When managing this diet it seems to take up all of my time, thought and effort. All I do is think about it, dream about it, make it, feed it and clean it up. I spend a lot of my time in the kitchen trying new recipes because everything he eats is homemade oh and try to make sure he gets around 45oz of water so he does not get dehydrated because that is very easy to do on this diet. A week ago it seemed like his urine output was not good at all. I took him to get his labs done to check on everything and he is doing good which was a relief to hear. I also make sure I check his ketones several times a week.

We are in our 4th week of this diet and it has been very difficult to manage, you can not go anywhere do anything with out making sure his meals are planned and you bring them with you every time you go on an outing. I have been really stressed out in making sure he gets everything he needs and he reaches full ketosis. And the backlash of what other people say.

The biggest challenge with a meal is always trying to figure out how to incorporate fat. Counting fat and carbs for every meal. Before starting this diet he was doing a lot better at eating by mouth but lately as I have been trying new recipes some of them he is not liking so I have to give him a g-tube feeding the new formula is called Keto-cal which has more fat and fewer calories, which I have been struggling with. I am in constant contact with the nutritionist in California to make sure he is getting the calories he needs to gain weight. I sent 3 days of Logan's food diary to make sure he is getting enough calories, I hope to here back from her today. He did have a check up with his pediatrician last week and he has lost 2 lbs.

Several people in the community that I deal with think that I am not doing the right thing for Logan, by him being on this diet they tell me that with Logan being on a high fat low carb diet that he will gain weight. Well that's not true at all. And I have also been told that he is not getting enough nutrients like fruits and other vegetables. Yes he is very restricted on this diet. He does take vitamin supplements. I have been doing a ton of research and a lot of people I deal with don't believe in what I am doing that is fine. You can voice your option all you want, but I know I am doing what is right for my son and I see the benefits of this diet and how it effects him everyday. I know that so far he is doing AMAZING!! He still has some behavior issues but is doing so much better, he has had no seizures and his stuttering has completely stopped. So I say to those people get your facts straight, research and read about the Ketogenic Diet and learn the facts before you start judging other people.

Keto Kid

It's been one week since Logan started his Ketogenic diet and he is doing good. He is already in moderate ketosis. I got some keto stripes and I check his urine a few times a week. His nutritionist in California has been very supportive we email each other a lot. The first 4 days I noticed a change in Logan since being on this diet he has stopped stuttering completely! His therapists have also noticed. It makes me feel good knowing I did the right thing by taking him to California and finding an amazing Doctor. Unfortunately Logan's secondary insurance won't cover the costs of certain things because it is out of state. 

The transition to a low-carb diet has been difficult he is only allowed 10 grams of carbs a day. It's been exceptionally hard for me to try and find recipes that he likes and will eat. The first few days was the hardest. I had to get rid of 90% of the food in the house. It made me sick. I had a good stock pile going to. But if Logan is doing this then so are we.
The way I cook has completely changed.  We are eating things we have never eaten before. It's a good thing, we are eating a lot healthier. It has been an adjustment for the girl's. I keep snacks for school in the pantry with a child lock on it and the bread is put away so Logan does not see it. I add butter and heavy cream every chance I get to his meals. The only bad thing about this diet is it's so expensive to eat very low carb. I have to shop at Sprouts and Whole Foods.
But I do have to say the meals I have been cooking taste really good! Everyone loves it! I just need to find more side items to go with the main dish. Today I made a big batch of home made keto waffles, Logan loved them! Since he can't have syrup I add a lot of butter and he ate two of them for lunch today, I froze the rest. Logan loves steamed broccoli which is good because it's one of the vegetables he can eat. He is starting to eat cottage cheese and I found these Parmesan crisps at Costco that have zero carbs, he's not too fond of them but I bought some hummus so he can dip it. I ordered some books at the library I am hoping that will help me.

We are praying that this diet will continue to help Logan and reduce his seizures.

