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8 yr old hungry, skinny, 117 fasting bg 6.7 a1c; eats very healthy

Discussion in 'Introductions' started by nanalou, Nov 25, 2010.

  1. nanalou

    nanalou Approved members

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    My son is a type 1 diagnosed at 19. My grandson, age 8 is on a very strict diet as they say he is in "honeymoon". He eats organic, no sugar, little carbs. His mom is very strict with his diet. He is hungry all the time and is very, very small and very thin. His younger brother (19 mos younger) is a head taller than him. My grandson's fasting bg is 117, A1C is 6.7 and c peptide is .8. My daughter spoke to a friend, adult endo/hospital researcher and he said that his pancreas is quitting and that it isn't time for insulin just yet. She is getting in to see ped endo as soon as possible. One other thing that I have noticed is that he holds his heart when playing soccer, and he says that it is beating really fast. Is anyone familiar with any of these symptoms? Would insulin put weight on him and help him grow? Would insulin help him with the hunger?
     
  2. TheFormerLantusFiend

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    Insulin helps with weight gain, and might or might not help with hunger. He would be able to eat more on insulin without getting higher blood sugars.
     
  3. StillMamamia

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    I hope he can be seen my a pediatric endo asap. The sooner he is put on insulin, the better. It will give his remaining beta cells a break and maybe prolong the honeymoon. I see no need to wait, much less the need for a strict diet, but that is my opinion. Plus, the heart issue is worriesome. Has he been checked out by a doc? Is it the heart or the lungs? I'd push for a full exam with blood work (thyroid, celiac, etc, etc)

    After being put on insulin, my son gained weight very nicely. He is still thin but healthy. He is also not much taller as his younger brother, but that's just genetics - I'm short, DH is tall.
     
  4. Sarah Maddie's Mom

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    This post saddens me.

    Has he been on this diet for any length of time, or is this a recent change? Is his younger brother also on the diet?

    I'm assuming that the diet is intended to prevent or delay the onset on Type 1? If so, please get that child to a ped endo and have him evaluated. The "honeymoon" phase is typically the time after a child has begun insulin therapy during which the pancreas is relieved on the stress of the auto-immune attack and during which some insulin is still being released by the body. What you describe sounds to me more like the starvation diet therapy that was used 100 years ago before the discovery of insulin as a last ditch effort to prolong life. :(
     
  5. selketine

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    So this is your daughter's child? I can't tell from the post if your daughter normally would have this "diet" for their children or if this one child is being put on a special diet, etc.

    There are fairly strict rules on this board for trying to help those seeking information on "does this child have diabetes" questions.

    I think the best answer would be to take the child to the doctor - such as the child's pedi - or to the emergency room if the symptoms of type 1 are there (drinking a lot, peeing a lot, etc).

    If the child has already been seen by his regular pedi and they recommended going to the pedi endo and wait for that appt - then I think depending on the symptoms, your choice is to wait or to go to the ER.

    Since you're already the parent of a T1D you know how quickly things turn to an emergency situation. I think getting seen by a doctor asap (even if a 2nd opinion) is the best course of action. Any doctor worth a nickle would see this child immediately - IMHO- and not wait around for an appointment.
     
  6. Becky Stevens mom

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    From the sound of your post, it seems that your grandson has already been diagnosed with type 1. Is that correct? Does your DIL have the mistaken idea that he wont need insulin if she restricts his carb intake? This is a dangerous idea with a young child. Your grandson is growing and needs the energy that carbs will give him. There is nothing wrong with his eating healthy and his folks limiting sweets and junk food but whole grains and fresh fruit which has lots of carbs are part of a well balanced diet. I think his parents need to get him to the endo and a dietician for evaluation.

    If he is having pains in his chest when running then he needs to be evaluated for that as well, preferably by a pediatic cardiologist.
     
  7. Lee

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    An A1C of 6.7 means the child needs insulin, end of story. I would urge your child to take your grandchild to a pedi endo ASAP!
     
