Misdiagnosis

I brought my son for his first post-hospital stay follow up with his endocrinologist. Great team but I really don’t like the dietitian. It seems she has no enough knowledge to help us and there is no connection between us.
One thing I would like to share is that I feel pretty sad that the medical professionals don’t possess the latest knowledge about type 1 diabetes. My son has been very sick for months but the doctors failed to recognize the low energy are the symptoms of this illness.
Recently, I have give a lot of thoughts about this painful medical experience. For months of misdiagnosis, I witnessed an energetic child finally developed DKA and then now these doctors suddenly realized, aha, he had type 1 and he needs insulin. I am sorry if I sound too negative. Couple days ago, it is still too painful for me to think back about the journey to get correct treatment for my son.

Hi @Glucosebee . It’s sad but true that many doctors have only a textbook knowledge of Type 1, which is still only a small percentage of diabetes cases in general (a couple of fairly recent statistics estimate Type1 between 5 and 10% of cases).
Keep in mind you are free to find another practice, one that better suits your needs. A physician who is board certified in their specialty will be better able to help you as they have done more extensive study in the field. If you were referred to an endo who is not board certified in Type1 keep looking. I’m very surprised that the dietitian didn’t seem knowledgeable. If you’re otherwise happy with the office and physicians and want to stay with that practice, bring it to the attention of the office.
Diabetes symptoms can be mistaken for other things, although we would expect doctors to be more comprehensive as they are considering what could be causing the symptoms. Sadly it may be the uncommonness of Type1 that causes them to look elsewhere first, but I’m not trying to make excuses.
I recommend you read the book Think Like a Pancreas by Gary Scheiner. He has Type1 himself and works in the diabetes field as a certified diabetes educator, pump trainer (he uses one himself) and exercise physiologist, so he offers both a personal and professional perspective. It’s actually a fun read and many people find it helpful. I read it for the first time a couple of years ago and I’ve had Type1 since 1963!
Keep up the good work advocating for your child.

Thank you for your input. I heard this book from you and other friends here so I got it from the library. I am reading it and it is great book. At least he is offering some true facts about T1D.
We are in San Diego. There is only one place we can go to get this treatment, Rady.

Only one location? I’m surprised - that’s frightening. In the Resources tab you might be able to find local groups in your area - sometimes they know of “hidden gems.” Last year, due to the pandemic many of my doctor visits are done via zoom meetings. You’ll want to see your doctor in person as you’re learning, as they’ll want to do physical checks etc. But a nutritionist might be able to meet via Zoom or similar to teach you online. Learning to measure portion sizes may be easier in person but not impossible from a distance - so you could check with your insurance to see if they have any other nutritionists in their plan.

@Glucosebee , it is unfortunate that it took a little time to diagnosis your son; what was the “Misdiagnosis”?

As Dorie @wadawabbit said, there are certainly other physicians/practices in San Diego where your son can enjoy assistance living with and managing his diabetes and where you will find support.

A good place to start finding other practitioners is to talk with other people living with diabetes, for instance by contacting the Sothern California JDRF Chapter; two gatherings of this Chapter are scheduled this month in San Diego. Here is a direct link: Southern California Chapter – JDRF
Much more information is available to you on the JDRF webpage [ jdrf.org ] and by clicking on the “Events” and “Resources” tabs at the top of this page.

PS - when it comes to foods, some of us on the forum have been around long enough to remember “the diabetic diet” from way back when: it was a short list of foods which people were to follow strictly. Then there was “the exchange plan,” with different lists of foods, and you could exchange foods from one list with those from another. Thankfully our choices are much wider now, with the focus on understanding the carbs in what we eat, and how to balance those with insulin; and how certain types - such as fatty ones - may cause a delayed rise in glucose even if we count the carbs correctly.
I think you’ll find you’ll be focusing on making sure he gets the nutrients he needs at every stage, much the same as any other growing child. That said, a dietitian can help you learn good snack options to help him stay level during exercise and overnight.
If you don’t mind my asking, how old is your son and how long ago was he diagnosed?

Not at all. I learned so much valuable knowledge here and I really appreciate all the input here. My son is 13 years old, he will turn into 14 this October. He used to be very physical active before this illness, but no more. He often feels sick with nausea and headache. He has severe headache. He has magnesium and vitamin d deficiency. Has constipation and his heart bothers him. If you can share your knowledge, that will be great!!

Have you seen a connection between his numbers and how he feels? As you know our bodies often tell us when something is going on with our levels. Fingersticks area good but a continuous glucose monitor or CGM is an invaluable tool. In addition to seeing the numbers at a glance you can also see whether they’re stable, rising or falling - and your son can share his numbers with you. The options are Dexcom, which in addition to giving numbers can work with an insulin pump to adjust for high and lows; and Freestyle Libre: this one does not work with a pump but does give continuous readings. Both give updated readings every 5 minutes. I use Dexcom with my pump but keep a Freestyle as a backup. While it doesn’t have the bells and whistles of Dexcom I found it worked very well and gave me readings in line with my fingersticks. Freestyle is much less expensive and in my opinion is great for someone who doesn’t need the advanced features when used with a pump.
All that is to say using one might help you see if there’s a correlation between his numbers and how he’s feeling. Sometimes the symptoms improve as the numbers do - it may take a little time for them to “stabilize.”
The stress of diagnosis could be causing some of his symptoms, and working with a counselor might help him to adjust. Keep working closely with his doctor.

