13 year old maybe developing Type 1

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WIJ1999 posted on Mon, Jun 24 2013 5:47 PM

This is my first post on the Joslin site.  And I am sorry it will be long.  I would love to "talk" and hear other people's opinions.  I am in a confused state as to what to do about my son. My 13 year old boy started seeing an endocrinologist at a wonderful research/teaching hospital in NYC - so I know he is getting good care - because he is small for his age.  He has eosinophilic esophagitis/EoE (allergies, most likely to food(s) that ultimately affect the condition of esophagus, but mostly affect him by presenting with gastric symptoms. He is doing well, and has a very full diet.  He sees a GI and an Allergist too.  His original elimination diet was probably the reason for his small size, but I wanted to make sure he did not have any GH problems. We've put that on hold for a bit.  Fast forward to the last set of bloods taken to see about the growth hormones and his HbA1c came back at 6.4 and his fasting came back around 140.  (The numbers are a bit fuzzy now).  He went in and had a bunch more blood work done in office and some sent out. Again, the #s are a blur.  They are written down, but discussed loud and clear.  For the three weeks since, we have been doing finger stick tests.  Overall picture:   His fasting blood glucose, no matter what the source, average between 120-130.  His post meal, run anywhere between 140-180.  Occasionally they have been over 200.  And that is since cutting out ALL concentrated sweets. No juices, no soda, no candy, etc.  His Type 1 tests for the markers came back negative.  We were told 10% of kids still develop Type 1 even though they come back negative.  Dr. told us his OGTT showed that his insulin level was higher but not nearly as high as it should have been, given how high his blood sugar was 2 hours after the test.  But he is still making insulin.  The Dr. thinks very strongly he is on his way to Type 1.  And regardless, these glucose #s are too high.  He's 13.  They should not be that high.  Do people agree?  She suggested a prescription of long acting insulin.  I jumped and said I will make sure he eats a great diet and get him out on a walk/run after every meal.  (When he did his 10 food elimination diet when he was younger, he was very malleable.  He was also between the ages of 7-11). He's a teen now and it is harder.  My efforts are not working.  He is not overweight, either.  I've been on insulin when I had gestational diabetes twice, and I wanted to wait until his diagnosis was more than just "impaired glucose tolerance."  Insulin is such a big deal. Another thing she is waiting to do is MODY testing.  (Husband just started a new job last week).  We were on Cobra, and want to give the Dr the new insurance info to use. Apparently it is a process getting approval for genetic testing. My father, who was not overweight had Type 2, and every member of his family had either 1 or 2.  I have Type 2.  I was thin my whole life except from 2007-2012. I am thin again.  But currently need Glucophage.  Diabetes seems written in the stars for him.   But right now he has a diagnosis of Impaired Glucose Tolerance.  I know what our Dr wants us to do.  And she is a good Dr.  I just keep hoping this is a fluke.  Or somehow related to his EoE.  But even if it were, it still comes down to high blood sugar.  General opinions from non Dr. people who deal with this stuff every day...is IGT dangerous short term, and what it considered short term? Sorry so long.  Do not need to go long again. Big Smile

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Debbie replied on Thu, Jun 27 2013 3:25 PM

I am glad to hear that you are working with a local pediatric endocrinologist.  It also sounds like the MODY testing would be a good idea if you can figure out a way to get the MODY testing covered.    There are two centers that may be doing MODY testing as a part of a research study, so you may want to contact these two centers while you are trying to get insurance coverage.  One center is the University of Chicago (kovlerdiabetescenter.org), or you could also contact Dr. Hattersley’s group in Europe (diabetesgenes.org).  Also we would suggest that you continue to follow the plan set with your child’s endocrinologist.  Good luck!

Debbie Butler, MSW, CDE

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WIJ1999 replied on Thu, Jun 27 2013 5:03 PM

Thank you, Debbie, for responding.  This "sort of" maybe diagnosis is really tough, given his Eosinophilic Esophagitis condition, if you know anything about that.  We have no reason, yet, to think MODY testing won't be covered. We just have to wait for new insurance coverage paperwork to go through.  But thank you for the notes on the research programs. Is Joslin a place where MODY is a well known subject?  I imagine it would be.  However, I do hear quite a bit, that even among, well reputed endocrinologists, not a lot is known about treating MODY.  Interestingly, even among well reputed GIs and Allergists, not there is little consistency in treating EoE.  Fortunately, I have a great team for my son.  However, we are likely moving to Boston in a few month. I could keep my NYC doctors, but I am counting on Joslin, Boston Children's, or Mass General to be up to speed with his needs.  But I have learned the hard way, even the best of the best sometimes don't meet everyone's needs. Is Joslin a major research institution in regard to MODY?  And if it isn't MODY.  What direction, via my own steam, should I consider.  I know my Drs are who I trust.  But in the end, he is my son.  Thanks.

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Debbie replied on Fri, Jun 28 2013 10:59 AM

The Joslin providers and researchers certainly know a lot about MODY diabetes.  If you move and you would like to schedule a consultation with one of our pediatric endocrinologists, then you can call 617-732-2603.  Good luck!

 

-Debbie Butler, MSW, CDE

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Answered (Not Verified) Marksk replied on Wed, Jul 10 2013 6:08 AM
Suggested by Marksk

When I was yound about 17 I got really ill and couldn't figure out why. At 23 I went in for an operatio and I was told I had diabetes which meant very little to me.Following glucose tolerence testing it was confirmed my system wasn't 100% and went on a strick diet only to control blood sugars. i was also given tablets to supposedly help reduce higher blood sugar readings - not a winner. Now a simple test to see if i have an antibody which is strongly related to onset of type i diabetes. Do they do that testing over your way.

 

My life didn't improve till I started using insulin and that was when I was 24. I am now 57 and using modern generation long acting Glargine split day and night with Novo rapid at meal times or when i have an odd snack. The critical item is blood testing along with being shown how to measure carbohydrate intake versus units insulin to balance with a target of approx 50-55 units per normal day total.

Exercise is an absolute necessity as is monitoring weight and keeping a reasonable balance of meat with not excessive carbohydrate.

Blood testing

when I wake up breakfast ( not much food) then test 2 hours later should be 4 to 9 and get back to same levels after

Repeat for lunch

Repeat for tea

test before bed time and aim to get about 6 with night glargine able to ensure I wake up between 4 and 9. Takes practice but critical part is blood testing so you can get a good balance and maintain a good weight . At 5 - 8 I weigh 178 to 180 kgs and have done for a longtime.

Exercise is only limited by you not the diabetes or insulin. I do a lot of hunting and high country farm work and cycling when ever and over extended periods with no drama. Long periods of steady light or heavy exercise are great the best I have done is 18 hours in 24 hours including sleeping out on the side of a mountain when we got lost at night in the clouds - cold but not fatal. Like all things start small and build up don't expect to do it tomorrow and remember to reduce night insulin by approx 20% that evening and keep jelly beans handy is you will get a flow on effect if hard day on hill. On a 4 day hunting trip I keep my night insulin 20% less sometimes a couple of units less on day 3 and 4 I also lift my food levels to cover heavy exercise ( especially eating more meat, peanuts, tin fish etc) and try and eat basic carbo such as bread rolls rather than lots of sweets and sugar except if low blood sugar while hunting. You may have to lift blood tests especially if feel odd or light headed.

At 57 I can climb from 2400 to 6200 feet leaving at 6am and getting back to hut at between 6 and 10pm day after day including carrying back Thar and venison my rifle and gear. Not many of my friends can keep up which proves that don't handicap yourself just because of diabetes.

If I look back I would have (1) not wasted time with low level doctor advice go and see a good up to date specialist initially ( 2) ignore all the alternative rubbish it doesn't work for type 1 diabetics (3) drink in moderation and use diet drink and beer (4) don't eat too much commercially made products (5) start exercising and make it a must do each day - walk to shop, walk the dog, go to gym etc mow the lawns etc etc (6) keep protein levels up mix with carbohydrate but don't pig out - at 50-55 units insulin good diet your weight should be stable and you should look lean for a male (7) learn how to balance carbohydrate and fast acting insulin so that it is second nature keep food portions smaller ( 8) learn real fast what the signs of too high blood and too low blodd sugar feels like - for me high is sleepy, grumpy and quicker to angry if real high eyes get blurred, low is lite headed, pinched face , good humour speech slows  - very low is rapid heart beat, harder to breathe and sweats (jelly beans, normal cocacola, honey all give a quick recovery approx 10 to 15 minutes don't over eat to recover as blood rockets up).

If you are blind or have a crap kidney you are unlucky if you have type 1 diabetes life is pretty much normal and there is not much you can't do if you learn how to do things in control ie test blood regularly. Get on with life and keep trim exercise every day some days no matter what you do blood numbers are out so what it won't kill you if one off's and don't use it as an excuse for not doing things or invent other complaints to go with it life is short dead is a long time so they say.

If you have the opportunity to be involved in testing research worth doing as you will learn alot about type 1 diabetes and how it can affect you and best ways to ensure you have good days most of the time. For example 2 years ago I was 1 of 14 people that had live pancreous pig cells implanted in my stomach. My level is apprx 1.2 million cells which is the highest level . This is the early step in trying to find better treatment of this issue one of the incredible features is that normally live animal cells in a human body triggers severe rejection yet I have never been slightly affected or ill and take no antibody treatments. This technology is NZ developed and now being trialled for live cell implants in Parkinson patients another debilatating complaint. 

When are you getting your first road bike and joining the local cycle club so that you can get out on the good fine days and knock up 60kms ride it was the best exercise I cottoned onto we always try and get out each weekend minimum as steady exercise which works well when you are on insulin.

If you go onto insulin it is not an end to life it is a minor adjustment to your life set some goals around adventures and setup to do it get some friends that also want to give it ago start early and keep going. Last note the worst thing to get is some form of vomitting bug as on insulin you can't get sugar into your system and the long acting insulin keeps ticking along dropping blood sugar levels. Don't wait get help. If you are out and about and get caught out with low blood sugar and no food/money ask for help I have never been let down by a stranger yet and when you have a strong hypoglycemic event especially as a new type 1 thinking straight is very difficult. After 34 years on insulin i can handle blood sugars at 2 safely but I have had 3 trips to hospital one in a coma more reflecting the old type insulins some of which were very aggressive for me when blood sugars were low 20 years ago.

Get on enjoy life you'll have alot of fun on the way maybe some of my experiences will make it abit easier on the way. Both my kids have been tested and none have the antibody causing type 1 diabetes.

 

Mark

 

Christchurch

New Zealand

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Debbie replied on Thu, Jul 18 2013 4:24 PM

Hi I am sorry for the delay in my response. It is true that diet and exercise are a critical part of managing diabetes and that it is also very important to carry around fast acting carbohydrates, like glucose tablets, to treat low blood sugars.  I also agree that it is important to find a health care team that is knowledgeable about type 1 diabetes.  I am glad that you have found positive ways to take care of your diabetes.  Thank you for your message. 

-Debbie Butler, MSW, CDE

 

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