What am I supposed to do now?

The Doctors put their two sense in (basically a verdict) and said they see no sense in a toddler, why a toddler should have a pump. Then they continued to rip on me for checking her much and letting her have 3 snacks a day between meals and one before bed. They told me that because the snacks and checking her so much and her numbers being all over, I am chasing our tail on this. They don’t want my daughter to eat any snacks except for bedtime and only check her four times a day. I am more sick to my stomach now than I have been in this two years journey. I told the doctors my reason for a pump and since I was int he hospital for a few things, they told me that with all I have going on that I do not need another thing to learn and on my plate. It took every part of me not to cry… Sophia has been telling people “I’m getting a inswin pump for christmas” for the past 3 months and now I feel like I let her down. My daughter Lost 10lbs and grew 3 inches the past 6 weeks and she is always hungry. What to i do now?

Are there other doctors in your area you can take her to?

First, don’t cry. You didn’t let Sophia down. It’s important that she understands that this isn’t a toy and that it’s not something that’s easy to get, and this may actually help her to value it more when she does get it. Second, if your daughter is hungry, feed her good food and give her insulin appropriate to her needs. Plain and simple. That’s what we all do!

As for your doctors, they are flat out wrong. You can show them this: http://www.medscape.com/viewarticle/462784 and also this: http://www.ncbi.nlm.nih.gov/pubmed/16386093?dopt=Abstract to offer them research evidence that insulin pumps are useful in young children. The key sentence in the second article is this: “There was a 22% decrease in the BG variability (mean +/- SD 93 +/- 19 mg/dL vs. 72 +/- 5 mg/dL; P = 0.02) and a 13% decrease in A1c (8.6 +/- 0.8% vs. 7.5 +/- 0.7%; P = 0.01).” The fact that BG was more stable and the A1c was ~ 7.5 in the kids in the study who used a pump versus 8.6 in those who didn’t should be enough to convince them. If that doesn’t do it, find the nearest pediatric endocrinologist, someone SPECIALIZING in treating children with Type 1 Diabetes, via the internet and insist on getting a second opinion from someone whose major area of practice is pediatric diabetes. Because I cannot and will not believe that these doctors are pediatric endocrinologists, nor can I buy the idea that they’re well versed in Type 1 diabetes in infants and children, based on what you’ve said.

Insulin pumps are becoming the standard of care for most young children. My ped. endo. wanted to put Eric on the pump the same minute he was diagnosed at 18 mos and was disappointed that he could not because there was no insurance coverage at the time. If they do not see the sense in having a toddler on an insulin pump, they’re clearly behind the times. And as for only testing four times a day?? Are you SERIOUS? The medical literature makes it quite clear that more frequent checking = better BG control = better long term health. My ped. endo. prescribed 10 checks per day when he wrote the script for the test strips – I don’t often test that many times but it’s essential that I test at least six times–first thing in the AM before breakfast, 4 more times before each snack/meal, and bedtime. And yes, Eric, who is also 3, gets a snack between meals… because that’s what kids that age NEED. Point of fact, that routine wasn’t initiated by me – it’s the standard practice used by my day care provider, Michelle, who has cared for literally hundreds of children and who follows the practice her mother used when SHE ran the daycare for 30 years before Michelle did! So you are NOT wrong to give Sophia snacks between meals, and these docs need their heads examined to say you are. I don’t usually give Eric a snack at bedtime unless he’s lower than 100, but that doesn’t happen often.

One thing I might suggest though, is that when you give her snacks, make sure they’re balanced snacks – that means, carbohydrate + protein + fiber. So, like, a whole wheat cracker with some cheese, or peanut butter and celery, or grapes and a glass of milk. The reason being, you probably will have less wacky fluctuations in her blood sugar levels if you do this.

By the way, the one place the docs may have a point is where they say that “with all I have going on that I do not need another thing to learn and on my plate.” Using an insulin pump is different from giving shots and there’s quite a learning curve to it. It is not easy and it is certainly not as simple as the marketing literature makes it sound, and there are some distinct DISadvantages along with the advantages. Given what I know now, would I still put Eric on an insulin pump? Heck, yeah… but if I’d had the choice, I would have rather learned how to do the pump thing from the start instead of doing 10 months of shots before having to pretty much start over from scratch learning how to do the pump thing. It can be pretty stressful and demanding for the first few weeks & months till you get the hang of it. There will be sleepless nights involved, definitely. So if you’re not currently in the pink of health, take their advice and let it be for as long as it takes to get you back on track physically. It will happen, I’m sure it will, but you have to just ride the wave until it does. Concentrate on doing your best you can for your daughter AND yourself, and it will all be fine in the end, pump or no pump. It’s not about the gadget you use, it’s about the care you give her.

