Logan's Ammonia levels are way to high because of the depakote. Even after raising the Carnitor medication. So because of the Ammonia levels being to high it makes him very tired and he could have more seizures. But his liver function is good so I am so thankful for that. So Doctor increased his Carnitor meds even higher. We go back to get more blood work done next week.
I asked about other alternatives like a VNS implant but because of his heart Logan can not have it. We also asked about medical marijuana and because of his heart he cannot have it. And there has been no studies showing what the long term effect is on children. Logan has such a complicated heart it makes everything so hard . So we just take one day at a time. Logan's body is very sensitive to the depakote that's why his ammonia levels are so high. Not sure what our next step is or where we go from here we just have to wait and take one day at a time. The depakote is working because he has not had a seizure since July 3rd. It's just so very frustrating. Because the medicine is working but then on the other hand his ammonia levels are getting too high. 😢

Wordless Wednesday

Logan had his check up with his GI doctor today and everything is going good. He wants to keep him on the same formula at the same dose. He weighs 69lbs and growing fast. Could not get a height on him because he would not cooperate.

I received a call from his neurologist today for his blood results and it shows that his Ammonia levels are to high, which is why he has been very tired, and can also cause liver problems. To lower the levels they have to put him on Carnitor  100mg 3ml 3 times a day. The doctor has also lowered his dose of Lamictal to 100mg 1 tab in the morning and 1 1/2 tabs at night and she wants to keep Logan on the same dose of Depakote 250mg/5ml 2.5ml 3 times a day.
It's been a long time since he has been on meds 3 times a day.
Overall he is doing really good! Logan is 40 days seizure free! This is the longest he has been seizure free this year. I am hoping the new meds continue to work and he will not have any more seizures. Or at least really bad ones where he turns blue.
Every time his Dr adjusts his meds it always makes me nervous and scared. I don't sleep that good at night because I am always worrying about him :(  And always checking in on him and listening to him breathe through the monitor.
And Logan does not sleep that well at night always tossing and turning and waking up during the night.
All I can do is say my nightly prayers and thank God for him every night.

I can't believe it's been almost three months since my last post. Time has really flown by and so much has gone on. The summer is almost over and time for the kiddos to head back to school.
We celebrated Logan's 8th Birthday on Saturday with family and friends. So many people were there to make it special for him. It was a TMNT Party and I had a blast making everything for his party, I am not crafty so pinterest helps me out alot..Lol

The girls turned 14 in June and getting ready to start High School!! I can't believe how fast they have grown and they are so beautiful 😊

I will continue to homeschool Logan but by myself. K-12 commen core 1st grade will be to hard for him. He should be going into 3rd grade but is Developmentally delayed.

He has had alot more seizures these past three months and has been hospitalized several times. They have also changed his medications several times so we are hoping the new meds help him. Time will tell. I will post pics of his party this week.

What a week this has been. Tuesday we went in to see his neurologist so they could put the electrodes on his head to do a 24 hour at home EEG. Wednesday we went back into the office to have everything taken off and found out our followup appointment is not until August 4th. Because Dr. Maller is out of town for 3 weeks and that puts her behind. And it's ridiculous that no one else in the office could speak with me regarding Logan's test results.  I asked them to have the test results mailed to me and I should have them in 2 weeks.
After that appointment we headed on over to see his cardiologist.  It was a follow up visit from his hospital stay. His heart is looking good, his heart valve has a mild leak, so thankful it has not gotten worse. 

Thursday we went to see Dr. Ahad who is a neurologist to get a second opinion.  She consulted with us for an hour, what took the longest was Logan's medical history which I provided all of his records for her. I was telling her that I am tired of seeing him drugged up and I was honest with her and told her that Thursday morning I did not give him his seizure meds he was so happy and playful that day even his therapist notice the difference. I also said I don't follow up with Dr Maller until August 4th.  Dr. Ahad said I will consult with Dr Maller when she comes back in town and that they will work together to get Logan's seizures under control. Dr. Ahad also mentioned she does not want to take any patients away from Dr. Maller and that they have consulted many times in the past regarding other patients. So for now until we see Dr Maller she is slowly lowering Logan's dose of the Trileptal from 7.5 ml twice a day to 5.0 ml in the morning and 7.5ml at night. Then after one week do 5 ml in the morning and 5 ml at night. Then when Dr Maller comes back she will take him off of it completely and possibly put him on Depakote. And we also talked about having surgery and putting a VNS in but most likely would not be able to because he has heart disease. She said depakote does have strong side effects and the major one is liver damage so he would always have to have blood work done. And because it is a strong drug it would outweigh the Lamictal. I asked her if it causes Liver damage then why take it at all? Her answer is it works and very well.
So we have to take the good with the bad and just get his blood tested all the time. She also recommended that Logan see a geneticist again. The last time he saw one was when he was 11 months old. And since there is only one geneticist in the state of Nevada it is over a year wait. So we are on the waiting list. Logan does have a follow-up with Dr. Ahad on Oct. 1st

Saturday morning Logan woke up tired like any other morning. He had therapy at 9am. When we get to therapy for some reason he wants the stroller in the back of the car to take inside therapy, I said no and he starts throwing a tantrum. Threw himself on the ground and was very upset. I bring him inside therapy and he just lays there crying on the floor rolling around. He has never acted like this before and I don't know why. It was so bad at the end of therapy his therapist had to carry him to my car.
On the way to my moms house he finally calms down and I am looking at him through the rearview mirror and his eyes start to flutter and he is having another seizure. I pull up to my moms house and I call 911 his lips did not turn blue this time but his body was just lifeless.
Since he was not in immediate danger I asked they take him to Sunrise Hospital. So we spent the day at sunrise they gave him an IV with fluids and did a CT scan of his brain, only because while he was in the trampoline at therapy he fell and hit his head on the mat and then before we left he banged his head on the ground twice and after his seizure he would not stop throwing up so they wanted to cover their bases and the CT scan came back fine.
I did get a call from his neurologists office and moved his EEG up to tomorrow. So I am happy with that.
He is back to his old sweet self :-)

Logan has been seeing an immunologist for a few months now. Thanks to the referral of his cardiologist. The doctor ordered a complete blood work up of his immune system. The results showed that his immune system was a little low so we went back into the office and Logan had a pneumonia shot. Three weeks later went back to labcorp to get blood work done. Last week was Logan's appointment with Dr. Wilson at University of Nevada School of Medicine. Let me start by saying he is an amazing doctor and I highly recommend him. The pneumonia shot worked it boosted his immune system!  Now he is less susceptible to getting viruses and the shot will last a very long time.
They also did a functional Cilia biopsy test and everything came back normal. Next was a environmental allergy test on his back, found out he has no allergies.

I was telling Dr. Wilson about Logan and everything that has been going on with him neurologically and that I wanted to get a second opinion and if he knew anybody that could help. He said he knew a neurologist in Henderson and she's a very good doctor she studied at John Hopkins.  Her name is Dr. Ahad and that she is very hard to get into, over a four month wait. I got home and he personally called me to tell me that he made an appointment for Logan for next week I couldn't believe it. I am so excited!!

Logan does already have an appointment with Dr. Maller to go in and have a 24 hour at home EEG on June 3rd.  We went this morning to LabCorp to have blood work done to check his seizure levels. 
His medication still needs to be adjusted and or changed. After he gets his meds in the morning he is so tired and wants to take a nap everyday. And some days after he has his meds and g-tube feeding he gets up and is very unstable and then throws up and is extremely tired and I have no idea why. With this EEG I am hoping to get some answers or at least with seeing this new doctor.