  8. nanalou

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    8 year old grandchild--Shared info with my daughter

    Thank you all for your posts. Needless to say, the stress in our family is great, and I might have overstepped a bit with getting involved. I do appreciate your answers. I just want what is best for my grandson. So this AM, I shared with my daughter (she is not daughter in law) about all of your answers. She had been told by the adult endo (Director of major clinic that you have all heard of and researcher--VERY well known in the field) that no insulin was needed yet. He said that grandson was entering honeymoon 4 years ago, when this all started (grandson was 4 yrs). Since then it has been blood tests on a yearly basis only. Endo put him (and brother) into Clinical Trial, I believe that it is Trial Net (not sure). My grandson is also having gene testing very soon also. It is all very strange and not your normal entry into juv diabetes. I have been corrected by my daughter that my grandson's fasting bg this time was 113 not 117 (last time tested by the clinic, it was 67). My daughter has had both children on a strict low carb healthy diet. She is not starving them; he eats and is hungry again immediately. He weighs 55 pounds and is 8 1/2 years old. We got the most recent results on Weds. He sees pediatrician only; I personally don't have a lot of confidence in the ped. Ped has previously told her that A1C is fine, and we know that it isn't. It is a holiday weekend and she is trying to get a ped endo appt asap. Our son, type 1 (grandson's uncle) is very involved and knowledgeable in the diabetes world has told his sister that he thought that the child should have some insulin, but endo said not yet. I just read that .8 c peptide means he should be on insulin. She is now monitoring bg on a daily basis. This AM fasting bg was 100. It is something strange.
     
  9. BrendaK

    BrendaK Neonatal Diabetes Registry

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    If his a1c is truly 6.7 then there is no pediatrician that would say he is fine.

    You did not answer the question if he had been diagnosed with type 1 diabetes or not.

    Anyone in a "honeymoon" state has been already diagnosed with type 1 diabetes and needs much more than once a year testing.

    Please elaborate on if he has been diagnosed yet or not, and what his issues are besides being hungry.

    Are you concerned more about the low carb diet, or about his blood sugars?

    I understand your concern about your grandson, but I'm not understanding what kind of advice you are looking for. Have you asked him why he hold his heart while playing soccer? Does it hurt, is it just a comfortable place to put his arm?

    Insulin is needed for high blood sugars. Does he have high blood sugar? If he has type 1 diabetes, he will have high blood sugar even on a low carb diet.
     
  10. nanalou

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    answers are below. Remember I am the mother of a type 1 diabetic (diag at 19) too, so I have some knowledge. My goal is to find out if anyone else has gone thru something similar to what we are experiencing

    If his a1c is truly 6.7 then there is no pediatrician that would say he is fine.
    .....well, he did with his last test a year ago; his a1c was 6.7 last year too; as i said, I have little confidence in this ped

    You did not answer the question if he had been diagnosed with type 1 diabetes or not. see below


    Anyone in a "honeymoon" state has been already diagnosed with type 1 diabetes and needs much more than once a year testing.

    ....Our son (his uncle) has type 1; our grandson hasn't been diagnosed except that we were told 4 years ago that he was entering the honeymoon. He had high bs, not scary high, but consistently high. He was put into the clinical trial at this time

    Please elaborate on if he has been diagnosed yet or not, and what his issues are besides being hungry.

    ........Hungry, also has small breasts too, not much growth and very skinny

    Are you concerned more about the low carb diet, or about his blood sugars?

    ....he is on a healthy diet, adult endo said diet is fine, but his bs are high not real high. I am concerned about high bs

    I understand your concern about your grandson, but I'm not understanding what kind of advice you are looking for.

    ---all of this is crazy, and mainly I wanted to know if this had ever happened with anyone else. I am all over the internet with these symptoms. He is high, but not too high yet. He is rediculously hungry all the time, skinny, has 6.7 a1c, .8 c peptide, and fasting bs 113. And all of this was with a good diet.

    Have you asked him why he hold his heart while playing soccer? Does it hurt, is it just a comfortable place to put his arm?

    .....he says that his heart feels like it is beating fast and hard.

    Insulin is needed for high blood sugars. Does he have high blood sugar? If he has type 1 diabetes, he will have high blood sugar even on a low carb diet.

    .....his fasting bs with the clinic was 113; this AM it was 100 (day after Thanksgiving too) It would be hard to control if they put him on insulin. So, has anyone experienced anything like this before?
     
    Last edited: Nov 26, 2010
  11. otwellfamilyx4

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    I am thinking that a bit of insulin would indeed help. I have never heard of anyone honeymooning that long either. A non D should NEVER be over 120; and an a1c should be 5 or less. Anything OVER a 5, should be considered D..if nothing else, borderline.
    I agree with your son--he needs to be checked out by a ped endo--not an adult one.
    Pediatric endo's are more 'in tune' with kids and their bodies.
     
