So we are in the process of starting Jackson on a new medicine to help with many things. The main focus or areas we are mostly concerned with the aggressive behaviors like pulling hair and head banging which we understand are brought on by Jackson’s anxiety and/or hyper-arousal. We also want to address the ADHD hyperness that might prevent him from focusing or learning at school. While we were in Chicago visiting Jackson’s Fragile X doctor we discussed all these things with her along with having her manage his seizures since she gives us a better response all the way from Chicago than the doctors here in the STL. Jackson and Sara are both on summer break from school, so a perfect time to try this new medicine, Clonidine. Yes, if you have a crazy memory like I do, we tried Jackson on Clonidine over a year ago to address his sleep issues and we saw an increase in head banging, sleep was a struggle, and he was a zombie throughout the morning. Jackson can now swallow pills and this Clonidine is an extended release. The doctor also thought it would be a good candidate because Jackson is now older and bigger, so his system my react differently this time around.
So far the results haven’t been exactly what we were hoping for. Jackson takes the medicine in the morning. About 2 hours after he is ready for a nap, sometimes just a quick power nap and sometimes for an hour or so. After the nap he is a zombie till his normal nap time around 1 and then he sleeps for 2 hours. After regular nap time he is back to being a zombie again until after dinner to which he returns to his normal bubbly giggly stinker self. We emailed Dr. Berry-Kravis to see how long we need to try this, she says a week. The good results are he is more calm and focused during speech and OT.
Since Jackson is getting a lot of rest during the day, at night he is waking up around 2 or 3 AM, tossing and turning until finding a comfy spot on me across my neck. Comfy for him, not really for me, but whatever it takes for him to get sleep I don’t really care. On day four of tossing and turning, Jackson couldn’t find that comfy spot and started pulling hair. First it was my hair, then Sara’s. It became clear to us that he was not going to go back to sleep, so Sara took him into the living room for some Mickey Mouse. After an hour Sara brought him back to bed, but he didn’t want any part of that, back to pulling hair. So they stayed out in the living room for the remainder of the morning so I could get a little bit of sleep before work. It was rough getting out of bed let me tell you. I checked in on them before hopping in the shower. Sara was asleep in the recliner. Jackson was sleeping on the love seat and he looked up at me, smiled, and lay back down. When I got out of the shower I heard Sara close the recliner and she was running over to Jackson calling name. She didn’t have her glasses on, so when I came out of the bathroom I saw that he threw up on the love seat, he was having a seizure. Sara picked him up and moved him to the floor; I grabbed a wash cloth and the emergency medicine. Normally you wait 5 minutes before giving the emergency medicine, but we have no idea how long he has been having one…so we waited a minute. Sara gave him the medicine and called 911. I grabbed some clothes for us, let the doggies out, and by then the first responders was at the door. Jackson was still having his seizure at that time, so the fire rescuers saw what his seizures look like. When EMT’s arrived Jackson was coming out of his seizure. The emergency medicine worked this time.
These seizures appear to be happening on a two month cycle. One of the EMT’s remembers being at our house from the last one. Unfortunately we still have not had a follow up with an STL neurologist (I will come back to this topic), so our only action plan is give him emergency medicine after 5 minutes, then take ambulance to ER. So we told the lead EMT we want to go to Children’s in unison when he asked where we wanted to go. The lead EMT responded with, well Children’s is not the closest hospital so would you rather go to St. Anthony’s…and that is when I start to lose it. I explain that St. Anthony’s pediatric ER is not equipped to handle Jackson’s needs and I refuse to let anyone take him there. The EMT decides to continue on his spiel about going to a closer hospital. To which I respond with, well if you really want to take him to a closer hospital and then pay for the helicopter ride to the hospital we want to go to, then be my guest. Now I have 4 men looking at me funny in my living room. The EMT wanted to make sure I knew that his ambulance is not equipped to handle things if Jackson has another seizure on the way and given the time of morning the traffic is going to be unpredictable, making sure I understand the risks. My final response in a not so nice tone was, I will take that risk because my son has a better chance of making the ambulance ride to Children’s than going to an ER that can’t read a weight chart and do the conversions for the medicine he needs, let along get a proper reading on his blood pressure. You have sirens; if you need them use them. I was so ready to lose it further on this guy….or tell him screw off I will drive him myself. It is only a 10 mile difference without stop lights to go to Children’s over St. Anthony’s. I personally think it is easier to get to Children’s because it is all highway. I was so mad….
Sara rode the ambulance with Jackson and the EMT apologized for arguing with me. He said it is their procedure to make sure they take someone to the closest hospital and wanted to make sure we understood the risks. Sara explained to him in better detail of our experience at the “closer” hospital. The EMT then tells Sara he has a 3 year old daughter that has seizures and he understands what we are going through. WHAT! OMG…so why give me that much trouble about what hospital I want my son to go to. Geesh…
I arrived to Children’s and I didn’t see the ambulance on the way this time. I may have mentioned this in a different post, but you have to go through security at the ER at children’s, it isn’t as bad as TSA, but you do have to walk through a metal detector and they will go through your belongings. The security guard this day was a much older gentleman. He asks me if I have anything sharp, not once, not twice, but three times. After you pass though the metal detector, security will ask what patient and your relationship to the patient. Before this guard can ask I say, “my son just came in on the ambulance’. The guard responds, “Hamilton?” I said yup and then he asks me, “What is your relation to the patient?” After rolling my eyes because I had just said “MY SON” I respond, “Mother”. The guard looking very confused responded with, “then who is with him?” With a big smirk on my face I respond, “His other mother”. Whoa… the look on his face. I thought for sure he was going to ask me for ID at this point, but he printed off my badge and handed it to me with a look of disgust. Good thing I had much more important things to attend to than waist any more time with him.
