This is a question that I have been asked several times over the last few years and asked more often recently. There have been many people from the Biliary Atresia Network, which I founded in 2001, that have asked me what I am doing that has allowed Ashley to live 10 1/2 years with her original liver. What have I done that helped prevent Ashley from being inpatient in the hospital since December 1998. I really wish I had an answer as to why Ashley has done so much better than other children with biliary atresia. I wish I had a magic formula to treat this liver disease, believe me if I did I would most certainly share. All I can is tell you is what I have found to be effective in treating Ashley. However, please remember I am just a mom; I am not a doctor nor do I play one on TV.
First, when Ashley was diagnosed I researched everything and was on the computer 24/7. I would research my research. It drove my husband crazy but it made me feel like I was doing something to help Ashley. I questioned the doctors, demanded answers and refused to leave the doctor's office or hang up the phone until I got answers.
Second, when Ashley was sick with normal sick kids stuff, I would research the medication prescribed to her before I filled the prescription. There have been at least two times, that I remember, when Ashley was prescribed medication that would adversely affect her liver. We never filled those prescriptions, the doctor was called and another prescription was ordered.
Regarding over-the-counter meds, after I found the support group Children's Liver Association for Support Services (CLASS), I searched their website for information; anything that would help me. The Resource Center on CLASS has a wealth of information on all sorts of pediatric liver disease and transplantation. One thing I don't leave home without when traveling with Ashley is the list for Acceptable Over-the-Counter drugs for Pediatric Liver Disease patients. Ashley does not get any over-the-counter medication unless absolutely necessary. I could probably count on both hands how many times she has had Motrin or Tylenol. Our fever reducer of choice is Motrin, we have probably given Ashley Tylenol maybe once in her 10 1/2 years of life.
Third, after researching all the meds that Ashley is on or was on because of her disease, such as ADEK vitamins (no longer takes this medication), Phenobarbitol (no longer takes), Actigall, Prevacid, Miralax, etc, I learned not only the reason Ashley is taking these meds but how and when she should take them. Most important I learned that Actigall should be taken with food at the same time every day. Since I started giving Ashley her Actigall with food and consistently at the same time every day, I noticed that her liver numbers started trending downward. After about three months of administering Actigall in this way, Ashley's liver functions have remained perfectly normal and only elevating when she is sick; this has been the case since early 2002 (I have proof of this in a spread sheet that I created when Ashley was first born). I am not sure if changing the Actigall routine helped Ashley but it certainly hasn't hurt her and her liver functions are normal.
Fourth, Ashley was very sick when she was first born with a bilirubin of 15.5. I was breastfeeding her and then was told after the Kasai that I would need to feed her a special formula. However, Ashley did not tolerate the special formula and then without permission from the doctors I gave her regular Similac with Iron. At first, Ashley's doctors were not happy with me, but when they noticed she was gaining weight and thriving they allowed her to stay on the formula. Just so you know, it would not have mattered if the doctors told me to put Ashley back on the Special formula, I would not have listened. For six weeks while Ashley was on that stuff, she didn't gain weight, she was throwing up not only her food but her meds. Once I fed her the regular formula all of that changed. How is a sick baby supposed to get better if you put her meds in a few ounces of formula and she either doesn't drink it because of the taste or she drinks it only to throw it up seconds later. I don't care if you are a doctor or not that is not healthy for a sick child.
Lastly, I demand tests to be done on Ashley even if her doctors feel that the tests aren't warranted or her labs don't indicate the need for those tests. For example, Ashley was three years out from her Kasai, she had not had an ultrasound since a few months after her Kasai surgery (I think she was 5 months old). At one of Ashley's liver clinic appointments I asked that Ashley have an ultrasound. Ashley's doc felt it wasn't necessary and didn't agree. I argued my case, told him I had insurance, to humor me and order the test. Of course, I won that argument and Ashley had an ultrasound. That ultrasound that doctor didn't feel was necessary showed a nice 2 cm mass sitting on Ashley's liver. Now Ashley has two more 1 cm cysts on her liver too. If you feel in your gut that more tests need to be done, demand them to be done and don't take no for an answer.
