Tuesday, October 11, 2016
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.
Sunday, September 25, 2016
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.
Monday, August 1, 2016
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.
Saturday, July 30, 2016
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.....
Tuesday, October 20, 2015
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.
Wednesday, September 2, 2015
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.
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