Infantile Spasms

These past 2 weeks have been eventful.  Mason got croup and pneumonia and had to spend an afternoon in the ER, Holland and I got ear infections, and Carly had a 104 degree fever for 2 days.  Having a child with croup means sleep is non-existent for the child and the parents. It's very hard. Mason still has a bad cough but at the worst of the croup he was waking up every hour at night with coughing attacks and throwing up. Monday this past week Mason finished his 10 day course of Amoxicillin for the pneumonia and I got to take him back to the doctor to get clearance for g-tube surgery again. His lungs were clear and he got clearance for the surgery! I scheduled the surgery for November 30th. However, The excitement was short lived.  The g-tube surgery is again postponed until January this time. Here's what has been happening:

About 2 months ago I noticed that Mason had a very exaggerated startle reflex. I kind of brushed it off and didn't worry too much because he was only 2 months old.  After a few weeks it seemed like he was startling more which worried me because I knew after 2 months the Moro (startle) reflex starts to disappear not get worse! I googled it and came upon infantile spasms. If you want a good description look here.His startles didn't really resemble infantile spasms in that they don't occur one after another, they're more random throughout the day.  For the past month I asked pretty much every specialist I've taken Mason to about it, and everyone made me feel at ease about them.  I decided to make an appointment with a different neurologist (Dr. Mitra) so I could get Mason checked out before our next scheduled neurology appointment in January. I made the appointment at the first of October for the soonest available appointment which was November 19th (this past Thursday).

Here's a video I took of the spasms.  Go to the end of the clip (0:50).  See how it just seems like a startle? Most of the time he doesn't cry like this when he has a seizure.

Here is a better video I found on YouTube of infantile spasms:

I met with Dr. Mitra on Carly's birthday.  Mason threw up in her office as she was examining him, sigh. He had about 10 spasms while she was examining him which is good because she got to see them not just hear about them. Our appointment was supposed to be 60 minutes long but after about 20 minutes she said that Mason is having infantile spasms and he needed to get admitted.  That hit me like a ton of bricks. I felt (still feel) guilty that I hadn't trusted my mom instinct more when I first started noticing them. There's always the hope that you're worrying too much about something and everything is just fine with your child.  She told me that I could go home and pack but then I needed to make my way over to Cleveland Clinic Children's as soon as possible.  I cried the whole way home. I honestly felt bitter that my little perfect baby has to suffer so much.  Casey left work and picked up Carly from school early so I could see her open her presents before I took Mason in to the hospital.  I felt so sad that all of this was happening on Carly's birthday, but thankfully Carly didn't seem one bit annoyed.

When I got to the hospital my sweet friend Jessica was waiting at admitting for me.  She didn't want me to be alone.  She is awesome. We hung out in the room and different doctors came and talked to me and examined Mason. They said they needed to hook him up to an EEG to see exactly what his brain is doing.  The EEG techs didn't come to hook Mason up to one until 2 AM! Everything at the hospital takes at least 3 hours longer than you expect :) The next morning we met with the attending neurologist and epilepsy specialist.  Both of them confirmed the worst.  Overnight Mason had around 50 seizures.  These seizures were coming from different parts of the brain which is even worse.  They said they wanted to start medication that day, and expedite genetic testing.  The geneticist came that afternoon and started going over all our history and our family history and drew out our pedigree chart.  Genetics is fascinating. They drew Mason's blood to send off for first round of testing. We'll get results in a few weeks. The hope is that the genetic testing will give us the information we need to know why Mason is having seizures (and his other symptoms).  Seizures are an indicator of an underlying issue, and we have yet to pinpoint that underlying issue.  The neurologists think all of this could be stemming from his traumatic birth and lack of oxygen right after birth.  If the genetic testing comes back inconclusive that could be the answer. We also found out that the Prader-Willi test came back negative which is a huge relief.

Hooked up to the EEG.  They glued the leads on his head.  It took about 2 hours for me to get all the glue out after they took them off.

Hanging out with the EKG on.  We got to stay on the very cool 5th floor Epilepsy Monitoring Ward at Cleveland Clinic Children's. Most kids are hooked up to an EEG, EKG, and Pulse Ox on this floor. They have cameras in the rooms (kind of freaky) and everything is wired so the kids can be constantly monitored but be able to move around and play (kind of).  

                                       

As for medications Mason started on two to treat seizures.  For the next month Mason has to get twice daily injections of ACTH (a steroid) that Casey and I will give him.  He also got started on Topamax which is a long term medication for seizures. Since starting his medications he has been really drowsy but instead of having hundreds of seizures a day he has had less than 20.

