More to come later about this amazing vacation!
Sailing Vacation Pictures
November 30, 2011
What we have been doing lately and updates on Austin
So what has been going on with us? Well it has been 3 years since my last blog post! But I promise to be a better blogger! Since it has been so long I have remodeled the place with a new design and some new pages. Go check out the older posts of Noah, how cute is he!!
I first started this blog as a new parent, so excited about the joys of parenthood. It was easy to update with only one newborn, then Noah became a toddler, we had another baby and I lost the free time I once had to blog. With new adventures ahead, I hope to now use this blog to keep our friends and family up to date on what is going on in our life. I also hope to reach any parents that are suffering from Breath Holding Spells or Relex Anoxic Seizures because there is not a lot of information out there. If you want to know what has been going on in the last few years, see the About Us tab. To get an overview of the last few years with Austin, see the Living with BHS & RAS tab. Below was our last few weeks, we were busy!
November 10th-19th, 2011- We were on our amazing sailing vacation. The grandmas were watching the boys for us. Thank you Grandma and Nanny! There will be a seperate post about our vacation, because it deserves it. While we were gone Austin had a few breath holding spells that seemed to be getting progressively worse than the one before. The boys both did very well with Grandma and Nanny, although I think Grandma and Nanny were tired! :)
November 19th-22st, 2011 - We were trying to get life back to normal after our vacation, but so glad to be home. I really really missed my babies. Noah and Austin were suffering from mild seperation anxiety, which I was okay with, a few extra snuggles wasn't so bad. Howerver, this is when I started to video diary Austin's episodes. They seemed to be getting worse. Each episode seemed to be set off by some sort of anger or small injury. He will breath out, and never breath back in. He will lay on his side with his back arched, legs kicking, and hands turned inwards. His lips and fingers would turn very blue. This would last for 30 or so seconds. He would then pass out completely, almost snoring for another minute or so. Some episodes were worse than others, but they were more frequent.
November 23rd, 2011 7:04am - 2nd Reflex Anoxic Seizure. Adam was upstairs with Austin in Noah's room. I was down stairs trying to brine the turkey for Thanksgiving. Adam started yelling down to me to come immediately. Austin was trying to get on Noah's bed. Adam stopped him to fix his jammies, and he went into a BHS. Adam laid him on Noah's bed on his side to get through the spell. He had a typical BHS, but then started to seize. This is when Adam started to call for me. As I entered, he was on his side, very pale, and seizing. I called 911, then my mom. My mom beat the ambulance here, Noah and I went outside to see the ambulance arrive and to get him out of the room. Austin's seizure was 2 minutes long and was over by the time the ambulance arrived. They checked his vitals and they all seemed normal. We decided to not take him by ambulance to the ER, instead that we would take him over to the Children's Hospital Urgent Care, just a mile away. They were able to see us immediately. At triage, they checked his stats again, and all were normal. We told the doctor about the episode, she examined him and found an ear infection. Again something else viral that could have helped trigger the seizure. She then called Neurology to see if there was anything else that she needed to do. They released us, only to tell us again that this is NORMAL and that he will grow out of it. I was shaken and furious. We received a prescription for Diastat and Amoxicilion for the ear infection. I spent the rest of the day trying to locate some Diastat, an emergency medicine needed to stop a seizure over 3-5 minutes, because now we need to have it at home. With no luck, we had to order it for Friday after Thanksgiving. The day before a holiday is not a good day to go to a pharmacy.
I called his predication after we get home, she of course was out of town. Great timing, the attending physician recommended that I wait until the next week, that the matter didn't seem urgent enough to make a any decisions that day (and I am sure he had a big Thanksgiving planned, I would have hated to ruin that ;))So I decided to call Neurology at Children's Hospital without a referral. I explained my story and they were able to get me in on the following Monday.
