Skip to main content

Neuro and GI follow-ups, part 1

It has been a long day. (So long, in fact, that this will be split into 2 posts because I have a lot to write about.) Actually, first it was a really long night. Raya woke up around 10 last night, which isn't unusual. She wandered out into the kitchen and said she needed a drink. Then she went back to bed. Then she reappeared 30 seconds later to tell me something and went back to bed. Then she reappeared about a minute later to get another drink. Then she came out about a minute after that with a blanket and no less than 5 stuffed animals and said that she just wanted to lay down with me. At that point, she was totally awake and in a pleasant mood so I didn't think it had anything to do with her not feeling good. She didn't show any signs of not feeling good.

When I was ready to go to bed, she was not ready to go back to her bed so she made herself a little spot on the floor next to my bed. That was fine with me because it meant that her pump was within arm's reach of my bed so I didn't have to get up and walk to her room to turn it off at midnight. I don't know at what point in the night she got in bed with us but holy smokes was she restless! She was tossing and turning, fussing, hitting me, pushing me with her foot, etc. Finally at 4:00, I got whacked across the face and enough was enough. I told her I was going to the couch and after a little bit of pouting and fussing, she came too. I figured at least that way Donny would get one good hour of sleep before he had to get up for work.

It was a lousy night's sleep followed by kids fighting over something incredibly stupid at 6:00, followed by the nastiest diarrhea poop-splosion Raya has had in a long time. It had that definite funky diarrhea odor to it, plus the very strong smell of the chocolate Neocate she had in her pump last night. She's had chocolate Neocate before, so I don't think that was the problem. Like I said before, she has no other symptoms or signs of an illness and her teacher said none of the kids in her class at school have been absent with stomach bugs, so I don't know (yet) where this came from.

After I cleaned her up and got her ready for school (with the help of her awesome big sister) we got the big kids off to the bus stop. I got her meds ready and when I was about to give them to her, she said that her stomach was full of formula. Because of the poop-splosion, I decided to vent her into a catheter bag and see what came out. Sure enough, it was formula. I got about 2 ounces out, along with some air, and stopped. Given that her last feed had stopped shortly after midnight and it was 7:30, that was a long time for formula to sit in her stomach. What's worse was that there were little orange floaties in it. After racking my brain to try and figure out what it was, I realized that it was little bits of the peaches she had eaten before noon yesterday. As in 19-ish hours before. Not great. If she does happen to have some kind of mild stomach virus, that would actually be better news than just having her motility be that crappy.

Speaking of crappy, just before I left to take her to school, I found a puddle of diarrhea on her bedroom floor. Dang poop-splosion. While she was at school I finished prepping my notes for our visits with the neurologist and GI doctor this afternoon. I don't like seeing more than one doctor in a day but our GI appointment got moved from Monday morning to this afternoon and I really just wanted to see GI so I didn't care.

I picked Raya up a few minutes early from school and we headed to the clinic. This may not seem blog-worthy but the parking lot was packed (it's usually pretty empty) and we still managed to snag the closest parking space to the front door. I was pretty happy about that.
being a kitty
showing me how she can snap & tie her gown all by herself
impatiently waiting for the doctor to come in and mad at me for
telling her not to play on the colored squares in front of the door

We had a great visit with her neurologist. I LOVE her!! I think the biggest reason I love her is because where everybody else involved in Raya's care likes to point out all the things that are normal about her that mean she couldn't possibly have CP or anything else wrong with her, her neuro points out all the things that show signs of a brain injury/CP. She is very reassuring that we're not all just making things up and Raya really does have some type of abnormality in her brain that has caused so many of the issues she has, even if the MRI didn't pick it up. To name a few, she has low muscle tone in her trunk, increased tone in her lower extremities, has difficulty doing things that require her to reach across her body, makes fists with the thumbs inside instead of outside (especially on the left, which is her weaker side), and is really clumsy. I also feel like her muscle tone issues affect her digestion & probably contribute to some of her GI problems, and also made it extremely difficult to resolve her congenital torticollis.

We discussed all the things on my list of concerns and I told her about all the things I've taken note of since we saw her in April, including the incident last week with her skin turning funky colors in the bath. (she was in a tub of lukewarm water that would have been too cold in about 5 minutes, and her skin was bright red like if the water was hot but she also had bright white patches on her cheeks and around her mouth & nose) Add in the excessive sweating and seeming lack of awareness of being too hot or too cold, and her neuro is convinced that she has some form of dysautonomia. It is fairly common to use beta blockers to help lessen the symptoms but neither of us feel like she is to a point where she needs that, so we'll continue to monitor her. If at any point she shows signs of cardiovascular involvement (like fainting or dizziness when going from laying/sitting to standing, etc.), then we'll talk about beta blockers. Again though, it's just nice to have a doctor validate what we believe is going on.

