is too much and too dangerous (the child could eat slowly).

If my daughter has a good BG pre meal, we do the injection just before or 5 minutes before meal.
If she’s high, no more than 15 minutes before. Otherwise better to give immediatly a correction bolus and than bolus just as usual.

As a side note: measure BG 30 minutes before meal so you can decide what to do, give sugar if he’s low or correction bolus if high or do injection 15 minutes before …

It can also be useful to test twice, like if you are testing 1/2 hour before, test again in 15 minutes and it will show you if it’s changing?

One other thing I’d add is that when I got my pump, the doc or SalesNurse mentioned that NPH (which I used until 2008…) had only a 53% chance of peaking when it was supposed to.

I think Lorraine has given some great, clear advice/information. I suggest you make that wise mom-of-a-D your BFF!!

All I can offer is good vibes and hugs and a “hang in there”!! We all know this isn’t easy!!

Just a thought…we all know the benefit of physical activity. But I’m wondering if it might be wise to delay introducing that into the mix for a short time until his blood sugars are a little better controlled. I can’t imagine really feeling like participating in sports with blood sugars this high. My opinion, and worth exactly what you paid for it!

I would like to thank everyone for their advice which my wife and I will
Take to heart and put into practice. I would like everyone to pray for us to
Get this down packed so our son (Ryan) can be better controlled. And also, happy mothers
Day to every mother and single dads.

There has been some proof that using an insulin pump reduces the a1c. I have a friend that her daughter’s was about the same as your son’s, the endo started her on the pump about 3 months ago and her a1c now is 9.8 compared to 11.2 which was her a1c before. So I would really consider the pump. Prepare your self, take the classes and educate yourself on it, the pump is not as bad as it seems and once you get the hang of it, you’ll feel secure.

That is not true for everyone. My A1c went from 5.7 to 6.1 because of all the site problems and two pumps that died and had to be replaced in a matter of a few months. I decided to go back to MDI and the first week back on MDI, my average was 10 points lower than with the pump and my standard deviation was a lot lower.

Your targets are way too high. I vaguely remember when first diagnosed and on MDI, initially, her target was 120 to 150, but we could not correct until 200 because we couldn’t give small enough increments. We have a two hour postprandial target, which used to be 200 and now is 150. Yes, have the endo train you so you can adjust his insulin. Once you are able to do that, you should see a huge improvement in his blood sugars. I see you are from Brooklyn and would like to recommend the Naomi Berrie Diabetes Center on 166st street between Broadway and St Nicholas Avenue. We see Dr. Gallagher. Went there one month after diagnosis and her A1c was 10. It was down to 5.6 within the month (of course she was honeymooning). But A1cs in the 6s since. You will receive excellent care and training there. They take most insurance; we have changed insurance many times. Good luck! P.S. I cannot emphasize enough you need the appropriate training and believe me you will get it at Naomi Berrie.

We are taking great strides with this wonderful info that everyone given to us. My son is on lantus. We have ordered the recommended books. Thanks everyone. We’ll keep everyone posted. May God bless everyone.