Celebrating Halloween on a Low-Fat Diet

Interesting topic, the biggest holiday for candy and our kids are on low-fat diets. Do you take them trick or treating? What candy can they actually have? Should we celebrate at all? All of these questions are still in my mind since this is our first Halloween with LCHAD kids. 



Halloween 2014- Rainbow Dash & Scout the Dragon

I asked other LCHAD moms how they handle Halloween because clearly I am not an expert and most of them said they still celebrate it and go trick or treating just at the end of the night they sort candy. Some throw away ordonate what their kids can't have. Some can have more than others but always in moderation.  Some moms switch out their candy with stuff they can have. 


It's all about the child, how well they understand the disease how you need to handle it. I think I will probably spare the heart ache of getting rid of Alexis' hard earned candy this year and take the fattening stuff out when she's not around. We will see, the conversation is bound to come up and I know she understands too much fat is bad for her and Hunter, I just want to spare her the heart ache for now. 

Halloween 2013- Little Red Riding Hood & The Big Bad Wolfe! 

Minnie Mouse- Halloween 2012

Snow White- Halloween 2011 

Single Serving Chocolate Cupcakes

I am not a cook. I do enjoy cooking.... eh, kinda. & I hate cleaning up afterwards!

With that said, I am officially on a mission. A mission to learn to cook healthy, yet delicious kid-friendly foods. LCHAD'ers are on low-fat diets but not just any low-fat diet they still need calories for energy. So, we need foods with lots of carbs and calories but little fat. It's challenging.

I'll do my best to document this mission along the way and share things I learn with you. If you have any advice or recipes to pass along please share!

The first recipe I have to share with you is from The Comfort of Cooking I just tweaked one ingredient to make it LCHAD friendly. I was looking for a recipe for one or two cupcakes that was LCHAD friendly, something easy enough that I could make and take with us to birthday parties we are invited too so they can partake in cake and we don't have to worry about the ingredients.  The Comfort of Cooking has Nutella frosting to go with this recipe if your interested, I haven't gotten to the point of making icing yet. First things first and her frosting recipe has butter in it so I know its high in fat.

Single Serving Chocolate Cupcakes 

Yields: 2 cupcakes

Fat content and calories depend on exact ingredients you use, mine ended up being less than 1g per cupcake! 

Ingredients:

- 3 tablespoons flour

- 2 tablespoons granulated sugar

- 1 tablespoon unsweetened cocoa powder

- 1/4 teaspoon baking soda

- 1/8 teaspoon salt

- 3 tablespoons skim milk

- 1 tablespoon MCT oil

- 1/2 teaspoon vanilla extract

*For non-LCHAD folks use vegetable or canola oil instead of MCT oil
 

Pre heat over to 350 degrees. Either line your cupcake pan with a paper liner or you can spray with non-stick cooking spray.

Mix together all the ingredients. (I was going for simple so I used a regular bowl and fork to mix everything) Divide evenly and cook for 20-22 minutes.

*I was anxious, I pulled them out of the oven too soon so the center sunk a little, still delicious! 

Meet Luke- Our New LCHAD Friend!

Talking to LCHAD moms of older kids has really helped me in our LCHAD journey, talking to them and hearing their stories assures me that eventually this storm of a journey we are in right now will eventually be calm. Thank you Beth for sharing your story with us.

