Hello, my name is Joanne Malmstedt. My Daughter Alannah’s story all began in August of 2014.
We (myself, Mom Joanne, her sister Tiara, brother Logan and Grandpa Steve) were at our State Fair enjoying the crowd, weather, foods and some amusement park rides. This was the first year that Alannah was tall enough to be able to go on a ride that she was waiting to be able to get on for years… The Stinger!
She got off the ride holding her head with her sister in a frantic. She is a very petit girl and when it flipped, spun around and changed directions on a dime, her head kept slamming against the back of the seat as her small frame just was flung around between the seat and the lock bar that comes down over head. Her sister saw and heard her head repeatedly hitting the seat and she reached her hand across the seats and tried to cushion it by placing her hand between her sister head and the seat.
Immediately Alannah felt like her head was about to explode. The sounds of the people, the music, the rides were like a knife stabbing into her head she said and opening her eyes made it even worse. We made our way slowly but as fast as we could through the crowds and as her head would tolerate. This wound her up in the emergency room with an IV full of pain meds to control the pain and appointments with a sports medicine doctor that put her through some minimal OT and PT after she had about 2 months of missed school and hibernation in the house until her headaches were gone and she could do her normal routine. Then Alannah was cleared and told to resume all normal activity.
The happy and quirky Alannah was playing with her brother who is about 2 years younger than her. They were playing with a face morphing application of his iPad and the both jumped on the couch together from different ends to make an action one and they hit heads HARD. Alannah was with a family member at this time and did not complain of any headache or any other symptom initially. It was about 5 hours later than she felt the headaches come on, she was dizzy, hard sense of balance, light sensitivity, sounds sensitivity, ringing in her ears and nausea.
This brought us back to the Sports Medicine Specialist who again put her on “rest”. No mind use, just basically do nothing to let the brain heal. This had her out of school and then back to a day here and a day there until she was headache free. Then again she was released from concussion care and told to resume normal activity.
She was so excited and happy to be “free again”. She called her Grandpa to tell him. Then 4 hours later Mom was calling Grandpa to ask him if he could go to our house for my other two kids as we were on our way back to the Hospital because Alannah had just slipped on the ice, fell backwards and cracked her head on the ice.
You could hear the impact from what seemed like a mile away. She said she initially felt fine, but within about 30 minutes I noticed her wincing and trying to hide the fact that she was not fine. She was nauseous again with a massive headache. That is when I brought her, not so willingly to the ER because she knew what was coming. The headaches and the frequency of them were much higher this time. The ringing in the ears came back and was constant. She started having some very unusual eye twitches, but they were not really just twitches. Her upper and lower eye lids would constrict as if she was trying to close them. They would close halfway and open, then close maybe a quarter of the way and then open, sometimes they would even close halfway and then both upper and lower eye lids would pulse from halfway closed to almost fully closed in the left eye and some time the right eye would do it also but not in the same pattern of the left eye.
Her headaches as she would say were actually, really bad migraines. She had never had headaches or migraines before the head injuries so she didn’t know there was a difference. Her migraines would get so bad that often we were left with no other option but to go back to the ER to get her IV pain meds to be able to relieve the pain and they did! She did not have the migraine or headache any longer, but now she was so doped up on pain meds that she couldn’t walk on her own let alone function. This time it took a long time for those migraines to lessen, they never went away. The ringing became intermittent and the sound sensitivity was almost tolerable each day but we were released from concussion care yet again.
Then she was “ok” for a little bit and we went roller skating… everyone relax, she did not hurt her head skating, she is a great roller skater. When we were leaving, she bent down at the lockers where we had our stuff to untie her skate, when she stood up she went hard and fast into the bottom of the locker door above her that someone had opened and left it open. I am sure you can guess what started again…. Her migraines were back and trying to make up for lost time. The eye lid thing was back, the ringing in her ears was back and so loud she couldn’t hear people talk. Her balance was bad, it was really bad, and often she was so dizzy that she could walk more than a few feet. We noticed memory loss was there. She would forget large parts of the day before, 10 minutes from the next, and conversations we had with her just minutes or hours before. Again, we were back at the concussion specialist with the same old routine and the same old restrictions. After she was not “getting better” they referred her to a brain injury neurologist.
