- advertisement -

Any parents, teens or adults out there with neonatal D - transient or permananet?

Discussion in 'Parents of Children with Monogenic Diabetes' started by Liann, Apr 14, 2009.

  1. Liann

    Liann Approved members

    Joined:
    Mar 23, 2009
    Messages:
    47
    The more I have looked at my ds's history and medical records and the more I have learned about neonatal D, the more likely I think that is what is going on. It would be nice to "talk" to someone who has dealt with this. I am really wondering what it was like when the child was a baby/toddler and then how things progressed in later childhood / adolescence with bg readings, symptoms, etc. It looks like it presents more as a type 2 than a type 1. However, I know that it is in fact neither. I am just amazed by what I read, as it sounds just like my son. :cwds: Thankfully we see a Peds Endo the end of May, as my ds's family doc has never even heard of it. I will be sure to ask for the genetic testing then. Will the Endo think I am crazy or presumptuous or reading the internet too much if I mention the possibility? I'm not really interested in ticking off my only option of a Peds Endo. We will be going to Children's in OKC.

    I am also planning on taking my ds' records to his family doc, who is also his volleyball coach and a family friend. I recently got them from his old dr. out of state. I want to show him that my memory was not faulty, but I did indeed remember A1C's of 9 and 10 and bg readings in the 250 - 400's range when ds was a baby and toddler. I guess I feel a little vindicated by proving I wasn't crazy, a hypochondriac and my memory wasn't faulty. I am so glad that the records were still available over 10 years later. I was told that his birth and hospital records from when he was a newborn are probably destroyed by now, 14 years later. I am going to sign a release and hope they can find them anyway. Thanks for any insight you have.
     
  2. Reesesmom

    Reesesmom Approved members

    Joined:
    Jul 22, 2007
    Messages:
    5
    Monogenetic diabetes

    Feel free to contact me, I have 2 little girls that tested postive with the gene mutation. My email is CCollura06@yahoo.com or you can go to my facebook page (Crystal Collura).
     
  3. Nancy in VA

    Nancy in VA Approved members

    Joined:
    Jul 16, 2007
    Messages:
    7,308
    I hope you get engaged with the University of Chicago - that is where the Dr is that identified this and is able to accurately diagnose it. Our Dr at Childrens in DC has gone and worked with him and I think is trying to provide a practice to treat those patients in the DC area
     
  4. Liann

    Liann Approved members

    Joined:
    Mar 23, 2009
    Messages:
    47
    Actually, yes I have corresponded with the two Pedi Endos at Univ of Chicago. Someone sent me a link in a pm about a month ago and I wrote them my story. They responded very quickly and even called later that week. Two days ago I received the genetic testing kits, which we are sending back tomorrow. I'm excited about finally getting a possible answer! I am also in the process of gathering my ds' medical records to send to the drs at Univ. of Chicago. They have been so helpful and have signed us up for two different research studies. The one does genetic testing and the other is just medical records and correspondence. Both are promising to get possible answers on neonatal diabetes and to be able to help families dealing with this. The exciting thing for me is that if this is the case, we are looking at controlling it with medication and not injections or a pump. It was in part by your previous post that I started looking into them, along with another person who sent me a pm with e-mail addresses for the doctors. Thanks so much!! We see the Pedi Endo at Children?s in OKC in a couple of weeks, so I am hoping to get some answers there too. The research docs want to work with our docs here.

    It was funny, Dr. M, my sons volleyball coach and family practice doc, talked to me at the volleyball party this week. I had dropped off ds medical records with A1C's of 10.2, 9.8 and eventually 6 from when he was a toddler. Dr. M asked me if we went to one of those Word of Faith churches and did my ds get healed? Well, he did get prayed for...but we didn't go to that particular type of church. I explained about neonatal diabetes and how we were looking into that and working with researchers from Chicago. He basically said, that he was unfamiliar with it, but that he would let the experts handle that. He did want me to continue to see the OK pedi endo, which I explained would be my ds' main endo, but we were working with the others due to their expertise.

