Advice from Tony of the DBA Yahoo group :Blackfan Why is steroid treatment better than blood transfusions? My child has not been given any immunizations since starting on the prednisone (because they won’t work because he is on steroids), and I have concerns about when he goes to daycare or school – will we just go from one sickness to the next? Steroids are not necessary better or worse than transfusions. Treatment for each child is different because each reacts differently to the treatments given. Some kids respond to steroids and some do not, kids who do respond might not be able to be tapered to a "safe" but effective dosage, thus making steroids not the long term treatment. Each of the treatments has side effects, transfusions definitely take much more time between the transfusions themselves to the chelation therapy. I keep hearing how steroids stunt growth and they do to some effect, but I believe that the DBA genetics leads them to be generally shorter than they would have been, no matter which treatment they are under. Andie is taller than several of her DBA friends who are transfusion dependent, but she will not reach her height that she might have been. Mr. Gunderson, who is the moderator of the DBA site, has been in remission most of his life, yet he would tell you he is on the short side a tad! For a boy, it will be more noticeable than for a girl. If andie is taller than 5 ft, it won't be "unusual" even if its less than average. If a boy ends up just over 5 ft, he will be considered short. So power forward, linebacker are probably not in his future. I am a little confused about why they switched to steroids in the middle of the vaccine period. My child was not on steroids through 18 months, why didn't they continue this until he was finished with the live vaccines? You cannot or should not take live vaccines, however most are not live anymore. My daughter was under no treatment during the first 3 1/2 years of her life so she was able to get through the vaccine period. What is it going to be like for the child growing up? That all depends. Each child is different. Many suffer from other health, mental, and physical impairments beyond the blood disorder symptoms. My daughter is one who probably lives the most normal of lives on this list. Andie suffered from some urinary tract problems that have been surgically fixed (relatively minor surgery) and now just takes 6mg EOD of steroid. This is the same tapered dose she has been on since she was 5 and weighed about 45-50 lbs. She is now nearly 12 and weighs about 105 lbs. Andie is approaching 5 ft in height now and looks no different than most of her friends. Some are taller, but many are shorter than she is. She plays 3 sports (soccer, basketball and lacrosse) without any complications or restrictions. She has had a bone density scan and is normal. Her Hb has been in the 10.5 -13 range during this time, but generally is between 11 and 12. Now again she takes a low dose steriod. so low that there is no medical reason it really works. or as the hematologist says, we give more to kids who have adrenal problems. Will they just be watching everyone else do the things he wants to be doing? There is a good chance, see above. I would say that most of her friends don't even know she has the condition, and we generally confuse schools and such if we put down that she has this anemia, because they feel that they need to understand it as if she might go into shock or a seizure, etc similar to other chronic diseases like diabetes. We had more problems with the urinary tract infections and treatment then we were having with DBA. If he goes to transfusions there will be definitely a difference because the treatment is more active, many kids have ports, and the kids go through a high-low period with their hb. as every kid gets low, it affects their physical and mental condition until they are "topped" off. My child who is in 6th grade has been getting all A's this year, so again she is just like everyone else in her age group, but each child's ability is different just like in normal life. Or are we being neurotic…?? There is nothing you can ask, that hasn't already been asked or thought of by every parent on this list. or any other parent with any child who is battling chronic conditions. Remember you would be thinking a lot of the same things about your kid no matter what or who they were. What about bone marrow transplants? Why aren’t they the fix? A little more tricky here. BMTs can "cure' the symptoms of DBA. More and more kids are going through BMTs for DBA and other diseases. Doctors are doing more research into this area, including what is called mini-BMTs. Depending upon the donor (related has been better) and the match (full is best, obviously). success has varied from very good to not so good. BMT is a big monumental decision and I don't say that lightly. Some have gone that route with everything seemingly perfect and have lost their child. Most children can be maintained for a "lifetime" on the current treatments. Some have need the BMT because they were struggling with the treatments or the side effects, meaning they had to go that route. Many have had more children through IVT in order to try and get a match. Technology has made that possible, but expensive. Some just naturally have kids that match, and some like us do not have a match at this time (siblings don't match and we haven't look for an unrelated donor). At this point there is no genetic fix yet, and probably won't be anytime in the future. Also a BMT does not change the fact that the child may pass on the problems to their children. Daycare, school etc sickness? My child has been in daycare from almost day 1. I personally think it made her imunnization stronger in the long run. as of right now, I think she gets sick less than anyone in our family or her friends. she rarely misses school. Future issues Please watch the dose level. As your child grows they can outgrow the dose. this can be good and bad. You might need to up the dose to keep the hb up, or your child might continue to maintain and thus you are in effect lowering the dose which is great. Like I said Andie double her weight on this dose. And a couple of years ago, her hb actually started going up and she started to maintain a higher level hb. All the best. Tony Tony and Robin D. parents to Andie, Hayley and Hunter Andie is low steriod EOD dependent 2004 Hayley and Hunter, twins born 2002 w/ no symptoms Tony's sister Lori DBA, lost at 34 due to cancer -------------------------------------------------------------------------- Please read the notes for Camp Sunshine as many questions were answered by Dr. Lipton, Dr. Vlachos and Dr. Alter in July 2006 Click here |
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A Parent's F.A.Q.'s and a Parent's Response
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