Update on Mr. Trey

Wow I can't believe how long its been since I last posted a blog. We have made it back home to Pullman and are trying to settle into normal life again. It was a long week up in Tacoma but we were able to find out some answers and now have a plan for the little man.

Trey's tummy bug subsided but the time we headed up to Tacoma for Trey's testing. I will soon explain but Trey's seizure activity had nothing to do with his illness during the week. When we saw our GI doctor while we were up there and we found that he has lost 2 lbs which is a significant amount for Trey. I spoke to his therapist that we are planning to see for the intensive feeding program in December at Seattle Children's. This weight loss may affect whether he is able to safely participate in their therapy program because the little guy just doesn't have enough reserve left. But hopefully we will be able to catch up by then.

Tuesday was a very long day for Trey. It was nice to be able to have both tests done (EEG and MRI) on the same day but an exhausting day for us all.

Trey had an EEG done first. He was such a trooper. I think he had over 30 electrodes taped to his head and then gauze wrapped all around his head. He looked like a little mummy. Those results showed that Trey has benign occipital epilepsy in childhood. This is a hereditary type of epilepsy that represents about 3% of all childhood epilepsy cases. So Curtis and I could have had it and just never experienced any seizure activity.

This kind of epilepsy is characterized by focal seizures (which Trey had) meaning there is abnormal electrical brain activity that occurs on only one side of the brain. The activity originates from the part of the brain called the occipital region.


The EEG will show occipital spike with both eyes open and closed. Here is an example not Trey's....


Most children outgrow the seizures after 2 to 4 years. Trey has been started on anti-epileptic drug to control any further seizure activity. We met with a neurologist at Mary Bridge who will continue to see Trey for the next couple of years. Trey will have another follow up appointment at the beginning of Nov. to see how the medicine is working.

After the EEG testing was done we headed over to have the MRI scan of the brain done. Trey really did amazing and was so brave. The sedation team at Mary Bridge did a wonderful job with Trey. They had a child life specialist who came to do lots of medical play before the IV poke. We gave him some sleepy medicine before (through his g-tube) to help relax him a little bit.

Here are some pics...



Obviously watching them put him to sleep was very difficult. Lots of tears for Mommy. I lost it when they took him away for the scan. I wasn't able to go with him because of the little sweet pea in my tummy.

So the MRI showed that Trey has Chiari I Malformation. This was found only because we did the MRI and has no connection with the seizure activity earlier in the week.

Here is an attachment to explain the condition in more depth.

www.mayfieldclinic.com/PE-Chiari.htm

After I got this news I was on information overload. The neurosurgeon in Tacoma believes Trey doesn't need surgery at this time. We will meet with him for the first time at the beginning of Nov. We also saw a neurosurgeon at Seattle Children's for a second opinion who also agrees that no surgery is needed right now. He is suggesting that Trey be followed closely and have another MRI scan in 6 months. I really felt comfortable with this doctor and his plan of care for Trey. He went over the scans with me and answered my endless list of questions.

One of the things we did discuss was whether this Chiari diagnosis is related to any of Trey's feeding struggles. He believes that it contributes to a small piece but not the majority. But something he will continue to monitor.

My anxiety has dropped significantly. The last couple of weeks seemed beyond overwhelming but we believe that everything has happened for a reason. If Trey hadn't had a seizure we might not have found this Chiari problem until way later down the road.

It has been a breath of fresh air seeing our little boy running around with energy, spunk and laughter again. Curtis and I were laughing how we were thankful just to have him get into things again. Thank you all for sending encouragement and prayers our way.

Some recent pictures since we have been home.





We love this little boy more than words can express.