This morning we all got up early and headed to the hospital for Ethan's second EEG and appointments with the Neurologist and the GI.
Ethan did not do as well getting ready and during the EEG. The preparation process, which includes attaching over 20 electrodes to his head was extremely traumatizing to our little boy today. He was so upset and there was nothing we could do to help him. After the prep work was done he needed to go to sleep for the test. Thankfully Jeff was able to lay down next to Ethan on the bed to try to soothe him and get him to sleep. Ethan probably cried for 20 minutes. He was so upset. It broke my heart. He finally fell asleep but stirred several times during the 30 minute "sleeping" portion of the test before waking up for good. He woke up crying and continued to do so through the 10 minutes of the awake test which has him looking at very bright flashing lights. I'm not sure Ethan even opened his eyes for this part because he was so upset. After it was over and the tech came back into the room I asked about that because I was concerned they wouldn't get results, but she said the lights are bright enough that it still works. Ethan was still very upset and she got off the electrodes as quickly as possibly so that we could try to comfort him. Thankfully once he was unattached to everything and in Jeff's arms Ethan was able to calm down. Then we used a really neat waterless shampoo to get most of the goo out of his hair.
Following the EEG we had a bit of time to waste until our Neurology appointment. We left the hospital and got Jimmy Johns for Jeff & I and then drove to the nearby park to have lunch. Although we stayed in the car we enjoyed the fresh air, beautiful weather and a little break from the hospital. We ate, I fed Ethan, and then it was time to head back.
I really like the Neurologist. Our "regular" neurologist is currently on a leave of absence so when we were hospitalized we met this one for the first time. Dr. N. is young and did her training in NYC and when we met her she shared that she has seen kids with PBD-ZSD before which isn't true of most doctors, since PBD-ZSD is so rare. She said she worked at a clinic that saw kids with all kinds of rare disorders who had seizures. We had hoped she would have good news for us today. Unfortunately she didn't. Ethan's EEG was still very abnormal. She did not feel like there had been any "improvement." So we will be increasing the seizure medicine in hope that this will make a difference. In a couple of weeks we will do a blood draw to test Ethan's liver function. If everything is okay we will increase the meds again however if this medicine is negatively impacting his liver we will have to switch to a different medicine. Dr. N. has also suggested that we should get a soft padded helmet for Ethan to protect his head. Our PT actually discussed this with me yesterday. Jeff and I agreed that although we don't look forward to our little guy in a helmet once again, that we must try to do everything we can to protect his head because he is still falling over a lot. His poor little head is covered in bruises. Dr. N. has written a prescription for the helmet and we will be going to see Mr. Andy at Prosthetic Orthotic Specialists who did his helmet when he was little and also does his AFOs next week to get the process of getting Ethan a helmet. We also discussed Ethan's current dose of steroids and she said she would touch base with Ethan's endocrinologist to see if it might be time to increase his dose. So we are going to increase his anti-seizure meds, do a blood draw in a couple of weeks, and unless anything changes we will see her again in 2 months when we repeat the EEG.
After we finished we headed back to the waiting room so Ethan could crawl around before the GI appointment. Ethan did okay for a while but then got fussy and there was still a while to wait so Jeff took off with Ethan in the stroller. Of course he was still gone when we got called back -- thankfully the GI was ready for us early. However, I couldn't find my Marshall Men so now the receptionists and I were all laughing about them leaving me. Thankfully after a few minutes I saw the boys coming down the hall and was able to tell them they needed to hustle because Dr. W. was ready for us.
Ethan really seems to like Dr. W. and Dr. W. seems to be pretty taken by our little guy to. Ethan reached out to him, stroked his face, and even "hugged" him! Dr. W. and his nurse replaced Ethan's button. The one that was in had developed a leak/hole in the balloon so it needed to be replaced. After that we discussed Ethan's growth, toleration of his formula, etc. Dr. W. is very happy with Ethan's growth. Ethan has gained over 3lbs. since the g-tube was placed in March and has grown more than inch taller. He is now back on the growth charts! He is 36 and 1/2 inches tall and weighs around 29 lbs! This puts him in the 10th percentile for height/weight. Dr. W. says that as long as we can keep Ethan anywhere from the 10th to 25th percentile he will be really happy. Ethan is still "catching" up but it is important that he doesn't gain to much too quickly and in reality he needs to stay relatively small because if he gets too heavy it will begin to interfere and possibly hinder his gross motor development. So at this time we won't be making any changes to his formula. We will followup with Dr. W. in a couple of months, hopefully on the same day we do the EEG and see Dr. N.