Most of this diet stuff goes away if you get an insulin pump. Everyone should eat a balanced diet but there is virtually no “I can’t eat this.” You put the carbs of what you are about to eat in the pump and it takes care of it. It takes a bit to calibrate but it has changed my T1D so I seem like a “normal” person. You don’t even have to eat at certain times. Eat when and what you want. Check it out!!

My son told me he would like to try insulin pump. The doctor office told me he needs to graduate to the insulin pump.

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Thank you for sharing the news!
Before I go any further I want to ask how your son is doing since your post the day before yesterday. It’s he feeling any better?
I don’t know if newly diagnosed diabetics are typically started on a pump right away or not, but graduating to one is not a bad idea. Technology is wonderful but it’s good to know how to do without it, too; so knowing how to function on injections and manually manage highs and lows will be helpful if he ever wants to take a pump break out if something happens and he has to wait for a replacement to arrive.
How long does your doctor want you to wait? They may want to make sure your son and you have a good understanding of diabetes and what a pump can and cannot do - all part of the learning process, so don’t rush it. And you can take the time to study the three options to see which one you think would be best. Minimed and Tandem TSLIM are the ones most commonly used but Omnipod - the only tubeless pump - is popular as well. Pumps typically come with a 4 year commitment (that ends when the warranty runs out) so you’ll want to choose carefully - don’t let your doctor pressure you to choose a pump you don’t want. It’s your choice.
Again, as in school, use the time well and study hard - in this case research the pumps - so you will be prepared when you graduate.

My son doesn’t function well. He had been back to school for a week. And suddenly he can not wake up in the morning. This is the third day he is going to miss the school. I touched his face and did finger stick test, he was still in “sound sleep”. Another day to miss the school.

Do you think bringing him to ER is going to help us figure out his condition? I can not tell if he is in coma or in deep sleep or something else? How can we get him into ER?

If you can’t wake him up call 911. What was his fingerstick number?

His sugar level is increasing but in the normal range. For two days, we could not wake him up but around 10am, he woke up. Depression, I don’t feel so.what else can cause this symptom?

It is 121. But he woke up around 10:00am Fir the passed two days. I don’t know today yet. I am working and has no chance to call home yet:

Thank you for checking back in, especially since you are at work and of course I’m very glad to hear he woke up. A couple of suggestions I would give you: if you can’t wake him up do a fingerstick right then - that will let you know of his numbers are low, good or high, and that will determine if it’s a diabetic emergency or something else.
Did your doctor prescribe a glucagon emergency kit and teach you how to use it? It’s for low blood sugar - often the person can take on glucose tablets or gels, juice or something else to help raise their numbers, but if they’re not able to take anything orally then glucose is administered to start treatment before 911 arrives.
Regarding what else may be going on, you could call your endo and describe the symptoms, and see if he should come in. Another option would be to take your son to see his primary care physician (PCP) to help determine if something else is going on. Your endo manages diabetes and certain other conditions, but the PCP has a broader range of knowledge and can do testing your endo does not.
Please keep in mind that your doctors or 911 should be your first resource when you have concerns - especially if you feel it is an emergency situation. The forum is for getting support, and suggestions of things to try for those who have a certain level of experience and comfort with self care. But it’s not the place for direct medical advice - that should come from your doctor who knows your son and is familiar with what’s going on in his body.

I think part of what you are describing is part of the grief process. I remember looking at my gaunt son who had lost weight in the icu that night and kicking MYSELF for letting it go so long. He had ALL the symptoms, possibly back for 18 months. They could all be explained away… until they couldn’t. His Dr missed them and I (a NURSE) missed them. It’s just not what everyone goes to first. But the shock and anger, etc are part of grief. I’m sure your son is grieving as well. These fist 3-6 months are very hard. Learning to dose and count is restrictive but important. We got our son on a pump after about a year and now when equipment fails, etc at least we have the confidence to know what to do with a syringe and vial. It will get better. We are blessed to live near the Barbara Davis center (diabetes exoerts) and have a great team. I wish everyone could!

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Thats BS get anothet Endocrinology i’ve been through 2. My Son us 8 git diagnosed 2 months ago. We have the Dexcom and tbe T slim pump.have Dexcom for 7wks and Pump for 3 days. I do see things getting better with pump. He would just drop 100 points in 15 minutes and got to 500’s. I have 2 grown healthy children. My 8yr was healthy. Came out of nowhere. Had DKA in hospital for 5 days. School has been very Hard. He was home for 5 wks. With a tutor. Now have 504 law implemented. I try to do low carbs woth him 17-35 each meal. Very newly diagnosed I’m exhausted. If anyone can give me some tips for BS spikes. He eats the same foods sometimes and one day will be low and with the same food will be high. Still getting to know his pump. Love the excercise mode. Keeps him 140-180 for school. We probable ate going to change his Basal rate.

Do you have the 504 law implemented. My Son newly diagnosed 2 months ago. In hospital for 5 days with DKA. 5wks out of school with virtual tutor. Now back for 2 wks. But has missed 3 days. He has a dexcom for 7wks and we just got T-Slim pump 3 days ago. Im starting to see some light at end of tunnel. But my son is a litte upset bc having the pump makes diagnoseis final. Its not easy. Good luck