16 May 2013

Neurology and Developmental Pediatrics

We had a busy day today with appointments for Luke.  We started off for the Cleveland Clinic around 7:45 this morning and I was joined by one of my past 4H-ers, Tessa.  Tessa is a college sophomore now and she agreed to spend the day with us so she could help me with Luke.  I hurt my back over the weekend and have been having trouble with bending and lifting, both of which are required for getting Luke's carseat in and out of the car.  Not only was Tessa a big help, but she was also great company and I really enjoyed getting to spend the day with her getting caught up!

Our schedule today included visits with neurology and developmental pediatrics.  We were referred to neurology because when Luke was between 3 ½ and 4 months old, we noticed him overusing his right hand.  Babies are supposed to be ambidextrous until they are at least 18 months old (if not older) so a tendency to use only one side of their body could indicate an infantile stroke or another neurological issue where the brain was missing some connections.  I also shared with the doctor that I’ve observed him staring into space sometimes – I know that infantile spasms or seizures are more common in the Down syndrome population and in the back of my mind, I can recall seeing some red flags – that said, I’ve read that we are supposed to watch for cluster like jerking motions and I’m happy to say that I’ve never to my knowledge witnessed them before.  The doctor was pleased with Luke’s cooing and his ability to vocalize and he also made nice comments about his head and neck strength.  All in all, he thinks that Luke seems okay, however he has ordered an EEG and brain ultrasound for next week to validate there isn’t something going on that we aren’t able to observe.  Fortunately we were able to schedule these tests for next Thursday when we already had planned to be back at the Clinic for a follow up appointment with Luke’s hematologist.  We scheduled a follow up with neurology a few weeks from now and discussed a “heart and brain clinic” approach they take in their office for kids with congenital heart defects… a clinic that Luke will be invited to participate in.  Basically, research shows that children with congenital heart defects are also up to 50% more likely to have learning disorders – being congenital, the heart defect happens for the baby while it’s still in utero.  Apparently there can essentially also be congenital-type brain issues that are related to that early mis-development that results in the heart defect.  We know Luke will have some level of learning disability with his Down syndrome so we are a little different than some other patients that they will see in the clinic.  The clinic will be set up with various disciplines of pediatric medicine who will examine Luke and consult with us on his progress.  They will also routinely administer a standardized learning test called the Balyley Scales Test, beginning a few months from now.  How he scores on this test will help us identify how to better assist him in his therapy sessions. 

Next we drove down to Strongsville to meet with a Developmental Pediatrician.  Like her title says, she is a pediatrician who specializes in children with developmental delays and disabilities – generally, she works with individuals with Down syndrome, Autism, ADHD, ADD, etc.  She commented on how great Luke’s muscle tone is… actually describing it as normal-low or maybe even just normal compared to typical children.  She also indicated that Luke exhibited great eye contact (poor eye contact could be an early indicator of Autism, which is up to 10% more prevalent in children with DS).   She really didn’t have anything new to add other than we discussed the need for Luke to see a pediatric ophthalmologist to get his eyes tested.  Cataracts are more prevalent with individuals with Down syndrome so getting him tested is really important.  Obviously you need all five of your senses to best explore the world around you and to learn about your environment – if Luke does have problems with seeing, we want to make sure to get him glasses to help him correct the issue.  Not that I want to deal with the hassle of an infant in glasses, but they are so stinking cute that if he has to have them, I’m sure we can make the most of it!  We did learn that Luke continues to grow – he weighed in at 14 pounds, 3 ounces and measured 24 inches in length.  This doctor also shared that the Clinic is working on organizing a Downs Clinic… similar to the heart and brain clinic mentioned above, but this one would be specific to Luke’s DS.  The doctor mentioned they are in the early stages and that they will eventually be looking for a parent advisory council to help them as they get organized and she mentioned that if I were interested in being a part of the group, she would be happy to put my name on the list!  How exciting!  I would LOVE to get involved in a cause that could potentially help my son and would definitely help me to build my network with medical professionals and other parents of children with DS!  

It was a long but good day!  Upon arriving home, one of Luke’s physical therapists visited for her weekly session and we called it a night.  I was so grateful for us to get good news during our appointments and really enjoyed spending the day with Tessa too!  I only wished I would have taken a picture of her and Luke to share! 

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