August 1st

Logan saw his Neurologist today. I told Dr Maller that I did some research online and found these 2 seizure meds and said maybe one of them will work. I just gave her my opinion. So she picks one and it is Onfi, it has a ton of side effects all being bad, but every child is different. I am no doctor, I am just a parent concerned about my child. I just don't want him drugged up all the time. I felt like she gave me what I wanted and didn't really put her two sense in. I felt like she is tired of dealing with me.
She told us to get Logan's blood work checked for his Lamictal levels and ammonia levels to check his kidney function and a CBC panel. We got that done today and should get the results by the end of this week. He will start his first dose of Onfi Friday night of 10mg and work his way up to 20mg. She wants to keep him on the low dose of depakene and Carnitor and slowly take him off of clonazepam because Onfi and clonazepam are both benzodiazepines which will basically knock him out and really drug him up. So we will see how things go next week and how he tolerates the new drug.

I did get a call back this morning from Children's Hospital in Los Angeles. I was so excited to hear from them! I have to fax them some paperwork regarding Logan's medical history and then I will get an appointment.

Thank you for all of your prayers. They mean so much to me.

This is what Logan does everyday, takes a nap. Over the past 6 months Logan has been having more seizures and more trips to the hospital. During his last trip to the Hospital they did blood work to check his valproic acid levels and they told me they are low and we need to follow up with the doctor. We saw Dr. Maller 3 weeks ago and she said we are going to increase his Depakene, I said he is already on a high dose and all he does is sleep and have behavior problems. There has to be a drug that will help him and not make him sleep all day?!?  Then she said joking "you can't have both" This drug is not working anymore and I don't want him to be a zombie. She said let's try Zonegran the major side effect is kidney stones and decrease in appetite so make sure you give him lots of water.

So I began titrating him down on his Depakene and Carnitor. She said we will check his blood in 3 months because we might have to increase his Lamictal.
Depakene and Lamictal taken together can cause a reaction so we had to lower his dose of  Lamictal.

Well we never got to that point of checking his blood because the first day he started taking Zonegran he was taking naps everyday again. He started out taking one tab at night then 2 weeks later he got to his full dose of 2 tabs at night (200 mg) along with Lamictal 150 mg at night and 100 mg in the morning, Depakene is 200 mg 3 times a day and Carnitor is 300 mg 3 times a day.
I called the office Thursday and said all Logan wants to do is sleep, I don't want him feeling tired and having no energy all day. (this was also one of the side effects) There has to be something else he can take. I also told her that when I increased his dose to 2 tabs at night I noticed the next day he started having problems with his speech, Stuttering, having a hard time thinking of the next word to say. You could see the frustration in his eyes. It just broke my heart. He has had this happen before so not sure if it was the medication or just a coincidence.

The assistant calls me back on Friday and tells me, Dr. Maller said to wean him off of the Zonegran, take one pill at night for one week then stop it and we will see him on his scheduled appointment on September 15th. I said are you serious??? Dr. Maller is ok with him being on a very low dose of meds?!? You need to see him now I am not going to be spending the next month in a half in and out of hospitals because Logan is having seizures. You need to fit him in. I was pissed. I am at the point where I am just fed up.  So because I pushed the issue we will see her on Monday.

Logan has Left Temporal Lobe, Complex Partial, Absence and Tonic-Clonic Seizures. As he gets older his seizures are changing. Sometimes he has Convulsive Status Epilepticus (Seizure lasting longer than 30 min.)

I got on line and started googling. I found that Children's Hospital in Los Angeles is rated top 10 in Pediatric Neurology so I found a Doctor and left a message on Friday.

I just want him to have a little bit of Normalcy.....

Uncontrollable Meltdowns

I have been having a very time with Logan this past week. Logan has mild Autism, but it seems like as he gets older it worse. He just recently started having major meltdowns and I had no idea why. Its mostly at night when it is time for bed. He will scream at the top of his lungs cover his ears and hit me call me stupid tell me to shut up and hit the wall, really hit everything around him and this goes on for hours. I have tried everything that I can think of  and it is getting to the point of my sanity. I have been looking online and doing a lot of research and found another blog called my My Aspergers Child. I have found so much information by reading and seeing everyone's comments. Until now I had no idea about the laughing fits. He has them a few times a month he will just start laughing for no reason at all, we will be in the car driving and he will just start laughing. Logan has alot of medical problems he has Heart Disease and has had several open heart surgery's, he has epilepsy and his seizures were getting worse he would turn blue and barley breathing we have spent days in the hospital because of it. He is now on Depakene which is finally helping with the seizures but one of the side effects is liver damage and because of that he takes Carnitor to keep his ammonia levels down. We are always getting his blood work done.

