Wednesday, March 5, 2014

Zoya Health Update

Blogging has taken a back seat again! It seems our days just get away from us lately! We've had lots of medical appointments again lately, many of those being for Zoya. Ever since she was hospitalized in September, she just never really bounced back. She's just had a tough time since September. School has been rough with some great days and some really tough days.

After her hospitalization in September we started seeing a slew of specialists to rule things out. We saw hematology/oncology, urology, cardiology, and most recently endocrinology. Before we were set up with endocrinology, she had checked out well at all her other appointments, but just still didn't seem back to herself. On a hunch we started checking her blood sugars and let her pediatrician know we were concerned she might be having some blood sugar issues. Mostly we thought she was waking up with low blood sugar because she was having symptoms including waking up sweaty and shaky, pale as could be, complaining of a stomach ache or headache and crying and begging for a drink. Within 15 minutes of drinking juice (she insisted on juice not water or milk) she was back to herself for the most part and it was as if none of that ever happened.

However, when we began checking we started getting some high blood sugar numbers as well as low. Some of the numbers were in the diabetic range so her doctor ordered more bloodwork and a 2 hour glucose tolerance test. Most of her bloodwork came back normal, but the 2 hour glucose tolerance test showed her dropping to a very low 47. Normal blood sugar range is 70-100. 47 is VERY low and can cause loss of consciousness and coma! We were sent to endocrinology and the endocrinologist thought maybe that number was a lab error. She ordered a 5 hour glucose tolerance test at the children's hospital. The doctor was a little confused about why/how she could be having such high and low numbers but suspected reactive hypoglycemia for the lows. This 5 hour test would show her blood sugars in 15-60 minute intervals after she drank the sugary drink.

Here she is after she got her IV for the test. It took two tries and she was so brave and still smiling! 


She wasn't allowed to leave the bed and I even had to carry her to the bathroom...I didn't realize she wouldn't be allowed to move at all for the entire test!! We brought her doctor kit and iPad and those two things kept her pretty busy! 

When she had her 5 hour GTT it didn't go well. They had to end the test after 3 hours. She initially shot up pretty high and then dropped to 50 at the 3 hour mark. She was having tons of symptoms and very upset and sick. I asked several times if the test could be ended at that point, only to find out she had been at 50 for 15 minutes already and they never told me because she wasn't having symptoms! The test was ended and she was able to eat/drink, which brought her blood sugar back up within 20 minutes. After that though, she was spent and so exhausted. Here is the poor girl 30 minutes after the ordeal:

On the way home we were supposed to stop at a spaghetti dinner fundraiser for a family adopting a child with DS, but we had to bow out since Zoya was so tired from the whole ordeal :( She passed out after less than 5 minutes in the car! 

We are still waiting on some of the other bloodwork that was done during this test (specifically insulin levels), but the initial diagnosis is reactive hypoglycemia and the doctor thinks this may be slow onset diabetes. There is more happening than JUST the reactive hypoglycemia because if thats ALL it was, she never would have shot up as high as she did.  Her body should have produced enough insulin at the right time to make sur that spike didn't happen, even after she drank pure sugar! I've heard that lots of kids who develop diabetes develop it after a bad illness or infection such as what happened to Zoya in September. Of course we are praying this is not the case! As far as the reactive hypoglycemia, we need to make sure she eats every 2 hours (3 hours at the most, except for overnight) and make sure she has protein with all meals and snacks, and never has carbs/sugar alone without protein.  Sugar/carbs alone could cause her sugar to spike and then plummet like what happened during her test. 

She already has a pretty clean diet and is gluten free, so to limit it even more made me a little sad. We changed her snacks at school from pretzels/veggie straws/fruit snacks/GF crackers to things with protein like cheese/meat rollups, pistachios, yogurt, sunbutter, etc. The first few days she cried at school about the changes. I was surprised by that because the things I sent in are things she loves at home! But I think it just threw her for a loop since she's had pretty much the same snacks for the past 2 years at school. This week went much better with the snack change so far. I let her help me pick out what to send to school and reviewed with her in the morning what her snack choices would be. 

This could very well explain some of the behavior difficulties we've been facing with Zoya this school year and why she seemed so up and down...why some days/times were GREAT and why others were awful. When her blood sugar is high she seems like she's on speed! When it's low she seems very tired, non-compliant and sometimes anxious. Now that I'm aware of the symptoms, I can say without a doubt that some of her "panic attacks" were not panic attacks, but low blood sugar :( We are still pretty confident, though, that her "general anxiety" is an accurate diagnosis since the medication is helping her so much. Having both of these issues, it's hard to determine which symptoms are attributed to which diagnosis :( 

It's hard having no birth family history when things like this arise. That information would be so helpful! We are hopeful that with small diet changes and doing other things to help her body heal, that we can keep her from developing diabetes a bit longer, or maybe all together. I know the thought is that if she is going to develop it, it'll happen regardless of changes we make, but we are still hoping that a formal diabetes diagnosis is not anywhere in the near future for her. I can't help but think it'd be one more thing that would make her less independent and while that doesn't bother ME, she already wants so badly to be independent at age FIVE, so I worry it will bother HER! If you can spare a prayer, we'd appreciate prayers for Zoya's health! I completely realize in the grand scheme of things diabetes is really pretty "easy" to handle....but we are just praying it's not the case for Zoya! If it is in our future we'll figure it out, but it sure would be nice not to have one more thing to make life harder for her! 

