This is a detailed diary of events, so we can keep track of what is going on, and communicate updates. I also hope that this will reach another parent experiencing some of the same hurdles. There is not a lot of information on Breath Holding Spells (BHS) and Relex Anoxic Seizures (RAS) out there, which can be very frustrating to a parent desperate to help their child.
*****Warming - some of this information may be disturbing, including the videos. Please be aware that the purpose of this page is to be informational, and I wish to share our whole story/journey with Breath Holding Spells and Reflex Anoxic Seizures.******
Austin was born in July of 2010. We had a very happy and healthy pregnancy. The delivery was all natural, very fast and easy. Austin was born at 6lbs and 13ozs. I was very excited to have a new precious baby and to give Noah a brother, for life! On his first day of life, he was getting his first bath, he was less than thrilled. He held his breath a little and his lips turned a little blue. The nurse was a little concerned so she took a pulse ox on him, which was normal. Little did we know this was a small preview of what was to come.
The first 6 months of Austin's life were typical newborn. No sleep, but he was a very easy and happy baby. Around 4 months his growth started to slow down. We started to be on a monitor to watch his weight. Around this same time I had the Mirena inserted as a form of birth control. Keep this in mind for later. At 6 months, at my sister in laws baby shower, Austin experienced his first real breath holding spell. He was a little overtired for his afternoon nap, and became angry about me not breast feeding him or holding him. He let out an exhale cry and never let it back in. He proceeded to turn blue, then became limp/passed out. This started his breathing again, and he acted like nothing had happened. I breast fed him, and he improved his mood.
For the next few months we were in and out of the pediatrician trying to figure out why he wasn't putting on weight. He was slowing falling further and further off of the percentile charts. At 6 months I decided to have my Mirena removed thinking that this might be affecting the quality of my milk. Considering that I didn't have any issues with breastfeeding Noah, this was the only change. At 8 months he still hadn't improved on his weight, and he still wasn't trying to crawl at all. So we made the very hard decision to be done with breastfeeding, because I was blaming myself for his poor growth. From 6-8 months he was always a lover of food. Not baby food, he wanted our food. Which told us that he was hungry, and I wasn't doing enough with breast milk. So we started formula.
During this time he was experiencing very mild breath holding spells. Sometimes he would only have one per day, and some days he would have 10 per day. It just really depended on his mood. Our pediatrician was not worried, she said that BHS are normal, and most kids will grow out of them. This made for a pretty fussy kid. Some days were better than others, but for the most part he needed to be held.
He had a few ear infections or borderline ear infections before his 1st birthday. These were normally cleared up by antibiotics.
He started to sit up independently around 7 months. So we were hoping he would soon crawl. His birthday came and went without a crawler. However, he was very content watching his brother, playing with toys or being held. At his one year appointment he was still not on the charts for growth. However, he had improved from his previous appointment, and seemed like he was growing slowly. During his one year appointment, she also detected at slight heart murmur. So we were referred to Cardiology for a follow up, because this could explain his failure to thrive.
August 25, 2011- Pulmonary sweat test to check for Cystic Fibrosis. This was pretty uneventful easy test. We had to put probe on his arm to collect sweat. This later came back negative.
August 30, 2011 - We had an appointment with Cardiology to check on his heart murmur. We were first seen by a PA, then by a doctor. They determined that his murmur was completely normal, and was vibratory. This sometimes happens with babies around the first year. So we opted out of the Echo cardiogram.
During his 13th month he started to crawl, now he is always at full speed.
September 9th, 2011 - 1stt Reflex Anoxic Seizure. We were at my sister in laws house. He hadn't had a morning nap because he was in the phase of not always needing it. He was crawling around on her hardwood floors, and was in front of the fridge. Noah had taken a soda can away from him which made him bump his head. This triggered what we thought was a normal breath holding spell. He breathed out, couldn't catch his breath, then started to turn grey, then blue. He became limp as normal but then he started to seize. I laid him on the rug on his side, he was in a full seizure at this point. I was with family so someone called 911. When the paramedics arrived he had been seizing for 6 minutes. They undressed him and administered Diastat. This started to subside the episode, but they think he may have had a small seizure after the Diastat was administered. Then they decided to bus him to the ER. I rode in the back with him, scared out of my mind. I felt like I was in a moving, they were working on his breathing, while almost falling on him every time we turned a corner. We arrived at the ER and he was groggy but feeling better. Adam arrived in his cycling gear, he was on a lunch ride from work, and my mom arrived as well. I was scared, shaking, and completely out of my body. Ironically, Austin had fallen down the stairs only 2 days before, so I was suspecting a brain bleed. They performed a head CT, which came back completely normal. In fact, everything came back completely normal. The ER doctor told us that this is normal, seizures can happen sometimes with breath holding spells and that there was nothing that we could do. He proceeded to tell us that it is NORMAL and he will grow out of it. NORMAL - a word I have grown to hate, there is nothing normal about watching your child suffer from breath holding spells and seizures. A few hours after we returned from the ER, he started to vomit and he did this almost every hour, sometimes every 15 minutes for 24 hours. This was somewhat of a relief because now we thought that the seizure could have been caused from a viral reaction.
We followed up with our Pediatrician, this is where the journey began. She suggested that we get a EKG to rule out Epilepsy.
September 16th, 2011 - EKG was performed. This was a mild form of torture for me and Austin. This is a sleep deprived test, so we had to wake him up early and keep him from napping until 2:30pm. He threw up during the test with all of the probes on his head because he was so upset. Once we got him changed he finally fell asleep. They let him sleep for 15 minutes before waking him up with a strobe light! Honestly it was torture. Somehow, he didn't have an episode during the test, but we were both beat! This test was also normal, so no Epilepsy.
A few months passed with daily breath holding spells but no seizures. I took him in a few times for ear infections, but nothing bad enough for antibiotics.
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 too 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!
December 6, 2011 - Cardiology/Echo Cardiogram
December 9, 2011 - 3rd Seizure - More information
December 15, 2011 - ENT Appointment
December 23, 2011 - Tubes Surgery
December 29, 2011 - Rotavirus/Stomach bug BHSs