Once we were done with all of the appointments we left and made a stop at Babies R Us. Yesterday when I was talking with Ethan's PT about his falling and head dropping I shared with her that Ethan has been hurting himself in his crib -- he stands up in his crib and when he looses control of his head he hits it on the railing, she shared that she had to get a cover/pad for one of her kids because they would chew/bite the railing. She mentioned that Babies R Us had them. So, we stopped to find one. We also found a guard for our TV. Ethan has been changing the channels, volume and settings on the TV by hitting the touch panel on the bottom of the TV. I didn't even know they existed. Very excited! When we got home I put on the crib railing pad and gave it some extra padding by putting some baby blankets underneath to make it even softer. Hopefully with this new cushioning he won't hurt himself as much on the railing. At some point we will need to find a way to transition him out of his crib, most likely to a mattress inside of a tent -- for his safety, but we are hoping to hold off as long as possible.
Around 6:30 this evening I heard back from Ethan's Endocrinologist. After talking with Dr. G. she gave the okay to increase Ethan's daily dose of steroids a bit. We have an appointment with her in early August so she said she would reevaluate his dose them. So, tomorrow we will be increasing his morning dose of steroids from 2.5mg to 3.75mg. the evening dose will stay the same. We are praying that the increased dose of seizure medication in addition to the increased steroids will make a difference and that we will begin to see a decrease in the seizures.
Ethan went down easily this evening. Hopefully he will get a great nights sleep. Being at the hospital for most of the day is rough on all of us.
Prayer Requests
Ethan did not do as well getting ready and during the EEG. The preparation process, which includes attaching over 20 electrodes to his head was extremely traumatizing to our little boy today. He was so upset and there was nothing we could do to help him. After the prep work was done he needed to go to sleep for the test. Thankfully Jeff was able to lay down next to Ethan on the bed to try to soothe him and get him to sleep. Ethan probably cried for 20 minutes. He was so upset. It broke my heart. He finally fell asleep but stirred several times during the 30 minute "sleeping" portion of the test before waking up for good. He woke up crying and continued to do so through the 10 minutes of the awake test which has him looking at very bright flashing lights. I'm not sure Ethan even opened his eyes for this part because he was so upset. After it was over and the tech came back into the room I asked about that because I was concerned they wouldn't get results, but she said the lights are bright enough that it still works. Ethan was still very upset and she got off the electrodes as quickly as possibly so that we could try to comfort him. Thankfully once he was unattached to everything and in Jeff's arms Ethan was able to calm down. Then we used a really neat waterless shampoo to get most of the goo out of his hair.
Following the EEG we had a bit of time to waste until our Neurology appointment. We left the hospital and got Jimmy Johns for Jeff & I and then drove to the nearby park to have lunch. Although we stayed in the car we enjoyed the fresh air, beautiful weather and a little break from the hospital. We ate, I fed Ethan, and then it was time to head back.
I really like the Neurologist. Our "regular" neurologist is currently on a leave of absence so when we were hospitalized we met this one for the first time. Dr. N. is young and did her training in NYC and when we met her she shared that she has seen kids with PBD-ZSD before which isn't true of most doctors, since PBD-ZSD is so rare. She said she worked at a clinic that saw kids with all kinds of rare disorders who had seizures. We had hoped she would have good news for us today. Unfortunately she didn't. Ethan's EEG was still very abnormal. She did not feel like there had been any "improvement." So we will be increasing the seizure medicine in hope that this will make a difference. In a couple of weeks we will do a blood draw to test Ethan's liver function. If everything is okay we will increase the meds again however if this medicine is negatively impacting his liver we will have to switch to a different medicine. Dr. N. has also suggested that we should get a soft padded helmet for Ethan to protect his head. Our PT actually discussed this with me yesterday. Jeff and I agreed that although we don't look forward to our little guy in a helmet once again, that we must try to do everything we can to protect his head because he is still falling over a lot. His poor little head is covered in bruises. Dr. N. has written a prescription for the helmet and we will be going to see Mr. Andy at Prosthetic Orthotic Specialists who did his helmet when he was little and also does his AFOs next week to get the process of getting Ethan a helmet. We also discussed Ethan's current dose of steroids and she said she would touch base with Ethan's endocrinologist to see if it might be time to increase his dose. So we are going to increase his anti-seizure meds, do a blood draw in a couple of weeks, and unless anything changes we will see her again in 2 months when we repeat the EEG.