All of Ashley's doctors firmly believe that the reason Ashley has done so well for so long is my aggressiveness in her care and my persistence with the medical community. Doctors don't know everything remember they are practicing medicine and for the most part they are learning as the go too. Yes, Ashley has problems with fluctuating low platelets, a low white blood cell count, unknown cysts on her liver, bleeding issues, abnormal vitamin levels, and a weakened immune system but she is remarkably like any other 10 year old. She growing and thriving normally...so I must be doing something right. Of course, prayer has never hurt and my faith in God has certainly helped.
First, when Ashley was diagnosed I researched everything and was on the computer 24/7. I would research my research. It drove my husband crazy but it made me feel like I was doing something to help Ashley. I questioned the doctors, demanded answers and refused to leave the doctor's office or hang up the phone until I got answers.
Second, when Ashley was sick with normal sick kids stuff, I would research the medication prescribed to her before I filled the prescription. There have been at least two times, that I remember, when Ashley was prescribed medication that would adversely affect her liver. We never filled those prescriptions, the doctor was called and another prescription was ordered.
Regarding over-the-counter meds, after I found the support group Children's Liver Association for Support Services (CLASS), I searched their website for information; anything that would help me. The Resource Center on CLASS has a wealth of information on all sorts of pediatric liver disease and transplantation. One thing I don't leave home without when traveling with Ashley is the list for Acceptable Over-the-Counter drugs for Pediatric Liver Disease patients. Ashley does not get any over-the-counter medication unless absolutely necessary. I could probably count on both hands how many times she has had Motrin or Tylenol. Our fever reducer of choice is Motrin, we have probably given Ashley Tylenol maybe once in her 10 1/2 years of life.
Third, after researching all the meds that Ashley is on or was on because of her disease, such as ADEK vitamins (no longer takes this medication), Phenobarbitol (no longer takes), Actigall, Prevacid, Miralax, etc, I learned not only the reason Ashley is taking these meds but how and when she should take them. Most important I learned that Actigall should be taken with food at the same time every day. Since I started giving Ashley her Actigall with food and consistently at the same time every day, I noticed that her liver numbers started trending downward. After about three months of administering Actigall in this way, Ashley's liver functions have remained perfectly normal and only elevating when she is sick; this has been the case since early 2002 (I have proof of this in a spread sheet that I created when Ashley was first born). I am not sure if changing the Actigall routine helped Ashley but it certainly hasn't hurt her and her liver functions are normal.
Fourth, Ashley was very sick when she was first born with a bilirubin of 15.5. I was breastfeeding her and then was told after the Kasai that I would need to feed her a special formula. However, Ashley did not tolerate the special formula and then without permission from the doctors I gave her regular Similac with Iron. At first, Ashley's doctors were not happy with me, but when they noticed she was gaining weight and thriving they allowed her to stay on the formula. Just so you know, it would not have mattered if the doctors told me to put Ashley back on the Special formula, I would not have listened. For six weeks while Ashley was on that stuff, she didn't gain weight, she was throwing up not only her food but her meds. Once I fed her the regular formula all of that changed. How is a sick baby supposed to get better if you put her meds in a few ounces of formula and she either doesn't drink it because of the taste or she drinks it only to throw it up seconds later. I don't care if you are a doctor or not that is not healthy for a sick child.
Lastly, I demand tests to be done on Ashley even if her doctors feel that the tests aren't warranted or her labs don't indicate the need for those tests. For example, Ashley was three years out from her Kasai, she had not had an ultrasound since a few months after her Kasai surgery (I think she was 5 months old). At one of Ashley's liver clinic appointments I asked that Ashley have an ultrasound. Ashley's doc felt it wasn't necessary and didn't agree. I argued my case, told him I had insurance, to humor me and order the test. Of course, I won that argument and Ashley had an ultrasound. That ultrasound that doctor didn't feel was necessary showed a nice 2 cm mass sitting on Ashley's liver. Now Ashley has two more 1 cm cysts on her liver too. If you feel in your gut that more tests need to be done, demand them to be done and don't take no for an answer.
All of Ashley's doctors firmly believe that the reason Ashley has done so well for so long is my aggressiveness in her care and my persistence with the medical community. Doctors don't know everything remember they are practicing medicine and for the most part they are learning as the go too. Yes, Ashley has problems with fluctuating low platelets, a low white blood cell count, unknown cysts on her liver, bleeding issues, abnormal vitamin levels, and a weakened immune system but she is remarkably like any other 10 year old. She growing and thriving normally...so I must be doing something right. Of course, prayer has never hurt and my faith in God has certainly helped.
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