Dear Son Medical Update~Back Home

It's been a long week. Dear Son was released from the hospital last night.

We went into Big Academic Medical Center on Tuesday for extended EEG testing to see if seizures might be the source of his crying/pain. When we arrived, they were quite surprised at the extent of swelling of his left calf, ankle and foot. The Attending Neuro had concerns that the swelling might be related to his heart so he ordered several tests below along with a chest x-ray.


Our Ped Neuro Doc came by later in the day and found the swelling to be quite impressive and wanted to make sure it wasn't deep vein thrombosis. He also had concerns as to whether or not the yelling/crying Dear Son was doing was really pain per se and thought the EEG looked pretty good at that time (he had been hooked up for around 2-3 hours at that point.)


Over the next day or so, they did an Echo Thoracic exam, a Venus Doppler, an Arterial Doppler along with an EKG. He was also examined by a pediatric cardiologist. All of the tests came back negative. The cardiologist determined that the blood was pooling in his foot/leg due to the lack of muscle tone and movement of his left leg. He recommended elastic bandanges and massage along with leg boots to help get the blood flow back to his heart. Dear Son had been examined by Ped Ortho Doc early Tuesday morning and had determined that there wasn't any sprained ankle or broken bones, etc. He felt the leg swelling was positional. I was concerned that perhaps Dear Son had twisted his ankle when Dad lifts him into the SUV since Dear Son can't weight bear or move his legs/feet. As a result, when he turns him to get him into the vehicle, Dear Son's feet remain planted in the same position and don't turn when he lifts him. I was less concerned about any broken bones however the information was good to have.


On Wednesday, I made certain to press the EEG monitoring button every time Dear Son cried/yelled out with the exception of the time we went for tests or the time they were changing the IV, etc. He had cried out over 55 times that day and it was exhausting both for him and for me. At home, he had been crying out a lot more than that so I was curious to see if these were correlated in any way to seizure activity, and they were as well.


The Attending Neuro Doc, who reads all of the inpatient EEGs, determined that 75-80% of the time, Dear Son's cries occurred after an electrical discharge or burst of electrical activity. While these "bursts" aren't seizures per se, they were all coming from the exact same part of the brain, the left temporal lobe of the brain. (I should also mention that Dear Son's EEGs are all abnormal and have been for many years so these electrical discharges are in addition to his regular electrical activity.) He recommend an MRI to determine if there was a lesion in that area and then if so, brain surgery to remove it. He stated that he prefers to treat things rather aggressively and that since the crying was so hard to deal with due to the frequency of the crying that this would be an option.


I have been going to Big Academic Medical Center for eighteen years so I actually know this particular doctor fairly well and he's treated Dear Son on many occasions. He is extremely bright and is usually right on the money in terms of diagnosis. At this time, he also recommended pulling back slightly on two of Dear Son meds and increasing one of the nighttime meds to help Dear Son get through the night.


Our Ped Neuro Doc is more conservative however and did not agree with the treatment plan. He didn't feel the crying/pain was related and preferred to see if the medicine changes would have an effect first and then if needed, we could do an MRI as an outpatient. I had hoped we could get the MRI while we were there, since it is so difficult to get Dear Son to an appointment but also because he was more stable and that would have been pretty close to the best scenario in terms of having him prepared for the test since he was out of it and no sedation would be needed and also because we could stop his food and have less risk of aspiration for the actual test. Dear Son can't lie on his back since he can't breathe very well and due to aspiration and he would have been about as stable as we could get for this exam. I did express my preference for having it done now however he felt that we could do it later if needed.


I also wanted to get the MRI out of the way. Whether or not we would do a surgery for Dear Son would require a lot more thought and discussion but at least I wanted the information since it would help relieve some of the worry that something more was going on. There would also be more discussion whether you perform brain surgery on a child with a progressive disease and more discussion as to the surgery risks for him and whether or not he'd survive another surgery of any kind. A lot to think about for sure. In addition, it will be interesting to see if anything else changes once he has completed the methadone weaning. We just completed week 1 of a three week weaning. They do not think the methadone weaning is related in any way to this nor do they think his extensive perspiration is a result of the weaing however it is quite unusual that Dear Son is sweating so much considering he has the Scopolamine patch. In the summer, he never sweats, he overheats and cries out in pain instead.


In the end, we'll follow our Ped Neuro Doc's recommendation. He's the man who has taken great care of Dear Son for almost twenty years. He's also very bright. I have great respect for him and he knows Dear Son the best. He's the one I call every time Dear Son is in trouble and he's the one who manages everything for Dear Son. He makes the time to see us every time we are in the hospital, regardless of whether or not, he is the attending doc. I couldn't ask for anything more. I am fortunate to have such good physicians looking after Dear Son.

As for Dear Son, the medicine changes that were made on Wednesday evening initially resulted in more crying episodes however he did seem to be more alert although was still not himself by any stretch of the imagination. On Friday morning however, he was definitely more alert. He looked great-his skin looked great, his eyes were open in the morning and overall I don't think he physically could have looked better. When I talked to him, he actually smiled and when I asked him for a kiss, he gave me a kiss. He had not done that in over seven weeks. So that was better. Later in the day, he seemed to be coming around a bit. When one of the younger housekeepers came in to say hello, he practically strained his neck trying to check her out so I asked her to come over to the other side of the bed so he could see her. She did. Then later in the day, when another worker came by, he heard us talking and started saying "hi" to her. He said "hi" seven times to her. So that was definitely better and more like the old Dear Son. I was so happy the entire day that I could not stop hugging and kissing him the whole day. I was worried as to whether or not I would ever see the old Dear Son.


Dear Son contined to having crying spells on Friday and had some 17 episodes between 9-10 a.m. I didn't track the ones from 6-9 a.m. He had fewer in the afternoon and then more when he got home some during the night as well as this morning. I can't say that they are decreasing per se but they tend to come in droves and then stop for a while.


They expect it will take two weeks or so for the medicine changes to take full effect. We'll get labs then and take it from there. Overall, I think it was a good hospitalization in many ways. I got definitive answers on his left leg and we have more information with regards to the crying episodes.


Dear Son also had a very special visitor when we were there. He brought his whole entourage with him along with some gifts. I'll tell you more about our "secret" visitor once I download the picture.