Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo (Fall 2013)

Here’s a little video produced at the Children’s Memorial Hermann Pediatric Epilepsy Reunion at the Houston Zoo this past fall (2013).  You can see Zane’s back at around 0:34, and his face at around 1:45.  🙂

http://fast.wistia.net/embed/iframe/ilkex8firr?canonicalUrl=http%3A%2F%2Fchildrens.memorialhermann.org%2Fservices%2Fneurological%2Fpediatric-epilepsy%2F&canonicalTitle=Pediatric+Epilepsy+Reunion+2013

 

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♥ our doc!

I decided to email our neurologist with a couple smiley pics and the video of baby Z rolling over.  I didn’t want to bother her but I wanted to share some good news.

A few minutes later (on a Saturday morning), I got a short but sweet response that confirms we have the right doc!  I love that I can call or email her when we have questions or problems, but it means a lot that she responds to a quick video of my 8 month old rolling over for the first time, and in all caps with 3 exclamation points, and then thanks me for sharing.  🙂

YAY ZANE!!!

Thanks for sharing!

Making Progress

We had a visit with our neuro today, and then had another EEG.  Unfortunately they had to schedule the visit before the EEG, so I haven’t gotten confirmation that the EEG is still “normal”.  But, his progress leads me to believe it is.

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The APRN (advanced practice registered nurse) who is very knowledgeable with IS, saw Z and was telling the resident how great baby Z was progressing.  He said, “you should have seen him a month ago before starting the ACTH.  He was more like a 1 or 2 month old.”  Sad, but true.  But, now, look at him, holding up his head.  They mentioned he’s probably at a 4 month old’s level, which is a lot of progress for a little guy to make in 4 weeks.  I know he’s got a long way to go, but he’s just doing so well!  I know it’s strange to be celebrating an 8 month old holding up his head, or smiling, but that just shows you how bad it had gotten.  😦

The resident was from the adult neuro dept, but was on a pedi rotation, so wasn’t very familiar with babies and IS.  You could tell he didn’t quite know what questions to ask or how to interact with little ones.  But, in talking to him, he realized he knew more than he thought he knew about baby Z.  He is a friend of the resident who first saw the video I just happened on a whim to send to my friend who is the adult neuro nurse, and he saw the video when she had shown the attending (who is now our wonderful neuro).

 

We started the weaning process from ACTH this afternoon.  So, I just can’t help but do everything I can to help/hope that the meds did what they needed to do permanently.  I feel like I’m crossing my fingers and toes, knocking on wood, and of course, praying like mad.  He has hardly had any side effects, so I wish he could stay on it forever.  But, unfortunately that’s not how it works.

 

I asked some other moms what happened after they weaned their little ones off ACTH, and these are some of the responses I got:

“My sons returned 2 weeks after wean. Our neuro chose to try Vigabatrin next instead of repeating ACTH. We still don’t have control at max dose, just a reduction. Checking into candidacy for surgery and may add oral steroids to see if it will knock them out. Going for our weekly EEG in the morning to see what we’re going to do.”

“Atticus started ACTH June 15. By June 26 we could no longer visibly see any spasms. Sept 3 was his last injection. Sept 10 his EEG came back normal. I am happy to report that Atticus is still spasm FREE!!!!’ That’s over 4 months now. Don’t give up hope. When one door closes, another always opens. Praying ACTH worked for you xo”

“My son took 30 units twice a day for 2 weeks, then tapered to 20, 10, 10 once a day, 10 every other day. The whole thing took 4 weeks. He was seizure free after the first dose. He’s been off it for 1 month now and has a normal EEG. An EEG during the taper showed no hyps but did contain a slow wave- that’s now normalized. It seems like there’s many different dosing schedules that all are considered potentially helpful. How are your baby’s brain waves right now?”

“My daughter was on ACTH and was seizure free for a little while but they came back and we tried the diet and Meds was seizure free again. But they came back and the Nero noticed that they are just on one side so we did the surgery was seizure free for over a year but came back and did the diet again seizure free but they came back so now we r on 4 different Meds talking about the diet again”

“We did ACTH for one month and are now on prednisone for 3 months and weaning. EEG was normal after one month of ACTH and we go back for an 8 hour EEG nov 19th. If there are any spikes we are not trying ACTH again and moving to sabril.”

“My son, Tripp was diagnosed with IS at 4 months. We are in our fourth week with the ACTH injections and have seen no more signs of the IS. Unfortunately, he has started having other seizures, we have seen three different kinds. They told us Wednesday that is was Epileptic Encephalopathy and his prognosis was not good. He also has a diagnosis of Optic Nerve Hypoplasia, but they were unable to find a symptomatic cause for the IS. Has anyone else been diagnosed with other seizure disorders?”

“Update on Billy.. seizure free for 4 months, started up again suddenly 5 weeks ago, keppra been upped & upped & upped, hes on his maximum dose for his weight/age now and he still having clusters throughout the day. I dont know why ? :(”

“Have any of you had your child’s IS start really early? My son was a little shy of turning 3 months when diagnosed, so hasn’t really met any developmental milestones…not even holding his head up and he’s over 6 months now. He doesn’t interact with me, smile, or even move a whole lot. Still trying to get control of the spasms with Vigabatrin and finally got an admit date for the keto diet on Oct. 29th. I know he’ll be delayed and I can deal with that, its just that I feel like I’ve lost my baby completely. For him to not even look at me much, show recognition of me in his face, or smile at me tears my heart to pieces daily. Anyone else’s child been like this?”

Then, other moms have come back years later with posts/pictures like these:

“I so clearly remember diagnosis day and being told my baby girl would never walk……she was running, laughing and having so much fun looking for leaves. Never give up hope, our babies are so strong!”

“5 yrs old healthy as a horse my little miracle man:) keep the faith moms n dads-you will get through this! Love and prayers to all of you!”

“My little boy was diagnosed with IS in April this year and to date is doing well! He is 6 months seizure free after success with ACTH! I just wondered is anyone else’s little ones very restless sleepers with IS! We’re getting up to him a few times each night! He wakes himself up wriggling around the cot to the point his pj bottoms came off in his sleeping bag and then he squeals the house down!! Maybe he’s just a terrible sleeper but just curious!!”

“Hi, just a positive story to share, my son (currently 3years 3months old) was diagnosed with infantile spasms at 7months old, got treated with two courses of ACTH Injections, then onto Epilem, and then onto Lamotrigine, Joel has been SEIZURE FREE as two years now, and is currently going thro the ‘weaning’ process to bring him OFF the medication, there is always the risk they may come back, but we can only think positive, he has been left with some brain damage, which has led to learning difficulties and global development delay and current screening for the ASD spectrum, but he’s a happy little boy who is out mixing with ‘normal’ kids at nursery and hopefully he will continue to thrive and grow!! Never give up..there is ALWAYS a chance the child can ‘outgrow’ it!! The picture is Joel now with his big sister ♥ so proud of him!!”

“A year ago today my son was diagnosed with IS. After a long 4 1/2 months we got the seizures stopped and haven’t seen on since. 7 1/2 months later I’m thankful for doing the research I did to find the wonderful doctor in Detroit that got my sons IS to stop when two other doctors couldn’t. I also am thankful for God pointing me in that directions even if it was an 18 hour drive!”

“Me again sorry!! We got results from zacks MRI the other day and whilst he has been having these spasms/ seizures for over 9 months now, he has absolutely NO brain damage 🙂 just thought I’d give some hope to anyone in particular worrying about brain damage. Not to say it can’t happen, but I’m over the moon as I thought for sure with his seizures there would be damage.”

“Michael has been seizure free for over two months now and we are so thankful but also so nervous! Does anyone have any idea of milestones we could be looking forward to in terms of not relapsing. Like how long do they have to go before they are in the clear or where the statistic drops lower… Thank you all for the support!!”

“For those of you who haven’t experienced the “new baby” I just want to let everyone know that it happened over night for us. The last two days we have a “new baby” I’ve never seen him happier in my life!!!! Before this he showed ZERO happiness, no emotion, except for crying, and he’s doing so much more than ever and his progress is 100%. PLEASE STAY STRONG, GUYS! It’ll happen! Pray pray pray!!! I’m praying for all of us in this group.”