When Mike & I got married, we knew we wanted several children. I got pregnant with Luke on my 1st try and we were elated. He was due in early October 2005. In late July, however, I started not feeling well. I had frequent bladder infections & lots of swelling in my body. I kept getting dismissed as "you're pregnant and it's summertime". On August 20th, after having been to the doctor 3 times that week, I felt the need to call the doctor again. I was nauseated, had a terrible headache, swollen so badly I hardly recognized my own face, and had not peed in days. Tests at the local hospital revealed I had HELLP syndrome & had to deliver within the next 24 hours. Because he was also breech & I have MS, they did not want to risk an epidural with my elevated blood pressure. I was put under general anesthesia, and had Luke via emergency c-section at 4:44 pm. At 33 weeks, he was 4 lbs 12 oz and was whisked away into the NICU. At 5 days old, we were told that he was flagged for LCHAD on his NBS. By day 6, he was ambulanced to Children's Hospital of Philadelphia to be further evaluated & treated. It was a nightmare! After much genetic counseling regarding Luke & my pregnancy complications, it was determined that another pregnancy would be risky. The first few years were very difficult. He was hospitalized numerous times for with various infections, including ROTA virus at 7 months which almost took his life. Over the years, he's had a g-tube insertion and a port insertion to help keep him strong and metabolically stable during illness. Today he is a very active, bright, spirited, caring, & "normal" 9-year-old boy! While we continue to have hospitalizations & dietary restrictions, he has come a very long way. We feel blessed to have been given this wonderful little spirit!

Specialist Recap

Since we have so much going on and we are sort of at a breaking point in the chaos, I wanted to update with all the specialist we have seen and when we see them again.

Genetics: Dr. Green- Both kids saw her last in September and will see her again in 6 months

Cardiologist: Dr. Baker-Smith- Both kids saw her in September and go back in 12 months

Eye Doctor: not sure her name- Both kids saw her in September and go back in 6 months

Neurologist: Dr. Rao- Hunter saw him in August, then October and goes back in 3 months. Alexis doesn't have to see him.

Pediatrician: Dr. Yim- Both kids go in December, Alexis for her 4 year check up and Hunter's 18 month check up.

Hunter is seen by the Speech Therapist every Monday for the next 6 months and then they will re-evaluate to see how he doing.

Let's hope they stay healthy this winter so we can go an entire month without a doctors appointment. woo hoo!

Meet Lisbeth- Our New LCHAD Friend

I have had the opportunity to meet some really awesome parents & kids that are going through the same struggles as we are. This is Lisbeth, she was born June 3, 2014 and after spending 3 weeks in the hospital when she was 2 months old she got her diagnosis of LCHAD.  Lisbeth also tested positive for LCHAD on her NBS but didn't get those results until after she had her crisis and hospitalization. Her mom blogged the hospital stay, here it is if you want to read it and show some support.  Lisbeth's mom also started a facebook page for LCHAD awareness. Go & Like it!

ER visit- October 2014

We were sent from the neurologist to the ER- read the start of the story here

I wish I could say the ER visit was painless and went smooth but that is definitely NOT the case.  It was horrible.  I thought if any hospital ER would be okay handling it, it would be University of MD but I was so wrong!

When we got downstairs to the pediatric ER, they got us right back. During registration they had bubbles, Hunter loved them. That is where the good stopped. 

I gave them his ER letter and the neurologist called ahead so they should have been prepared to handle us. They stuck Hunter at least 6 times in attempts to get his blood drawn and IV with d10, the stuff that's gonna keep him out of crisis set up. Once they finally got that done he sacked out and slept for a few hours. When they came back they told me his blood work came back normal and we could go home. We were there because he wasnt eating... he still hadn't eaten anything. I was ready to get him home anyway and put this day behind us.  Then they came in and said "Dr. Green said as long as you think he has eaten enough you can go home" ... Well I know he hasn't eaten enough. I told the nurses that! 

Nurse: we don't know what he is supposed to eat?

Me: 27 grams fat and 1200 calories

Nurse: well we don't know if he has eaten enough

Me: He's had 300 calories and about 1.5g fat... 

Seriously, how much more exact can I get?  This conversation took place at least three times. My dilemma was I didn't want to be there... but I also didn't want to make the wrong decision for Hunter and have us end up back in the hospital tomorrow in worse condition. So I cried, I cried for the nurse to get one of his doctors on the phone and let me talk to them. I cried because I didn't know what the right answer was, I needed someone to tell me what to do and no one in that ER could tell me.  So LCHAD binder in tow I went out to the nurses area and cried again asking the doctor to get someone on the phone. Either Hunter's geneticist Dr. Greene, his genetic counselor or even his nutritionist. All of which work out of the University of Maryland. 

