Tuesday, August 8, 2017

Tomorrow Is The Day

     Tomorrow we have another appointment for Haleigh so I wanted to update the situation here up until this point. If you need to catch up here is the first post and the second post about what is going on.
     On July 13th we went back for a follow up with Haleigh's Doctor. He was surprised at how many headaches she is having (despite already being told they were happening every day) and that they hadn't really slowed down with medicating each one. The conversation quickly moved to starting a migraine medication. He told us that there are multiple kinds but two really that come to mind for her. One would increase her appetite "and since she's already at the top of the chart that's not really something we want" (enter huge eye roll and annoyed sigh from me here). The other had fewer side effects but we would need an EKG to make sure all is well with her heart first. If she had a certain kind of heart rhythm she wouldn't be able to take this medicine. He talked about the different types of medicines for a few minutes before I looked at him and asked what happened to us seeing a Neurologist if she was continuing to have these headaches? He said that he felt they were pretty typical migraines and that they could handle them. Which is not at all what we were told previously. He had said that if a medication was going to be given for head stuff they almost always recommended them seeing a neurologist since it is their specialty. I told him that since her headaches were continuing and her demeanor had changed (which they previously ignored as soon as they heard I have a background with migraines) I wanted to see a specialist that specifically dealt with concussions because we thought that this has to do with what happened. He agreed that the concussion is what most likely brought on these 'migraines' and that, of course, the Neurologist
would be a good option but they (at our hospital he has an overhead doctor to talk to) didn't think we would get any other answers than 'she is having migraines' and they most certainly aren't going to do any scans or anything (as if that is what I asked for). I said yes but it is not JUST the headaches she is having, it is how her demeanor has changed. To which I was told by the overhead doctor that I "would be cranky too" if I had headaches every day. That is when I stopped talking because they were choosing not to listen to me. I said I wanted to see a neurologist and we would start medication in the meantime. We decided to go with a low dose of Amitriptyine, as long as her EKG came back fine. While we were sitting waiting for the nurse to come in to do the EKG I explained to Haleigh what was going to be done. Then Tyrone and I talked about how essentially we were appeasing them with giving her medicine and they were doing the same with us by sending a request to the Neurologist.
     Haleigh got the EKG done and everything was fine (as expected). So, her doctor came back in and said we could start the medicine right away, to give it to her at night, right before bed because it could make her really sleepy. He wanted to see her back within a month or so to check in. I made sure our referral was in and we left.
     *EDIT* I want to add in that during this appointment when her Doctor saw that she had refused medicine for some headaches because she thought they were too low for medicine, he said that was awesome. He turned to her and said it was great she knew her body so well and that if she felt it wasn't a big enough headache for medicine she should definitely tell me that. Which is exactly the OPPOSITE of what he said during the last appointment when he told me I needed to medicate her every time to break the cycle. That me not medicating her right away was probably just bringing on worse headaches later on. Yet then told Haleigh it was cool to refuse medicine. To say the least, I was frustrated.
     I don't think I mentioned how much her demeanor has changed in my posts, so let me try to explain a little of what we are dealing with. Haleigh is a fun, sweet kid, who sometimes has a lot of sass. She is so smart and will carry on long conversations with you. She helps me with the kids I watch, she enjoys helping me cook and make sweet tea. She loves to play any type of game but really she loves to dance. She has always been a very easy going child. I'm not saying she's perfect, the kid has some attitude (that she came by quite honestly - haha) but she can most of the time control it or a few minutes in time out will help the situation. Since the second concussion, she gets angry. Like really angry. It is so hard to explain - everything will be fine and then something will upset her. All of a sudden she is IN your face screaming. I call it 'devil screaming' because it's a deep throaty scream. It starts with her going 'no, NO, NO!' then she is screaming. Half the time we have no idea what she is upset over. She will just start screaming. She gets so angry she throws her self at you, gets right in your face, screams on top of her lungs then throws her body around. There have been many times where we will have to catch her so she doesn't throw herself into furniture or stop her head from hitting the floor. The second we touch her (to catch her or stop her from hurting herself) she says we hurt her, that we hit her or pushed her or pinched her. We could tap her and she acts like it is the end of the world. Is she being overly dramatic because of the state she is in or is her skin overly sensitive