  12. nanalou

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    Hi Lesley...I wasn't surprised when I saw your name on the forum last night. Since you know about our family, our son and the MD endo we have been with isn't all of this odd? New blood results will be going to another clinical trial at Barbara Davis Center in Colorado ....maybe that will help sort all of this out. Both grandsons are in Trial Net clinical trial too. It's a bonus (we hope) that they saved his cord blood. Our daughter will be getting our grandson to a ped endo as soon as she can next week. She won't be going back to the ped anymore. We really have to have another opinion...a clinician this time. Best to you and yours.
     
  13. Sarah Maddie's Mom

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    If your grandson is hungry all the time, underweight and on a low carb diet then his almost normal bgs are, in my opinion, the consequence of being an under fed kid. IF he were on a small amount of insulin, he could actually eat normally.
     
    Last edited: Nov 26, 2010
  14. otwellfamilyx4

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    baby girl is also in the trial net---so far, her antibodies have been negative.
    Its time to test again but I shudder at the thought. It freaked her out so badly last time that even just to mention even checking her sugar sends her screaming~! :(
     
  15. Lisa P.

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    Have they done other testing?

    There are other metabolic disorders than diabetes that affect blood sugar. For example, my middle daughter has a nondiabetic A1C and I don't believe she is developing diabetes. But I have clocked the kid at 190. I believe she has some kind of hypoglycemia and when her bg goes too low, her body kicks out glucose and raises her bg higher than it should be very briefly. I can see something like this affecting an A1C, although to affect it this much would be weird.

    I would find another pediatrician and check on other autoimmune, since that runs in your family and might explain. Thyroid, adrenals, pituitary -- bg and heart regulation can be affected by some of that, I believe, as can weight gain. We've been looking at adrenal insufficiency lately so I have google-brain, but I'd wonder if he might be looking at Addison's. If he has any kind of strange pigmentation, like darkened scars, I'd be all over that.

    In general, I'd say to widen the scope of the inquiry.
     
  16. nanalou

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    antibodies are still negative with all of these other results
     
    Last edited: Nov 26, 2010
  17. selketine

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    Has his thyroid been checked? When I was child, I had a hyperactive thyroid and some of the symptoms you describe are signs of this - especially the chest pain and fast heartbeat - plus being hungry all the time and being skinny. The fast heartbeat was something I remember well and was VERY uncomfortable.

    Does he have trouble sleeping?

    I don't know if hyperactive thyroid can cause a rise in blood sugar.

    Thyroid can be checked with a simple blood test - I would ask your daughter if this has been done.
     
  18. nanalou

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    Good idea. I will ask for it to be checked next week. My daughter is reading all of the posts now. Grandson is having testing to be sent to Barbara Davis Center in CO for genetic testing. We are in CA. He has no trouble sleeping. That wouldn't answer the low .8 c peptide. Would hyperactive thyroid cause the high a1c?
     
  19. selketine

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    I tried to search whether a hyperactive thyroid could cause a rise in blood sugar and I didn't find any definitive information on that. I was thinking that if it caused a somewhat elevated sugar (almost like the way illness does to the body) - but over a long period of time - this could elevate the A1c eventually.

    It is so easy to test for thyroid disease (blood draw) that blood sugar isn't something usually looked at. I think a hyperactive thyroid does not stunt growth in any way. (I also wanted to note that even though I had a VERY hyperactive thyroid - I was also fat - so just cause you read that a symptom is usually this - in a few cases it can go the opposite way - of course I'd end up fat and not skinny - I mean the one decent thing about hyperthyroidism and I was one of the few who gained weight instead of lost it!)

    With the other issues you mention, I am a bit less concerned with diabetes than I would be over other endocrine disorders. I agree that having him checked head to toe would be the best idea - for anything that could cause those other issues as well as the elevated blood sugar. Endocrine disorders seem to run in families (our family has lots of people with thyroid disorders and with type 2 diabetes - William is the only type 1).

    I'd push for appointments as soon as possible - and absolutely head off to the ER should he develop any more obvious signs (extreme thirst and peeing, etc) of type 1. Let us know what you find out.
     
  20. mmgirls

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    Has he had an oral glucose tolerance test done?? With an A1c of 6.7 i would think that after a glucose load would send bgs to above 200 and then an oficial DX can be made and then preveative trials if you want, different from Trial net.

    What phase of trial net is he in, Just phase one? if so have you told trial net of the A1C results.
     

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