Another thing we went over is just how much of a difference the clonidine is making for her. I always hesitate to talk about it on the blog because a lot of people have very strong feelings about using medications to help kids go to sleep and using medications to help improve attention/focus and behavior. If you are one of those people, you are welcome to skip this part or else read it with a very open mind. I cannot say enough about the difference clonidine has made for her in both of those areas.

Before we started clonidine, she was not sleeping nearly enough for a child her age. She was having serious anxiety that was making it extremely difficult for her to be still long enough to fall asleep. She was still tired enough during the day that she genuinely needed to be taking a nap during the day, but even when she WANTED to, she couldn't go to sleep. At night, she would lay in her bed for hours without being able to fall asleep. She was catching virus after virus and taking longer than she should have to get over them because her body wasn't getting enough rest. I can't even describe what it felt like the very first time we gave it to her and watched her peacefully drift off to sleep. I was torn between being giddy that she was actually asleep before midnight and being relieved and happy for her that she was finally getting the rest that I knew she so badly needed. At times, comments have been made that implied that we were taking the easy way out by giving her a sleep aid or that we were doing her harm by not using a more natural sleep aid like melatonin (which did not work for her and doesn't do what most people believe it does but that's another topic for another day). I have bitten my tongue but honestly, I have no regrets and no guilt about using medication to help her go to sleep. We tried melatonin and it did nothing for her, and she was to the point where the lack of sleep was affecting her health and her ability to function during the day so it was and is absolutely the right thing for her.

We have also realized recently that clonidine has a very positive effect on her demeanor and ability to focus during the daytime. This was discovered kind of by mistake. On occasion, we've missed a dose because we've been out of the house late into the evening and we've noticed that she's kind of wild & crazy the next day but we always assumed it was because she stayed up too late. This past week it was time for a refill. I called with the same amount of advance notice that I always give since it has to be compounded, and they told me it would be ready in 1-2 weeks instead of 1-2 days because they had changed computer systems a month ago and hadn't moved it to the new system because I hadn't ordered it since they made the switch. They apparently couldn't bother to tell me in advance that it was going to take 2 weeks. Anyway, we ended up filling it at their other location that's 15 miles away but in the mean time, we had started rationing what we had left so we wouldn't run out. We cut her dose to 2/3 of what it normally is. It still made her go to sleep, but she was not the same during the day. She was all over the place and had a hard time staying focused on anything. Her demeanor was not the same, and that wasn't a good thing. After seeing that, we are again convinced that clonidine is benefiting her ability to stay focused on things longer and is likely helping her in school as well. I don't like the word "easier" but I think it makes her daily tasks less difficult for her. I don't know how long we will keep her on it but for the time being, it is serving her well and we know it's what she needs.

Moving on... Last but not least, we discussed the dosage of her gabapentin, which is for visceral hyperalgesia, aka hypersensitivity of the nerves in her digestive tract that causes pain. She has been on the same dose for longer than I can remember. I need to look it up and see how long it's actually been since we changed her dosage, but my guess is around a year. As it turns out, this med has a short half-life and is better given 3 times a day than 2, so we're going to bump her up to 3 times a day with a slightly higher dose and see how she does with that. They tell me this med can make kids sleepy but that has never been the case with her, so we shall see. :) An afternoon nap with her afternoon dose wouldn't be a horrible thing, especially on school days.

When we were all done talking about everything, the doctor said, "I'm so glad that her bigger problems are GI and not neuro." I told her I agreed. As difficult as Raya's GI stuff has been at times, I look at what some of our friends with serious neurological issues go through and count my blessings that Raya's problems are what they are because it could be so much worse. After we had our updated prescriptions in hand, we said goodbye to neuro for 6 months and headed out to wait until it was time for GI.

To be continued...


  1. Hi, I have dysautonomia and I just wanted to let you know beta blockers aren't the only treatment. Increased fluid and salt intake, as well as a med called fludrocortisone, is usually the starting treatment. I was on fludro for 3 years before I was able to dial it back. It really helped with my symptoms. Also, have you considered that her motility issues could be caused by dysautonomia? Gastropareesis is something a lot of people with dysautonomia have. I would suggest getting her in with a doctor that specializes in it.


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …