I can't believe how long it's been since I last updated! This is just going to be a quick medical post from this week. Then maybe I can do a few posts about our summer adventures - Callie's trip out West, our family trip to Kentucky, zoo fun, swimming, and birthday parties! Eek - there's a lot to catch up on! :)
Ethan had his 6-month neurology appointment. The appointment went really well. He has gained weight and grown taller! :) So pleased with that! His headaches have really improved this summer. In fact, he's down to having a headache only about once every week or two! At least that was until a couple weeks ago. He had a really bad week and a half where his headaches were daily - and one of them was so bad he just sat in the bathroom screaming and sobbing. He NEVER reacts like that, so that was definitely a concern! Thankfully the really bad ones are not too common. We can't be sure what the cause is for the increased headache activity, so I am thinking it might just be the weather messing with him. We decided not to increase his headache medicine dose for a little while. Hopefully they will go back to the way they've been all summer and we won't need to worry about increasing his meds again. He's already had a few days headache-free, so I think we might be back on track -- knock on wood! **update: He's still doing well headache-wise. He's having them about once a week again thankfully!
We also discussed his behavioral concerns and tics. Thankfully his mouth tic from last year has gone away - that was a really obvious and irritating one. He does twitch his nose all the time now and a new hand tic has developed this summer - and is getting worse over the past few weeks. This one is him basically regripping things constantly - and now he's starting to do the motion even when he's not holding something. He is definitely more distractible over the summer, but we decided we really didn't want to increase his Adderall dose until after school starts. I'm not sure if he's just not as focused because he's not on a strict routine like school anymore. Hopefully he'll be able to focus better once school begins, but if not I'm supposed to call in to neurology and they will increase his meds. Unfortunately, one of the side effects of his ADHD meds is the possibility for his tics to worsen, so hopefully we won't need to go up on the dose! *Update: His tics have not worsened thankfully! In fact, they seem to have calmed down a little so hopefully that will continue to improve!
Dr. Friedman (neurologist) also gave us a referral for the Autism Clinic. We are waiting for them to call back and schedule his appointment. They will do an official evaluation to see where on the spectrum Ethan is, as well as letting us know what kind of therapies or help he may need. We also had our annual therapy assessment before the appointment. The therapist says that Ethan definitely needs both occupational and physical therapy. I will have to look back into where to go for therapy - our last place was nice but I didn't see much improvement with him. Ethan and Callie were their only peds patients for PT, so hopefully we can find a good pediatric practice near us that would be better.
All in all, the neurology appointment went well. We will take care of the other appointments and therapies, then we return in six months unless something comes up in the meantime.
Ethan had a cardiology appointment. We were supposed to have an echo done, but the office was running really behind and they decided to skip the echo today. He looked really great at the appointment anyway, so they didn't feel it was needed. In fact, Dr. G (cardiology) decided to change his every 3-month echos to every 6-months! Making progress! ;)
Ethan is doing surprisingly well! He had a great summer and was really healthy! He had a couple colds, but he actually was able to get over them on his own without antibiotics! No pneumonia all summer too - I think that's a first for us! :)
Today we set up our appointment plans. Every three months we will continue our appointments. Every six months we will do echos and blood work. We will continue to monitor his INR, do a full CBC, and continue checking his BNP - a test that basically shows how stressed his heart is. This number doubled in our last two tests (not good - the higher the number, the more stressed his heart is) so we definitely need to keep an eye on that.
*UPDATE:
We have been having a ton of school issues with Ethan unfortunately. Last year Ethan did really well. He was very quiet and struggled with focusing, but he behaved very well and ended up learning a lot. This year however is a completely different story. I receive notes or emails home from his teacher on a daily basis. He is very disruptive and apparently is repeating things. He repeats whatever the teacher says as well as what the other kids say. When she asks him to stop or be quiet, it only makes things worse and he becomes louder. She thinks that asking him to stop is worsening his anxiety/stress, so she tries to ignore it as much as possible. But obviously it's a very distracting thing to her and the other students, so something definitely needs to be done. They have removed him from class a couple times and sent him to his aide. Also letting him sit in the class library to look at books helps him calm down and be quiet. This is good, but we still need to figure out a way to get him to be calm with the rest of the class so everyone can learn! I emailed his neurologist about it this morning, so hopefully he will have some insight into something that might help. I also am still waiting on our Autism Clinic appointment, so hopefully I will hear from them very quickly and we can get some answers.
He also has been having a horrible time sleeping these past few weeks. His anxiety and meltdowns at bedtime have been through the roof, so I have been pretty tired lately! I don't know what's going on with him, but hopefully we can figure out a way to get him calm and happy again. It's been extremely frustrating and exhausting (mentally and physically) between his school and sleep struggles lately, so please keep us in your prayers. I hate that he's having such a hard time.
We ended up increasing his Adderall dose right after school began due to his behavior. Because of this we will have to do a Holter monitor and EKG next Monday. This med can affect heart rates, and since Ethan has a history with tachycardia and irregular heartbeats we have to be very diligent with his monitoring. We also are monitoring his weight since Adderall causes a lack of appetite. We fight to get every calorie in him as it is, so if he starts losing weight we'll have to increase his Periactin (headache medicine) to stimulate his appetite as well.
We have a very busy week coming up. Callie leaves for 6th grade camp on Wednesday! I can't believe it! I remember going to Mohican in sixth grade, so I am so excited for her. Even though it's a different camp for her, she is going to have a great time! We have soccer games, practices, running club, Girl Scouts, school band meeting, my school, work, and Ethan has 2 doctor appointments scheduled so far this week. We'll be busy, but hopefully it will be a very good week!
I am attaching pictures of the kids on the first day of school. I will do another post soon of their open houses with a lot more pictures! I also will work on catching up with pictures and info on all the fun things we've been up to!
