Developmental Milestones

It’s amazing how fast 3 months go by.  It seems like just yesterday, we were welcoming our little baby girl Katie into this world.  Now she is 3 months old and so far seems to be developing normally.  She smiles at us every day and is beginning to have a little giggle, especially when Dan tickles her under the chin.  What amazes me is that looking back at Andy’s development, I don’t remember him making his developmental milestones as early as her.  Even at this stage, though he seemed to be gaining weight normally, I don’t remember him rolling over and laughing.  All I remember at this stage of his development is colic.  He was always crying in the evening.  When Andy was 3 months old, I remember Dan carrying him around in a football hold.  That was the only way he would stop crying.  Why is it that as parents we blame ourselves for not seeing how sick our children were?  Andy was growing.  I have proof of it in his baby book where I meticulously recorded his weight and length for the first 4 months of his life.  I keep wondering now if things would be different if I had taken him to the doctor earlier.  But I have to remind myself that what it is is what it is.  We take things in stride.  Some days are better than others.  Some hours are worse.  Developmentally, Andy is somewhere around a 2 1/2 year old.  It can get frustrating for us because he is chronologically 4 1/2 years old so he “looks” like he should be able to do things other 4 year olds do, but he can’t.  He is not potty trained.  He has limited communication skills.  He throws temper tantrums like he is in his terrible twos, because he is.  I have to accept him as he is, try to help him on his way, and hope that eventually I will be able to talk to my son and understand him as he understands me.  It’s such a simple thing that most parents of “normal” children never even think about.  Still I wonder, I fear.  Will Katie be the same or will she develop more “normally” since we caught her diabetes sooner and had her on the glyburide so early.  There is reason to hope.  Only time will tell.

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About Christy

Christy Vacchio is a former teacher and now Science Instructional Coach in Cincinnati. She is an avid reader and researcher. While she has her bachelor's and master's degrees in education, she plans to get her PhD in Neuroscience in the future. She hopes to participate in research on Neonatal Diabetes and Developmental Delays one day.

5 thoughts on “Developmental Milestones

  1. I was wondering. How Long did u wait to take Andy to the doctor about his diabetes. Did he have seizures? Since he has some developmental delays, that’s usually childhood delays correct? It doesn’t go on until he’s older? It’s a temporary thing I’m assuming? Do all kids have developmental delays with nenonatal diabetes?

  2. We were taking Andy to the doctor for about 3 weeks before he went to the ER with DKA. At that time he was 18 weeks old. While we are sure he had it since birth, he did not start showing symptoms until he was 4 months old. He never had seizures though some children with neonatal diabetes do have seizures. His developmental delays may be related to the late diagnosis and/or the length of time he was on insulin. It is difficult to tell because this research is still in it’s infancy. Not all children with neonatal diabetes have developmental delays. In fact, I believe research so far has data that only about 20% of them have some sort of neurological symptoms. However, for the children with my kids’ specific mutation (V59M), the incidence is higher at around 80%. Some of the children younger than my son seem to have less severe delays and one that we know of has none at all. The thinking is that the earlier you get them on oral medication as opposed to insulin, the less severe the delays will be, if they have any at all. For my daughter, she was never on insulin. We started her on glyburide at 10 days old and so far no delays that we have seen. She is being monitored closely by the birth-3 program in our state and also by a developmental pediatrician. It is, unfortuntely, one of those things we will only know in hind-sight down the road. Hope that answers your questions. Thanks for the interest.

  3. Thanks so much for your answer… it did answer alot of my neice is in the hospital right now and is diagnosed with neonatal diabetes… she is not even two months old, and her sugar had spiked up to above 1000… she is fine now, and on insulin until her genetic testing results come back…hopefully she will be on the medication..we are praying fo that…they checked her brain, brain activity, etc…and everything is fine..thank god….the story of lily jaffe also gives us hope…good luck to u…thanks so much for your blog…we will defiantely visit it often!!

  4. Best of luck to your niece. I pray that all babies like ours can get diagnosed early on. I am glad to hear that she is being tested so early. So often, doctors don’t know or don’t test early enough. Please update me when you find out.

  5. Christy,
    My name is Nichole Rozzell, I too live in NC, Durham. I am a diabetic, diagnosed at 4 months of age, I am now 35. I had twin girls three months ago, and at 8 weeks, one of my girls was diagnosed, by a fluke with diabetes. She is seen at Duke, and we are awaiting the genetic testing. I am curious as to where you are in NC. The doctors here seem kind of in awe with this. I am so lost right now and found your blog on accident, it has given me hope. I would like to talk to you if possible. Thanks, Nichole

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