Finally, a doctor who had a clue came in. She understood LCHAD (which I think anyone can understand LCHAD if they take the time to listen to what it is) I expressed my concerns if he is supposed to have 27 grams of fat and 1200 calories a day and he has only had 1/3 of a banana and 2 fruit cups what happens when they unhook his IV (which has sugar in it which his body is turning into energy)  and he runs out of energy? How far will what he has eaten really get him today? Will he wake up tomorrow? Is he going to make it home tonight?  The best thing about this doctor is she listened, thought about it and came up with a logical plan.  She told me to go up to the cafeteria and get him food he likes and we will see if he eats it. If he eats and I feel comfortable we can go home, if I don't feel comfortable or if he doesn't eat they will keep him on 23 hour observation. This plan made sense to me so I agreed! We unhooked his IV so if they was keeping him full he would have a chance to get hungry.  I ran upstairs and bought just about everything I thought he might eat.  & it worked! He ate an entire banana, some mac n cheese and a few bites of a chicken tender. 

With that we signed our discharge paper work and ran out of there as fast as we could! 

Neurologist Appointment- October 2014

Hunter is being followed by a neurologist because of his 2 crisis and the risk of developmental delays. We met the neurologist, Dr. Rao at our second hospital stay in June 2014. We saw him in his office for the first time 2 months ago and almost everything checked out except he is a little delayed in speech. Dr. Rao is who referred us to the infants and toddlers program. 

We had another appointment on Tuesday just as a followup to see how everything was progressing. Good news is Hunter's speech is progressing, bad news is he is still delayed. We didn't have much time to actually talk at his appointment because as soon as we got their Dr. Rao noticed he was sick and asked how he was doing, I mentioned he hadn't eaten as much as he normally would by this time and he insisted we went to the ER to get blood work done and for him to be monitored. The concern is what happens to his body when he goes into crisis and the irreversible damage, the goal is to be proactive and prevent and future crisis... hence, why we went to the ER. 

That fiasco needs it's own post.. you can read that (here) 

The neurologist told me to call him in a month or so and give him an update on speech therapy and to schedule an appointment in 3 months for another follow up.  He also told me that going through infants and toddlers isn't my only option for speech therapy so if I don't like the speech therapist or don't think they are helping enough to call him and we will schedule speech therapy through the hospital.  Did I mention I really like Dr. Rao! He gets an A+ rating in my book! 

At least they have each other...

I don't know why this has been so hard for me to write. I've been in denial and was content living there but since I can't stay in denial anymore I just feel lost and my heart breaks when I talk about LCHAD. 

They confirmed Alexis does in fact have the same 2 mutated genes as Hunter, which means Alexis has LCHAD. I am relieved we have answers, I am relieved that Alexis & Hunter will be able to support each other in this journey, I'm sad for Alexis and I am scared. I am scared for what the future holds for my children. I am scared that something will go gravely wrong because people are writing Alexis'  disease off as "not that bad..." it is that bad. Her day-to-day life may be normal but her disease is the same. 

How can Alexis have it? She's never been sick! I'm actually getting annoyed of hearing that. I don't have answers for you, all I know is that if my kids eat enough everyday they will have enough energy everyday to keep going and if not they will end up in the hospital or worse. Alexis has always been a good eater... yes she's been really sick before (once) and didn't end up in crisis. We are lucky. This still does not change the disease. 

My kids will live a normal life but they need to be treated a little bit different. They need to make sure they are eating what they need to eat everyday & it is important that we take extra precautions to make sure they do not get sick and those around us need to take those extra precautions. I hope everyone is listening to me... don't come around us when you are sick and get your flu shots!!! 

Immediately after finding out Hunter had LCHAD my dreams of having a big family were shattered, how could I take care of 2 kids with special health needs. What if they both get sick and are both in the hospital at the same time? How can I split my time between hospital rooms? It wouldn't be just about keeping Hunter healthy and away from sick germs all winter, how could I do it with 2 kids? These were all questions and doubts I had that made me decide having more kids naturally was out of the question.

Well here we are.... 2 kids with LCHAD.