November 28th, 2011- Neurology appointment at Children's Hospital. They take his weight and blood pressure. He was 17lbs 13 oz.. up almost 6 ounces from the Wednesday before! His blood pressure was a little high, so we will need to follow-up with Cardiology again. She undresses him down to a diaper, and watches him play. She interacts with him, while taking notes. She watches my videos of his episodes and reads my notes. Diagnosis- He is mentally normal and seems to be progressing very well in every area except for growth and walking. She isn't too worried about his lack of walking yet but we will need to re-evaluate that in 3 months. She doesn't know exactly what is growing on with him, but she does now that the severity of his spells and seizures is NOT NORMAL! Finally, what I needed to hear. She doesn't want to jump directly into drug therapy, and neither do we. We are starting off with Iron supplementation therapy. This has been documented to help reduce the severity and frequency of breath holding spells. Since he has Reflex Anoxic Seizures, which are triggered by a reflex and definitely more probable with a virus, if we remove the reflex (which for him is BHS) we should see a decrease in the seizures. The next step is to have an Echo Cardiogram performed. She wants to double check and make sure his heart is 100% functional, given his growth issues. Then in 3 months we will do a full brain MRI to check the brain stem for any defects. We will also follow up with Neurology in 3 months with our progress. I was pleased that we were able to see a Doctor that knows what the hell is going on, and is making a plan. My type A personality needed this!
November 29th, 2011 - Appointment with his pediatrician. On the morning of his pediatrician appointment, he is a normal happy baby and a hungry one! I couldn't give him enough food. On top of his good mood, he also did not have one breath holding spell! NOT ONE! He was even clocked in the head with a ball from his brother and recovered like a normal crying baby! This got me thinking, is the ear infection finally clearing up? All this time, has he been suffering from chronic fluid of the ears? Is this why he doesn't want to eat, pockets food, and might explain his not walking? This triggered a conversation with his doctor. She agrees with my assumptions, so we might as well see Ear Nose and Throat for possible tubes. Yes it is a procedure, but at least it is not drugs, and he might be happier.
FINALLY in the last few days I have my happy and somewhat healthy baby boy back. I hope we get to see him a lot more soon. We have had ZERO breath holding spells today, which for me is a big big celebration!
So our next steps are an appointment with ENT on December 15h. Continue the Iron therapy and schedule an Echo Cardiogram in the near future. Stay tuned for more!
I first started this blog as a new parent, so excited about the joys of parenthood. It was easy to update with only one newborn, then Noah became a toddler, we had another baby and I lost the free time I once had to blog. With new adventures ahead, I hope to now use this blog to keep our friends and family up to date on what is going on in our life. I also hope to reach any parents that are suffering from Breath Holding Spells or Relex Anoxic Seizures because there is not a lot of information out there. If you want to know what has been going on in the last few years, see the About Us tab. To get an overview of the last few years with Austin, see the Living with BHS & RAS tab. Below was our last few weeks, we were busy!
November 10th-19th, 2011- We were on our amazing sailing vacation. The grandmas were watching the boys for us. Thank you Grandma and Nanny! There will be a seperate post about our vacation, because it deserves it. While we were gone Austin had a few breath holding spells that seemed to be getting progressively worse than the one before. The boys both did very well with Grandma and Nanny, although I think Grandma and Nanny were tired! :)
November 19th-22st, 2011 - We were trying to get life back to normal after our vacation, but so glad to be home. I really really missed my babies. Noah and Austin were suffering from mild seperation anxiety, which I was okay with, a few extra snuggles wasn't so bad. Howerver, this is when I started to video diary Austin's episodes. They seemed to be getting worse. Each episode seemed to be set off by some sort of anger or small injury. He will breath out, and never breath back in. He will lay on his side with his back arched, legs kicking, and hands turned inwards. His lips and fingers would turn very blue. This would last for 30 or so seconds. He would then pass out completely, almost snoring for another minute or so. Some episodes were worse than others, but they were more frequent.