The check-in nurse walked me back to Jackson’s room where he was sleeping. He was only hooked up to a pulsox and all his vitals were really good. Sara was talking to the ER attending going over history and medicines. Half way through someone pulled the attending out of the room for a meeting and they told us a different doctor will come in soon. The doctor came in. Sara started going over the history, told him Dr. Berry-Kravis was our FX/seizure doctor. The doctor perked up, said he was very familiar with her and that he did some training in Chicago. After hearing everything Sara had, he said we seemed very versed and he asked what we normally do after Jackson has a seizure. Our answer was, well we come here because that is what they told us to do. He asked us if we had a local neurologist who is managing his seizure care. Our answer is, well Dr. McGill is supposed to be his doctor, but we are not getting any responses from his office. Sara even asked if this ER doctor has any recommendations any of the neurologists here. He responded with Dr. McGill is a good one to his knowledge. I don’t think he was prepared for us to ask nor have the responses we had. The doctor was going to consult with neurology, see what we should do at this point, and come back to us. We handed him some scripts that we got when we were in Chicago from Dr. Kravis. Sara sends an email to Dr. Kravis and before the ER doctor even come back to the room, Dr. Kravis responds….took her 5 minutes. She thinks because of Jackson’s erratic sleep patterns this week put him at a high risk to have a seizure this time around. The Clonidine didn’t cause the seizure, although it may have caused the erratic sleep issues. Next step is measure the Depakote (anti-seizure) medicine in his blood, she wants to see the levels be around 80, the last seizure the level was around 70. The ER doctor spoke with neurology and they suggest running some blood tests (same ones we already gave him) and then if everything is good we can go home. The nurses come in to take some blood and we discussed giving him his morning medicine. Nurse comes back with some baby food (pureed pears) and a fork that was all they had. When we tried to give Jackson the medicine, he threw up. So we waiting a little while and was able to give it to him using a breakfast bar as a positive reinforcer.
We sat and waited for the blood results. Sara turned on cable TV, something we don’t have at home. Ironically Dr. McGill’s office calls to schedule a follow up visit. I explain that we are currently at the hospital in the ER because Jackson had a seizure this morning. The lady did not even respond to that. The phone is cutting out and I handed Sara the phone since she is the keep of the schedule anyway. The phone connection drops and the office calls back. Sara explains to the lady that we haven’t had our follow up from February, nor April, and now we have today. The lady is super confused and said normally follow visits are scheduled 6 months after a seizure. WHAT!?! 6 MONTHS?!? Sara explains, we were supposed to have visit in April, but Jackson was in the hospital on the day of the follow up (8 weeks after, not 6 months). Since Jackson was in the hospital, the neurologist on the floor told us he consulted with Dr. McGill and not to worry about that appointment. Then we were told someone from Dr. McGill’s office would call us within 2 weeks to reset it up, but if we don’t hear to call and schedule on our own. It is the end of June; it is well past 8 weeks for them to be calling us. We also ran into a medicine refill debacle in between then to which Sara had to call multiple times to get anywhere. So when we were in Chicago we asked Dr. Kravis to manage things because she at least responds to us. Since Dr. Kravis agreed to manager his seizure and we were completely frustrated over the medicine refill mess we never called them to schedule the follow up. Here it is about 9 weeks later and they are calling for the follow up from April. This is so ridiculous. According to the website Children’s is ranked 7th in the nation when it comes to Pediatrics in Neurology, I don’t know how that is possible. We can’t get a phone call back in a timely matter and after a few days when we got a call from the doctor over the medicine mishap he was rude and tried to blame the mismanagement of records on Children’s side instead of his office. We are on our second neurologist here at Children’s, soon to be on our third at this rate.
Jackson’s blood results came back; the ER doctor wrote the details down for us and said he was waiting to hear back from the neurology floor. The doctor figured we would want to email them to Dr. Kravis. We sent her the results, she responded within 10 minutes. The white blood cell count was high, but she expected that after the seizure. The Depakote level was 55, so she wants to increase that. She thinks two pills in the morning, 1 afternoon, 2 at night. After an hour, the doctor came back with the same information the Dr. Kravis gave us except less detail. The doctor wrote us a new script for the additional anti-seizure medicine and was highly impressed with Dr. Kravis. We got Jackson dressed to leave as we were waiting for the discharge papers, Jackson threw up again, but he was all smiles and flirted with the nurse when she came in. It was over an hour since he had his medicine, so there was on concern there. I asked if we could take a vomit bucket just in case for the ride home.
Jackson was very alert all the way home. He loves riding in the car and looking at the other cars on the road. We were all hungry so I stopped at McDonalds; Jackson threw up as we waited for our food. Then he wanted to drink up his apple juice. Sara was leery in giving him too much. When we got home Jackson wanted to eat. This child puts away some food. He did not get sick anymore, but he seemed slightly feverish throughout the day. Our AC was running non-stop and not getting below 80 so that may have played a little role. I didn’t not sleep much over the weekend constantly using my cell phone to make sure that his eyes were closed and he was sleeping. We had a busy weekend ahead of us, but knew the best thing to do was try to keep it easy for Jackson as much as possible.