Ashley's Health

I’ve had several of you ask for the blog about what is going on with Ashley. I have put it off because of the personal nature of the health issues. I have decided to share it because we know so many people care about and pray for Ashley. And also we have always shared the details of our life, in the hopes that it will be beneficial to someone else. I must warn you, this is a long story. I have to start with a little history. When Ashley was 15 months old, I noticed a smell coming from her vaginal area. I mentioned it to her doctor, who dismissed it. A couple of months later, she stopped sleeping through the night. A few months later, autism hit, and we focused all our thoughts and energy on fighting that. When your child stops talking, a smell seems much less important. When she was about 2 ½ she started doing this behavior that resembled masturbation. We always thought she was irritated due to yeast infections, as a result of all the antibiotics from her sinus and ear problems. No one ever examined her because it would be so invasive. As she grew older these symptoms all remained, sometimes better, sometimes worse, but always there. Some people thought it was a self-stim, others a masturbation. We always tried things to control yeast. The older she got the more concerning it became. Especially as she has started to get close to puberty, more and more people were convinced it was masturbation, and making comments to us. It always looked more like pain or itching to me, but hard to convince others. So this summer when we went to the pediatrician, I brought it up again, and said we really need to stop this. I brought up all the symptoms; he said he didn’t know what it could be, unless it was a bacterial infection. He suggested we just try Flagyl (a different type of antibiotic), and see what happens. Everyone was still trying to avoid an invasive exam. So we started Flagyl, and within 3 days the smell was gone, all the symptoms were starting to disappear. At the end of the medication, 24 hours later, they all came back. So we did another 7 days of Flagyl, again everything disappeared and she was also sleeping better than she has in her life. After those 7 days were completed, 24 hours later all the symptoms came back again. At that point the pediatrician recommended we see a gynecologist. We had to wait 3 weeks before we could get in with the gynecologist. The pediatrician wanted to wait a week, before we did another course of Flagyl, and also recommended we treat for a yeast infection during this week. Ashley started to have intense symptoms and behavior. After that week, they agreed to another 7 days of Flagyl, she got better again, and also began to speak here and there. In fact, we saw improvements across the board. She stopped biting herself almost completely. When the medication ended, everything returned to our “normal”. We waited that last week, until we could get to the gynecologist. At this point, we were very hopeful that we were headed in the right direction. I asked a friend, who is a doctor, if it is possible to have a vaginal infection for 10 years. She said it absolutely was, and also did some research on Ashley’s situation. She found new studies that suggest some cases of autism could possibly be caused by an overgrowth of bacteria in the system. Even though Ashley had spent a great deal of her life on antibiotics, it was for sinus and ear infections. These types of antibiotics would kill the good bacteria in her intestinal system, and leave other bacteria that can’t be killed with those antibiotics. And certain strains of bacteria could even interfere with the dtap vaccine causing worse reactions. This was the vaccine that Ashley received right before she became autistic. It is much more scientific than this, but I am trying to keep it simple. There have been several studies showing benefits when children with autism are given Flagyl or similar antibiotics. The benefits always disappear after the antibiotics are completed. When we arrived at the gynecologist, I told Ashley that I really thought this doctor could help her. She verbally said, “I’ll go.” She willingly went and handled the whole appointment, including the exam beautifully. The doctor agreed she probably had a serious bacterial infection. She prescribed another 7 days of Flagyl, followed by continuing it 2 times a week for 7 months. She said it could be very resistant, and we may have to look at IV antibiotics. She did a vaginal swab, just to confirm the diagnosis was correct. Later that day, we received the test results, even after 3 weeks of Flagyl she did, indeed, have a bacterial infection. Although I feel enormous guilt that she has lived with this for so long, I am also so excited to finally have confirmation of a medical problem. Now whether this is related to the autism or caused the autism, I don’t know. I am hopeful; it would be nice to have a medical reason that indicates why we lost Ashley to autism. And whether the bacteria can be completely removed from her system; and can the damage be reversed, are still unanswered questions. At this point, we are focusing on trying to remove the bacteria, and stop the pain she has been in for so long. But we will happily accept any improvements that come through this process. She has already completed the 7 days of Flagyl, and started the 7 months of treatment. About 3 weeks into the treatment, it became clear that the antibiotic could not keep up with the bacteria. So now she is on 30 days of Flagyl, and then we will reassess the situation. We are also giving her several probiotics, trying to get her system in good shape. She also has another sinus infection. Evidently the antibiotics for sinus infections could interfere with the Flagyl, so we have a lot of medical things to consider over the next few months, and probably many doctor appointments in our future. We are excited about the improvements we have seen, and hopeful that this discovery will have a big impact on her comfort and her future. Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. Matthew 7:7 Originally published September 2011