Update on Tessa--Opinions appreciated

[tymaxtess]

Well... the dr. consulted with the endocrinologist and we are not getting a referral. The endo said she was not alarmed by Tessa's numbers and that we just need to wait until more obvious symptoms appear.

Tessa has had normal fasting blood sugars, but then numbers ranging from 150-202 after she eats. She has been over 180 at least 4 times. The endo said she could have an "irritable pancreas" from some illness or that she could be destined to develop Type 1, but that it could be years away.

So.... here are the suggestions I was given. Stop checking blood sugars, no antibody test or glucose tolerance test to be done, and modify her diet to include "mixed meals" of carbs and proteins to help decrease the strain put on her pancreas and hopefully delay the destruction of beta cells and the emergence of Type 1.

What do you think of these recommendations? Would you stop checking bg? What about the glucose tolerance test? Has anyone's child been diagnosed using that test? I have been having Tessa see the family doctor, who has been consulting with the endo, but I could go back to the new pediatrician who originally recommended the glucose tolerance test if that would be helpful. Apparently the endo thought that antibody tests and gtt was not very helpful in making a diagnosis.

I can't find any info about an "irritable pancreas"--has anyone heard of that? I have found info that bg levels can go up during illness, but Tessa no longer has any illness or infection. The endo claims that her pancreas could still be working at less than full level, though.

Anyway, any ideas or thoughts would be appreciated. As of now, we are told to be careful with diet, watch for symptoms, and get an a1c in 4 months...

[iamslh]

Well... the dr. consulted with the endocrinologist and we are not getting a referral. The endo said she was not alarmed by Tessa's numbers and that we just need to wait until more obvious symptoms appear.

Tessa has had normal fasting blood sugars, but then numbers ranging from 150-202 after she eats. She has been over 180 at least 4 times. The endo said she could have an "irritable pancreas" from some illness or that she could be destined to develop Type 1, but that it could be years away.

So.... here are the suggestions I was given. Stop checking blood sugars, no antibody test or glucose tolerance test to be done, and modify her diet to include "mixed meals" of carbs and proteins to help decrease the strain put on her pancreas and hopefully delay the destruction of beta cells and the emergence of Type 1.

What do you think of these recommendations? Would you stop checking bg? What about the glucose tolerance test? Has anyone's child been diagnosed using that test? I have been having Tessa see the family doctor, who has been consulting with the endo, but I could go back to the new pediatrician who originally recommended the glucose tolerance test if that would be helpful. Apparently the endo thought that antibody tests and gtt was not very helpful in making a diagnosis.

I can't find any info about an "irritable pancreas"--has anyone heard of that? I have found info that bg levels can go up during illness, but Tessa no longer has any illness or infection. The endo claims that her pancreas could still be working at less than full level, though.

Anyway, any ideas or thoughts would be appreciated. As of now, we are told to be careful with diet, watch for symptoms, and get an a1c in 4 months...

This sounds a lot like my daughter at her diagnosis. Gracie had not had a blood sugar over 180 but consistently was having high fastings (125-160) and higher pp (150-180). She also would start developing ketones as soon as her blood sugars were up over 150 and she would just feel real crummy. Gracie's doctor started her on a real small amount of lantus, and I've been told by her general ped. and her endo that there has been some research to show that the earlier you start them on insulin, the longer you can draw out the honeymoon period. We got the diagnosis, and now I have been watching her blood sugars slowly climb. Not her PP, but her morning fastings once we started insulin were in the 80's and are now again in the 130's. Starting the insulin a little early helps Gracie feel better because she rarely develops ketones (She doesn't hang out over 150 now though as far as her sugars are concerned) and it really really helped her mood. She has adjusted well to the shot, and it gave me a chance to have time to train day care staff on things like carb counting, watching out for hypos (although we've never had one) and how to test blood sugars. It is nice because things aren't critical stage for these things so we have time to learn them all, and when she starts needing a fast acting insulin with meals, everyone will be trained and already familiar with diabetes, so there will be less to learn at once.