He has been very unusually tired lately so I called his Neurologist last week and he just had his blood work done on Friday and now we are waiting on the results. Maybe I am seeing these meltdowns now because he has been so tired all of the time. Now the meltdowns are happening during the day. I have been homeschooling him for over a year now because his seizures were getting so bad. I have a call into his Neurologist hoping to get some help because at this point we both need it.
I have never cried so much in my life then I have this past week. Last night the meltdown went on for almost 2 hours, I just could not control him and I started to break down and cry then I was starting to have a panic attack and had a very hard time breathing. I am just so tired of all of the meltdowns it is a constant drain of emotional energy being a caregiver of a special needs child. I love my son so much and would and do everything humanly possible for him, I feel bad for my 14 yr old Daughters to listen to his screaming meltdowns and we all pray he does not have a seizure when he is done.

Lately it has been a fight to do schoolwork because he is so tired and fights me. As I type this he has been sleeping for more than 3 hours. I guess I just needed to vent here.

Wordless Wednesday

What a day this has been! Crazy Crazy Crazy. These past few months have been so crazy busy. I was hoping when school started that it would slow down but it has not. It seems like all I do is go to Therapy and doctors appointments. This morning Logan and I were in a car accident someone rear ended me and I have damage to my car. Thankfully Logan and I are fine. My back was a little sore but I think because I was shook up.

After that I headed to Logans Therapy, then off to pick up the girls from school. From there Elizabeth had a doctors appointment with her Nephrologist. Found out she still has a single kidney stone on her left side and developed two more on her right side. It has been a year since she has seen this doctor, he took her off her meds because her kidney stones on her right side were gone and only had one left on her left side. So now we start back at square one he put her back on her medication and we go back in 6 months for another renal ultrasound.

Hopefully over the next few weeks it will start to calm down. Logan had blood work done yesterday and I am waiting on the test results I am hoping his ammonia levels come back a little bit lower.

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.

What a great weekend!

We had a great weekend! Saturday morning Logan had Occupational Therapy.
Then we headed to Henderson to the yogurt festival. Logan had such a great time playing on the jump house and riding a few rides. It was so nice to see him smile and enjoy himself.

I came home dropped off Logan and I went over a friend's house for some me time and did some stamping and card making for 3 hours, it was so nice.
Richard took the kids out for a few errands and dinner 😆

Sunday Richard spoiled me by making me breakfast in bed with some beautiful flowers. And the kids made me a beautiful card it was so sweet.
My parent's came over for a barbecue and Richard cooked everyone dinner. I am such a lucky girl to have a wonderful husband who takes great care of me and a beautiful family. I am truly blessed.

I was hoping to post that Logan has been seizure free for 7 days but that is not the case. He had an absent seizure wednesday night before going to bed. His neurologist has changed the dose of his medicines again. It is so heartbreaking to watch him go through all of this and there's nothing I can do for him. For some reason he woke up this morning and threw up just once but no fever.

This morning he had physical therapy and speech and he was so tired. Then we had to go to labcorp to get his blood drawn. Logan has been seeing an immunologist because he has been sick alot. They gave him an pneumonia shot 3 weeks ago we went in today to get the bloodwork done we go back to the doctor next week and see if the shot helped boost his immune system. Logan will also have a allergy skin test to see if he is allergic to anything.  

Here is hoping we (Logan) has a good weekend and stays healthy.

This is what Logan's mornings have been like for the past two weeks. An hour after he has his g-tube feeding he falls asleep for about two hours. We don't really get any school work accomplished because he is so drugged up. After his nap he does feel alot better. The Doctor has been changing the dose of his seizure meds constantly. 
I spoke with the nurse today and they changed his dose again so now he is on 7.5ml twice a day of Trileptol and 150mg of Lamictal in the a.m. and 200mg at night. We will see how it goes in the morning. We will have his blood taken in two weeks to make sure his levels are good.

We had a great weekend! Saturday we went to my Brother's girlfriend's and her daughter turned 10. It was a fun birthday party. Logan did so good, it was so nice to see him having a great time with his sisters laughing and playing.

