Addison Update (March)

Addison has seen all of her specialists over the past few weeks; it has been a little busy on the appointment front. The good news is, we don’t have to see any of them again for 3 months, so hopefully it will be relatively calm until June. Here are the most recent developments:

  1. Gastroenterologist: The GI doctor and nutritionist were pleased with Addison’s growth and weight gain. We ran out of her reflux medication a couple of days before the GI appointment, so we decided to just discontinue it. Addison has not thrown up a single time since she started her seizure medications, so we don’t feel that reflux is a major problem for her anymore. She has had no problems with reflux since stopping the medication. I am all for having one less medication to give and refill. Plus, it was not covered by our insurance, so it was pretty pricey every month. They decided to increase how much formula and water Addison got each day, so we had to adjust to a new feeding schedule. She now gets 3 bolus feedings during the day. Her feeding still runs over night, it just runs a little bit faster since it’s a larger volume. My main question was whether or not we could try bottle feeding again. It has been so long since she took anything by mouth; I was concerned about her forgetting how to eat orally. The GI doctor said it was ok to try bottles and see how she does. She didn’t feel that a repeat swallow evaluation was necessary because Addison is developmentally much the same as when the first one was completed. Let’s just say, she did not get any better at eating out of a bottle!
  2. Physiatrist: My list of concerns to address with the physiatrist boiled down to a few main things this time: 1) Addison’s hamstrings have been especially tight, which we have noticed in PT a lot, 2) along with that, she has a lot of spasms in her legs, and 3) attempting to feed her out of a bottle was not going well. He decided to increase her baclofen (muscle relaxer) just a little bit. His concern was that the baclofen can make her more likely to have seizures. We knew that she could tolerate 5 mg three times a day very well, but you never know how it will go when the dose is increased. He considered starting her on a different medication (like valium) in addition to the baclofen, but we decided that the best course of action would be to see how she did with the increased dose first. If she doesn’t tolerate it, then we will have to lower the dose back down and add an additional medication. So far, she has done ok. He gave us a referral to see speech therapy again; hopefully they can help us figure out how to help her drink from a bottle this time. He also felt that she needed a splint that helped hold her fingers out straight. She currently has hand splints that just hold her thumb out, but they just aren’t quite enough. Our OT measured her for the new splints last week, so hopefully these ones won’t take two months to get here like the last ones. He also ordered her AFO’s to hold her ankle and foot in a neutral position, which should help the spasms in her legs. They came and did casts of her legs in PT this week, so those braces are in the wir
  3. Surgery: Addison had her 6 week post-op follow up at the G-tube clinic. They measured her to make sure her tube was still the correct size for her, and then we changed it for the first time. She had no problems and they said her site looked great.
  4. Neurology: Addison had another EEG and appointment with her neurologist. The EEG techs say she spoils them because she’s so good about getting all the electrodes put on. Her neurologist said her EEG was stable, no major changes from last time. He feels that her seizures are controlled (and I agree). He did not change any of her medications, and when we see him in 3 months, we do not have to get an EEG!
  5. Eye Doctor: Since Addison is on Sabril for her infantile spasms, we have to follow with an eye doctor every 3 months (because a side effect of Sabril is vision loss). She has been looking around a lot more, making more eye contact, and tracking things a little bit better. Her eye doctor agreed, so we do not have to do any further testing, unless we notice any changes. So far, she has improved with her vision and development since her seizures are controlled.

It is kind of nice to get all the specialist appointments out of the way within a two week time frame. We did not find any major issues or concerns; it is awesome when we just get to keep doing what we are doing. It is nice to feel like Addi is making some progress for a change!


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Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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