After we finished we headed back to the waiting room so Ethan could crawl around before the GI appointment. Ethan did okay for a while but then got fussy and there was still a while to wait so Jeff took off with Ethan in the stroller. Of course he was still gone when we got called back -- thankfully the GI was ready for us early. However, I couldn't find my Marshall Men so now the receptionists and I were all laughing about them leaving me. Thankfully after a few minutes I saw the boys coming down the hall and was able to tell them they needed to hustle because Dr. W. was ready for us.
Ethan really seems to like Dr. W. and Dr. W. seems to be pretty taken by our little guy to. Ethan reached out to him, stroked his face, and even "hugged" him! Dr. W. and his nurse replaced Ethan's button. The one that was in had developed a leak/hole in the balloon so it needed to be replaced. After that we discussed Ethan's growth, toleration of his formula, etc. Dr. W. is very happy with Ethan's growth. Ethan has gained over 3lbs. since the g-tube was placed in March and has grown more than inch taller. He is now back on the growth charts! He is 36 and 1/2 inches tall and weighs around 29 lbs! This puts him in the 10th percentile for height/weight. Dr. W. says that as long as we can keep Ethan anywhere from the 10th to 25th percentile he will be really happy. Ethan is still "catching" up but it is important that he doesn't gain to much too quickly and in reality he needs to stay relatively small because if he gets too heavy it will begin to interfere and possibly hinder his gross motor development. So at this time we won't be making any changes to his formula. We will followup with Dr. W. in a couple of months, hopefully on the same day we do the EEG and see Dr. N.
Once we were done with all of the appointments we left and made a stop at Babies R Us. Yesterday when I was talking with Ethan's PT about his falling and head dropping I shared with her that Ethan has been hurting himself in his crib -- he stands up in his crib and when he looses control of his head he hits it on the railing, she shared that she had to get a cover/pad for one of her kids because they would chew/bite the railing. She mentioned that Babies R Us had them. So, we stopped to find one. We also found a guard for our TV. Ethan has been changing the channels, volume and settings on the TV by hitting the touch panel on the bottom of the TV. I didn't even know they existed. Very excited! When we got home I put on the crib railing pad and gave it some extra padding by putting some baby blankets underneath to make it even softer. Hopefully with this new cushioning he won't hurt himself as much on the railing. At some point we will need to find a way to transition him out of his crib, most likely to a mattress inside of a tent -- for his safety, but we are hoping to hold off as long as possible.
Around 6:30 this evening I heard back from Ethan's Endocrinologist. After talking with Dr. G. she gave the okay to increase Ethan's daily dose of steroids a bit. We have an appointment with her in early August so she said she would reevaluate his dose them. So, tomorrow we will be increasing his morning dose of steroids from 2.5mg to 3.75mg. the evening dose will stay the same. We are praying that the increased dose of seizure medication in addition to the increased steroids will make a difference and that we will begin to see a decrease in the seizures.
Ethan went down easily this evening. Hopefully he will get a great nights sleep. Being at the hospital for most of the day is rough on all of us.
Prayer Requests
- Pray that the increase in the anti-seizure medication and steroids will make a difference and that we will see a decrease in Ethan's seizures very very soon.
- Pray that we won't have a problem with our insurance covering the new safety helmet and that Ethan will tolerate wearing it when we get it.
- Pray for all families impacted by PBD-ZSD, the doctors, therapists, teachers, and caregivers who are part of the kids "team" and all of the researchers and specialists who have dedicated themselves to helping us help our children.
- Pray for a CURE!
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