Hayes ’s Story

Site created on July 26, 2018

We have had so many people wanting updates on Hayes. So here is our journey so far this week. The nightmare that we keep wanting to wake up from. Please, please, please disregard why Caringbridge has a Donation section. We are in NO way taking donations but theres not an option to remove it. We just want to update you so you can continue to keep Hayes in your prayers.

Newest Update

Journal entry by Kylie Kulp - Talacko

HAYES updates for all those asking...

Last week the tech told us Hayes was having 'numerous seizures'. She told me by the looks of the report it wont be long until the doctor calls me. Well, after me calling multiple times a day and not hearing from the doc after 6 days I called to get an appointment at Boystown for a 2nd opinion. The doctor finally called me back on day 7 and told me the tech was in the wrong for telling me those were seizures because 1. Its not her job but 2. They weren't seizures!!!!!!!! GReAT news, right? 

It was a long 7 days and I cried when she told me the news. However, I am annoyed that took 7 days....so I kept my appointment today with Dr. Klein at Boystown.  She is a pediatric neurologist and epileptologist (is that even the right word? She specializes in epilepsy. (Thanks for the referral from amazing friends- Laura and Julia, who worked in neurology with the Dr. that started this at Boystown).

Anyways, she was awesome and wants to take him on as a patient. She is already switching his meds (will take 3 months to fully go off phenobarbital and switch to keppra) She hates to see kids on Phenobarbital for long periods of time and especially at his age because of behavioral issues (which his temper tantrums have started and she witnessed them at the office today). Therapy has also mentioned that things he was doing, he isn't doing anymore. So Doc said she is switching because of that as well.....it is literally getting in the way of him learning. She said having a stroke is not effecting him as much now but by 2nd or 3rd grade it will show for sure signs if we dont get him off this med to let his brain work. She also said the EEG is showing numerous abnormal brain waves so the meds are stopping the seizures but without meds,  he would be having them. She said he will be on seizure meds his whole life.....

Eyes: she made more sense to me than the other neurologist. She said If he had this stroke anywhere else in the brain, than where it was, he wouldn't ever walk again, she said it was a massive stroke for such a little guy. She also said, that yes he may not be blind but she is still very concerned with his eyes. Glasses only help the lens part but there more brain functions going on in there that is going to only get worse as he gets older. It's like having an older camera that needs the film to work. He doesn't have the full functioning film for his eyes to work aka learn.....as I am writing this I dont even know if this all makes sense. I got a lot of info today!!! 

Going forward: she wants to do a full day and night EEG since we never know if hes actually having seizures. We are just making sure my insurance will cover all these studies she is wanting to do. 

She gave us emergency meds if he starts having a seizure over 5 minutes. Also went over what we do if he does start having seizures.....this could happen while switching meds. 

This is a lot of info in one appointment but she spent over an hour in the room with us. I am so happy she took her time and didnt make me feel rushed. It is going to be a scary 3 months of getting his meds switched over but I am putting all this in God's hands and trusting him on this!!! 

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