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MTHFR

Methylenetetrahydrofolate reductase or MTHFR: "The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins. Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate. This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds." http://ghr.nlm.nih.gov/gene/MTHFR

The symptoms can vary depending on the mutation: One can be homozygous for C677T or A1298C or heterozygous and even from person to person depending on other biological and genetic issues.
My one son is 11 and exhibits many symptoms that are related to his homozygous C677T and possibly to mitochondrial issues, and a Chromosome 16.13 microdeletion. He has apsergers, bi-lateral hydronephrosis,  autonomic issues, and more.

Some of the common recommendations are:

1. Limit ingestion of folic acid in fortified foods as you cannot process folic acid well.
2. Limit or cease taking supplements or drugs with folic acid in them. Talk with your doctor before stopping.
3. Avoid folic acid blocking drugs such as birth control or Methotrexate.
4. Avoid drugs which increase homocysteine such as Nitrous Oxide (most used in dentistry)
5. Avoid antacids as they block absorption of vitamin B12 and other nutrients
6. Begin understanding which of your symptoms may be related to the C677T MTHFR mutation.
7. Measure homocysteine levels – properly!
8. Inform your family members so they can also test for the MTHFR mutation
9. Find a doctor who is knowledgeable about MTHFR or is willing to learn
10. If you are pregnant, find an OB/GYN or midwife who is knowledgeable about MTHFR.
11. Eliminate Gluten from your diet – especially wheat.
12. Eliminate or reduce Dairy from your diet. If you must have dairy, use Goat milk.
13. Sauna or sweat somehow (epsom salt baths, sports, yoga..) at least once to three times a week.
14. Limit intake of processed foods
15. Increase intake of whole foods and home-prepared meals
16. Eat the Rainbow of colors from fruits and vegetables – daily
17. Castor Oil Packs over your abdomen daily during times of pain, soreness, cramps
18. Vegetable/Fruit Juice Diet with Chia Seeds during times of pain, soreness, cramps
19. Limit intake of high methionine-containing foods if homocysteine elevated
20. Coffee Enemas during times of detoxification or pain
21. Filter chlorine from your drinking water, shower and bath.
22. Drink at least two liters of filtered water daily mixed with vitamin C and electrolytes.
23. Eat smaller, but more frequent meals, throughout the day with some form of protein.
24. Limit protein intake to approximately 0.7 grams protein per kilogram of body weight.
25. Remove mercury amalgams and root canals with a trained biological dentist.
26. Avoid cooking, drinking, storing and heating in any type of plastic container.
27. Use an air purifier in your home and office
28. Eliminate carpets from your home and install low VOC wood or tile flooring.
29. Eat grass-fed beef, free range, hormone free and antibiotic meats and eggs
30. Cook with electric stove and oven and remove gas stove and oven.

General Nutrient Recommendations for C677T MTHFR mutations:

• Methylfolate
• Methylcobalamin
• Betaine in the form of TMG
• NAC
• Glutathione
• Pyridoxal-5-phosphate
• Riboflavin
• Curcumin
• Mixed tocopherals (vitamin E)
• Silymarin (Milk Thistle)
• EPA/DHA
• Phosphatidylcholine
• Nattokinase
• Vitamin C
• Vitamin D3
• Comprehensive multivitamin/multimineral
• Probiotics

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/

My other children and I have different mutations which require similar yet different precautions and nutritional suggestions. 

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.

Mito Families!: The Financial Reality of Mito

Mito Families!: The Financial Reality of Mito: It's pretty safe to say that everyone knows that health care is expensive. The more chronic or serious your condition is the more expensive....

Mito helpers...

My genetics doctor asked me to email her some of the things I have been using to make my life a little more comfortable so she could pass the information on to her other patients - I wanted to share here for others and would love to hear from you about what has worked for you. I will start with what I use and need and what we are looking at getting.
Visually me and two of my children have Scotopic Sensitivity Syndrome or Irlen Syndrome - in short it is when the brain has trouble with the signals the eyes send. One can have 20/20 vision but have vision issues. One may suffer from dyslexia, migraines, ADD/ADHD, brain injury, light sensitivity and more. There is evidence that many people can be helped with the use of special colored overlays and special colored lenses. My 9 year old has been tested and is waiting for his glasses now. Next we will be getting my oldest son tested fr which colors he needs. And I have to get the money up for the lenses and I will be in color as well. I watched my son being tested and it was amazing to see the difference and I was tested for my colors and I was amazed at how much easier it was to read - and I am very proficient and read well at a good speed. I will update once the glasses get in and see how he does - he is having issues with the words "dancing" and depth perception. For further info: http://irlen.com/

Many days I have muscle cramping due to dehydration (which is easy to go into even with the best efforts), potassium issues, energy issues, etc. Sometimes it would be severe and sometimes it would just be enough to case my legs to give out when I walked. I found that "Fitness Gear" has a calf and shine support that has worked wonders for these issues. It is adjustable, it helps retain heat, and gives support. You can find it in store and online at Dick's Sporting Goods. *Note it does have natural rubber and may or may not cause an allergic reaction*

My 9 year old suffers from mito and also has a kidney condition and tends to overheat and has trouble regulating temperature. We are in the process of getting him a cooling vest. Now we were looking for something that is functional yet still looks "cool" he is not worried about it but we know how kids are and we wanted to minimize issues. We found an evaporating cooling vest - it has special non-toxic beads that are charge by soaking in water and wrung out and worn over a t-shirt. Some can provide cooling for up to 6-8 hours. We are going with: Techniche HyperKewl Evaporative Cooling PEAK Cycling Vestfrom Sears. Once we get it I will let you know how it worked for him. 

Many time it is important to conserve energy or ave help when balance is off for one reason or another. Many have found crutches or wheelchairs to be a good option. I suggest forearm crutches becasue they allow for your hands to be free and they take less energy to use. Mine has a little attachable pouch to keep my money, ID's, or car key. Back packs are also the new purse... it is an easier way to keep snacks, medical letters, water, etc. with me at all times. They come in many styles and colors to fit your lifestyle. Also there are extra pads sold by a company to make things more comfortable: www.crutcheze.com

This is just what we are using now and looking into... I will add more if and when the needs arise.