Update: November 9th-December 8th

I don’t know about you, but it has been a crazy month for us! Mostly little Miss Addison keeping us hopping as usual. We saw her physiatrist on the 4th. We had been questioning whether or not she was having seizures for a few weeks at that point. After explaining what she was doing and showing him a video we had recorded, the physiatrist felt that there was a strong possibility that she was having seizures so he ordered an EEG. (Of course, her neurologist had been out of the country, and they had to reschedule our December appointment for January. I figured that they physiatrist was as good a place to start as any). Addison also had a GI appointment on the 11th. She is gaining both weight and height. She had still been throwing up almost every morning though. We decided that a g-tube with a nissen surgery to stop her vomiting would probably be the best option for her right now. The GI doctor said that even though she’s growing, we don’t want her throwing up so frequently due to the risk of aspiration. We just needed to see the surgeon to see if he agreed with a g-tube/nissen and to get everything scheduled. I was super excited because we were able to schedule an appointment with her surgeon for the following Monday (the 16th). Mommy is definitely sick of this NG tube! Addison had her EEG on Thursday the 12th. She did really well with getting all the electrodes put on. I was hoping we would get the results quickly, but we got them much faster than I bargained for. I got a phone call from her neurologist at 9:30 Friday morning, telling me that her EEG was abnormal and we needed to bring her to the hospital to be admitted. (It is never good when the doctor is the one who calls you)!

 

I feel like there was a ton of information thrown at us while we were in the hospital. It basically boils down to this: Addison was having a particular kind of seizure called infantile spasms. From what I understand, this is a relatively rare diagnosis. Infantile spasms do not respond to typical seizure medications; they are treated with steroid injections or an oral medication call Sabril. Of course, the steroids have all kinds of nasty side effects, on top of requiring injections. The Sabril is a fairly new medication and its main concerning side effect is loss of peripheral vision/tunnel vision. The doctors thought Sabril would be the best starting point for Addison. There was a lot of paperwork we had to sign due to the risk for vision loss. At first, it was terrifying to think about giving our child a medication that could affect her vision, but after doing a lot (and I mean a lot) of research the day she was admitted, we felt much better about it. The chance of losing some peripheral vision is an acceptable tradeoff for protecting her brain function so that she can learn and develop. The Sabril has the potential side effect of drowsiness as well, so they increase the dose slowly and they wanted her hospitalized through the first dosage increase so they could monitor her response. She had a couple of days where she was high as a kite and would just lie in her crib and smile at everything and nothing. That passed, and she has responded very well to the medication. It does not make her drowsy and her seizure activity has lessened a lot. She is also far less irritable and much more content. She has to have regular eye exams while on the Sabril. I think she will be on it for about 6 months. Since she will also be at high risk of difficult to control seizures after we treat the infantile spasms, she was also started on keppra while we were in the hospital.

 

We, of course, will be following closely with her neurologist. Today was her first follow-up EEG and neurology appointment. Her EEG was still abnormal. I don’t think it was quite as bad as the first one, but the doctor said that she had abnormal brain activity while she was sleeping, and none while she was awake. Her seizures have decreased a lot, but she does still have them occasionally. He increased the dosage on her keppra in the hopes that it would help a little. He said if necessary, we can increase the dose of the Sabril. She will have another EEG and doctor’s appointment in January.

 

We had to cancel the appointment with her surgeon because she was in the hospital. I am sure that we won’t get a g-tube until the New Year now. We did check with the neurologist today, and he said neurologically there were no contraindications for surgery. The good news is that Addison has only thrown up once since we have been home from her hospital stay. These seizures were affecting her in so many ways. Hopefully, now we will be able to just get a g-tube and there will be no need for the nissen surgery. Did I mention that I am so done with the NG tubes?!?

 

Violet and Oriana are still cruising right along. They are getting very close to walking. We see the pediatrician next week and should be taking them off formula this month. I am planning on doing a little individual post on both Violet and Oriana, so more to come soon.

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cmathes10

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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