[iamslh]

I forgot to add that if you are really concerned (I would be, but that's just me) I would seek out another endocrinologist and keep logging those sugars. Gracie, while I was logging hers, would have a really good day, and then have a day where she was all over the place, and it really helped us see what was going on taking the sugars. I also started testing her ketones regularly. One thing with Gracie is she doesn't do real bad after meals, but through the night she will run higher than any other time of day. At times it was just a matter of catching the high.

[tymaxtess]

Did your daughter have symptoms like the thirst and excessive urination?

[selketine]

Was the endo a pedi endo?

I think I'd get another opinion from a pedi endo.

By the time obvious symptoms appear most kids are running really high numbers and feel crappy! Why would you want to not check and wait for those type of symptoms?

I personally wouldn't stop testing her every now and then. I don't know how often I'd do it but at least 1x or 2x a week (I'm not sure how often you test her now).

In hindsight I really think William started developing diabetes perhaps 2 -3 months before we caught it. He was eating more and more and was irritable. I chalked the behaviour up to "terrible 2's" as he just turned 2 but I think that wasn't it. When the BIG symptoms started happening (peeing and drinking so much) it didn't take long for things to go downhill.

[muddymessalonskee]

I would continue periodic testing (once a week, once a month?) at times likely to yield high bg's...maybe a fasting once a month... We should have been doing MORE testing in our family; it would have prevented my son from having had an A1c of 9.3 and BG of 610 at diagnosis!

I don't know why the doc considers the antibody test unimportant; my non-D daugther had one after both her siblings were diagnosed.

Deborah

[Momof4gr8kids]

My suggestion is to listen to the endo, but do occasional checks. I did read something here on CWD about what you described. If an antibody test comes up positive it only means your DD has the antibody, if she is getting high after meals she definately would go high for the GTT. A cpeptide would tell you how much insulin is in her blood, but to me it sounds like the endo thinks something else is wrong, and causing high b/g which could totally be possible. I wouldn't give up on it, there is deffinately something going on with your DD. Maybe you might want to take her to an internist. They deal with all of the internal organs, and sometimes even treat people with D. They are really good at sorting stuff out. Good luck, I hope it is nothing you have to worry about.

[tymaxtess]

Thanks everyone! Another 184 today after snack....

[5miraclez]

I would keep checking. I remember I checked my daughter a year or so ago and her sugar was in the 250's. I was really upset thinking she had diabetes. We washed 160's. I talked to my brother who is a Dr. and he told me they don't make diagnosis of diabetes until their sugars are well over 200 on repeat tests so I didn't think about it again. I tested her a few times after that and her sugars were always in the mid 100's. Well when we took her into the hospital because my machine was reading HI, her sugar was 686 and that was after me making her eat an icecream sandwich and drink a Sprite because I thought she just wasn't feeling well. I really wonder now if she hasn't actually had diabetes a lot longer. I wish I had tested her more and had more records if for nothing more than to show the Dr's.

[crystal]

We are almost in the same situation with my 4 year. I posted last April that we got a 183 reading on my meter (I was gestational diabetic and now insulin resistant on my way to Type 2) when my son was curious and wanted his finger poked. I figured it was a fluke but thought I would do a fasting the next day to put my mind at ease. The next morning fasting he was 150. We took him to the pedi and a random lab bs was 88 (meter said 90) and his A1c was 5.5%. One the advice of the pedi (who did consult a pedi. endo) I was told to watch and wait. There was nothing we can do unless his blood sugar remains high. We were also told to buy some glucose urine sticks.

Since April I take his blood sugar fasting twice a month and post prandial a couple times a month. More if he gets sick, pees the bed, drinks excessively, etc. His fasting is always 110-150's and 1-2 hour after meals is always 130-180's. We get an occasional 220 or 240--never higher than that. He always seems to come down on his own--but in the past 4 months I have never taken a blood sugar on him that is less than 95. Even premeal he will sometimes be 130-140. We have another appt with his pedi. in December. I am going to ask to repeat the bloodwork.

Part of me wishes I had never taken that first finger stick---but then again I also know that my careful monitoring could be very helpful if/when he develops diabetes.