Ephriam’s Story

I get asked all the time about Ephriam so I thought that I would set up a page on my blog that I could add to as need to tell his story.

First off know that he is a perfect gift from God. He is a treasure in our family’s lives for sure. He seems to have anyone who crosses his path to have him them eating out of the palm of his hand.

So how did it all start? Well Ephriam was born on cold December day with 2 feet of snow on the ground. He was perfect. Actually I could say over all he was a perfect baby. He had a tough time learning to breastfeed but he did learn. He was jaundice and ended up under lots of lights to get rid of the jaundice. Otherwise he was a happy baby who would eat, sleep, and poop as he should. He was never really all that fussy. Developmentally he was right on track. He hit all his mile stones around the time he should have. Except for walking, he was a late walker but with lots of practice with mom and dad he caught on quick. At 2 he was singing Old McDonald had a farm, his ABC’s, counting to 10 and was right on track. Then he just started not saying things he had said before. I tried to get him to talk but the only way I could was to give him an M&M. Then slowly nothing.

Before he stopped talking completely I took him to the family doctor to see what she thought. She agreed that he needed speech and even some Occupational Therapy(OT) . So we had him evaluated at Cincinnati Children’s Hospital Medical Center (CCHMC) for speech, OT, and he saw a doctor in the Division of Developmental and Behavioral Pedicatics (DDBP). He was recommended for speech for an hour every week, OT for every other week, and the DDBP ordered blood test, pysch eval (really just an IQ test) and to meet back up to discuss findings.

When we met back up with the DDBP we found that he had Global Developmental Delays. Back in the day when I was a kid this would have been called Mild Mental Retardation. When he got is ‘official’ diagnosis he had been doing speech and OT for almost 2 years and was attending Preschool through the city schools for almost a year. He was making progress slowly but any progress was better than none.

There were many check ups with the DDBP and the family doctor. Then one day I felt like Ephriam was having seizures. Ones where you would stare off into space and then come back after 30-60 seconds. So I called the family doctor and she ordered for him to see neurology at CCHMC, MRI, 24 hour EEG pending the results of the MRI. It took a long time to see the neurologist so we have the MRI done first. I have to say out of all the testing that they did, this was the worst for Ephriam. I had never seen him so worked up about getting a test done. Truly broke his mom’s heart that day. When the nurse of the family practice called back she left a message saying that the MRI was ‘mostly’ normal. Now to tell a mom who is in the medical field that it was ‘mostly’ normal freak his mom out. What does ‘mostly’ mean? I called the office for 10 business days straight trying to get an answer with no return phone call. So I made the move to switch him to a Pediatrician who has a background in Development with the help from a friend who was a Pediatric doctor who specialized in neonates. The Pediatrician was able to get us in almost right away. And the only thing that the found on his MRI was that his brain sits a little low but nothing that was affecting him. And that his sinus were filled with fluid. Very Thankful that his brain was fine. She recommended that we go ahead and do the 24 hour EEG. The EEG took forever to get results on and it came back normal. No seizures and no reason for his developmental delays.

We change DDBP from a physician to the certified nurse practitioner (CNP) because she was easier to get in to see and would return phone calls. She suggested that we do some more blood work for genetic disorders and meet with the genetic doctor in the DDBP. She said this would be our last thing to see what why Ephriam has delays. So we had some more blood work done and the results came back to nothing they could find. We talk to the genetic doctor about what she thought and she said that it was probably 50-70 genes that were interacting and that we don’t have the technology right now to see that. She said that there are major advances in genetics being made so in 10 years we might know. She suggested we give up our search on why and help Ephriam to return help him be successful in life.

We returned the CNP and she thought that Ephriam might benefit from medication for ADHD. She said she would talk with the doctor that specialized in that and see what she said. She agreed  that since Ephriam is in constant movement unless he sleeping that we try Ephriam on Ritalin. I was so unsure of that for him. She said to read the material, talk to my husband, talk to Ephriam’s teachers and therapist and see what they say. So I did. I was a bit nervous with all the side effects of the drug but his teachers and therapist thought it would be a good move for him to at least try. If it didn’t work at least we would know that it wouldn’t help. By this time Ephriam was half way through is first grade year. We tried and wouldn’t know that it let Ephriam sit in a chair at school! The kid hadn’t sat still in a chair for a long time! We hoped that it would cause him to learn better.

So here we are a year and half after starting him on Ritalin and this past year he has had some great growth! We are still doing speech and OT but he is making good gains. He works so hard and doesn’t stray too much from the task. He is outstanding in his ability to focus with the Ritalin. The only problem that we have had with the Ritalin was that he has had problems gaining weight. We have had to work on his diet and feed him high calorie foods especially those loaded with protein. It has not been an easy task but I think we have gotten to a point where he is eating better at school and gaining a little at a time. We will continue with what we are doing now and our doctors appointments are spreading out which is nice. We still see the DDBP every 3 months for a medication check too.

He is still a happy and healthy kid and we love seeing him grow so much!

So I hope that helps people to know more about him. He is impacting the world for the good for sure. I know that God has special plans for such a special little boy. I am blessed to be his mom and be able to see the daily progress in his work that he works so hard for.

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