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.
