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Hello!

Discussion in 'Introductions' started by Viki's Mom, Apr 18, 2013.

  1. Viki's Mom

    Viki's Mom New Member

    Joined:
    Apr 18, 2013
    Messages:
    2
    I'm a mom to five kids (3 bio, 2 adopted), Viki (10), Ayden (9), Elijah (7), Denny (6), and Sadie (2). My oldest daughter, Viki, has Down syndrome and Type 1 diabetes.

    We were preparing to travel to Eastern Europe to meet Viki and Denny in Sept./Oct. 2012, when we received an email from our adoption agency that Viki had been diagnosed with Type 1 diabetes. (The orphanages only send updated medical reports to the government annually, so our agency was notified by the orphanage director when she learned a family was coming to meet Viki.) The news was definitely a shock, but I have friends with Type 1, and I have friends with older teens with Type 1 and, to us, that was no reason not to proceed with the adoption. She received her diagnosis in July 2012.

    Fast-forward five months from meeting them, and we're now just 3 weeks home with the kids, and in the middle of not only the transition into a family, but also a big learning curve with diabetes management, new medications, etc. We met with a fantastic endo the week we came home, who helped us work on a management plan. All Viki's medications changed, from outdated and ineffective insulin no longer available in the US, and no plan or way to know how much insulin to give, to Humalog and Lantus, with a plan that makes sense and is working. The endo and I have spoken every night, and is adjusting her Lantus dose to a point that's right for her.

    Viki doesn't recognize highs or lows, which makes it difficult for me, because it's hard to tell if your child is low, pouting because "share" is a four-letter word, or just tired. Because of this, and because fighting a 10 y.o. over carbs at night is just not fun or conducive to bonding, we've adjusted her Lantus down by a couple of units, and already I feel better.

    We also met with a pediatric ophthalmologist, because Viki has already begun to develop peripheral cataracts, as well as dozens of other small occlusions in her eyes. He was concerned about Diabetic Retinopathy, and believes we'll be looking at surgery sometime next year, after she's had a chance to adjust to family life, a new language, and just settle in.

    So, that's my big life change in the past few weeks, and I'm eager to read more posts from all of you, especially regarding cgms and pumps, both of which the endo believes would be wonderful tools for Viki, and eager to read about your experiences with having a child with diabetes.
     
  2. ChristineJ

    ChristineJ Approved members

    Joined:
    Dec 25, 2010
    Messages:
    303
    Hi, and welcome! There are a couple of moms here who have children with both Down's Syndrome and T1. Hopefully they'll see your post and chime in about some of the unique challenges that entails. In the meantime, you'll find lots of information by reading through the various threads. A large majority of the posting, as you'll see, takes place in the Parents of Children with Type 1 forum, so that's a great place to start. :)


    Christine
     
  3. Brenda

    Brenda Junior Member

    Joined:
    Oct 19, 2005
    Messages:
    683
    Welcome to the forums. Feel free to ask any diabetes questions you may have.

    My only comment is that I believe it is highly unlikely your daughter has diabetic retinopathy. It usually takes years to develop in those with poorly controlled diabetes. I hope that any surgery for cataracts is a great success!
     
  4. Helenmomofsporty13yearold

    Helenmomofsporty13yearold Approved members

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    Oct 5, 2008
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    I am deeply moved by your story. What a blessing for Vicki to have a family and get the care and love she needs. It is a steep learning curve for the first couple of months, but it does flatten out. You may learn to recognize lows in your DD and she may recognize them as you identify them with her. For example, DD would say her legs are shaky or my stomach is queasy. She will say she is hungry. I could see she was pale and her lips almost blueish in contrast to the pale skin. Her hands can get clammy. She often lets out a big sigh when she is low. Sometimes she gets a "mean" look in her eyes and acts mean. At night, she is restless in bed unless very low, when she is too still.

    I can only tell when she is high by her oppositional behaviour. This has gotten tougher in the teenage years:rolleyes:. DD rarely recognizes her highs and does not get thirsty and pee a lot as one would expect.

    All you can until you get your CGMS is test as often as you feel the need to. I hope the eye issues are resolved.
     
  5. Viki's Mom

    Viki's Mom New Member

    Joined:
    Apr 18, 2013
    Messages:
    2
    Thank you for the warm welcome! I've been reading through, taking in as much as I can. The learning curve is definitely steep! Brenda, I realize in re-reading my post that I wasn't clear about her vision. The ophthalmologist is concerned that diabetic retinopathy will be an issue later, because there are so many issues developing with her eyes now, and the surgery would be for the dozens of occlusions that are present and affecting her vision now, and possibly the cataracts, though they aren't affecting her vision now. Her diabetes was poorly managed in the orphanage, through no fault of the caretakers, but lack of current medical information and medicines, and difficulty in getting her in to see the endocrinologist.

    Do any of you know, with her diabetes not being managed well in the orphanage, and that already impacting her vision, is it possible that the negative path toward vision loss can be reversed now, with proper care and management? I'm still learning, and I have a long way to go, but I hope for her sake that nothing permanent will come from her prior diabetes management.
     
  6. pianoplayer4

    pianoplayer4 Approved members

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    Feb 13, 2010
    Messages:
    1,060
    Hi, I'm sorry you have to be here... but welcome! I've had cataract surgery in both eyes... for me it was due to a VERY late dx...

    I lost all vision in my left eye and most in my right before surgery; now I can see pretty welll... I have to wear glasses all the time (not normal for cateract surgery but my cateracts were very dense) I mean I don't have perfect vision but it's pretty good=) I can drive, read and watch tv=)

    One caution with cateracts... in diabetics they can grow very fast and a small problem can become a big one... so don't wait too long because while it isn't really dangerous... the larger they are the harder it is to place the new lenses and the worse her vision will be after words (ie. In most cateract suregries the patient is just far sighted after words... and only has to wear glasses for things like reading and being on the computer. Because my cateracts were so large my vision is very bad (without glasses) and I have to wear them all the time.)

    The surgery isn't painful though... I didn't even need advil after it!
     
  7. Jason's mom

    Jason's mom Approved members

    Joined:
    Jul 19, 2012
    Messages:
    77
    Hi! I think what I most want to say is... thank you for choosing Viki.

    Both of my boys are blessings. But, I would have missed so much in life if I didn't have Jason - exactly as he is. Sometimes life is different, but life is always better. Don't get me wrong... I'd give back Celiac in a heartbeat given the choice. And, I wish he didn't have to deal with T1D. But Down syndrome? Well, that's as much a part of him as his blond hair and blue eyes. And he's perfect just the way he is!

    I haven't found many folks in the DS and T1D club. PM me anytime. I'd love to visit.

    Julie
     

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