 

 

I feel like it’s all over the map.  Some babies relapse.  Some don’t.  Some go on to have other types of seizures.  Some don’t.  Some go on to lead completely normal lives.  Some don’t.  There’s really no telling.  So, I’m praying like mad because I don’t know what else to do.

 

5th Hospital Admission in 3 months

Here we are, back in the hospital, for the 5th admission in 3 months.

After some pretty crappy experiences, I know neither of us was looking forward to it.  But, I was excited to final get baby Z on ACTH.  It was actually the treatment I wanted first, but after seeing the whole fiasco with getting the stuff, I don’t think the insurance company would have approved it back then, even if we had tried.  I’m not very excited about having to give him shots myself, but I am hopeful it will help him.

First off, baby Z had a repeat swallow test.  He is still aspirating regular liquid without coughing.  So, they want to continue to thicken his bottles to nectar consistency.  But, I did confirm with that doc that it is a swallow issue, not a reflux
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3rd day of Keto Diet

Once again, we started what we thought was going to be an easy day on the diet.  Here’s my little guy this morning, just wanting to be held and cuddled.

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Then, his EEG probes were removed.

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Unfortunately, it wasn’t that easy.  Instead, it looked like one of the probes had a sore.  It looked like it has blistered and broke open. Poor little guy.  No wonder he was in a crabby mood yesterday.  His poor little head was probably hurting and he couldn’t tell us.  I feel terrible that he was hurting and we didn’t even know.  Ugh.

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That morning, he started breathing strangely again. He had actually started that way back when we started the Sabril, and I don’t know if it was related to  the new drug or not, but it was literally 12 hours after starting the new med.  Back then, I had talked to our neuro about it, who did not think it was related, so she recommended I take baby Z to a pediatrician in case he was getting a cold.  The pedi could hear it and was concerned, so she did a throat x-ray.  The radiologist said that the x-ray showed either an infection or a developmental issue.  The pedi used a tongue depressor and flashlight to look down his throat but could not see an infection, so she referred us out to an ENT.  I called several ENT’s on the list our pedi had given us, but the earliest of them had a 2-3 week wait.  Except for one who could get us in a couple days later.  So, even though he didn’t specialize in kids (he saw kids, but didn’t specialize in them), I took the appointment.  But, he really didn’t do much.  Of course, during that appointment, baby Z wasn’t having any issues.  So, he used a tongue depressor, but basically said it wasn’t anything and sent us on our way.  Since then, it would come and go, but we decided not to stress over it since he had been checked.  But, when it started happening while we were in the hospital, I thought we might as well have it checked again.  I talked about it to a resident, who listened to his chest and determined that he did not have a crackle (which would indicate pneumonia).  She said that it’s not uncommon for babies to have soft cartilage in his throat, which can make it collapse.  But, his pulsox was fine, so it wasn’t causing any problems.  That’s basically what the pedi and ENT had determined a month or so ago. So, I considered the issue was dropped.

The dietitian and the neurologist’s assistant came by to talk and answer some questions.  They were really great, and answered everything I asked.  They were really, really great.  But, in trying to give me the information I needed, they started to overwhelm me.  They started telling me about all the negative things that could {likely} happen in the future.  I have already read all that stuff, but it’s different reading it about someone else’s child, and hearing it about your own child.  They explained that babies with this condition usually go on to have other kinds of seizures.  A lot of times they develop psychological and behavioral problems, may have developmental delay, could be more prone to autism.  I guess I just keep trying to be positive and hopeful that we are helping him.  Right now it’s easy, because he’s a baby and so far isn’t that far behind.  I mean, babies lay around and because he looks healthy, there’s no real indication that there’s a problem.  But, as he grows and it’s more obvious that he should be sitting/crawing/standing/walking, it’s going to become more difficult to pretend everything is okay.  They also told me that infantile spasms will eventually go away on their own, with no medication or treatment.  But, it’s not good when that happens… as in REALLY not good, because those kids have a lot of really bad problems.  So, it’s a good thing that we are doing all we can so early on.  They did mention that they were impressed at the research I’ve done and how much I know and understand, and they said that will serve baby Z well.  They said that some parents just can’t make a decision, get overwhelmed and don’t end up doing anything.  But, what they don’t know is that’s what I feel like doing.  I feel like curling into a ball in bed and crying. But, I don’t have time for that because he’s my baby and I have to do what I can for him.  Anyway, it was a rough conversation.

