Very long-chain acyl-CoA dehydrogenase (VLCAD) deficiency

One of the medical issues I was made aware of just before I lost insurance was VLCAD. It showed up in some of the blood work that the genetics doc ordered. It is when the body cannot convert fat - in my case very long-chain) into energy especially during times of fasting. Crisis's can occur during such times as illness, fasting and exercise. They can be as mild a being slightly tired to having to be admitted to the hospital. According to estimates 1 in 40,000 to 120,000 people are affected. It is attributed to a genetic mutation in the ACADVL gene. VLCAD

I am having to research web pages and get help from others but I am trying to ferret out what diet will work the best for me. It is hard enough to try to ensure my children have the right foods and often enough let alone make my own menu - at least they do not have any major food allergies that we know of at this time. I am exploring FODS support group to find some recipes and food suggestions. http://www.fodsupport.org/
Currently I try to add in Medium Chain oils - coconut and I am finding that I need to incorporate more carbs into my diet. 

So each day is a new adventure and a new attempt at feeling better. I know that there is no cure but I do know there are options and that as long as I have breath in me I will at least try to stay as healthy as my conditions will allow and just deal with the things in my control and just enjoy the life I have. 


Each day is a new day to spend with my family and friends and that is all I can ask for.
 

Sorry it has been a while...

Well I have been down and our for a little while becasue of pneumonia. This is the first time I have had it and this is the first time (this last year or so) that I have had to deal with no insurance so you get apprehensive about when to go seek treatment and where. I started off with a bad cough and in less than 5 days I was in the ER with pneumonia. I had not been able to get the shot prior to all this and I am paying for it hard. It tool me almost 2 months to get to feeling "normal" but I am still having issues. The oxygen that my genetics doc suggested has had to be almost a daily and nightly thing - I was previously using it occasionally at night.

Now the great news is that I found a respiratory place that is willing to work with me. They serviced the donated concentrator and filled the 4 portable tanks. For under $100 but if I keep needing the tanks like I have I will be shelling out $400 a month for the portables if I try to stay active - i.e. take the kids to their appointments, get groceries, take my hubby to and from work... you know the daily things. I am just going to have to sit down a consolidate what I can so that I limit how much O2 I use out of the house. I was also able t qualify for a free mammogram at the health department and they were able to work something out for my shots - flu, pneumonia and DTap. Normally it would have been 25, 14 and 70 but they had a few programs for low income medically needy and I got all three for 28!

I did have a potassium drop incident after I thought I was through the pneumonia stuff that sent me to the ER. It is so frustrating that without insurance my treatment at the ER has dropped. They will refuse to call my specialist and will bot read my medical letters that indicate the proper way to hydrate and treat me. I can only complain and hope they do not screw me up any worse then I how I came in.

The kids have been having a few issues and followups: 17yr old - sleep study = obstructive sleep apnea. Investigating any reflux and a CT of his sinuses.  9yr old (most involved but still mild mito) - sleep study = restrictive airway = checking for reflux and upper GI issues (has been having dismotility issues) and will be removing tonsils and adenoids. 5 yr old - she has been having possible allergy issues (night time cough), some sleep issues that we are following up with a sleep study and has also started to have swallowing issues. Going to check about a GI refer. 2 yr old - reflux and sleep issues so he is waiting for a GI refer and sleep study.