I am typically a nervous wreck for our neurology appointments. I am so worried about Jayson's seizures and abnormal neurological activity, and we never seem to have real answers. However, I found myself so relieved from the previous days' GI appointment that I nearly forgot about today's appointments. Jayson would be having another EEG. I was not expecting any more answers. Yes, he had been having more and more seizure activity all the time, but they never showed on an EEG. Additionally, he NEVER has seizures at 9:30 in the morning when we tend to have his EEG's. We came in for our typical drill. He once again behave well while sensors were glued all over his head. The key these days is to keep Yo Gabba Gabba playing on the ipad. Brobee gets him through all the hard times. I've even got the EEG tech singing "There's a party in my tummy, so yummy, so yummy" whenever we walk through the door.
Jayson slept during the EEG, which is good since a lot of kids tend to have seizures in their sleep. I did not see any signs of seizures and did not expect to hear any real news. We went right into our neurology appointment and met with our great doc. We discussed Jayson's decompression surgery, since a lot had happened since I had seem him last in December. The doctor's face looked shocked as he examined Jayson-- he checked his reflexes, his responses, and he observed his behavior. He was in awe of the progress Jayson had made. He told me he hadn't wanted to scare me before, but Jayson's reflexes were concerning. He had been monitoring him closely. He couldn't believe the different before and after decompression. It felt so good to have good news and reason to celebrate at a doctor's appointment. He ran through the latest MRI scans that lead to finding the Chiari malformation. He said Jayson's brain was looking pretty good. The myelin delay was no longer... his myelin caught up! The olfactory bulbs that were missing before, were there. The concerns we had on the first MRI were little by little disappearing. We just had to watch his Chiari malformation, which had been corrected, and his unstable top vertebrae.
I voiced my concern about the increased seizure-like activity. I showed him 4 different videos of Jayson having episodes. He sighed, paused and said, "We typically do not see this many different types of seizure activity in one child. His seem to be changing a lot, and he seems to be showing different types of seizures." I thought that perhaps he was being skeptical, and that maybe the was thinking they weren't seizures. I hesitantly said, "Well, I have thought it is strange too, that is why I've gotten them on video. Do you think they are muscle spasms, or what could they be? Do you think sometimes he just doesn't pay attention? Do we need to see the neuromuscular doctor, or work on more therapy?" He interrupted me, "No, these are not muscular. Your son has epilepsy, and these videos are evidence of different epileptic seizures. It is just not typical to see so many types. The last set I believe are partial-complex seizures. I think that is the type we most commonly see from him." I was shocked to hear those words come out of his mouth. I have always thought Jayson was having seizures. He was treated with seizure meds. But I never knew if the doctor really thought he was having seizures. I have never stated before that my child has epilepsy. I felt validated, and I felt intimidated by the diagnosis epilepsy. Sigh. A new, official diagnosis.
The neurologist checked for the EEG results but they were not quite in like he had hoped. He didn't expect to see anything on the EEG but said he was going to go talk to the EEG tech to see if he saw something abnormal. When he came back he said that the EEG analysis was not complete, but the tech saw abnormal activity on the EEG. It was official. It was on the EEG. I just had to await the phone call confirming the types of seizures and see if our treatment plan would change.
Our doc looked me in the eye and said what I so desperately wanted to hear from him, "I am concerned about your son. I believe he is seizing, but I can't know why he is having so many different types of seizures. I am making him top priority. Here is my email address. Email me his different videos, and I will send them to other doctors to help me analyze. He is at the top of my radar." I felt so relieved to know he cared. What a day...
March 14, 2013- Pulmonology
I have been excited about today's appointment with our pulmonologist. Jayson has spent the majority of the past few weeks OFF of oxygen. I was interested to see what the pulmonologist had to say about his status and his lungs.
Once again, when the doctor walked in she was in complete awe. She could not believe that this was the same boy she saw back in October. She looked him over from head to toe, and could not stop talking about how good he looked. His lungs sounded better than ever. We made it through a winter without terrible illness or permanent lung damage. It was such a success. She was no recanting his diagnosis of chronic lung disease. It seems that he may not have permanent lung damage after all. Only time would tell.
She did, however, hear some coarseness in his upper right lobe of his lungs which was evident of aspiration. She was not sure if it was residual from previous aspirations, or if it was evidence of current aspiration from the new liquids he was taking in. We decided to thicken his liquids he's drinking to nectar thickness to be safe, and to take another chest xray in about a month. As she read through his latest reports she mentioned something that surprised me... "Jayson's latest EEG registered as normal." I had not yet heard from our neurologist. Great, false alarm. The EEG was normal, again.
