Don’t Be Bullied!
As parents of warriors, we must always be alert when managing our babies’ Sickle Cell disease. Recently, I had another eye-opening experience while dealing with doctors after my warrior temporarily lost her vision twice. The doctors immediately admitted her and gave her a blood transfusion. Next, they ran all kinds of tests and did a total of three MRIs. In conclusion, they could not figure out why she had vision loss twice within the past four weeks. In the first instance, my daughter had head pain but the second time she only had eye pain. Their best guess was that it was a migraine that caused the vision loss both times and prescribed Nortripyline. Now, without question, I trusted that these doctors would not prescribe my baby anything that would hurt her.
We started her on the Nortripyline for a week after the first vision loss episode. By the third day, she began to vomit, and lose her appetite every day. I called her doctors and discontinued giving it to her. By the time the second vision loss episode occurred the doctors were sure it was because I stopped the giving her the Nortripytline. However, when on this drug longer for the second week, my daughter loss her ability to urinate, had loss of appetite again, and had chest pains each night. This whole time, I hadn’t realized no one told me the side effects. So I decided to look up the side effects and my heart just sank. The drug is mainly prescribed for depression and has a list of side effects that were scary to say the least. My little warrior was experiencing at least of five of these side effects. She would tell me she felt sad along with the side effects she had that I mentioned earlier. I was irate not only at the doctors but also at myself. They basically guessed and was wrong. I remember even asking the doctors if they could distinguish the Sickle Cell pain from a migraine and one of the doctors told me no.
During her followup I explained the side effects and why I discontinued the drug again. Their next solution was to change the drug to something else. But this time instead of trusting them at their word, I looked up the side effects as soon as I got home. The side effects were the same as the first drug plus more. I never gave her this new drug nor did I call them but decided to wait until her followup appointment. With prayer as my guide, I looked at studied her diet and realized she was not drinking enough water nor taking her vitamins and Folic Acid consistently. So I increased her water to 4 one liter bottles a day. She was told to drink at least 2 at school and 2 before bed. Her crisis have went from 7 days a week to maybe 2 per week that do not last more than an hour. When she has crisis now we pray on them and within a hour they are gone. My children also will assist in helping me pray for her. And my warrior herself has requested we pray and doesn’t want medicine. At this very moment we have a full bottle of Motrin that has not been opened, she has not missed school for SC and overall health has improved.
Parents don’t be afraid to look up these any drugs they offer your warrior before you give them to your child. Do not let doctors gang up on you and dismiss your knowledge of Sickle Cell or your knowledge about your child specifically. My warrior’s body reacts differently than others. What others can take and experience no side effects; my daughter experiences them right away. Doctors will tell you that until the drug is in your body for 30 days that you should not see any side effects. That also is incorrect. The main argument was “what caused the vision loss?” The hematologist could not believe it was SC because they said she should have had a stroke. The eye doctor said it was surely the SC because any other cause would have made her blind. The neurologist said it had to be a migraine because and not SC because again she should have had a stroke. I looked at both of them during the follow up and said I believe my baby did not stroke because God did not allow it and it was a miracle. They all just starred at me. She continues to have blood transfusions but they have to keep decreasing the blood given because her blood count is up. So I know she will soon be off of transfusions as well.
As a parent, you know your child’s body just as well as your child. As parents, we are there 24/7 caring for them and keeping track of what is happening with their Sickle Cell. It is a great idea to keep a pain journal especially if your warrior is sick often. The best pain journal would be a planner with enough space to write down your child’s pain. Things to record in this pain journal would be time of crisis, where the pain is, how long the pain lasted, what remedy if any you used like medicine given, if went to ER, if hospitalized and for how long. And upon discharge; what was the cause of the pain if known along with instructions. I like to abbreviate a lot of what I write in my daughter’s pain journal. I would suggest writing in your own code to save space to add all details needed. For those of you that love your phone, you can also try the free, private VOICE Crisis Alert app for sickle cell disease. Download from any app store.
Doctors are a great help in managing SC but do not know everything. This is not any easy journey at all but there are things we learn along the way that shows us the best experts in dealing with our warriors is us, the parents.