Tuesday, September 27, 2011

The Flu Shot

Last week I went to the pediatrician office to get both Teale and Gwenn's flu vaccine. With Teale being high risk, she can not afford to get sick with anything as severe as the flu, so her doctor recommends the vaccine for our family. Teale's behaviors have been very unstable for about six weeks now. The latest behavior that has really intensified, is biting her own arm. Her psychiatrist and I had met earlier the week of the flu shot, discussing different medication options to add to her already extensive medication regimen. We decided to increase a beta blocker that she is on for anxiety and her resent diagnosis of Hoshimotos Disease. The beta blocker helps to slow her racing heart, caused by the current hyper state of Hoshimotos. Hoshimotos is a thyroid disorder in which your own body attacks and eventually kills your thyroid. There are two stages to this, the hyper state, when it is still functioning, but at an excellerated state and then the hypo stage, after it is no longer functioning. Teale was diagnosed with this in August when Mark and I followed our gut and had a blood test done on Teale. She had been "off" for a while but then also had some strange vomiting over a few day period that bothered us. Knowing a blood test is often the first step to medical intervention with Teale, Mark took her on a Sunday morning for blood work.  We have standing orders and then we usually also have an order for blood work in hand. The one we had at home checked thyroid levels and by late afternoon, both her psychiatrist and her pediatrician had called me with concern. By the end of that week we had had three additional blood tests done on Teale trying to find the source of the elevated thyroid level. Her behavior also escalating as the week progressed and insomnia became an issue. The week following the blood work, Hoshimotos was the diagnosis. Beta blockers were recommended to give her racing metabolism some relief. Ironically Teale was already on beta blockers at this time, to help with anxiety, so we increased them just slightly. Relief was not found, her body was angry and her moods were not stable. She was raging often and biting her own arm was part of this uncomfortable feeling her body was experiencing. Her psychiatrist compared it to "cuttings," people who cut themselves to "feel something." The guess was that Teale must be in a depressed state of her bi polar or the Hoshimotos was making her feel so high strung that biting her own arm gave her some sort of release. As a parent it is disturbing to watch, the depth of her biting herself increased and she often was drawing blood. Her arm looking so badly bruised and scabbed, I wondered if CPS would be called on Mark and I? After much discussion and many weeks of hell, her psychiatrist suggested a different medication to help Teale, an antipsychotic. She has been on antipsychotic drugs before, but often the side effects are worse than the behaviors we are trying to solve, so I was wary. This one has extreme weight gain as a side effect, something that deeply concerns me. Teale already has sleep apnea, weight gain could intensify that, causing irritability because of sleep depravation. Weight gain is also a concern because she is already bigger and heavier than me and in certain situations, I need to control her behaviors by holding her. It is sometimes the only way to help her calm because otherwise she will hurt me and throw things. The bigger she gets the more difficult it is for me to hold her to calm. Her doctor e-scribed the prescription to our pharmacy and I left saying I would discuss it with Mark and research the medication further. I picked it up at the pharmacy, just in case we decided to go with it. That night Teale had one of the worse rages she has ever had, about one hour of out of control behavior and her practically eating her own arm. We were exhausted, sad beyond words and desperate to help her, I gave her the new medication. We saw immediate results, she was pleasant to her brother, who had been a target for many weeks. She had either loved him or hated him, there had been no in between. He could walk through a room and she would go ballistic at him for just looking at her or he could make her laugh like no one else. The way she had been treating Beau was my biggest frustration, as he is a good big brother, caring about his sister much. I felt her behavior toward him was breaking down their relationship and I was scared it may never be repaired.  To see Teale be happy and "normal" with Beau was a small miracle, so we decided to give the medication a try. Wandering at night started, a side effect of the medication was insomnia and Teale had it. She was up and down all night, playing Wii, watching TV, bugging Mark & I. But the results were decent enough to continue the medication and hope the insomnia would stop after her body got used to it. Going into the flu vaccine appointment, Teale was "loopy." The combination of the increased beta blocker, the new antipsychotic and a few nights of insomnia was affecting her. The pediatrician would be seeing both Teale and Gwenn, as giving Teale a vaccine by anyone but her own doctor was difficult. She was terrified of the new nasal spray but accepted the shot with relative ease. Her pediatrician observed Teale and agreed she was very calm for her, but also a bit loopy. We discussed cutting back the beta blocker, he checked her blood pressure, ears, etc. He gave Gwenn a good check over and she was given the vaccine in nasal mist form. Then we decided on a way to give Teale the shot, telling her and then administering it quickly. She sat still, but then made a noise much like when she has a seizure, an inaudible moan. Her arm jerked strangely at the same time, her doctor and I both alarmed by it. Suddenly ALL color drained from her face and she turned completely grey. I sat down next to her, putting my arm around my daughter, who in any other situation would push me away, but she leaned into me instead. This alone caused alarm, Teale hates to be touched. Her gaze was distant, I was scared. As Gwenn sat across the room from me on the exam table, I gave her a glance over, wondering what she & I were about to witness. Was Teale going into a seizure, was she having a strange reaction? Her color was so grey, there was a look of death to her. Her doctor immediately listening to her heart rate, it had plummeted to 30. A nurse was called into the room, the three of us picking up Teale to lay her onto the ground. Tears are running down my face and I am terrified, is her heart stopping, what is going on? As we lay her down she shuts her eyes and doesn't take a breath in, both her doctor and I are aware of this and tell Teale to breath! She does, but holds her breath again. The look of her without color, her eyes shut and the not taking in a breath was too much for me, I am increasingly scared, as the nurse comforts me. Knowing her doctor is in control of the situation, my emotions are coming out. Is Teale dying before my eyes? It was so unbelievable, a simple flu shot, what went wrong? The minutes were passing,  slowly her heart rate was coming back up and color was returning to her face. Soon she was looking at us like, "why am I on the floor?" She then abruptly stood up, both her doctor and I guarding her. In the end, her doctor believed it was the combination of the new medication, the beta blocker and a nervous reaction to the shot. Although Teale does blood draws easily and has never expressed fear when getting a shot, her doctor believes the shot was the catalyst. It was an exaggerated fainting spell, a vasovagal response. With Teale having a seizure disorder and her being on so many medications, the doctor later admitted to me that he was fearful also. Usually a child who faints from a flu shot would not cause him such alarm, but Teale was different. We sat in the office until Mark arrived, as I was shaken and needed to get Teale home to get her feet up. Mark would drive Gwenn to school and let the teacher know what she just witnessed, in case any fears came out. Finally walking out of the doctors office after what was supposed to be a routine flu shot, I now had perspective. Teale's behaviors over the many weeks had been wearing, frustrating and caused me anger too. I was sick of how badly she was affecting all of us at home, I was devastated and desperate for some relief. But as I walked out of that office, I realized I would never want to live without the chaos Teale brings to our lives. Perspective was the gift that day, a realization that Teale, even in her most difficult stages, is a part of my heart that I could never lose.