 to whatever is going on and that's how it really feels to her? I have no idea. She will come out of these fits as quickly as she goes in them. Sometimes she slowly comes out and sometimes she just snaps out. This picture of her cuddling pooh bear is five minutes after she was standing in my face screaming at me that I hate her, I never listen to her and she's never listening to me, EVER AGAIN! Then she sat down cuddled pooh bear and started watching a movie. Within two minutes of sitting down, she was happy, smiling, and laughing at her movie. Meanwhile, I was still worried that our neighbors were going to call the cops on us. All you can hear is her screaming and it sounds like she's hurt. REALLY hurt. Every once in a while you'll hear us yell back STOP or don't do that because lately she's not just screaming, she's hitting or kicking too. I'm just at a loss. This is not the way my child has always been. This is new and different, really different. It is not that she is just being bad. Most of the time when she comes out of it, she doesn't remember everything that happened. She insists she would never hit us or kick us. She's really sorry and apologizes for what happens but she doesn't really remember it. Recently she told me she just gets SO angry and she can't control it. She doesn't know why she is angry, just that she is. She's always crying that she's bad now and she doesn't know why. We reassure her constantly that she isn't bad - something is going on and we just need to figure it out. There is just so much going on and I just don't know how to put words to it all. It's horrible and heartbreaking. She's such a good girl and then she's someone different.      While we were in NY camping, we got the call from the Neurologist. They gave us an appointment on August 9th (tomorrow). Unfortunately, Tyrone won't be able to go with so I'm going to have to go by myself. So along with all of the above, I need to talk to the Neurologist about this:
     Before we left her last appointment they had told us to continue to keep track of her headaches. We started her medicine that night. After two nights we noticed that about 40-60 minutes after giving her the medicine, she would get up and start a fight with us. She would get up and say we didn't cover her right, or she needed more water, etc and if we talk to her at all she goes into one of her fits. We give her the medicine as she's laying down so it's not like she is playing and then this happens. She's laying down then gets up and starts having a fit. This happens almost every night. While we were camping she fell asleep one night before we could give her the medicine and that is the only night there hasn't been a fight. Most of her headaches lately have been due to having a huge fit, then she needs medicine because she's been screaming for a half an hour and her head is pounding. She doesn't often have headaches during the day, we also haven't been out playing outside either and that was often something that brought on headaches. However, just to note it - every time she is outside and it is sunny her head starts hurting. Other than sunlight, light doesn't seem to bother her.
     Here are the days she's had headaches since the last appointment:
July 14th:
     headache in the afternoon - 20 ml Ibuprofen
July 15th:
     9:50am - advil
July 16th:
     10:50am - went away with rest
     3:45pm - advil
     11:30pm - doesn't want medicine
July 19th:
     afternoon headache - 20 ml Ibuprofen
July 22nd:
     afternooon headache - went away with water and rest
July 23rd:
     afternoon headache - refused medicine. Ended up taking a nap because she got bit by something and needed Benadryl because of a reaction. Woke up with no headache
July 26th:
     2:00pm - headache "is 100%" - 20 ml Ibuprofen
July 27th:
     4:30 pm -  20 ml Ibuprofen
July 28th:
     8:30pm - 20 ml Ibuprofen
July 29th:
     11:30pm - 20 ml Ibuprofen
July 30th:
     1:50 pm - 20 ml Ibuprofen
     10:25 pm - 20 ml Ibuprofen
August 1st:
     10:00pm - headache but wants sleepy time tea and lay down to get rid of it
August 3rd:
     night time headache after fit - 20 ml Ibuprofen
August 4th:
     night time headache after fit - 20 ml Ibuprofen
August 7th:
     night time headache after fit - 20 ml Ibuprofen

     She's had a few days without headaches but she's still having at least three headaches a week. I don't know if this medicine is the right medicine for her but then again I'm not convinced these are migraines.

Keep us in your thoughts and prayers!

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