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TB, Diabetes, Celiacs...OH MY!!

Discussion in 'Parents of Children with Type 1' started by mrsfatkat, Dec 15, 2011.

  1. mrsfatkat

    mrsfatkat Approved members

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    4 moths ago we brought Maddie and her sister to the doctor for their routine physical for school. And sure enough Maddie's TB skin test came back positive. They sent us in for a chest Xray which thank all that is holy came back negative, but they made us do a second skin test to air on the side of caution. And wouldn't ya know it that skin test came back positive too. So reluctantly we medicated her with INH. After a few months of being on the medication we noticed our bubbly super active baby wasn't quite herself, (Which directly fell into the same week I started a new job) we tried our best thinking she was just having a hard time that mommy was working. I took her into her doctor to have a blood and urine panel done thinking that she was having a reaction to the INH. A week later she was VERY sick when I called the doctor for test results they ordered me to get her there immidiately! THEN she was diagnosed with T1. They rushed us to children's hospital where our world fell apart around us. After 4 days in the hospital we came home. We've been home for one week and one day. THEN yesterday our diabetic educater called me to inform me that they are reffering us to a GI doctor because Madison tested positive for celiacs! Okay, here's my melt down.....
    SERIOUSLY?!?! She has never shown any signs or symptoms of celiacs but they said she will have to be retested after the beggining of the year. And all I can keep telling everyone who calls me is "I don't understand, my kids have never been sick! Ever! She never even had ear infections when she was a baby! I think she's had the stomach flu twice her whole life!"
    I am learning more and more everyday that I can NOT control the path that has been chosen for my children! BUT come on now! Can't I have some room to breath in between hurdles I have to jump and mountains I have to climb?! I am so very tired and with Maddie hitting lows at night I am not sleeping. And I say every day that I will take a 30 mins for myself and myself alone. Leave my husband in charge of the children, pour myself a glass of wine and take a hot bath and cry and try to breath but when it comes down to it I can't ask him to do that because he's doesn't seem interested in much these days and hardly speaks and I know if I ask and don't get the reaction or answer I'm looking for I will get "Sassy pants" (As Maddie puts it) And there will be a fight. And I don't want to fight with my husband nor do I have the strength to deal with a fight.....YIKES!
    Well, we are off to the doctor to see what's going on with Maddie's liver enzyms. they said they are still elevated from the INH. So far we are up to a whole team of doctors for D, our regular doctor trying to figure out what's going on with her liver, AND now a GI doctor to figure out if she has celiacs! Woah! That was a mouth full!
     
  2. MamaC

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    I'm sorry you're being slammed. If she does have celiac, it's best to know asap as impaired absorption will affect insulin needs. So while it would not be a picnic to add celiac to the list, it would be a blessing to know.
     
  3. Becky Stevens mom

    Becky Stevens mom Approved members

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    Oh bless your heart:( Im sending (((hugs))) and prayers your way. I understand about the husband thing, I really do. I know he's scared and he's grieving right now too. I do hope that he can manage to get it under some kind of control so that he can be there to support you and give you a chance to catch your breath. If your daughter does have celiac, there are many wonderful parents here that have kids with both type 1 and celiac. They will help guide you through that too.
     
  4. JaxDad

    JaxDad Approved members

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    Sorry you're getting it all at once. As one friend once said to me, I know God won't give me more than I can handle, I just wish he didn't have that much faith in me.

    First, like your dear Maddie, you've just lost a lot of control in your life. Take some of that control back and, maybe one night after you've just put Maddie to bed, take your glass of wine and take your bath. Tell your husband your doing it without getting Sassy pants about it or don't tell him. Seriously, it's one half hour or maybe forty-five minutes. Things will be ok, even better when you are done.

    As a male, let me try and address the husband thing and put in my 2 cents there. Everyone deals with stuff in their own way, if the withdrawal is the way your husband typically deals with stuff, then that's his style. In my house, it's my wife who likes to withdraw and be alone, I like the opposite. Early in our marriage I tried to "help her" in the ways I wanted to be helped. When I was upset she left me alone and I felt abandoned. It's a natural tendency - sort of like people who give gifts they would like. Of course it didn't work for either of us and made things worse. It's usually not that people aren't trying it's that they're doing what they're comfortable with or what they think is best.

    If withdrawing isn't typical, then it could just be that your husband is scared, and may be feeling a bit insecure because he can't solve the problem, etc. or just plain is at a loss of what to do, or is just overwhelmed; certainly not an unlikely possibility given all you BOTH are going through. Men aren't good with "I'm scared and don't know what to do"

    Two things that would help to motivate many men: tell him you reading this or that and what you learned really helped you to better understand and be just a little bit less scared, and leave some of the materials around for him to discover. This appeals to our arrogant leader side because we don't want to be considered dumb.

    The second thing is to simply open up to him, assuming all this to be true, tell him you are scared, you love him, you need him and you're so happy to have him, that you don't have to do this alone. This appeals to our macho side and after all, who doesn't want to be told they're loved and needed? Positive reinforcement, sometimes even if it's not "completely" true, will often motivate people to do more of what they are being thanked for.

    It will certainly work better than sassy pants. Unless the Sassy pants are really sexy ones. Which of course motivates us tremendously.;)

    (Hope you don't mind the joke)
     
    Last edited: Dec 15, 2011
  5. obtainedmist

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    So great to get good strategies from the guys!;) To the OP, so sorry you are having all this hitting you at once. You won't feel this overwhelmed forever even though it seems that way. One thing that helped me was to just get really proactive about the D stuff and read everything you can get your hands on! Here's a resource that you can read online...just scroll down to see the chapters. http://www.ucdenver.edu/academics/c...eBooks/books/Pages/UnderstandingDiabetes.aspx

    Remember to take good care of yourself!
     
  6. mrsfatkat

    mrsfatkat Approved members

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    Thank you all so much! It really helps to hear HONEST words of encouragement! And definitely does help to hear things from the mens aspect. My husband is much more reserved than I am. He will go and hide at the near sight of a problem and me on the other hand wear my heart and emotions on my sleeve. I think this could be another reason why I am so exhausted! Putting on that "Everything is fine" face for my children when I am dying inside is a difficult thing to do because I have a hard time losing it when the kids aren't around, this also could be part of my husbands whatever you call it attitude. He sees me breezing through the day effortlessly and sticking to the routine because I don't let anyone see how difficult this actually is....
     
  7. Paula+four

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    I am so sorry you are having so many things coming at you. We had the double blow of diabetes & celiac too. It's pretty common to be told to wait for further celiac testing until 6 months after T1 diagnosis. So maybe you'll have that extra time too because there are so many changes already.

    The celiac forum on this site is really great. So I'd encourage you to seek help from them. They really helped us. It's common for kids which T1 to have no external celiac symptoms. But sometimes you can see them in retrospect. I couldn't believe it with my kids either. But we've been gluten free in our whole house now for over two years and it is annoying at times but not hard for us.

    I hope this helps and the stress starts to fade soon!
     
  8. NomadIvy

    NomadIvy Approved members

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    Oh gosh! So sorry. That really is a lot to deal with.
    There are several in this forum who have children dealing with multiple medical issues. I hope they chime in.
    Virtual hugs.
     

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