Her final words as I walked out of her office brought tears to my eyes.. "Tristin, I see a lot of sick kids. I NEVER see kids make these kind of gains in such a short amount of time. Your knowledge base and assertiveness gave him this chance at life. He is doing this well because of you." She was in tears as well. What a compliment, especially from a doctor I have had conflict with in the past. She has witnessed first hand my assertiveness, and to hear a doctor I've fought with tell me it was my fight that gave him chance at life is priceless. What a wonderful doctor's appointment. I love leaving the doctors in tears after seeing how well my son is doing. We were on a roll, and there were many more doctors to shock and awe over the next couple of weeks.
March 18, 2013- ENT and Special Care
Our ENT appointment was short and sweet. We surprised another doctor and Jayson babbled, rolled around and fought the doctor during his appointment. He seemed so pleasantly surprised by his progress. He believes his laryngomalasia is finally getting better, partly why his oxygen needs are decreasing, but that it is still very clear he has a severe case. We still needed to monitor him closely. The doctor agreed that it would be wise to give Jayson one more set of botox injections into his salivary glands to help with his excess drooling. We would be putting Jayson under anesthesia for the tube change, and our ENT said he would coordinate the injections with our GI doctor.
Our special care pediatrician had just seen Jayson at the end of February, but she could not stop smiling at Jayson. The progress was huge. I showed her how he was sitting up and able to finally weight bear on his legs. He was babbling and ripping the paper. He was being mischievous, just like a toddler should be. We went over all of the doctor's notes for the past month, and so many things were positive. We felt good about the upcoming surgery and the tube change. We felt we were in a pretty good place and had everything handled, except the seizures. A few more had kicked up over the weekend and I felt like I still didn't have answers with yet another normal EEG. I told her that we still didn't know if they were seizures or not, although the videos looked convincing. Dr Murphy pulled up the EEG on the computer and said, "This report says normal, but the EEG doesn't look normal. Your neurologist is in his office just across the hall. Let me go talk to him." After a few minutes she came back. Very bluntly she said, "Your doctor said his EEG was anything but normal. The problem is that it's abnormally abnormal. It is not typical of what we would see with kids with seizures." I asked, "So are they not seizures?" She interrupted as if she knew what I was going to be asking, "He said they are undoubtedly seizures, but he doesn't have all of the answers. He said to tell you that your son is top priority and at the top of his radar." Again I was reassured that doctors cared about Jayson, and I wasn't crazy. I do not know exactly how we are going to help him with seizures at this time, but I had support. The special care doctor said the neurologist recommended a rescue medication for his breathrough seizures. We received a prescription for Klonopin. I knew it would not be long before we would have the opportunity to use it. Jayson's seizures flared up that very day. Unfortunately, to get Klonopin in liquid form took 3 1/2 hours of waiting in the pharmacy waiting room. Jayson and I took a lunch break, but mostly played and sang on the quilt spread out on the pharmacy floor. Finally we got our magic potion and were on our way.
Attack of the Seizures
Jayson had seizures that very night and we tried his new prescription. I could not tell if the seizures were getting worse of if Jayson's anger, aggression, jerks, and cries were a side effect of the medication. It was a long night, and an even longer next day. In case they were terrible seizures, I gave him more of his rescue medication. His episodes escalated and Jayson was not at all himself. He wouldn't respond to anything, he continuously shook his head, took long naps, he was manically crying and then laughing, he made these repetitive snorting noises, his face had crazy spasms with weird faces and big eyes. He aspirated and gagged during feeds and drooled excessively. The drooling and gagging got bad enough I decided to suction him. As any baby, Jayson absolutely hates being suctioned worse than anything in the world. When he laid and stared at a wall and allowed me to suction him without ANY response, I knew there was something terribly wrong.
This persisted for two more days. I had made a couple of calls to neurologists on call at the hospital, and we were borderline on the decision to take him in to be checked. When his episodes persisted for another couple of days and got to the point that my nanny called me and did not feel comfortable taking care of him, I knew things were getting serious. It wasn't just me being a crazy mom. I hadn't had my baby back for nearly a week. I was concerned that he was "in-status" or in constant seizure mode. I packed Jayse up and headed to Primary's.
I quickly learned that taking Jayson to the hospital for seizures was a mistake. Everyone had already looked at his charts to see "normal" EEG's, and I was officially that crazy mom who believed her child had seizures. Of course by the time we got to the hospital Jayson had stopped seizing and was now playing and giggling. That is always how it goes. However, I had videos from the previous week's episodes. I hoped those would help me.