I AM SO SORRY!!! Being a diabetic momma is SO SO HARD! I have a friend that son is 18 months old and has an Omnipod for over 7 months! My son 8 now asked Santa for a pump for Christmas last year (Poor Santa probably had no idea what he was talking about ~ But it brought ME TO TEARS!!!) HE did start the pump this year the day before Halloween.
We have only been diabetic for 18 months ~ Omnipod pumping for 3 ~ SO I am NO EXPERT!!! BUT I think it is YOUR CHILD and you need to stick up for her!!! Is it possible for you to see another doctor and get a second opinion??? We have found that different doctors & nurses have different feelings about pumps (parents do too). Our doctor wanted us to be familiar with diabetes for one year before we switched to a pump.
We went with what she said ~ BUT I was READY to fight if I needed to!!!
I say FIGHT hard to get another ENDOCRINOLOGIST! See what they say~ It sounds like you may need a NEW plan as she is growing.
I am SO SORRY for what you are dealing with!
Please keep us posted!!!

I am military spouse, I can get a referral out and plan too… but I feel like it is taking hundreds of steps back.

My husband when I told him the news, he was standing on duty. He used every bad word in the book for what happened and what those women did. Leading people on for damn near four month to get a child on a pump then do a 180 is just horrid. I want to tell our primary to see if he can put in a consult for us out to Children’s for pediatrician and endocrine. I have had two friends tell me to stay and see what their plans are, but every time I go to an appointment I feel emotionally drained and almost physically drained from them. They have yet to let me see a dietitian, they said i had an appt today at ten and when i showed up its was the dr and the nurse prac., not the dietitian and they said they called me and spoke to me to change the appointment but i was in the hospital. All I want is to get her sugars stable and get her on a pump so she can go to pre-school and get ready for the school year and her dad actually be here for training before a deployment.

Well this is settled, before bed, 284bg, bedtime snack 23.5 carbs (motts apple sauce), 1unit for 100 sensitivty correction over 180-200 bedtime bg, 1 unit for for 1:20 I:C for the snack and 4 lantus. This eqauls 95bg in 2.5 hours after she is dead asleep.

New Docotr asap.

I see you are in Maryland. I am too. Dr Barry Reiner ( my daughter’s endo) up in Baltimore is an endo that is big on getting kids on a pump. I am also military so you should be able to get to him. He takes US Family Health Plan which is a form of tricare for our area. Yes you may be stepping back but keep up the fight for your daughter. We originally went to Walter Reed and the diabetic educator did not like pumps so I knew I had to get out of there because I was not going to get any help getting my daughter on one. She went on one less than a year after daignosis with Dr Reiner.

Military spouse here too!

Wow…we have an age difference in kids here, but I cant imagine telling my son that he cant have his snacks. When we first left the hospital, we were told his snack should be 15 carbs or less. I was sending him to bed hungry. After talking to his nurse shortly after, his snack carb was raised to 30. He has a morning snack at school most days. Then after he gets home from school he has another snack. After dinner is a hit and miss. But if he is hungry, he usually has a bowl of cereal and a spoonful of peanut butter (just to add extra protein).

Is there a reason you are checking her blood glucose so frequently? How many times do you check her a day? We check 5 times a day unless there was a low or high. Breakfast, lunch, after school, dinner and bedtime. I dont send him to bed without a blood glucose under 140. But we get strips to test up to 8 times per day.

My son cant wait for the pump, but we have to wait until he is out of the honeymoon stage. I would think that even though she is a toddler, managing her diabetes with the pump would be helpful for you. Are her blood glucose numbers not good and this is there reasoning?

Where are you located? Are you like the rest of us limited on children endos?

Ask your primary care doctor to give you a referal to a dietician. I had originally did this because I wasnt aware that we would have one through the doctors office. When it comes to what my son eats I dont listen to our doctors, only the dietician. This is her specialty and so many endos have been practicing back before the carb counting was used to treat diabetes and have yet to move completely to the new way of managing it.

Perseverance mom fight and don’t give up find a new doctor if you have to. Sometimes doctors think that they control it all and it’s not like that. I have been battling for 6 years to put mine on a pump too and I’m fighting all the way. Contact patient advocates and see if they can help you too. Contact the companies for the pumps and speak to them, sometimes they can put pressure too. Have her C-Peptide checked and if it’s low she qualifies for a pump. Insurance standards.

Elizabeth is right on the money on all counts.

My son Santi is 3 yrs old & his ENDO put him in a pump within 2 months of diagnosis. All directions given to Elizabeth have also been given to my Son (# meals/day, balanced snacks, pump therapy, etc)

My suggestions:

  1. You must get another DOC --whatever it takes.
  2. If your insurance covers pumps, Get the OmniPod-- best in the market for little ones.
  3. read “think like a pancreas”… best book I’ve read, while you get approval on the pump, you can apply the directions given here… (meals, activity, etc)
  4. Try getting approval for a continuous glucose meter-- DEXCOM is better for little ones (thiniest canula)

Best of luck, this group has helped me tons, and I’m pretty sure it’ll help you too…

Find another pediatric endo. Remember, they work for you and should be working with you. But, rather than go through the same thing all over again call up Minimed and ask them for a list of physicians or endos in your area that have a “pumping practice.” You do not have to get the Minimed pump, but I know Minimed Reps can help you out here. Interview the pedi endo on the phone before the appointment. Inform the endo you wish to immediately start on the pump and what are their provisions before prescribing the pump. Ours did have a three month wait period, while you researched pump, spoke with nutritionist, CDE and social worker. Some endos have pump class before prescribing. Some might just prescribe the pump in a shorter period of time. Growing children need to eat and there is no reason to put them on the sort of diet adult Type 1s may follow. However, even our endo does not recommend grazing, preferring she space three hours between meals and snacks. We try to stick to this but it is not an iron clad rule. P.S. I believe her regular pedi can prescribe the pump and the insurance companies will honor it. You do not have to use the pedi endo to get the pump. And the pump companies will train you if you go this route. But pedi endo team that you can fax numbers to and get advice from is necessary so hope you can find a good one near you.

time to find a new doctor…

What has been outlined to you is RIDICULOUS for a toddler with T1D! Every time I hear a story like this, I am so very thankful for our Endo and team! Others have given you very good suggestions. You need to remeber that dealing with T1D in a toddler is VERY different than adults and even older children. My son was DX at 20 months and is now 10. Some things I learned about T1D in toddlers…

• BGs can and will be very volatile much of the time. This is a very hard thing as a parent and I had many tearful talks with our Endo (after all, I view my son’s A1C as MY report card!) about how I could not get him stable no matter what I did. The fact is that toddlers are growing very quickly and every time the growth hormone kicked in, his numbers would be all over.

• Toddlers can be very insulin sensitive. My son could drop 200 points in an hour without even trying!

• Test, test, test. Do NOT let the DR. tell you that 4 times a day will cut it! It simply will not with a toddler (see the first 2 points)! We tested when he woke up, before morning snack, before lunch, before afternoon snack, before dinner, before bedtime snack and then any time he seemed off. That is at least 6 times per day regularly and it was usually closer to 8 or 10.

• Toddlers need snacks. Their bodes are growing like mad and they need the extra calories. As long as you are feeding her a well balanced diet, keep doing what you are doing. In fact, on the day of dx, our Endo suggested ice cream as a good bedtime snack for our son - carbs+fat+protein = nice even numbers overnight.

Just keep reminding yourself that you must be your daughter’s advocate. Fight for the standard of care you want her to have. I hope you are able to find a new doctor that partners with you in Sophia’s care rather than dictating some pre-conceived standard they have ‘always used for adults.’

I think it’s all been said by others who have already responded. It saddens me so to hear what has been dictated to you and most of all to hear of your daughter’s weight loss and their callous attitude toward it. My son was diagnosed at the age of 3 and was pumping about 3 months later. He will be turning 8 in a couple of weeks. Since pumping we have always checked his bg about 10 times a day and he has always had snacks - particularly at the younger age when their bodies need them. Not so much now because he can wait between meals. Nevertheless, if he wants a healthy snack between meals, he’s welcome to have it.

It seems you are committed to finding a new doctor as others have suggested and I have to agree whole-heartedly. The guidance you are getting is not for you. You need someone on your team. Not someone working against you.

Keep us posted as things progress.

Here’s a suggestion: in place of applesauce, try 4 oz whole milk (6 carbs) plus a half slice of whole grain bread (~10 cb) with maybe a half tablespoon of natural (no sugar added) peanut butter (~1 cb) or a slice of cheese (~1-2 cb). Grand total of 17 or 18 carbs, with a lot of fats, protein & fiber to accompany the carbs into the system. Balanced nutrition usually means better & more stable BG. Especially with a BG out of range high already, it’s better not to put more carbs into her system than you must at bed time… I’d say in that case, maybe skip the bread & PB and just go with milk, and maybe some celery sticks with PB if she wants something solid. One celery stalk is about 1 carb, and it has fiber too, so milk, PB, and celery makes for a nice, balanced snack that has about 7 carbs in it, enough to keep her going through the night but won’t overload her blood glucose if she’s already high.

we try and keep her eating habits the same at night, the new insulin adjustments suck, their a huge pain in the rear and very unpredictable. I have been doing a lot of low car things like tuna and veggies, cheese and veggies and diabetic yogurt and cucumbers. Than helps with the snacks… but meals are a little more interesting because she is in this phase where she will gag her self and act like everything is nasty, we are being firm and making her eat it because she picked the behavior up from a friends son. The endocrine team got mad a few times since this adjustment because we had two lows… like its all my fault. my daughter is so active I never know what carbs will cover her. Good thing is the highs are going down, thank god.

our hearts were set on a pump and when i told our primary and my psychologist about this they both were kinda worried. they said that the pump would benefit her in school and the earlier she starts the better. My husband is still angry as can be about the pump and he is fighting tooth and nail to find a provider close enough to switch doctors, I am just doing my best to figure out what is going on with all of this.

I havent been testing 4 times a day im too scared to not test, its still 7 times + a day.