3 Steps To Help Your Child with Bone Marrow Failure
Your child has been diagnosed with DBA. Or perhaps you’ve just been told your child has bone marrow failure and DBA is suspected to be the cause. It is a tough diagnosis, whether working or confirmed, because it seems like there is not much you can do.
But take heart. You’ve come to this website because you are a proactive person. There is actually a LOT you can do and you can make a BIG difference. Here’s how to do it:
1. Recognize the importance of your voice.
No one can force you, or your child, into any medical treatment, even if your entire medical team recommends it or it is the standard medical procedure. If your heart says no, and it is not an immediately necessary, life-saving treatment or procedure, then take a moment (or a few), take several deep breaths, and listen to yourself.
Your child does not have a voice. The decisions you will make about how you’re going to treat this disorder will directly affect his or her health on physical, mental, and emotional levels, and could change the direction of his or her life, possibly for his or her entire life. You need to be comfortable with what you are choosing to do. It is YOUR child. It is YOUR life and YOUR child’s future. The doctors — though well-meaning — do not have to live with the consequences of what you choose. You do. In our society, we are conditioned to say “yes” to authority and doctors are authority figures. But you do not have to say “yes” to everything any doctor suggests, because in reality, they are only suggestions. You have the power, and you must accept that you have the power, if you are going to help yourself, or your child, at all.
2. Learn everything you can.
You’ve come to this website and that’s a great start. But there’s more out there — a lot more than what I have the time to post here. And the truth is that you simply cannot make the best decisions for yourself (or your child) if you aren’t as educated as you can possibly be about your choices.
Yes, your medical team knows a lot about DBA. But, I would bet you that they do not know everything. (I would often surprise Adahlia’s doctors by knowing more about some aspect of her disorder than they knew — more than they probably wished I knew.) Don’t get me wrong: Listen to your doctors. Just listen to them carefully. Consider their advice. Just don’t jump on it. And if you’re really interested in helping yourself (or your child), learn to use those doctors. Make them research for you. After all, your medical team members are supposed to be the subject matter experts for you. They aren’t supposed to bully you — they are supposed to advise you and help you make your decisions. You are the decision-maker. If you aren’t sure about something, ask them for more information. Challenge your medical team (in a respectful way) when you find contradictory information (and you will). The best doctors won’t mind that you’re involved — they will respect your dedication and will be glad to learn more. After all, DBA is a very rare and mysterious disorder. New information and new guidelines are constantly coming out.
If you have DBA or are a parent of a child with DBA, join the DBA Family Facebook Group. It is a closed group and is only open to adults with DBA and the immediate family members of children with DBA. Why? Because DBA is a highly intense diagnosis and disorder and an emotional roller coaster. The group is intended to be a safe place for people directly affected by DBA to share information and experiences with other people who truly “get” what it means to live with DBA. But the group is more than emotional support. It is an absolutely fantastic place to ask questions about DBA, medications, and complications. If you are conflicted about starting a new treatment or therapy, you can ask others what happened when their child tried it. The DBA Family has helped and educated me more than any other resource. Learn and share experiences with people who have been there, or who are there with you, now.
Subscribe to the DBA Foundation newsletter. In it, you will receive the latest updates on research, treatments, therapies, managing complications, etc. It will be one of the most valuable things you do in terms of educating yourself. And then READ it.
3. Find out what supplements you (or your child) needs — and TAKE THEM.
DBA is a chronic disorder. Chronic disorders wear down the body and use up stores of antioxidants, vitamins, and minerals, amino acids, etc. This which further worsens the body’s ability to function normally and creates free radicals, which further damage tissues, and creates further oxidative stress on the body, wearing down the body and using up any remaining stores of antioxidants and other vital nutrients. It creates a rapidly worsening cycle. Many parents of DBA children have discovered that their child has a defect in methylation or detoxification (such as the MTHFR gene). It is almost guaranteed that in a chronic disorder like DBA that there will be nutritional deficiencies, and some of them will be very striking and serious, even in a 4 month old infant. The body and brain cannot develop properly in a deficient environment. But there is good news here: You can help.
You can take significant stress off the body and help yourself or your child to be as healthy as possible by simply finding out what the body needs to counteract the destruction and start working constructively… and then providing it. From a dietary perspective, eat healthily, choosing fresh and whole foods over processed foods. Go the extra step and go organic. Buy grass fed, wild-caught, and organic meats. Buy a juicer. Juice vegetables and encourage the DBA patient to drink 8 ounces every day. Take recommended dosages of fish oil to reduce inflammation, as inflammation is a significant problem in every chronic disease. (And it has the added benefit of helping brain, heart, and vision health). Make sure all your supplements come from reputable sources that freely share their quality control testing information, so mercury, pesticides, and other contaminants don’t make your child’s problem worse.
The best plan would be to take yourself (or your infant or child) to medical provider able to order nutritional analysis and allergy/autoimmunity testing. There are many nutritional tests out there. Most are simple saliva, blood, or urine tests. (The Spectracell blood test, for example, is great because it measures the nutrition that actually makes it into the cells, and you can order it online, all by yourself, if you need to.) Whichever test you choose, try to get the blood drawn by nurses during a routine transfusion appointment, so that your DBA patient doesn’t have to suffer an extra poke. My suggestion would be to do a combination of tests, if you have the financial means, so that you can compare them. Tests typically cost between $98-$500 each, and some of them are at least partially covered by Medicare or other insurance (if a doctor orders them).
In the nutritional analysis, you will be interested in finding out any and all food allergies or sensitivities so that such foods can be avoided. You will need to know of deficiencies in vitamins, minerals, amino acids, antioxidants, and other vital body building blocks. You will need to know if there is a sensitivity to sugar, so you can avoid fructose (found in fruit juices and candy). You need to know all you can so that you can buy the right supplements and give yourself (or your child) what is needed to thrive.
It IS possible to thrive with DBA. My child is living proof.
Get motivated and get courageous. You’re in for a marathon — not a sprint.
It’s not going to be easy. There will be times you’ll be tempted to give up — to just hand the reins over to the doctors and tell them to do whatever they want. To stop the dietary changes and supplements and just let nature take its course.
If you do, I certainly can’t judge you. Its a tough, tough road. And I’ve done my share of giving in and giving up…
… and then regretting it and getting re-motivated to do what I believe in.
You can do it. If you’re reading this, you’re motivated. You’re dedicated. And I am willing to bet that you are courageous. When you falter, seek support from those who are in the fight with you and will be glad to rally behind you. Take care of yourself, and take care of those you love.