NOPE. None of that matters. I saw a neurologist relatively quickly in the ER, and she was one who has had a good rapport with a lot of my friends. For that reason alone, she had my immediate respect, although she lost is quickly. She told me that ALL of Jayson's EEG's were normal. I informed her of what my neurologist said about the latest EEG. She informed me that there was absolutely nothing abnormal about Jayson's latest EEG. Nice, confusion. She informed me that we do not in fact even know that these are seizures. Babies do weird things. Just then Jayson started wiggling around on the hospital bed. "Is that what you think is a seizure?" she asked skeptically. Jerk. "No, I responded. But I have some videos for you to watch." "No, that's okay, I believe you." I picked up Jayson so he would stop wiggling and giving her reason to make fun of me. He noticed the lights and started arching up and staring at the hospital room lights. "Is that a seizure? I bet sometimes he likes to look at the lights and you mistake them for seizures. You can tell he is really interested in those lights." Really????? Do I look like an idiot??? I once again offered to show her the videos, and she again refused. I went on to inform her a little big about myself... I have had my child completely stop breathing three times, and have scary apnea episodes hundreds of times. His heart has completely stopped before and I did not bring him right into the hospital. We have been through brain surgery, and even reopened him which I hesitated to bring him in. I do not bring my child to the hospital unless I feel completely helpless and terrified. I am not a crazy mom. I am a special needs mom, and I can handle a lot. I think she took me seriously for about two seconds and left to come up with a plan. She came back with a seizure action plan. We increased his seizure medication dose and decided to use his regular seizure med Keppra as his rescue med. The Klonopin did not seem to work well for him. I asked the doctor what do I do when Jayson is having seizures all day every day like he had been. Clearly I don't bring him to the hospital, and I've learned that I don't call the doctors because it takes a month to call you back. And her response was, "Only bring him here if he is blue from not breathing, or if his heart stops during a seizure." Great. Great advice. Thanks for nothing. No wait, thanks for offending me and making me feel like an idiot. Glad I got to pay you hundreds of dollars for implying I'm incompetent and making me cry on my way home. I love feeling alone in this battle. It is so incredibly hard.
The good news is that increasing Jayson's Keppra dose and using Keppra as his rescue med has helped, a lot. He is still having breakthrough seizures, but nothing like they were in March. Oh, and I'm still waiting for a call back from my neurologist... Today is May 19th. Gotta love the medical system...
March 27, 2013 - Tube Drama!!!!!
After a terrible ER experience like our previous experience, it is common to desire a nice long vacation from the hospital. It is during these times that Jayson desires to make a quick comeback. I got another call at work today from our nanny. Jayson had pulled his GJ tube out. This was bad. Very very very bad. His tube is so crazy and quirky, it's next to impossible to get it back in. When it came out in November, we had a 3.5 day hospital stay and a whole surgical procedure to get it back in. I know they would not attempt it at this point in time, because he was due to get it switched out completely. BUT of course, our GI doctor was out of town on vacation and he was the ONLY person we trusted changing out this quirky tube. I prayed so hard and had faith that God has this handled. There had to be a reason for this, I just knew it.
I drove home hoping that the tube pulled out a centimeter or two. Nope, we're talking over a foot. It was done for. I drove Jayse to the hospital uncertain what the next 24 hours had in store for us. As I drove there feeling very out of control of my life, I realized as the parent I ought to take control. What were my options? What did I want to happen? I wanted an xray of his lungs. Our pulmonologist was concerned about aspiration. If the xray showed no proof of aspiration, I just wanted the GJ portion pulled out and left out. We had a port to G-feed him. Yes, this is really risky since Jayson has NEVER received G-feeds in his belly before. He may not tolerate them. He may have more reflux. He may aspirate his reflux and have lung problems. But I felt that if the xray showed his lungs were good, I wanted to try the G feeds for two weeks until we get the tube switched. It would be proof that he could tolerate stomach feeds and that switching to a G button instead of to another GJ tube would be the right choice in a couple of weeks. I decided that if his xray was not good, I would refuse the procedure being done by anyone but our doctor. If J needed to stay a couple of days with iv fluids until our doc got back, so be it. At any rate, I was not about to make a quick decision about who could touch my son.
I felt better and more in control once I had my mind made up about what I wanted. We got checked in and I felt embarrassed as so many people gave me that, "Weren't you just here yesterday" look. I spoke with the resident ER doc and told her my plan. She got it cleared and we got an xray. The xray looked good!!!!!! I felt so relieved. I pulled his GJ tube out the rest of the way and started tube feeds into his stomach. We were quickly on our way home and I was elated things went so well. I instantly felt there was a reason for this craziness... this was our trial. I would know with confidence whether moving to a G-tube button permanently was a good choice or not over the next two weeks. This would give Jayson time to adjust before his procedure. I just had to hope and pray he tolerates his feedings without too much cramping as his stomach stretches and learns to digest food.
Well we survived March madness... Sixteen doctor and therapy appointments, one EEG, and two ER visits. This is one month I am glad to see end.
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