new meds

All right...finally an update!
Two days after our neurology appointment electrophysiology called to schedule a holter monitor. We got right in thankfully and did a 24-hour monitor. Ethan did great for it even while having to wear it to school.

Stickers always wreak havoc on Ethan's skin. Thankfully these healed up within 2 days :)

The weather was really great so Ethan was able to play outside, exert himself a bit, and do his normal routine so the doctors could see how his heart handles his daily activities. We got the call on Friday saying that the results look good! Apparently his heart rate is strong and even - thankfully! We've had so many rhythm issues with him throughout his life that I was pretty nervous about these results! He's already on two medications for it, so I didn't know what to really expect if the results came back bad! So relieved we don't have to worry about that now! :)

You can see the holter monitor pouch sticking out beneath his sweatshirt

Friday afternoon we got the call from the doctors saying that Ethan could start Adderall. *shudder* I went downtown to pick up his prescription since they couldn't call it into the pharmacy due to it being a controlled substance. I made sure to pick it up Friday so he could take it over the weekend and I could observe him. I didn't want to give him a pill Monday morning and send him off to school. There are a bunch of potential side effects (heart rhythm issues, racing heart, etc) that I wanted to watch for. Saturday he handled it pretty well! No heart issues as far as we could tell, but he did have some of the smaller side effects. His appetite was terrible (anorexic effects are a problem with this drug) and he had the "come-down effect" they warned us about. It's just him getting extremely whiny and cranky late afternoon as the drug wears off. He also DID NOT SLEEP! They said this could cause sleep issues, but wow he didn't go to bed until 3:30am and then was awake for the day at 7:30! I couldn't believe it!
Today went so much better. His appetite was still definitely decreased, but he ate a pretty decent dinner later in the day. Maybe we'll just have to give him lots of food at night when the meds wear off. Heart kids definitely can't lose weight! We also didn't really notice much of the "coming down" effect like yesterday, so hopefully that won't be a problem. If it is a problem, he'll need another med to take in the afternoon to counteract it. I definitely don't want to go that route! I pray that tonight he goes to sleep - he's still wide awake now at 10pm.
Tomorrow he returns to school. I'm going to ask the teachers to let me know if the meds are improving things or not. Their report this week will help determine if he needs a dose change or a different med. I pray that this really helps him and he can finally relax enough to pay attention and participate in school!

My parents recently went to New Orleans and brought the kids back some masks. They loved them!

Ethan is also dealing with a MAJOR case of separation anxiety. It started a few weeks ago and hasn't improved at all. :( Don't know what started it, but it definitely needs to stop! I can't leave him at all! Every time I try to run to the store, drop him off at someone's house, etc he goes into panic mode. It's just screaming and crying terribly - and I have to actually pry him off of me! I end up having to take him everywhere almost all the time! We even had to resort to watching church online (which we do whenever he's sick anyway) because he wouldn't handle going into his Sunday school classroom. *sigh* I pray that this ends quickly because it's driving me nuts! :)

On a happier note, we had a kindergarten open house last week! Ethan was able to tour the school, see some kindergarten classrooms, and meet some teachers. He of course wasn't social with anyone - even though a little boy tried to chat with him and be his friend. He really needs to figure out how to communicate with other people or else he's going to be in trouble next year trying to make new friends! Hopefully he'll continue to improve with his speech and that'll give him the confidence to hold a conversation with his peers. He is looking forward to kindergarten, so that's so good!

The kids have also been enjoying playing with the dog and going to the park in the warm weather we had yesterday!

Ethan was pretending to be a "lifeguard dog" - which is apparently a police dog. He was very excited to see one on TV when we were watching the news about Boston, so now that's what he wants to be! I told him maybe he can be a policeman and own a police dog, but actually being the police dog is going to be difficult... :)

Callie riding Moose

And for the park:

Please keep Ethan in your prayers that this medicine helps him out and has none of the side effects. Please also pray that his sleeping and separation anxiety issues go away!

Also please keep a fellow heart family in your prayers. I usually don't post about other heart kids, but we've been following him for a long time since he has heterotaxy just like Ethan. Sadly, little Ryker earned his angel wings a couple days ago. Please keep his family in your prayers!

I'll keep you all posted with how Ethan handles his meds this week and any new news :)

Neurology

We went to the neurology clinic last week. Ethan has been struggling a lot in school, especially this year. We went in to have him evaluated for ADHD and any other problems that are common in CHD kids. Our doctor gave a talk to our heart group last month, and explained all about how ADHD has an extremely high prevalence in CHD kids - around 40-50% as opposed to the normal 4-5%. After our appointment he claimed that Ethan definitely does appear to have ADHD. He also said Ethan has motor apraxia - which after the heart group meeting I had suspected. This means that his coordination is terrible basically. Sequencing motor functions is a struggle - things like skipping, jumping, and more complex motor things as opposed to the basic walking, running, etc. We already know he was diagnosed with speech apraxia years ago. Thankfully he's been progressing in his physical therapy, and hopefully will continue to improve as the warm weather comes and he gets out more to play and practice.

For the ADHD we are trying to find out if medication will be allowed. Most of the meds for this contain stimulants and/or things that mess with the heart rhythm. Since Ethan already has major rhythm issues we're not sure if he'll get approved or not. Hopefully between the cardiologists and neurology they can find the right medication to help him. He also said that getting his ADHD improved will help him sleep. The boy just cannot sleep - and the doctor thinks maybe his brain just can't shut down at night to allow him to fall asleep. Hopefully we can get that figured out too. He didn't know what to do about the middle of the night waking up though. That has nothing to do with ADHD apparently. Ethan's normal night schedule is bedtime routine starting about 8:30. By the time books, songs, and prayers are done it's about 9pm. He doesn't actually fall asleep usually until around 11:30pm, then wakes up again between 3-4am. Then he's up for the day between 7-7:30am. That's just not nearly enough sleep for him - especially with his heart!

They also are considering a headache medication, but I think I'm going to try to hold off on that until after his next cath. Cardiology is going to put a stent in the SVC to relieve the pressure there, and we think that might be causing his frequent headaches. If that can get fixed without more medication I would be thrilled. That will be happening soon (cath in the next couple of months) so hopefully they'll have no problem waiting on the medicine.

Neurology said they would talk with cardiology this past week, so we should know within the next day or two about the medication plans. We are supposed to return in about three months to do a full neuro exam - takes about three hours including the neurocardiology clinic, neurology, and behavioral clinic. That should be interesting...  :)

Other than that things are going fairly well. Ethan is sick right now with a lot of congestion and a wet cough. He's back to his full routine of breathing treatments and the vest. He was really bad over the weekend, but today he's showing signs of improvement so hopefully he'll be feeling back to normal soon!

And here's some pictures of Ethan playing with a worm he dug up this past weekend. :) This boy is a nut!