Looking for & finding answers.

At the end of the school year this past June, the amount of progress Colleen made was astonishing and I was excited for her to continue that progress into summer school. Her only setback during the time was a bout of strep but she seemed better after a round of antibiotics. Then, it was her Disney trip, which. I knew with the heat, was going to be a little tough.

Never would I have thought that she was going to struggle so much at the beginning of the school year. Between increased fatigue, myoclonic jerks, and seizures, there was obviously something going on. We ended up meeting with her school and got to see the progress she made vs where she was and it was clear there was a major issue. Two trips to the pediatrician to rule anything else out, like having mono or even something genetic like hypothyroidism, since that’s something I have. Her tests came back fine, which is both good and bad. Of course, I don’t want any bad results, but on the flip side, it’s stressful because there’s clearly something different.

Finally, last week, made the annual trip to Boston Children’s for her neurologist appointment. She had a EEG scheduled in the morning and then a follow up that afternoon. I don’t think I’ve ever hoped for a myoclonic jerk, but they’ve never been able to capture one during the EEG. She didn’t have one while awake, but they were able to capture one disrupting her sleep. I think this was a clear reason why she’s so tired during the day, especially if they’re waking her up so abruptly.

Post EEG nap!

Our original appointment time with her doctor wasn’t until 3:30, so we were going to try to find something to do, but they were able to page the doctor and gee her appointment for 1pm, which meant only a 45 minute wait! They actually initially told us they couldn’t get her in earlier, but with her being so tired, I let her sleep. While waiting, that’s when I found out we could be seen sooner!

We met with her doctor, I showed him the note from her teacher (she did an excellent job with writing things she was able to do vs now) and our own observations. I told him about the tests and thinking something would come back and the clear reason. Then we discussed options. While discussing where we could go from there, we had to call the pediatrician to get her med level results and found out that last year when we came, her level was in the 80’s. This appointment, it was only 65. We ended up deciding that we would increase her morning dose and could possibly increase a little more if needed. What I love about Boston and her doctor is that he really explains things in a way we can understand and works with us to try to come up with the best course of action for Colleen.

With a plan, we headed home. Friday morning, Colleen went to school and I prayed there wouldn’t be a phone call. It was a huge sigh of relief when her teachers told me she had the best day since the beginning of the school year. One little dosage increase can have that much of an impact?! And the answer is yes! Colleen has gained about 4 Ibs and has gotten taller. It made me realize that maybe she needs to be seen twice a year vs once, because if she’s growing that much, we need to be on top of her medication dosage.

I’m so relieved. Well, that may be an understatement. She’s worked so hard to get to where she is, it was hard to watch her struggle so hard in all aspects of her daily life. Thankfully, I can not recognize when it might be time, and of course, we have other plans just in case, because it’s really only been a few days.

And, as a final note, can we take a moment to discuss post-EEG hair? When her doctor was close, obviously we can go right home and give her a bath. They do as best as they can after they take the leads off to get the gunk out of her hair, but there’s only so much a washcloth can do. This time, they used a washcloth and baby shampoo and I was able to brush it and it looked slightly better. What do you do after an EEG? I kind of wish there was a room you could use just for a good hair wash!

Advertisements

One week post stem cells

I realize this is late now! But here is the post I started:

Friday was one week post stem cells, and I thought it would be good to share some things we notice with Colleen.

I will be honest and say that there was a part of me that was hoping after a few days, we would be able to witness something amazing. 9 days after, what we are seeing is Colleen using more should when vocalizing. Before, that was something that seemed to come and go. For the past week, she’s been using sounds that I haven’t necessarily heard from her before. In the car earlier this week and when I turned on the radio, it seemed like her little way of singing. I would so love to be able to communicate with Colleen more easily.

Second, is that she seems more focused on things and takes special interest. Like having her nailed clipped, she intently watched!

She had a neurologist appointment on Wednesday this week at Boston Children’s, along with an EEG. What I love about them is that they work with us to come up with a plan that everyone agrees on and are not interested in over-medicating Colleen. In the past, other doctors have tried to control the spikes on her EEG. Boston wants Colleen to be able to function at her best while having no seizures. Still awaiting results on her EEG, so hopefully I will find out after the long holiday weekend!

Boston

Hull, MA has been our go-to vacation spot for the past few years. It’s right by the ocean, the city and isn’t too terrible of a drive. This year, I decided that along with our vacation, I wanted to see if we could get Colleen in for a second opinion at Boston Children’s Hospital. This started with a phone call. I was actually surprised how relatively easy it was to get her seen there. We gave all of our info, sent her records (where they determined if we would see the Neurology department or the epilepsy department) then scheduled our appointment. 

I asked about an appointment during or scheduled vacation, and they were able to fit is in! 

I swear we pack half the house to take our vacation. We took Colleen’s bed since it’s portable and brought our inflatable mattrice. Learned the hard way last year that Colleen was too tall for her pack-and-play, and she got way too much enjoyment in jumping in the just barely taller loaner crib. After that, it was clothes and some toys for her. 

The drive down itself wasn’t too bad. The biggest issue last year was Colleen eating and drinking before and during the trip and not being able to burp, which meant a very angry baby. She was considerably better this year.

We left Monday. Our appointment with Boston was Tuesday. I had initially looked up to see if we could take the ferry from Hull to the hospital, but the hassle of lugging a stroller and everything required then trying or get on trains afterward just seemed like too much of a hassle, so we just drove.

The actual appointment itself went very well. With so much uncertainly around her progress and all that is happening with her increased amount of seizures, it was incredibly relieving to walk in to a place and have a solid plan. We have some small steps (bumping up her keppra) and possibly changing her med if that doesn’t do the trick. They had a cancelation on Thursday for an EEG, so we took that. The tech asked us if they always looked that way (the amount of spikes) and I said yes, unfortunately. I keep hoping they’ll decrease, but since she’s had so many breakthrough seizures in the past few months, I knew it was unlikely. 

For now, we have another trip planned in November. 

I think in terms of vacation, we’ll definitely have to stay longer. Between traveling to the city and just travel to and from home, we didn’t get to do as much as hoped. There was some beach time, but I really wanted to take Colleen to the hotel pool. It’s a tad warmer than the ocean! We did also get to take her to the aquarium, which she loved. Favorite spot for sure. 


We’ll definitely do more in the city in a future trip.