Way behind...watch out its a long one!

I will try my best to get you guys all caught up. I have been really bad about updating all of this so I will do my best. They last time I updated  was when Seth was in the hospital with RSV so I am going to do my best to get you guys caught up. (side note: Right after the hospital stay in Feb for RSV he qualified with the state for nursing. So he gets 32 hours a week of nursing which has been amazing. It took us a while to find a nurse but we found her and she is amazing.)

April 2013: We had an appointment with his neurologist April 11th and we started two new medicines (ONFI and Neurontin) Onfi is a new medicine which is suppose to be amazing for those that have lennox gastout and the Neurontin we are trying because of the constant head banging.  

  • April 24 he went to bed that night completely dry and then remained dry until 3:30 the next day (25th) when we put him in the bathtub to try and get him to go to the bathroom. 
  • April 26th was the same thing as the 25th. So we got him in to see his urologist. They told us it was called neurological urinary retention and that this happens sometimes with kids that have neurological issues. But just to be safe because he has had so many kidney issues in the past they did an ultrasound to check his kidneys and bladder. Everything came back no different than his last ultrasounds. So they showed me how to give him a catheter if he hasn't gone to the bathroom for more than 12 hours. 

May 2013: 

  • May 2nd I was thinking more about his urine retention and I felt that he should randomly at almost 4 not be able to go to the bathroom. So I decided to email his neurologist and see what she thinks about it. I got an email right back and she said that ONFI can actually cause urine retention in some kids. She wanted me to keep watching him for a few more days and see if it continues.
  • May 13th Dr. Jarrar called and we have decided to come off the ONFI because of the urine retention and start him on TOPAMAX. We have tried this drug when seth was really little and it came in a capsule and you had to sprinkle it on his food and feed it to him. He was not a good eater and couldn't figure out how to swallow it so after a while of trying it we had to come off it. So Dr. Jarrar wanted to give that medicine another shot since he now has a gtube. 
  • The rest of May we were coming off the ONFI and raising his Topamax and in the meantime he was still having a lot of seizures. School was calling me to come get him cause he was so cranky and out of it after he had them.  
  • May 30th was his last day of preschool and he actually had a really good day. Thank goodness! Here is a picture of Seth getting his award from his favorite teacher Mrs. Kasey. 

June 2013:  The beginning of June was rough we had a few days with lots of seizures and still the medicine was not helping.

  • June 5th he had a seizure during speech therapy that lasted 5 min and we had to give him his emergency medicine to help him come out of it. We emailed our neurologist and she wants us to change his night time dose of Keppra so we did that.
  • June 3rd we had an appointment with Dr. Adelson a neurosurgeon to talk about getting Seth a VNS (Vegus Nerve Stimulator) the surgery for the VNS was scheduled for July 25th
  • June 12th we had a really rough day he had 5 seizures within an hour. 8:40am-8:50am-9:00am-9:20am-9:35am. I emailed his neurologist and told her what was going on. She emailed right away and told us to increase both am and pm dose of Topamax to 100mg. (FROM THIS MOMENT ON WE HAVE NOT SEEN A GRAND MAL SEIZURE) 
  • June 17th started what we call nights from HELL. Seth was sleeping less and less and we had no idea what was going on. It started out with Seth waking up at 1:30 and then going back to bed to the next night waking up at 10:30-1:30-4:30 and this continued and Mike and I were just getting less and less sleep.  While Seth was not sleeping he would hit his head and face over and over again until he would cry and then he would do it again because he was so upset. I emailed Dr. Jarrar to let her know about his sleeping and head banging but the issue was that she was on vacation in Jordan. So the only way to communicate with her was through email and we would just hope the other was up.
  • June 22nd SETH TURNED 4!!! I can not believe he is already 4 years old, what a special little boy he is and he is such a goofball. 

  • July 24th After his birthday the head banging continued and it just got worse and worse. Sleeping at night just wasn't happening. He went to bed at 7pm was up at 1:30am and never went back to sleep. When I finally got him up for the morning he had bruising on his face from hitting himself. We decided to order elbow braces so that he could not hit himself at night. We had no idea what else to do. We were so excited that the seizures were gone but the lack of sleep was making us crazy. Mike and I actually said we would rather a seizure and more sleep and yet we knew we did not want the seizures. 
  •  I emailed Dr. Jarrar the sleeping was getting so bad that he would just hit himself while he can't sleep. She did not want to change too many meds while she was out of the country so she just had us increase his neurontin and we were scheduled to see her the day she got back into her office which was JULY 10TH This helped for the night of the 25th but on the 26th he still woke up looking absolutley horrible. I felt so bad for him.  Up until our appointment with Dr. Jarrar he still didn't sleep but we did get the elbow braces in the mail on the 27th and he wore those every night until we saw her July 10th so that he would not keep hurting himself. Here is his face at its worst: 


July 2013: 

  •  July 8th he started summer school and he absolutely LOVED it and had a great time. He had no problems and he lasted all day. We were so happy to hear that and we believe that he was having such a hard time during school was because of the seizures. 
  •  July 10th we finally got into Dr. Jarrar and the first thing she asked was how the seizures were. We were so happy to say that he is seizure free but he was not sleeping. The medicine Topamax does cause insomnia which now makes perfect sense. As soon as he started that medicine he quit sleeping. I felt much better knowing that the medicine was causing it and that it wasn't something that we were going to have to live with forever. So Dr. Jarrar decided to give him a sleep medicine called Amitriptyline which should help him stay asleep. Dr. Jarrar mentioned that this might still be the honeymoon stage from the topamax and that the seizures might creep back in we are just not sure when. We have decided to stay on the diet for a few more months to see if he remains seizure free. The next question we had for her was, since he is now seizure free do we continue with the VNS Surgery? She said no. Lets see how long he goes without seizures and if they come back we can get back on the schedule for the VNS surgery. So that is exactly what we did.
  • During all of this he was also fighting a gtube infection and was started on augmentin for antibiotic. But the infection came back positive for pseudomonas and he needed another antibiotic to treat it. This continued to go on until July 29th when I took him into Dr. Leavitt and he said that Seth needed IV antibiotics to treat it. They called into PCH and got a bed ready for him and we stayed from July 29th-August 1st. We left on a new oral antibiotic and to follow up with our gtube surgeon in a few weeks.


  • August 14th He had his first day of school. He is now in the 4's class at Foundation For Blind Children and his teacher is Mrs. Jean.  I almost forgot to take some pictures of his first day so he was not the happiest at the moment cause he was tired but at least I got a few.

This gets everyone completely caught up until our Palm Springs trip two weeks ago. I am pleased to update that Seth is still seizure free. The next post I will get you guys completely caught up. Until next time!!!