November 23rd, 2011 7:04am - 2nd Reflex Anoxic Seizure. Adam was upstairs with Austin in Noah's room. I was down stairs trying to brine the turkey for Thanksgiving. Adam started yelling down to me to come immediately. Austin was trying to get on Noah's bed. Adam stopped him to fix his jammies, and he went into a BHS. Adam laid him on Noah's bed on his side to get through the spell. He had a typical BHS, but then started to seize. This is when Adam started to call for me. As I entered, he was on his side, very pale, and seizing. I called 911, then my mom. My mom beat the ambulance here, Noah and I went outside to see the ambulance arrive and to get him out of the room. Austin's seizure was 2 minutes long and was over by the time the ambulance arrived. They checked his vitals and they all seemed normal. We decided to not take him by ambulance to the ER, instead that we would take him over to the Children's Hospital Urgent Care, just a mile away. They were able to see us immediately. At triage, they checked his stats again, and all were normal. We told the doctor about the episode, she examined him and found an ear infection. Again something else viral that could have helped trigger the seizure. She then called Neurology to see if there was anything else that she needed to do. They released us, only to tell us again that this is NORMAL and that he will grow out of it. I was shaken and furious. We received a prescription for Diastat and Amoxicilion for the ear infection. I spent the rest of the day trying to locate some Diastat, an emergency medicine needed to stop a seizure over 3-5 minutes, because now we need to have it at home. With no luck, we had to order it for Friday after Thanksgiving. The day before a holiday is not a good day to go to a pharmacy.
I called his predication after we get home, she of course was out of town. Great timing, the attending physician recommended that I wait until the next week, that the matter didn't seem urgent enough to make a any decisions that day (and I am sure he had a big Thanksgiving planned, I would have hated to ruin that ;))So I decided to call Neurology at Children's Hospital without a referral. I explained my story and they were able to get me in on the following Monday.
November 28th, 2011- Neurology appointment at Children's Hospital. They take his weight and blood pressure. He was 17lbs 13 oz.. up almost 6 ounces from the Wednesday before! His blood pressure was a little high, so we will need to follow-up with Cardiology again. She undresses him down to a diaper, and watches him play. She interacts with him, while taking notes. She watches my videos of his episodes and reads my notes. Diagnosis- He is mentally normal and seems to be progressing very well in every area except for growth and walking. She isn't too worried about his lack of walking yet but we will need to re-evaluate that in 3 months. She doesn't know exactly what is growing on with him, but she does now that the severity of his spells and seizures is NOT NORMAL! Finally, what I needed to hear. She doesn't want to jump directly into drug therapy, and neither do we. We are starting off with Iron supplementation therapy. This has been documented to help reduce the severity and frequency of breath holding spells. Since he has Reflex Anoxic Seizures, which are triggered by a reflex and definitely more probable with a virus, if we remove the reflex (which for him is BHS) we should see a decrease in the seizures. The next step is to have an Echo Cardiogram performed. She wants to double check and make sure his heart is 100% functional, given his growth issues. Then in 3 months we will do a full brain MRI to check the brain stem for any defects. We will also follow up with Neurology in 3 months with our progress. I was pleased that we were able to see a Doctor that knows what the hell is going on, and is making a plan. My type A personality needed this!
November 29th, 2011 - Appointment with his pediatrician. On the morning of his pediatrician appointment, he is a normal happy baby and a hungry one! I couldn't give him enough food. On top of his good mood, he also did not have one breath holding spell! NOT ONE! He was even clocked in the head with a ball from his brother and recovered like a normal crying baby! This got me thinking, is the ear infection finally clearing up? All this time, has he been suffering from chronic fluid of the ears? Is this why he doesn't want to eat, pockets food, and might explain his not walking? This triggered a conversation with his doctor. She agrees with my assumptions, so we might as well see Ear Nose and Throat for possible tubes. Yes it is a procedure, but at least it is not drugs, and he might be happier.
FINALLY in the last few days I have my happy and somewhat healthy baby boy back. I hope we get to see him a lot more soon. We have had ZERO breath holding spells today, which for me is a big big celebration!
So our next steps are an appointment with ENT on December 15h. Continue the Iron therapy and schedule an Echo Cardiogram in the near future. Stay tuned for more!
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