Jake's World

The Epileptic Specialist started Jake on another seizure medication - Lamotrigine (generic for Lamictal) on Jan 19th.  He said not to expect to see any results for a few months as the medication takes a long time to get into your system.  We are hoping this makes a difference.

Unfortunately, Jake was sick again the beginning of this month - his sinuses again w/ fever and ever since then (feb 1st), his apnic and choking episodes have increased.  The increase in choking episodes makes me think his reflux is acting up again.  I need to call the GI doctor today.  Jake is usually the happiest kid, but lately there are times where he is hysterically crying and we're not sure if its pain from reflux, teeth issues from molars coming in, or belly issues from being on antibiotic for so long.  It is by far the most frustrating thing about having a child that can't tell you what is wrong.  You just feel helpless.  It breaks my heart.  I hope we can figure this out soon. 

I have not updated Jake's site in over 2 years and it's way over due.  So much has happened to him that it's going to be hard to remember everything.  I tried to fill in the blanks in the 2009 section below so I can begin with today... 

Despite having the worst nights of his life over the past 7 months, Jake is doing better than ever during the day.  He is more alert, happier and stronger than he has ever been during hours awake.  Mike and I believe this is some sort of sign from Jake telling us not to give up on him.  We just know in our hearts we will get through this without doing anything drastic.

Now that the oxygen and Zantac seem to have helped dramatically, the Pulmonogist and GI docs are very pleased, but unfortunately, although improved, he is still having episodes and we are back to our original thought - that this is some type of seizure that is just not being picked up on the EEG.  It certainly looks like a seizure when the episode starts.  There are even times where he is breathing at first and then stops after several seconds.  We go back to the Epileptic Specialist at Cornell on Tues Jan, 19th so we'll see what he says at that appointment.

2009 - Not a Good Year for Jake

Hip Surgery 2009 was not a good year for Jake. Jake's right hip had been popping out of the socket since the end of 2007 (right after the seizures started).  By the middle of 2008, it was happening all the time and he was no longer able to go in the stander or the gait trainer.  It didn't seem to bother him or to cause him any pain, but it was not good to bear weight with his hip out of the socket.  There were actually times he seemed to enjoy it - weird right?!  But, Michelle (his one to one aide at Just Kids) would see it too!  While changing his diaper, he would pop it out and start laughing and you would have to help it back in.  It would give us the chills, but Jake would laugh!!

Needless to say, he had major hip surgery on January 20th of 2009 and was home in a body cast for 6 weeks - out of school for 8 weeks.  Immediately after the surgery, he had complications from the anesthesia, had trouble breathing and basically didn't wake up for 3 days - very scary to say the least.  Mike and I never left the hospital. Once the doctors started to really get nervous and were ready to start running additional tests, Jake woke up.  It was as if he heard them talking and said "I'm done with this place - I better wake up!"  AND....in typical Jake fashion he opened his eyes and was smiling and eating within the hour.  We were discharged later that day. 

Jake was a trooper.  He handled the cast so well and thank God he had his longest seizure-free stretch during that time.  He ate and drank well, despite having to practically lay down while doing it and was in a great mood the majority of the time.  He is one amazing little boy!!

Hospital Stay - sick  Fast forward to March after the cast came off...he went back to school for 6 days, got really sick, missed school fro 1 week and then ended up in the PICU at Good Sam for 4 nights.  Just a nightmare.  His white cell counts were dangerously low and apparently this could be a side effect of the Depakote (one of his seizure meds) so he was taken off Depakote at that time and started on a different med (Topamax).  We worked hard for a while to try to get his seizures under control again.  He was waking up about 5 times a night with mini-seizure like episodes so we were gradually increasing the Topamax until he was almost at a maximum dose.  No one was getting any sleep.   In May we found it was the Melatonin we were giving him to help him sleep that was causing all the problems.  As soon as we stopped the Melatonin (per his nutritionist), within days he was sleeping better at night and much more alert during the day.

Apnic Episodes Started  We had 1 full month of an awesome stretch where he was healthy and doing really well.  He had his forth myringotomy (surgery for ear tubes) in the beginning of the month and tolerated it really well.   He also had a swallow study done.   He aspirated on water and everything else we gave him was travelling into his upper airway, before he would retract and swallow it.  Since this was risky, at that time we were told his liquids need to be thickened to a nectar consistency.  Jake seemed fine with the change.

Then on June 22nd, he startled from a nap in his wheelchair after school and he stopped breathing.  I had to lift him out of the chair to stimulate him to take a breath.  After 3 weeks of these episodes happening on a daily basis, we were admitted to the hospital for a 48 hour video EEG to see if something changed with his seizures that would require a medication change.  (We were convinced it was some type of seizure, because it was so similar to what happened to him in 2007 when he was first treated for seizures.)  Needless to say, he had an episode the second night and it didn't register as a seizure on the EEG, so we were transferred to the PICU.  He spent a total of 10 nights in the hospital. It was his longest hospital stay since he was born, but it was so much harder this time with the twins at home at an age (just turned four) where they had a lot of questions.  Thank God we are blessed with such a supportive family willing to do anything and everything we needed to help out.

