What a Waste of Time

     Two weeks ago we had an appointment with pediatric neurology. I meant to only take a few days after the appointment to decompress then come back and update you guys on what is going on. Then Charlottesville was essentially under attack and again I became overwhelmed so I just stepped away from the computer for a little while. To catch up on past posts having to deal with this: 1 2 3
     I had mixed things about going to our hospital's neurology department. Some people love it and others hate it. I have not had the best experiences with them but I was hopeful that this would be a better experience.
     To say I was nervous was an understatement. However, I prepared by writing down bullet points that I needed to talk about and dates that things happened. Since we were seeing a new doctor I assumed she would want the whole backstory. When she came in, she introduced herself to both of us then said she had read up on everything that had happened but she would like to hear from me what had gone on. So I gave her a rundown of everything and I thoroughly explained her headaches and the episodes she has. As I was explaining what an 'episode' is like for Haleigh, I took out my phone and said "I have a video of her during one of these episodes and I would like to show you. You can see the change in her demeanor and her voice. It is hard to explain until you really see it." To which her response was "I have seen a tantrum before, no need to show me the video. (chuckle)" I tried to explain that this is not a tantrum, I deal with tantrums from all different children all the time, including mine and this is not that. Especially since she is not remembering some (most) of what is going on during the episodes. She just said, "I don't need to see it." Alright, I also mentioned that during these episodes she seems to be hyper sensitive. While she's screaming and throwing herself around, if we touch her at all she says we hit her or pinched her or whatever. I tried to catch her one time so she wouldn't throw herself into the television screen and she was convinced I had pinched her arm. One time she was rolling around, throwing herself on the ground and bumped against my foot and swore I kicked her. Sometimes I just try to soothe her by rubbing her arm and she screams out that it's hurting her. The doctor just kind of looked at me and shook her head. She said that our senses don't work like that. They (senses) can't all of a sudden be super sensitive then stop on the drop of a dime. "She probably is just already in a state so if you touch her she over reacts. It's not really hurting her, she just is saying it is or thinking it is." I wanted to argue this point because when I have a temperature between 99.1 and 99.9 my skin feels like it's on fire. Clothes, blankets, air.. anything that touches my skin hurts and burns. So I completely believe senses can work this way but moving on.
     Then she went on to tell me that she definitely believes that what Haleigh is having are migraines. She asked how often she was having them still - after being on meds for a month, and I took out my planner to show her. She cut me short and said, "I don't need to see that, just give me an estimate." At this point, I was beyond annoyed. I came prepared to talk and share with her what is going on and nothing is being listened to. I told her she was still having headaches most days and we were medicating most of them. She shook her head and told me that medicating more than twice a week would make her body used to the medicine and end up giving her rebound headaches which can be worse. I sighed and said, "okay, so just medicate the bad headaches? Her primary care doctor told us we had to medicate EVERY headache so they didn't have the potential to get worse. We were originally just medicating the worst headaches and were told this was wrong." She kind of clucked her tongue and said that she was the head specialist so I should probably listen to her. Obviously, that was the plan but shouldn't she also know what we were being told by Haleigh's other doctor as well? She then proceeded to tell us that the medicine Haleigh is on takes 4 weeks to start working and 8 weeks to really see a difference. She wants us to start Haleigh on magnesium and B2 (or B4? I can't remember but it is on the paperwork) while also cutting out some foods from her diet. I asked if we should be doing this all at once or should we do it gradually so we can know which is working and which isn't. She said all at once because it doesn't matter really as long as her headaches stop. *sigh* It does actually matter because if I am restricting what she is eating or giving her pills and I don't need to be then I am not going to. However, by this point, I already knew she wasn't listening so I let her continue.
     I continued on and said that 40-60 minutes after Haleigh takes her medicine she gets up and is upset/angry and has an episode. It only didn't happen twice because both those nights she didn't get any of the medication. To which she replied that is "odd" and "not from the medicine." How could it not be from the medicine when she doesn't have the medicine, it doesn't happen, and it only started AFTER we started giving her the medicine. When I questioned her, she told that this medicine has an antidepressant in it so if anything it was going to make her more stable than not, however, she was on such a low dose that really she isn't getting any of that side of the medicine. She then decided she wanted to up the medicine to 10mg (which was what they originally wanted to start her on but then decided to bring it down a bit) and that could possibly help her fall asleep better at night. Okay, here are my issues with this idea: 1. You don't think these problems are from the medicine so why change the dosage. 2. You just said that you can't see the full effect of the medicine until she's been taking it for two months. If that's truly the case why up her medicine until we can see what the effects will be? 3. The number 1 side effect of antidepressants is anger and depression, also, this medicine also has a side effect of deliria so maybe you should read up more on the medication you're giving out.
     After she decided we were going to up Haleigh's medicine a little she did an examination of Haleigh then sat down to end the appointment with us. I wasn't quite done however. Okay, maybe these are migraines had an early onset from the blow to the head. She said that it was most likely she would have migraines as she got older anyway because they are so common in our family. However, nothing about her episodes were addressed. I believe I said "Okay thank you for addressing the headaches however, we haven't really discussed anything about her episodes. What is causing them? What will be done about them? What can stop them?" She kind of sighed, turned towards me and said "Well, that is something you'll have to take her to behavioral health to deal with. I will send in a referral." No, this is not her just being bad or acting out. This started happening RIGHT after the concussion and just about daily after the second concussion. She is forgetting what she is doing, they are getting worse and she's getting violent now. This isn't just she's acting out, she's not remembering what's happening. This IS from the concussion. Another sigh then "Well symptoms from a concussion happen a few weeks to a few months after the incident. Maybe at first, theses outbursts were from the concussion but now it is a learned behavior that just needs to be corrected. Which behavioral health can help you with. You need to just trust me on this. I do a concussion clinic every Friday so I actually know what I am talking about." Okay so, I'm going to completely ignored and I am obviously annoying her. Literally, this was a waste of my time but I figured I would ask one more question. "Can any scans show if there was damage to any lobes? She had two serious concussions within a short time frame and is obviously acting differently and losing memory. Can anything be seen on any type of imaging?" She replied with "Oh we won't do any imaging. We barely do that. It is hard to see and unless she's having seizures or memory loss or something serious changes we wouldn't do one. No definitely no images for Haleigh. That's not an option."
     I didn't cry or scream I just nodded and said sure when she said she would see us in 6 weeks for a follow-up.
     To say I was angry was an understatement. By the time I got to the car I was crying and shaking. I was completely ignored, I wasn't given a chance to show the difference in my child, Haleigh was ignored when she tried to explain what was happening, and to top it off she was annoyed because I dare question what she was saying.
     We will be going to another hospital a little over an hour away to talk with their neurology team. It has been suggested to go to the other local hospital here since it is closer but the further away hospital was recommended to me by two people who have been there for similar reasons and had good experiences. I am hoping that we will meet doctors who will listen to what we have to say. Who will not make me feel like I am a person who wants something to be wrong with their child. I do not want something to be wrong, I want to be listened to and I want all avenues checked instead of being ignored and acting like we are an annoyance.
     Until then, Haleigh will be put on a 504 plan for her headaches, I will go into further details about this once I meet with the school about it. Essentially, Haleigh will have medicine and quiet space readily available for her at school. She is so worried she is going to have an episode like this at school and everyone will just think she is bad and won't know it is because of her headaches. We are worried too but we will just have to take it all as it comes.
      Prayers and well wishes are always appreciated. Thank you all for following this journey with us. I will try to keep you updated the best I can.

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