In the beginning it was just the screaming at bed time and then on Monday she had a little bit of a rough day and started having issues in the car again and by Tuesday afternoon - whoa baby. She was aggressive, defiant, pinching, biting, poking, pushing, going from happy to tears and pulling her hair out in a split second multiple times a day, banging her head, crying, not okay being left alone or even with me just in the room she had to be touching me. We kept thinking her teeth were hurting her so bad that she was just losing it because she would flinch if I tried to check her gums.
On Wednesday afternoon I had a phone call with her new doctor (more on that in a minute) and she said something that made me start thinking about things differently. We weren't even discussing Megan's current situation it was just a random comment on something. I knew that the medicine we had been giving her wasn't working. When we originally realized she was waking up at night because she was in pain we gave her the meds we had on hand which was a dye free Advil, it was still flavored but we figured she needed something. She got that medicine for 4 nights before I realized that it contains benzoates. Megan had started being aggressive about that time and that is what benzoates do to her so I went in search of an alternative. The only pain medicine I could find that was dye free, artificial flavor free and benzoate free was acetaminophen.
We haven't given her any acetaminophen in years because of the potential issues it can cause in people with brain injuries. I called her pediatrician and she said the amount and frequency wouldn't cause an issue and Megan needed something so we gave it to her. It was only once a day, at night, except for when she started really struggling in the morning I gave it to her then and not at night that day. Her pediatrician had warned me that it wasn't the greatest at helping with teeth pain and when Megan was still obviously having issues and then started flipping out on Wednesday morning I gave her a dose of the Advil and then......nothing changed. It finally occurred to me that, though she was probably still having teething pain issues, the behaviors we were now neck deep in had to be related to exposure to something. At first I thought it was a new food item but it seemed like an excessive response and FINALLY after the doctor made her comment I thought...hmmm the acetaminophen. Sheesh.
The initial aggression and screaming was likely caused by the benzoates. The lovely behaviors that showed up a few days later had to be the new meds. It fit the timeline. Wow. So we stopped giving her meds. She hasn't had anything since 9:30 yesterday morning and she hasn't had acetaminophen since Tuesday morning around 11 and she is coming out of it - except for the flipping out in bed.
What has been truly amazing about the past few days of madness is that even with all of that going on in her little body there were still glimpses of not only her sweet self but also crazy good progress. She was happily selecting the correct animal when requested (horse, cow, pig, sheep), she was happily identifying body parts (eyes, ears, nose, mouth, chin, cheeks, forehead, head, hair, knee, etc) . She had been temporarily "grounded" from the blocks for repeatedly throwing them and when she went to get one I told her (from pretty far away) to stop that she wasn't allowed right now and she did. She sat there, 2 feet from them and didn't touch them. Megan doesn't like to "perform" and she doesn't typically obey when there are blocks involved yet she did both. She also turned around and looked for something when I told her it was behind her. She has never done that before, so she learned what it meant. She will now also look at where my finger is pointing when I am trying to show her where something is. Again, not something she has done before. There are a few other things as well so she is continuing to progress despite the war raging in her due to the med mishap.
We are always searching for ways to help Megan. We both feel that her salicylate issues are caused by a gut problem, maybe leaky gut. She has had digestive issues since birth, she was a preemie, there were toxins involved when she was gestating...her gut needs to be healed. Following the Feingold diet has showed us what to avoid feeding her so that she doesn't react, but we have been walking blind with regard to what is right to give her and what we should avoid (unless we see a reaction). We have been trying to find a good functional medicine practitioner and ended up finding so much more. The lady that we will be meeting with on Monday (so excited we were able to get an appointment so soon) is a nutritionist, chiropractor, DAN!, craniosacral therapist and biofeedback. She will be developing a treatment plan for Megan that consists of lots of testing to see where Megan's system is lacking things, etc and then telling us what supplements, treatments, etc are needed in order to help her. We will no longer be guessing we will have data to know what she needs and what we have to avoid. Not everyone responds to the treatment this way but a good portion of children find their voice after successfully cleanses toxins, replacing nutrients, etc. We are hoping that this will be a huge step for Megan in her recovery from her birth.
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