A few weeks after being released from the hospital, the episodes actually got worse.  They increased to as often as 5 times a night and once we had the proper monitor, we found that his blood oxygen level would drop significantly.  Beginning in August, in addition to the typical episodes, he started having episdoes where he seemed to choke on his own saliva which would also obstruct his breathing.  AND...by September, we added episodes where his oxygen would drop without an apparent episode.  Jake has been sleeping in our room since June of 2009.  We set up a "nurse's station" (oxygen, suction machine, apnea monitor and pulse oximeter) and Jake sleeps on a bed right next to me so I can help him in seconds.  We usually have to sit him up, hit him on the back, suction him...basically do whatever we can to open his airway until he takes a gasping breath. 

The initial recommendation from his 10 night stay at Schneider Children's Hospital in July was to do a tracheostomy to secure his airway and put in a feeding tube.  Because we didn't (and still don't) believe this is what Jake needs, we began visiting many different specialists to get additional opinions (Pulmonogist, Gastroenterologist, Palate Specialist, Epileptic Specialist, Pediatric ENT/Airway Specialist, Cardiologist, Craniofacial Specialist).  These episodes happened once before and with the right medication, he didn't have an apnic episode for 18 months.  We know we will get there again.  It's just taking a very long time.

Eating Trouble / Reflux Issues  In addition to his nightly episodes, in October of 2009 he started having trouble eating.  He was pooling food in his mouth, having difficulty swallowing and food was coming out of his nose as he ate and sometimes as long as an hour after eating.  The GI doctor started him on Zantac for reflux.  Initially we didn't notice any change and he was scheduled for a Milk Scan/Gastric Emptying Study (results ended up being within the normal range - thank God for that!) Also, fast forward to December and his eating improved dramatically.  He most likely had a severe case of esophogitis and the Zantac (over time) helped him heal.  Now (Jan 2010), Jake is back eating like a champ!!  In addition, his choking episodes improved significantly.  They don't happen nearly as often, which makes us think that the reflux was a huge part of his overall episodes getting worse. 

Oxygen  In November of 2009, he was started on .5 liters of oxygen while sleeping.  This seemed to help as well.  The night we started this was the first night of a 4 night stretch where he went apnic-episode free.  The combination of the Zantac and Oxygen have considerably improved his condition.  Unfortunately, because we are dealing with his airway, even one episode is one too many.  We have recently been approved for night nursing hours which has been a huge relief.  Now we just need to find nurses to cover all shifts and at least Mike and I will be able to sleep knowing Jake is in his own room in good hands.

2008

On January 2nd, 2008 Jake was in the hospital for another video EEG.  This time, he had a startle episode where he stopped breathing and it did register as a partial seizure on the left side of his brain.  It was the first time a seizure was detected on an EEG.   He was started on a second seizure medication at that time.  The good news was the episodes where he would stop breathing stopped happening.  The bad news was that the episodes changed and for the next month or so, Jake had his days and nights mixed up.  He would pretty much sleep all day and was awake most of the night.  He developed severe tremors and we were using Diastat way too often to stop these odd lengthy seizures he was having (Diastat is a type of valium that is administered rectally to stop seizures).  Needless to say, he was weaned off this second medicine (Trileptal) and was started on a different seizure medicine called Keppra. 

By April of 2008, Jake was doing much better.  He would have stretches of days without any seizures at all so it seemed like the combination of Depakote & Keppra really got things under control.  His seizure activity would always increase when he got sick (especially with fever) but that is typical of any child.  Apparently being sick lowers the seizure threshold so you would expect to see more seizures during sick times and that is exactly what happened to Jake.

Not a Good 6 weeks for Jake

It's been a long time since i posted anything.  There has been a  lot going on over here.  Here is a quick overview...

• many doctor visits - 14 to be exact
• overnight hospital stay to check for seizures - his shaking episodes have increased in frequency, intensity and duration - no seizures were detected
• surgery - Jake needed new ear tubes - his 3rd set
• another hearing test - Jake needs to start wearing his hering aids again - the test showed severe to profound hearing loss in both ears
• Jake had to have a beauty mark removed - it changed considerably in 1yr - the test results showed atypical cells showed it was good that we had it removed.
• Jake was started on seizure medication last week - he had 2 episodes last week where he stopped breathing for up to 40 seconds - it was by far the scariest thing I have ever seen in my life.  On a positive note the medication seems to be helping...

Please keep Jake in your prayers...

Jake held the Z-Vibe!

Jake held his Z-vibe for the first time EVER!  We have been working on his grasp forever - he won't reach out and grab for anything (YET!), but if we put something in his hands (our finger, his toothbrush, and now the z-vibe), he'll grab pretty tightly!  The z-vibe has always been too thin, but I think the vibration finally motivated him to grab on!  He's a champ! Check out the video on Jake's video page!