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A little while after they left, the nurse came in and told me not to feed him any more and that he was going for a swallow study.  The nurse has a french accent and I had to clarify, but sure enough, I heard him right.  Basically, the nutritionist and neurologist decided to have the swallow study done to make sure baby Z wasn’t going to aspirate his new formula.  Because the new ketogenic formula is so high in fat, it can be more problematic if aspirated into the lungs.  So, we held off on the feedings, and 2 escorts came to help us get to the right place for the swallow study.  When we arrived, they had just taken another patient into the room, so we had to wait.  It wouldn’t have been a problem, except my little guy was getting really hungry.  So he waited a couple of minutes, but then let loose and started screaming for food.  I was trying to calm him, but nothing was helping.  When they finally got us into the room for the test, they were trying to explain the test to me over a screaming baby.  I tried to get the gist of it and they let me slip on a shield so I could stay and watch.  If it wasn’t *my* child, it would have been really interesting.  But, seeing your child’s insides on a computer screen is just weird and wrong.  They started feeding him the {glucose free} barium, and he was starving, so he gladly took it.  Clear as day you could see it on the monitor going down his throat.  Until it didn’t.  Yup.  He aspirated… and he *didn’t* cough.  That’s a problem.  Then they took that consistency of barium away, and gave him the next consistency, which they called “nectar”.  It was just a little thicker, and baby Z took that one just fine with no aspirating.  Phew.  But, they only gave him enough to make sure he wasn’t aspirating, and then the test was done.  I picked up baby Z and was walking out of the room and the doctor told me she would call and talk to our dietitian.  As soon as we walked out of the testing room, they closed the doors behind me, and the doctor and everyone somehow disappeared.  I was left with a hungry, crying baby, and had absolutely no idea where I was.  It was kinda like a horror movie, with these long, nondescript hospital hallways.  I started walking and tried my best to remember how I got there, but I wan’t doing very well.  Baby Z just kept getting louder and louder, and I kept getting more and more emotional.  I thought that we were coming just for a basic watch as he started a new formula.  Easy-peasy, right?  But, nothing about this has been easy.

Someone pointed me in the right direction and I eventually made it back.  But, by then Z was crying and I was sobbing and we were a freaking mess. When we got back to the room, I pulled the curtain, fed my baby, and just sobbed and sobbed.  Then I heard the camera turn so it could see us, and I soooo wanted to rip the camera off the wall.  It is so unnerving to be watched all the time, and especially when you need a moment to pull yourself together.  UUUGGGGHHHH.

Then, unknowingly, the neuro resident came in to talk to us and I was still sobbing, and a mess.  I had to ask her to give me a minute.  When she came back in, she told me baby Z was now going to have a chest x-ray to make sure he didn’t have anything in his lungs.  But, the x-ray came to our room, so at least we didn’t have to get lost in the hospital.  Then the dietitian came to our room and explained that the thickener they used to have is no longer available so she needed to find another option and would have to re-balance the formula to account for the new carbs in the thickener.  But, I told her she needed to bring us something for the night so baby Z could eat, wouldn’t aspirate, and then she could finalize the new balance tomorrow.  Thankfully she agreed and brought some thickener in right away.

Then the pediatric team came over to take a look at baby Z and check him out.  They reviewed the chest x-ray and decided to put him on a reflux medication.  That’s when I stopped them.  I explained that my daughter had reflux.  I know what reflux looks like.  She would spit up… A LOT!  We went through lots of formulas before finally finding one that would work for her.  She had to sleep with a pillow under her mattress and had to take medication.  Baby Z does not have any of that, and I don’t want him getting another medication unless it’s truly necessary.  But, then they explained.  Basically, when a thin liquid goes down the throat to the stomach, there’s a sphincter that closes off to keep it down.  But, all babies have some sort of reflux because the sphincter isn’t tight enough.  Some babies don’t have any outward symptoms of it (like the symptoms my daughter had shown).  When the liquid is thin, it easily moves back up past the not-fully-closed sphincter and can go down the windpipe.  But, when the liquid or food is thicker and heavier, gravity helps keep it down so it doesn’t come back up as easily. So, the thickener in the formula combined with the reflux meds should get him the help he needs.  The dietitian just has some work to re-balance the 3:1 ketogenic ratio, because both the thickener and the additional medicine add carbs (and remember, even a tiny little bit of carbs can throw off the whole balance of this really strict diet.)

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A bad day and a tissy fit

It has been a l-o-n-g day, and not a lot has gone right.  Z and I were up and on the road by 6:30 a.m., and we spent nearly 2 hours in heavy morning traffic before arriving at the hospital.  Still, I was in a pretty good mood, because I was about to start a new treatment for Z, and was hopeful this would be ‘the one’.  But, when I checked in at admissions, they told me I was supposed to have checked in last night, on Sunday.  I explained that I was NEVER told Sunday.  My daughter’s 9th birthday was on Saturday, and her best friend of 8 1/2 years turned 9 on Sunday, and we also had an additional party for some other really good friends on Sunday.  So, I remember specifically asking for Monday or Tuesday, and the Dr.’s assistant said Monday would be perfect because the Dr. was getting ready to go to a conference, and Monday would be the last day that she could still be here for the entire treatment.  Regardless, it really wasn’t that big of a deal to me, because I figured it would work out.  That is, until someone called me at admissions and chewed me out for not getting there on Sunday.  I was instantly defensive, because I was NEVER told Sunday, and her tone really pissed me off.  Then she made it sound like they were going to turn us away because they no longer had a bed for Z.  I explained that if there was a bed for us on Sunday night, and treatment was supposed to be several days long, shouldn’t that bed still be reserved for us on Monday morning.  She started making up other B.S. and continued to berate me for not being there on Sunday.  I was then told to wait and she’d see what she could do because she had to get the *new* date (of 12 hours later) re-approved with insurance.  AAAARRRRGGGHHH.  Then she mentioned that she did have a message from the Dr’s assistant on Friday explaining but that she wasn’t there on Friday.  Uhm… so WHY are you berating me because YOU should have had someone covering for you on your day off.

So, we sat and waited.  Me, Z in his stroller, the big ol’ diaper bag, a bag I’d packed with items I’d need for 4-5 days, my laptop bag, and another bag with all the other bottles, formula, diapers, etc.  Baby Z was getting hungry, so I had to start prepping a bottle in the middle of the waiting area with all our stuff, when we should have been in our own room that was supposed to have been ready for us then, on MONDAY morning.  We waited about an hour, and finally got into admissions for the paperwork and we were then escorted to our room.

Then, the real ‘fun’ began.  I explained to the nurses that baby Z was a hard stick.  But they must hear that a lot, because they didn’t seem to believe me.  Even when I explained everything in detail, like the fact that when an IV was put in, you can’t draw blood from it or it would pull the whole thing out, or the fact that if they tried to stick him, they’d end up sticking all 4 extremities before getting the IV and blood.  Or, the fact that he had to have an ultrasound in order to get an IV in at Texas Children’s.  So, what happened?  Well, they stuck him and didn’t get anything, so then they stuck him again and at least they got the IV in.  At least they did listen about pulling blood from the IV, so they didn’t, but it did require another (3rd) stick to try to get blood.  When they did, it quit flowing and they didn’t get much, but they decided to stop and see if the lab could make due, otherwise it would have required a 4th stick.  UGH!  (Which it later did because they didn’t have enough).

Once all the blood work was done, then baby Z had to get hooked up to all the EEG probes.  He doesn’t particularly like having that done, but this tech must have had a lighter touch, because it wasn’t so bad.  Or else baby Z was already exhausted from all the screaming during all the blood work.  So, it took a while, but at least baby Z wasn’t screaming the whole time!
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Once all that was done, we waited for the dietitian.  Then we waited some more.  Then we waited and waited and waited some more.  The neurologist stopped in to see us, and we chatted a little bit, but nothing was really happening so I didn’t really have any questions.  So, she left and we waited some more.  Finally the dietitian came in to see us.  Basically, she went over everything we had ALREADY discussed on Friday, and then she said she had to figure out the combination of regular formula to ketogenic formula.  Uhm… I thought that’s what she was supposed to do Friday.  But, okay.  I thought it was going to just be a few minutes.  But, we waited, and waited, and waited some more.  Finally, around 6:30, she came back and had worked out the details.  But, she said we were going to wait until the next day to start.  What?!?!  I questioned her philosophy, but she said it would be better to start in the morning.  I guess I see her point, that he’s going to be woke up every 2 hours for blood sugar checks.  BUT… that’s going to happen tomorrow night, so why not just start.  It just felt like a waste of a day, and I don’t really want to be here on Friday just because she wanted to wait.  So, I convinced her that we should get started, and baby Z got his first “dose” of his transitional recipe at 7:30 p.m., after the dietitian had left for the day.

The dietitian had given us an easy recipe of 4 ounces of regular formula to 2 ounces of ketogenic formula, for the first day, making a 6 ounce bottle.  But, she had specifically told me that he could eat whatever he wanted on the ketogenic diet, as long as he stayed at the right ratio.  I had explained that sometimes baby Z sleeps a lot one day and barely eats, then does the opposite the next day.  So, he doesn’t have a typical 24-hour type of schedule.  Anyway, she was gone, baby Z drank his entire 6 ounces really fast, and was still hungry.  I knew he didn’t need another 6 ounces, so I started mixing 2 ounces of formula in our room, and walked to the refrigerator across from the nurses station to get 1 ounce of the ketogenic formula.  But, then the nurses saw me and told me he couldn’t have any more formula (or anything) for 4 hours.  WHAT?!?!?  All the while, baby Z is in his room screaming, because he’s hungry and waiting on me to bring him more food.  I explained what the dietitian had told me and I explained that he just need a couple more ounces.  But, they wouldn’t let up.  So, I had four nurses very adamantly telling me that I could not feed my baby because it was a very strict diet.  I was getting angrier and angrier, because that is NOT how it was explained to me.  If it had been, I would have been sure that the dietitian had formulated it so he could have 8 ounces, or feedings more often, or SOMETHING.  But, they wouldn’t listen.  Finally they offered to call up the dietitian. At that point I was pissed.  (Remember, baby Z is down the hall screaming at this point).  I told them that they better do that, then I stormed down the hall and I SLAMMED the door, and pulled the curtain.  Then, instead of ripping the flipping video camera off the wall like I wanted to do, I took a deep breath, picked up my screaming baby, and tried to calm him.  A few minutes later, two of the nurses walked in and pulled the curtain back and nicely told me that they were wrong and that I *could* feed my baby.  AAARRRGGGHHH.  You’d think they’d have experience with the ketogenic diet and would know this stuff.  But, whatever.  Even though they were in the wrong, I am completely embarrassed at my reaction.  I guess it was the stress of the day and not being able to feed my hungry baby, when the whole point of being here was to feed him this stuff.  But, I acted like a toddler, and it’s embarrassing.  Luckily though, the nurses seemed to understand, and they commented that they understand and that they have babies too.  Now it’s become kind of a running joke, because each time I walk out of the room, they ask how I’m doing and smile, and we all kind of laugh.  That was not the ice-breaker I had in mind, but, hey, whatever works, right.   HA!

I talked to my hubby, and we feel that all the ducks were definitely not in a row today, and that the hospital really needs to work on that. (That’s not exactly how our conversation went, but I’ll save you from some of our expletives!  😉  I’m just not sure how to proceed, or who to turn to.  We definitely think they need some feedback so they can improve.  But, how do you go about that when you may have a long-standing relationship with these people and you don’t want to offend them?  How do you give diplomatic/creative criticism???  We need them on our side, to help baby Z.  But, we also need them to have their ducks in a row, so we can feel confident in their abilities, and more importantly our little guy (and other little ones) in the best way possible!