Mason also had spinal fluid taken today that will be tested along with the blood work for his genetics testing.  It looks like we're in a wait a few weeks and see holding pattern right now.  It's great to see his spasms reducing, and nice to have a direction in trying to understand why he's having seizures.  So we'll hold tight while the experts do their testing.

Thank you everyone for all your support and love.  It has kept us going.  We so appreciate all your calls, texts, facebook messages, prayers, and smiles!!

Being realistic and getting a G-tube

Initially we thought Mason would only have the NG tube for a few months.  That was the doctors and us being hopeful.  While the NG tube has been such a blessing in helping Mason to gain weight it has also kept him from making progress in eating orally, and he chokes and coughs when he does eat which shows he still is aspirating. Like I said in my previous post, it makes him cough and gag ALL THE TIME.  If he gags he'll throw up about 75% of the time and his tube comes up whenever he throws up. When I say throw up I don't mean a baby spitting up.  I mean Mason throwing up multiple times most if not all of his recent feed. The NG tube keeps the sphincter from the esophagus to the stomach open which causes him to gag more and throw up more than a normal child.  It is so stressful to put that tube back in.  Mason cries actual tears the whole time.  Sometimes it takes me 3 or more tries to put it in which I'm sure hurts his nose and throat.  It is one of the WORST things I have had to do in my life. One day last week he threw up 5 times which means  I had to put his tube back in 5 times that day and it was horrible. In the past few weeks his vomiting has gotten more consistent.  He has thrown up at church a few times and whenever anyone comes over to our house he throws up. Just plan on seeing Mason throw up if you come to our house :) We had the missionaries over for dinner this week and as we were eating he started gagging and throwing up.  Poor elders. It didn't really phase Casey, me, and the kids but elders looked horrified and probably didn't want to eat anymore but they still did. A few days ago he threw up at the surgeon's office in the waiting room. When the nurse called his name she saw that his tube was out and looked freaked out.  I told her I just needed some surgilube and then I could put it back in.  She looked so relieved that I wasn't going to ask  her to do it! Thankfully I have gotten used to the vomiting and the tube coming out and it's just a part of life lately, but the distress that Mason seems to be in when I have to put the tube back in hasn't gotten better or easier. He seems to know what's coming and goes into full out distress mode when I touch his nose with the tip of the tube.  It is so sad.  I know people has to do harder things than this for the health of their children but for me this has been my hardest! Thanks for listening to me rant.

About a month ago I started thinking about a G-tube for Mason.  His therapy hadn't been progressing very well and some of his therapists mentioned his NG tube could be a part of the reason why. It also became more evident that he would have to be tube fed more long term.  That was a hard pill to swallow, but I at least had that at the back of my mind when he got the NG tube.  I talked to Dr. Postma about it at Mason's well check up and called and talked to Mason's GI about it as well.  Both of them agreed that a G-tube would be the best decision for Mason.  The GI sent in a referral to a pediatric surgeon and a few days later we met with one (Dr. Seifarth-watch this video about him: http://on.aol.com/video/most-beautiful-doctors-in-america-2013--dr--frederico-seifarth-517633517, haha). Dr. Seifarth was awesome and spent a lot of time talking to us and answering questions. He said in his opinion Mason would be a perfect candidate for a G-tube, but we (mostly Casey) were hesitant about the surgery aspect of it. He reassured us that it's a very simple surgery that only takes about 20 minutes and we'd only have to stay overnight at the hospital.  He did discuss the risks with us as well.  He said it's surgery and Mason will have to get anesthesia. Mason will also have a stoma (hole) cut into his stomach.  He'll take 4-6 weeks to recover and his stoma to heal. During that time he'll probably be irritable and in quite a bit of pain.

The G-tube is amazing though. The one that Mason will be getting is called a button.  The specific one he's getting is this one, a AMT Mini One. The round part (the balloon) sits inside the stomach.
                                                                   

 From AMTinnovation.com

  It's very low profile and made out of silicone. It is kept in by a balloon full of water.  When it's time to feed Mason I just hook up the tube (that I hook up to his NG tube now) to his button.  The tube locks into the button. Mason can play on his tummy with it, he can swim, I can still bathe him normally etc.  Mason will get a different button about every 3 months as he grows which Dr. Seifarth will put in. When his doctors decide that he doesn't need it we just take it out by deflating the balloon and the stoma will heal up on it's own.

Mason's surgery is next Wednesday and we'll be at the hospital until Thursday unless Mason doesn't handle his feeds well then we'll have to stay longer. Please pray for our sweet little boy. We feel your prayers. I have been amazed that I have been able to "handle" all of these unknowns for the past 4 months.  I know that I have been able to handle them because of everyone's prayers. My awesome friend Ashton has a son with a G-tube and she has been so helpful with giving me info and support.  Ashton shared this poem with me that I love:

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.