    Really what I would love is to hear stories of others who have dealt with neonatal diabetes and how it presented. Also, if their kids are older, did it come back in adolescence? So far ds' numbers are horrible, but they aren't normal either. We are hoping they don't go higher. If they do, and the researchers from Univ of Chicago thinks that it is likely, then we will have to consider treatment.

    Thanks again Nancy for the heads up awhile ago. It is a blessing to have someone finally listen to me! It took me till my ds was 15 months old and changing doctors twice to even get a doc to pull an A1C. When they did he was 10.2. The ped endo from Chicago is amazed that they didn't put him on insulin. I'm amazed that he didn't go into dka with the numbers he was registering. We just tried the best we could to control it with diet because the docs just said he was borderline and that is what I had to do. Were I to do it over again, I would have been even more bold and insisted on seeing an endo earlier on. Oh well...not much I can do now, but I have learned that age and experience makes us bolder and more confident as moms. :rolleyes:
     
  5. Nancy in VA

    Nancy in VA Approved members

    Joined:
    Jul 16, 2007
    Messages:
    7,308
    Liann:

    If you PM me your email, I can pass it on to the family I know.

    They didn't have the transient variety. Their son was diagnosed T1 at 12 weeks and was diagnosed neonatal about 1 year ago at the age of 6.
     
  6. mrcool

    mrcool Approved members

    Joined:
    Feb 24, 2009
    Messages:
    349
    Liann,

    I'm glad you got in touch with doctors from U of Chicago. They seem very professional and they must be the ones who know the most about forms of neonatal diabetes.

    Just a heads up - the actual testing of the saliva sample takes at least a month or two, that's what Dr. Greeley from U of Chicago told us. It's been 4 weeks since we sent our son's sample, but we haven't heard anything yet.

    Anyhow, I hope you have your answers soon, you're headed the right direction. Good luck!

    By the way, did they tell you about that facebook group for parents whose kids were dx'd before age 1? I've seen some parents there whose kids have TND.
     
  7. BrendaK

    BrendaK Neonatal Diabetes Registry

    Joined:
    Oct 29, 2005
    Messages:
    3,835
    There is a forum on the CWD website for parents of children with neonatal diabetes. You have to have permission to view the threads. Ask Jeff if he can grant you permission.

    Yep, there's a facebook group, too.
     
  8. momof2here

    momof2here Approved members

    Joined:
    Apr 7, 2009
    Messages:
    1,377
    transient neonatal...

    Now this is very interesting to me. Just yesterday, as I was speaking to the Certified Diabetes Nurse Educator, I was talking with her about the genetic testing that my son is presently undergoing for 'Mody'. I asked her a few things about neonatal diabetes and if it could in any way be possible that he either had this as a baby and young child and it was so mild that it was missed (he has always had a way of getting very stressed when meals are missed, snacks are not available, water is not available immediately - he is a very quiet child yet this spirit/anger would come out any times food or water wasn't there when he needed it) - so, I asked is Neonatal a possibility at all. She said 'no'. I said, are you sure there is no way it could begin mildly and then, as time goes on, get more obvious or severe. That is when she told me that it was out of her area of expertise.

    Until just reading this post I had never heard of 'transient neonatal'. Now I will look this up and read more.

    So - with Mody one parent or the other will have it as well as well as their one parent - what is the case with neonatal??? Is there a good resource out there for transient neonatal or how neonatal has been known to progress??? I ask this because he, at this point, fits the profile of a monogenic case and that is why they are doing genetic testing. To me, he seems as though he has had these symptoms, mildly, for years.
     
  9. SarahsMum

    SarahsMum Approved members

    Joined:
    Dec 30, 2008
    Messages:
    47
    Hi

    My daughter was born with Neonatal Diabetes that is very permanent.

    It will be interesting to see how she copes as she gets older etc and Ill be keeping an eye on this thread
     
  10. Nancy in VA

    Nancy in VA Approved members

    Joined:
    Jul 16, 2007
    Messages:
    7,308
    SarahsMum - are you the one that the article from NZ was posted here a few days ago about the child born without a pancreas? That was a neat article. My kids have a writing teacher who had her pancreas removed after an accident, so she is in the same boat as your daughter, but dealing with it as an adult instead of an infant.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice