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Have a few ?s Lost on my son

Discussion in 'Parents of Children with Type 1' started by Momof4rugratz, Oct 5, 2013.

  1. Momof4rugratz

    Momof4rugratz Approved members

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    Ok all try to fill in a lot here so there wont be alot of extra posts because I left out stuff.

    Son is 12
    4'11 65 lbs
    Nissen fundoplication at 1 yr and still intact
    IVIG infusions at 18 months for 9 months.
    He has been health up till 2012 when we knew something was off he had semi high blood sugar was nothing to bad at the time. Tested him for Type 1 here is the tests results at the time.

    GAD-65 AB > 30.0 H
    C-PEPTIDE 2.1
    ISLET CELL ANTIBODY (NEG)
    A1c 5.6

    Endo said later in life he will maybe have Type 1 for now we will observe him. Said we didn't need to see him again unless we want to be part of his study. I declined and he kept pushing the issue so I walked out.

    9 months ago my son wasn't well having a lot issues with tummy hurting feeling sick. I took sugar was 201. I waited 2 hrs and did it again was 163. Talked to pediatrician who did an A1c was 6.4. He talked to the Endo and he said to monitor my son. So every few months we did an A1c and it kept climbing now he is at 6.9.. Long story short I had to wait all this time for my insurance to get me the approval to go see the Endo.

    My son got sick 2 weeks ago his sugar was little over 300 the ER said ok he is Type 1 I said I figured that but no doctor will tell me anything. They took us to Primary Childrens Hospital who did test these are results

    Sugar was 121 came down after 7 hours in the ER
    HGA1c was 6.8
    Urine had Glucose 500mg +2 "they said this was a lot"

    They talked to the Endo on call who said since his sugar was low to send us home and he was going to fax over blood work papers for the general Peds to do. Our insurance wont let us see the Primary Hospital Endo have to see one they approve. Here is those results

    HGA1c 6.9
    C-peptide 1.8 (lab range is 0.8-3.1)
    Insulin Auto antibody normal
    IA-2 test will take 5 more days no result yet.

    We have an appointment set in January to see the Endo he is that booked up but said if something on test is abnormal he will fit us in. Well I guess all is ok he said he will wait for the La-2 to come back but feels it will be fine to. My son is just a weird case and they aren't sure what is going on. Seriously all these test and not 1 person knows what is going on. I wish we could see the Endo at Primary but we cant. At least he seemed like he could help. My question is what do you all think. Am I just a quack of a mom or is something for sure not right here. If the Endo says he thinks the lA-2 will be fine what does that mean. I haven't any knowledge of that test. I am sorry this is long winded and maybe confusing. Just need to get answers and so far I feel helpless in helping my son :(
     
    Last edited: Oct 5, 2013
  2. Megnyc

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    Sorry you are dealing with this.

    Is there any reason they are not thinking type 2?
     
  3. Momof4rugratz

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    Not sure why not. I am thinking it is because he only 12 and he is all bones. Poor kid cant seem to put weight on.
     
  4. hawkeyegirl

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    Yes, with his weight and the slow onset of symptoms, I was thinking Type 2 also.
     
  5. Momof4rugratz

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    OMG I just saw a type his weight is 65 not 165 I did correct it sorry.
     
  6. ChristineJ

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    I'm not sure T1 discriminates according to weight. The OP did say his GAD level was 30, which was labeled as high. (I believe normal levels of GAD are <1.5) There are cases documented in the literature of slow onset T1 in children, similar to LADA in adults. I believe the acronym was LADY (Latent Autoimmune Diabetes in Youth). Also, some members here have mentioned that they felt their children had symptoms of onset for a long time before their actual acute T1 diagnosis.

    Christine
     
  7. Shopgirl2091

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    Who is the Endo you are working with and who was your Endo up and Primarys? We had a fantastic Endo up there and she does an excellent job, but if your insurance won't approve one from the Diabetes Clinic up there there are still other good Ped Endos in the area - I was just wondering what one you are using because there is a T1D Utah Facebook Group that has been discussing pediatric endos in Utah and which one is best.

    I don't know what to tell you about your child - but I agree with you that Primary's is fantastic and I think you should continue to push to get your child seen there, I don't see why your insurance should have an issue with it they are a hospital and they work with all types of insurances, The Diabetes Clinic isn't even in the hospital, the doctors are just staffed there.

    If you have any questions about Ped Endo's in Utah I would be happy to answer, I'm not an expert but we have been immersed in this since February so I'm learning fast :)
     
  8. hawkeyegirl

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    What did I say that made you think that I think that a heavy kid can't be T1? It's not presenting as a "typical" T1 onset, and that, plus the obesity of the child made both Meg and I wonder why no one was thinking it could be T2.
     
  9. ChristineJ

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    Possibly because of the positive GAD antibodies?:cwds:

    Christine
     
  10. hawkeyegirl

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    Okay. But just so we're super clear, I never said that an overweight kid can't be T1.
     
  11. ChristineJ

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    That piece of the puzzle may be a moot point anyway. It looks like the OP has edited the original post and the child's weight is corrected to be 65 lbs at 4'11".

    Christine
     
  12. hawkeyegirl

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    Well, that certainly does take that out of the equation, lol.

    ETA: 4'11" and 65 pounds is very thin. That makes more sense, since I would expect some sort of slow weight loss with extended high BG.
     
  13. Momof4rugratz

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    Yes am sorry that was a typo and right now none of my posts are going thru and I have wait a few hrs for a moderator to approve them.
     
  14. mom24grlz

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    I hope you can get some answers. I already replied to you on another forum, but i really think this may be a case of slow onset type 1.
     
  15. Lee

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    Well, we aren't really 'allowed' to answer 'does my kid have diabetes' posts, so all I am going to say is, don't wait until January. There is no reason to wait so long.
     
  16. jbmom1b2g

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    There are different types of diabetes also. Not sure what the symptoms are of the other types and not sure of all the names but I do know one is MODY. Are you in UT? I don't see why you insurance wont cover at primary's since it is a specialized hospital just for kids. Good luck.
     
  17. Christopher

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    So are you checking his blood sugar at home? Giving him insulin? With an A1c of 6.9 and bg in the 300's it seems like that might be something you want to ask about.
     
  18. MomofSweetOne

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    She wouldn't even have to ask. We bought a meter at Walgreens and tested my daughter for a couple of weeks since we couldn't get an appointment with the pediatric endocrinologist for four months. When we got a 300 reading, our dr. told me to take her to ER to force the issue. My daughter was started on insulin that night, but we'd already known she had diabetes for a couple of weeks. I think my daughter was a fairly slow-onset, but her A1C at diagnosis was in the 11s, not a 6.9.
     
  19. schnoodle

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    The other forum. Just so we are all on the same page.
    http://www.tudiabetes.org/forum/topics/so-confused
     
  20. mom24grlz

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