We start with the neurologist and the first thing he did was throw medications at her and say that this was what we had to do. She was given a second medication after the first one made her extremely ill, then the second medication that we were promised would take her migraines away. Yet again it made her extremely ill, so they had us do one more. On the third medication, she did well with it, and we were told to “just wait and see” as to what level it will work. In terms of all the other issues we had we were also told “this takes time”, “just wait and see”. After months of “just wait and see”, I wanted answers. This neurologist told us that if we wanted answers as to why she still has the headaches, we will NEVER get any. If we wanted answers as to why she has the ringing in her ears, we will NEVER get any, etc because there are no answers and there never will be. He continued to tell us that the eye lid thing and the ringing in the ears were not relted to the head injury and he referred us to a ENT specialist and an Eye specialist for answers about them.
We see each of those specialists and they both say the structures and functions of the ears and the eyes are healthy and as they should be, they both said these are completely 100% related to the brain injuries.
We go back to the Neurologist and tell him what they said and give him their reports and he looked at us over the rim of his little round glasses and says that their report is wrong, he had already diagnosed those symptoms as not related to the brain injuries and they were wrong. He is going to write them a letter saying that and telling them why they are wrong. When I got upset and challenged him, he told me and my daughter that he was pulling her prescription for her migraine medicine because she had missed doses here and there because she would completely forget that she took pills, that she will then feel the full effects of the head injuries and that she will fail school, she will be held back, and she will fail without his help. He had been doing this for years longer than I was alive. There was no research to prove this and that and that we will never get better without him. He then went on to say that he thinks that she is making this up and it is not as bad as she is claiming it to be. Needless to say, Alannah left in tears thinking she is never going to get better, that she will fail school and that it was all her fault.
We left there and immediately requested a new referral from her Primary Doctor. This time we were referred to a very larger, well known hospital/clinic system. We were confident that there we will get help. In the meantime Alannah had received another head injury, that was diagnosed at concussion number 5. We were at a friend’s house and the kids were playing a game of hide and seek on a screened in trampoline in the dark.
She was laying against the screen on the trampoline and the person who was the seeker tripped on someone that was laying close by and fell on top of Alannah’s temple/side of her head with their knee.
This concussion left her with extreme memory loss, vision loss in her left eye, balances issues often causing her legs to buckle under her. Migraines were extreme and she often could not leave the house or her room. Her migraines would often develop into her losing complete vision and vomiting or severe nausea. These worsened migraines could only be relieved with an ER visit for more IV pain medications, leaving her not able to function until the pain meds and sedation wear off and then to start the process all over again.
This is when we were referred to that well know, big name hospital in the Twin Cities. We saw a new neurologist there and then were scheduled for OT, PT, and psychology. The neurologist worked with us and re-prescribed the medication that her previous neurologist had pulled her from. Alannah was working hard in the OT and PT programs, and seeing the Psychologist every week. When she showed some signs of improvement in the OT and PT programs they released her from care and treatment and told her to continue working from home.
We continued to see the Psychologist weekly, as she went through those appointments she became more depressed and down and was actually scared to see the Psychologist every week. As time went on we stopped seeing him as he said she needs to work at it on her own. He was very dismissive with Alannah and what she felt and actually made her scared and more things added to her plate in terms of what she was dealing with herself. This dismissal of these appointments were in the beginning of the Summer of 2016.
At this point she had missed over 80% of her 6th grade year and was only attending half-quarter days on the days that she could attend. Because of this and the fear and self-doubt that the previous doctor put in her she was scared to approach her 7th grade year. She was still struggling with daily migraines, memory loss, etc. We had a 504 plan set up for her already and knew that we would have to adapt that. As she made her way through the summer doing what she was available to do and handle, her and her older sister were being silly and making a Musically video. Alannah went left with her head and her sister was supposed to as well but instead, went right making hard and blunt contact with their heads.
This was hidden form me, as Alannah thought that I would be mad at her for not being careful enough to not hit her head again. As soon as I learned about it because I noticed her light and sound sensitivity was back in a severe level and that she was showing more pain signals in regards to her migraine, I called the doctor and they told me to just immediately go back to that big well know big name hospital and clinic. We did and they did the exact same thing that they did before. This time they had her do Impact testing, and told me that she did so bad that she didn’t even register on the scale for the results. She did OT and PT again and they spoke of how they noticed a change for the worse in her abilities from when she left before.
We started meeting with the Psychologist again, and he told me that he was not shocked that she hit her head again. I asked him to clarify that statement and he said that he knew she was nervous about starting school again and missing so much before and that her hitting her head and needing medical care again is not shocking to him. I asked him if he was saying that she intentionally hit her head and he said “it’s not a shock to me”.
