Infant Shudder Update

Hello Everyone!

I am so sorry I disappeared recently. It has taken a lot of time and focus to get Emma’s sugar and insulin ratios adjusted. We are still far from perfect but I am so happy to report she is doing well with her diabetes. She is so strong and amazes us everyday!

Both Emma and I are getting used to our routines and life with three diabetics under one roof! Speaking of one roof, our family recently moved into a beautiful new house! We are so excited for this chapter in our lives. I can look around and see all the memories that we will create here!

In other news I wanted to give an update on Emma’s Infant Shudder Syndrome. From about July until mid November her shudders seemed to disappear. If she had any it would at most be one shudder over a two weeks span.

We were so relieved, we had to deal with her diagnosis of Type one diabetes during this time so we were glad to have one less thing to worry about.

About 3 weeks ago Emma’s shudders returned. They were not as frequent as the ones she had in May but they were definitely noticeable. Her doctor had mentioned that they could come and go until the age of two so we tried not to worry to much.

Last Tuesday I was cleaning up dinner and Emma was coloring in her high chair. She had a few shudders but was still happy so I didn’t think to much of it. A few moments into loading the dishwasher I noticed that Emma lost all the color in her face her mouth and nose had turned blue. I ran to my purse to call 911 but as soon as I found my phone her color had returned.

We took her to Boston Children’s Emergency Room where they did an EKG and X-ray to confirm that this wasn’t caused by swallowing something or a heart problem. Both test came back perfectly fine.

A neurologist came in next to take a look at Emma, review the videos from the shudders she had over the summer, and talk to us about Emma’s development.

After speaking with us she felt comfortable saying that this incident was isolated and wouldn’t happen again. But they also did not have answers as to what could have caused it. They want us to monitor her breathing and her shudders until she can get her EEG test on December 15th.

I will update y’all on her EEG results after it is done. If anyone has experienced anything similar please reach out at this point we are desperate for answers!

We are not doctors this is just a report of what we experienced with Emma’s shudders. If you are worried about your child please seek medical help!

Thank you,

Michelle

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