17 comments:

  1. Praying for you guys and for Zoya! I will be praying that God does indeed spare her from diabetes (now and in the future). So glad you were able to get some answers! :)

    ReplyDelete
  2. Many prayers for Zoya health. She hasn't looked the same in her pictures of late. I'm glad you are on a path to figure this all out for her. She's a beautiful little girl.

    ReplyDelete
  3. So Sorry to hear of Zoya's latest medical issues.Parents certainly know their children, so wonderful that you had the idea of checking her blood sugars. I do know that whatever the final dx is you will find ways to help her cope and live with it. As you said the fluctuations in her blood sugars certainly could have played a big part in her behavior. Carol

    ReplyDelete
  4. Precious Zoya! I definitely will be praying for her and especially that she can avoid a diabetes diagnosis! She looked so brave sitting there--and getting tall too lol! What a difference in the before and after--sweet girl looked totally wiped out. My mom was recently diagnosed as "borderline diabetic" (I realize there is really no comparing a young child and a 73 yr old woman lol) and her blood sugar drops down very low like that at times. She gets all shaky and breaks out in a cold sweat! I wasn't sure if it was an onset of anxiety, panic attacks or a blood sugar issue. She actually had to ASK her doctor for lancets and a machine to test her sugar--he hadn't planned on giving her any. I hadn't realized that it's recommended not to eat sugar alone but rather, with protein. Her doc gave her no specific diet guidelines to follow! Praying for you guys and esp. your sweet Zoya girl!

    ReplyDelete
  5. Good on you for persevering when you knew things were not right. I'll pray with you that you can avoid a diabetes diagnosis, at least for now!

    ReplyDelete
  6. Tons of spare prayers for Zoya, for you and Shawn, for the medical people handling all of this...for answers and most of all healing! Asking God to guide you on this "new" path and give you the tools and the expertise and finally the strength to continue with your loving care of your precious one. He knows......Praise Him! ((((BIG BIG HUGS))))!!!!

    ReplyDelete
  7. i'm praying for Zoya. I hope it's no diabetes for Zoya girl.

    ReplyDelete
  8. Lots of prayers coming Zoya's way. Sorry you are having to deal with any of this.

    ReplyDelete
  9. Sarah, I don't know your family in real life, but I love following along online and learning about your beautiful girls. Your daughters are absolutely gorgeous and amazing and have really inspired us to adopt a child with DS when the time is right. I'm sorry that you are going through a tough time with Miss Zoya. Praying for your little cutie and you all!!

    ReplyDelete
  10. Sarah, I don't know your family in real life, but I love following along online and learning about your beautiful girls. Your daughters are absolutely gorgeous and amazing and have really inspired us to adopt a child with DS when the time is right. I'm sorry that you are going through a tough time with Miss Zoya. Praying for your little cutie and you all!!

    ReplyDelete
  11. I just happened to watch Live with Kelly and Michael this morning (for the first time in a loooong time) and I saw you and your precious family in the Unstoppable Moms contest!!! Oh how I pray that you would win!! I'll be watching! (((HUGS)))!!!

    ReplyDelete
  12. I have a kiddo who has food dye allergies (specifically Red and Yellow) and her reaction is behavioral- like she can't get on top of her emotions if she's had the dye and she totally over-reacts/tantrums, etc- Could that be part of the behavior stuff? My son has hypoglycemia-like symptoms and his low blood sugar reaction is more angry than behavioral. Not sure if that helps, but thought I'd let you know… Love reading your blog!!!

    ReplyDelete
  13. Hi Sarah, we adopted our 5 year old boy from
    Ukraine and were surprised to learn that he is considered a second generation Chernobyl victim. We see an endocrinologist every 3 months and are trying to figure out his fluctuating thyroid levels. I assume your doc checked the thyroid as well. My guys mood changes with the levels. Prayers your way.

    ReplyDelete
  14. Continually keeping her health in our thoughts and prayers.

    ReplyDelete
  15. hi sara, I write from monterrey, mexico, and some days ago I saw a story in the news about a dog emergency, was a child of cozumel, mexico, I had sugar, levels rose and fell dramatically to the point of fainting . The dog and the child is had to train the dog sniffed and detected their sugar levels even being asleep, if the level was under the bark so that it could serve, not if is exactly the case with zoya but could be Greetings and good option you would like to annex my blog much you will visit us www.tgarzas.blogspot.mx

    ReplyDelete
  16. hi sara, I write from monterrey, mexico, and some days ago I saw a story in the news about a dog emergency, was a child of cozumel, mexico, I had sugar, levels rose and fell dramatically to the point of fainting . The dog and the child is had to train the dog sniffed and detected their sugar levels even being asleep, if the level was under the bark so that it could serve, not if is exactly the case with zoya but could be Greetings and good option you would like to annex my blog much you will visit us www.tgarzas.blogspot.mx

    ReplyDelete