Newly diagnosed 6 year old

Hello All,
My daughter got diagnosed with Type1D last sunday. She was in ICU for DKA. We are home now. I have some questions,

  1. Her sugar is staying around 500 wholeday even with insulin. What should we do?
  2. When can i get her CGM or pump or combo as it is hard to poke her finger and then for insulin again
  3. Also she think she is alone. Is there a possibility of her meeting some local kids in Boston area for her age?


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@Kalpesh.gupta Welcome to the JDRF TypeOneNation Community Forum!

These are only the first of the many questions you will have; diabetes is a lifelong condition that offers us many challenges. Feel free you post here often.

  1. Three are many reasons that her “sugar” readings could remain in the 500 range; no one here has seen her and looked at comprehensive testing - so we can’t provide a sensible response.
  2. A CGM could be very useful now - it is the best tool I’ve seen in my seven decades living with diabetes. A pump may be appropriate at sometime in the future - more evaluation needed.
  3. Joslin Diabetes Center, on Joslin Road alongside Deaconness Hospital in Boston would be an excellent place to begin.

Hi @Kalpesh.gupta and welcome to the forum. I’m sorry to hear about your diagnosis but want to let you know she can live a long, full life with diabetes. I was diagnosed at age 3 and celebrated 60 years with Type1 last year!
We can’t give medical advice so you should contact her doctor or a number provided by the hospital to call. You will be working with an endocrinologist to determine her treatment plan - if the hospital did not give you names look for one who specializes in Type 1 diabetes - not all do. You’ll be working with an educator to learn about diabetes, but I highly recommend you also check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. It will beat valuable supplement to your learnings.

Thank u for your support. I am just getting a little worried as her glucose keep up in day all day.

Is there a max amount of insulin you can give in whole day?
Also it seems my daughter is having allergic reaction with Lantus. Is that normal?

Sorry for all these questions

@Kalpesh.gupta, it is not common, but some people have reported allergy to a particular insulin formulation. Ask her doctor to prescribe a similar but different brand; there are several bands of background insulin available.

There isn’t a stated maximum daily insulin dose, but we all must be extremely careful to not overdose. Too much insulin could drive her into hypoglycemia which could be dangerous. Her doctor is aware that her BGL has been running high, possibly for a long time, and may not want to force her BGL lower too quickly.

Lantus burns. It has a pH of 4. (Meaning it is acidic) so it stings and can burn for quite a bit after injection which is not an allergic reaction. Allergic reactions would not be normal. What is she experiencing?

@joe thanks for replying. She starts itching whole body for 1 hr after the injection. It go away in 30 min but for that 30 min she itch really bad and keep crying.

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@Kalpesh.gupta some people do have allergic reactions to certain formulations of insulin but there are others your doctor can prescribe so let them know.

@Kalpesh.gupta talk to her doctor l, if it really is itching the doctor should be made aware.

@joe. Talked to her doctors andthey switch her to Tresiba for now and she had a nice night yesterday after the switch


@Kalpesh.gupta This is good news I’m glad they made it easier for her!

Yes for sure.

Also sorry for this naive question, but how to do make a decision to which doctor or team you choose. we live in boston area, so we have an option for MGH or Joslin. we are debating between both. Any thought suggestion?

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What is MGH?
Joslin is a renowned diabetes center, known for education, research and treatment. I would say you can’t go wrong there but it’s also a matter of finding a physician who is a good fit. If you’ve ever tried to find a doctor for yourself - whether a general practitioner or ObGyn for instance - you’ve probably found you were more comfortable with some than with others. So you’ll want to find someone both you and your daughter are comfortable with, whether at Joslin or elsewhere.

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MGH : Mass General Hospital. Thanks for the suggestion.

@Kalpesh.gupta Pick a doctor or group that is likeable, honest, approachable, responsive. It doesn’t matter which it matters where you feel comfortable.

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@Kalpesh.gupta, I haven’t had experience at MGH fir diabetes, but I’ve had firsthand reports that the diabetes care - especially for what appears to be an impressive breakthrough.
I have had 34 years of outstanding results at Joslin before moving to Florida 25 years ago. Almost every doctor I encountered there was outstanding and helped me learn self-management. What I liked about Joslin was my personal involvement in cutting edge tools and experiments - some really successful, others have gon by the wayside.
I’ll paraphrase @Joe, choose a doctor at either facility (some doctors are/were affiliated at both facilities) with whom you can relate and with whom both you AND you daughter are comfortable.

Ask away. There’s a reason this forum exists! We’ve all been newly diagnosed or had a newly diagnosed family member at some point, whether 50+ years ago or just one year. We know what it’s like. The first year is whiplash- there’s so much to get used to as you find a new normal.

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Thank u for all your support. Another question, I am able to get dexcom G7 approved for her. We will recive it tomorrow. Is there anything specific thing i have to do or just follow instructions?

I imagine you will be working with a representative/trainer to learn how to use it. Your doctor’s office will probably coordinate it, so give them a call when it arrives. Some devices also have some online video with a quiz you must pass to get started but I’m not sure if this is one of them - the rep will let you know.

@Kalpesh.gupta From your very first post above, also please check out the JDRF chapter for New England and please search facebook for local support as well.

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