Summer has been fully of acronyms at our house. Gabriel has been attending STP (Summer Treatment Program) for ADHD (Attention deficit hyperactivity disorder) through our local children’s hospital. We heard first about the ADHD camp about a year and 1/2 ago. Then last summer, while a friends child was going through the program she allowed me to pick her brain and listen to her experiences. She had nothing but great things to say about the program. Her son was quite a bit older than G…entering 5th grade. So, as I listened I thought we would start saving up and maybe send Gabriel to camp when he was heading into 3rd or 4th grade. My thought was….He is doing alright in school. We’ll wait til he has a tough school year than try the camp. And with a price tag in the thousands we would need to start saving now to make it a reality in a few years.
Luckily, Chuck had a different opinion, he said the sooner the better. I went back to my friend and asked her thoughts. She agreed….go for it now. I am so glad we did! We starting planning last summer and saving to be able to afford it. Anyone who purchased Norwex from me this last year…Thank you! Not only do you have a fast, effective way to clean..we used the $ I made with my business to give Gabriel this opportunity.
We began the process for enrollment in Feb (I think). We gathered necessary paperwork from doctors, his teachers and set up a meeting with program directors to see if Gabriel would be a good fit. During the meeting the directors laid out the how’s and why’s behavioral therapies are provided. We left very impressed and excited!
The Summer Treatment Program is an amazing research based treatment program that has been around since the 80’s. It has been in our area for I believe 5 years. Gabriel goes to camp 5 days a week from 8-5 and Chuck and I attend a parents class 1 night a week. It has been wonderful. I’m not sure how to put it into words. Gabriel is having a lot of fun. He is getting academic support during 2 hours a day of classroom time. He is getting sport skill opportunities–soccer, dodgeball, baseball and basketball. He is learning how to regulate his behaviors and stay on task. He is making more eye contact and gaining in conversational skills! 2 weeks into camp we had seen such significant strides that I started planning and budgeting to make camp a possibility next summer as well!
In the midst of planning for summer camp we met with Gabriel’s epilepsy specialist to go over the results of the 24 hour EEG Gabriel did in November. Based on the results the doctor recommended an1 hour EEG (test that reads brain wave patterns) then depending on the results possibly weaning Felbamate. EEEEKKK!!!
Felbmate is the drug that stopped Gabriel’s seizures. We are 3 years seizure free thanks to this drug! Weaning the drug would mean that we slowly give him less and less to see if the seizures come back or not. The 24 hour EEG showed sparks, that may or may not ignite into seizures. The only way to know if they will is pull the medication and see what happens. TERRIFYING! While it is has been over 1000 days since having to sit with G while a seizure subsided I remember it like it was yesterday.
We are really thinking and praying about trying a wean. We are seriously considering it for a few reasons. 1. The drug is known to be hard on the liver…so why put his liver through something he doesn’t need. 2. The couple times we have been late with midday medication we have noticed he is more interactive and processes things more quickly. (Midday medication is the only one we ever miss, because the time of day is not consistently scheduled like wake up and bedtime). 3. Our doctor told us that Felbamate is a drug that can be added back in during a wean and successfully control seizures again (that is not the case in all seizure meds). Chuck and I will research this one more on our own…because that is what we do! 🙂
We decided not to schedule the EEG until after ADHD camp is over. We had planned and saved for so long we wanted him to get the most out of the opportunity without putting his body through anything extra. Also, with the possibility of breakthrough seizures, having him at school with a nurse or home with us seemed like a much better decision.
I finally scheduled the EEG this week. It will be August 8th. Praying readers…please pray with us for clear results and that God will guide us as we make the next decisions. It is scary and exciting to be 3 years seizure free and know that our next big decision could take our boy forward or backward.
So there is our Alphabet Soup update! 🙂
Sarah Mackay said:
Thank you so much for the update! I just said a big prayer for your EEG. I am still so thrilled that I happened upon your Facebook post this week referencing G’s camp. We are all in for trying to make it work next year for Sawyer. I read your stories and thoughts and am always hanging on my seat to see what you have done or think. You are walking a very similar road to ours, but are a bit further along in the school front. I am so glad that friends at a Building Better Moms meeting told me I had to meet you.
Thanks for your kind words Sarah! I’m so glad we were introduced too!