The Neurologist told us that her goal was to get her off of concussion care as soon as possible. I asked about the fact that they were treating her as a single concussion case and not looking at her as a whole in terms of her head injuries and all of the thing that she is suffering with. The Neurologist said that she didn’t how to approach Alannah’s head injuries because she does not follow a “pattern”, A doesn’t happen and then immediately B and then C, etc.
They said sometimes her ears will ring without an increase in her migraine, sometimes she will get her vision issues and it is not followed by light sensitivity but sometime it is. They couldn’t nail her symptoms down on a plot line so they decided as a team that she is creating all of these symptoms in her head. The pain is not real, the ringing in the ears in really not there and the memory loss seems to be something they think should have gotten better long ago. The migraine that has not gone away at all or hadn’t gone lower than a 6 on the 1-10 pain scale.
Then I reached out to everyone I know about personal experiences and with care providers for brain injury. I got very high recommendation with the Mayo. I asked my Doctor for a referral to the Mayo TBI clinic and she was immediately receptive of it. It was about 6 weeks before we could get in to see someone. Then we had 4 appointments in one day when we finally got to that day.
We were both blown away with the care and plans go forward that we had in the first appointment. Alannah did a visit with PT, a visit with OT, Psychology, Neurology, lots of blood work (which had NEVER been done before). One of the first things that we found out was her Ferritin levels were in the single digits. Alannah was sent immediately for an iron infusion and had Iron pills added to her already vast array of daily pills. They also said that the dosage that she was on for one of her daily migraine medications was extremely low and completely ineffective, so they upped the dosage to almost 4 times what it was.
She was seen by an anesthesiologist about doing a nerve block in 5 places around her head and face. The anesthesiologist said that after her examination he was not confident that it would work for her. He informed us that we could still try it, but it is extremely painful to get and he doesn’t think it will work. We were told that he suggests an electrical device called Cefaly. We were told it like many other of our options that we have tried, either works for the person or it doesn’t. This device did not do anything to help reduce the pain but it did change the pain sensation that she felt with her migraines, making them more unbearable. She was then given a second daily migraine medication and then one for “as needed” at the onset of worsening migraine (which did not work).
Alannah was then scheduled to try the Botox injections for her migraines, only to have the insurance company deny the coverage (like they had many times before with different medications and treatments) because she was under the age of 18 and that is a policy and not able to be appealed. During all this time, she was still unable to make it through more than an hour or two at school, she lost all her friends, couldn’t do anything without causing things to be worse later, missed about ¾ of her schooling in the past two years.
I could see that she was more down, I saw a change in her. I asked my friends about it and a nurse that I knew and they told me that is “normal”, she’s a teenage girl that has missed out on so much, and that is also normal for those with traumatic brain injury. I watched her closely, I knew she was off.
We had another appointment with a Psychologist. She could see that Alannah was not in a good place. Her head was always so bad and she was always in so much pain that her paying in her bed and isolating herself from the whole family was nothing new. Alannah was very brave and honest when speaking to her about how she felt, then I was allowed back into the room. This is when I learned thoughts of suicide.
The Doctor gave us some options for out-patient treatment groups and programs. Alannah was signed up for them all immediately. Our drive home was quiet with little banter. On this drive, I also learned that she has been cutting herself on her upper legs (so I wouldn’t see it) and that she had actually attempted to take her life once but stopped just after starting because she got scared. Alannah explained that she thinks about taking her own life every day because of the pain that will never go away but only gets worse most days, being told by all these doctors that she is making it up, and feeling that she was a burden on every one especially to me.
Alannah and I spent 7 weeks displaced from our home to Rochester, MN to receive treatment at the Mayo Clinic. Over those 7 weeks she did a 2 weeks depression and mood clinic called CAIMP (Child and Adult Integrated Mood Program), 1 week Intensive Anxiety Clinic, 4 week Pediatric Chronic Pain Clinic called PPRC.
These programs gave me my daughter back. Her spunky personality is back most days, even if it is only for a few hours out of that day. Alannah can better manage her pain from day to day and at least try to regain the life that a 13-year-old girl should have. Her migraines, short term memory loss, sometimes balance issues, vision issues (orbs), insomnia, depression and anxiety are all things that she still struggles with every day but she has a much more positive and optimistic outlook to life now.
She will never be the same girl she was, she will always have to work on the symptoms and issues related to her TBI, but she is stronger now and wants to live a life where she controls her pain, instead of the pain controlling her life!
Thank you for letting us join this helpful Family!