And Sunday we went to see Avengers age of Ultron. My parents watched logan. The movie was sooo good, I can't wait for the next one in 2018.

It never ends.....

Logan had another seizure this morning...

I had to take the girls to the orthodontist this morning then I dropped them off at school at 9am. We then head on over to therapy. I get him out of the car and he is pail, clammy and can barely walk. I walk inside tell his therapist what is going on and then we leave.
Since my mom lives close by, I drive to her house so he can sleep, we are almost there and he throws up in the car. When we get to my mom's he falls asleep while I am trying to change his clothes. And he sleeps for 2 hrs.  When logan wakes up he is fine and acting like himself again.

I called Dr. Maller and told the nurse what was going on. She said they are going to have a at home 24 hr EEG done and to increase his meds to 10 ml twice a day. I told the nurse that I was reading something about sodium levels being low when taking high doeses of lamictal and it also causes more seizures. He has had 3 this week. I am waiting on a call back to see if they want to order lab work.
I really think they need to change his seizure meds but I don't think she will do anything until after his EEG is done.

I am beyond frustrated and mentally exhausted. I am hoping to have answers soon.
 

Today was Logan's Doctor's appointment with his Neurologist. I was telling her about all of the seizures he has been having and how he has been sleeping so much since he came home from the hospital last Tuesday.
The doctor on call at the hospital did increase his seizure meds but by only 50mg in the morning, so I was not sure why he was sleeping so much.
Dr.Maller told me it's because he had really bad, long seizures and it will take him a little while to recover. Day by day he is feeling better and acting like himself again. I asked her if she could do an at home 24hr EEG, She said let's wait and see what happens and if he has more seizures then she will order one. His last at home EEG was November of last year.

She did increase his Trileptal from 7.5 to 9.0ml twice a day and his Lamictal to 150mg twice a day. We go back in 3 months for a check up.
Amazingly when he had blood work done to check his levels they are still a little low meaning she could have increased his meds alot more. But she said she wants to do it slowly.  Because the last increase was on April 14th.
I asked her why??? Why all of a sudden he is having more seizures and they're getting worse and they're changing??
She said sometimes that happens, sometimes they increase as the child gets older or they get better and in Logan's case they are getting worse.

Dr. Maller and the hospital agreed that he had some kind of infection they just don't know what kind that caused the seizures to happen.  He has had many infections in the past and no seizures. I wish there was a crystal ball I could look into and find out why?

More Seizures

This past weekend has been so rough. After going to the E.R. on Friday the 17th. Logan woke up Saturday the 18th very lethargic so I called his doctor and he said bring him into the E.R. and they will check him out and give him fluids. 

We were there for 6 hours they gave him an IV with fluids and a suppository with milk and molasses and did xrays. He was so constipated it really helped him. 

Right before we were getting ready to leave he had a slight temp of 99.5. After that we were discharged and left the hospital at 5pm as soon as we pull in the driveway he starts to have another seizure and turns blue. His seizure lasted 25 minutes. I gave him Diastate rectaly and called 911.

They took us to Summerlin Hospital and while in the ambulance his temperature jumped to 106.5, when we got to the ER they gave him Tylenol rectaly which brought his fever down to 105.5 then gave him more tylenol and ibuprofen through his G tube. Slowly his temperature started to come down, they gave him an IV with fluids, drew his blood and did more xrays. I told them I was not leaving this hospital and that they are going to admit him. 

The ER doctor called Logan's doctors and they all agreed that logan be transferred to Sunrise Hospital because of his heart. So we get to Sunrise around 12am and they admit him there. Logan was there for 2 days. They gave him a ton of IV fluids and monitored  him. He has no seizures and no fever so they release us on Monday afternoon. Also while in the hospital he develops a respiratory infection.  

I am happy we are home and Logan is doing great. He has been so tired and just worn out. He has been taking naps every day this week. His poor little body has been through so much. They did increase his seizure medicine so I am really hoping he does not have another seizure for awhile.

Friday we went to see his gastrologist, I told him about the constipation and that the ER doctor found 2-3 lbs of poop in him and he said just give him 5 capfulls of miralax with water and that will help. While waiting in the room for the doctor to come in logan fell asleep. He is just so exhausted.

Thank you so much for all of the prayers and love you have given our family.