This is a written summary of what has been going on with our daughter Paige. I know several of you have seen bits and pieces on Facebook and I wanted to take a few minutes (ok, it took a lot longer than that) and write down all that has been going on. I hope that our story will one day be able to help someone else, but maybe someone reading this can also help us.
It all started back on November 4, 2016. The day started like most, we got up and were rushing around to get things done. The kids were in a craft fair that weekend and we needed to finish things up, load the car and head down to my mom’s for the weekend. I had no idea what would come later or how this day would change our daily lives.
Mid afternoon we arrived at my mom’s house, I dropped the boys of and visited for awhile. Then I took the girls to a friend’s house to have their hair cut. We were talking and chatting when Paige all of a sudden got a funny look on her face. I asked her what was wrong and she said that her chest hurt. The funny look quickly turned to one of pain and then one of panic. I asked her if she needed anything and she could barely respond to me. I walked her outside and sat her down, hoping that fresh air would help. She started crying and trying to rip her shirt and bra off because the pain and pressure and in her chest was so great. I noticed that she was starting to sweat and her head and chest were really clammy. Her color was completely gone, even in her lips, but she had red splotches going up from her chest to her neck and face. The splotches were like hives but they weren’t raised. Paige was not starting to shake uncontrollably and not responding to my questions. My friend got a rag for her head and we tried to get to drink some water, but she wasn’t responding to us. At this time I knew something was wrong and we needed to do something. I called my sister (who was at my mom’s with my other kids) and my husband and told them I would be taking Paige to the local ER. However, by the time I got done with those phone calls her condition was of such that I felt a call to 9-1-1 was more appropriate. The elapsed time from the chest pain til now was about 5 minutes.
I made a call to 9-1-1 and shortly thereafter the paramedics and ambulance arrived. After a short time of monitoring they decided to transport to the ER. Her breathing was shallow and rushed, her heart rate was three times normal and she wasn’t responding to commands well. She knew her first name and how old she was, but that was about all she could communicate and it took her while to get those few words out.
We arrived at the hospital about 25 min after the first symptom and by the time we saw the doctor she was feeling better. Her heart rate was still elevated, but wasn’t alarming. They had her on oxygen and IV and she was starting to be more like herself. After a normal blood panel, urine test and CAT scan and some meds to calm her heart and relax her, we were sent home with orders to see her primary doctor. (which we discovered was easier said than done)
Saturday November 5 she was super tired. She did go to the craft fair to sell her goods, but she had to sit most of the time. She was very weak and didn’t want to eat much.
Sunday, November 6 she slept almost all day. She just had no energy at all.
Monday November 7, she is getting a little more of her energy back. She has on and off chest pain.
Tuesday November 8, she had chest pain so severe she was crying
Wednesday November 9, she had a good day. No chest pain and normal energy
Thursday November 10, she had a small episode while walking at the National Cemetery. She was short of breath, light headed and dizzy. She needed to sit down and couldn’t continue walking. She also was very pale and it took her a very long time to recover from the walking.
Friday November 11, she was very tired today.
Saturday November 12, today started with her feeling ok. She was mildly tired, but overall felt good. We went to go meet my family who was camping and she felt she would be OK to go. She walked a little bit and played corn hole with my dad and tolerated it all well. In the afternoon she had another large episode, like the first one. This one lasted longer, closer to 25-30 minutes and the shaking and jerking was much more violent. She was again taken by ambulance to the ER and by the time she got there she was back to ‘normal’. They said she had a panic attack and sent us home.
Sunday November 13, she slept almost all day
SAW DR AROUND THIS TIME AND THEY STARTED SCHEDULING LOTS OF TESTS.
Sunday November 20, she had one spell of chest pain that lasted about 2 minutes
Monday November 21, good day. No chest pain, no dizziness, was able to do a little yoga!!
Tuesday November 22, Today she had what she said was a different heart beat; she said it was like it was really strong and trying to get out of her chest. Dizziness was mild today.
Wednesday November 23, she had a really bad headache today that we could not get rid of with anything we tried. She was also very light headed all day. She could barely walk or move without assistance. In her journal she wrote “I felt like crap today”
Thursday November 24, She didn’t have any chest pain today, but she did have what she described as a fast heart beat and flutters. She was a little dizzy, not nothing like yesterday. She still had her headache, but it wasn’t severe.
Friday November 25, this was a pretty good day!! No chest pain, not tired and very little dizziness occasionally. She did have a little headache, but not severe.
Saturday November 26, no chest pain at all. Energy level was good with occasional dizziness. We were able to go out and go shopping and she tolerated it reasonably well.
Sunday November 27, GREAT DAY!!! No headache, no dizziness, no chest pain.
Wednesday November 30, still feeling good. She did a little walking today and tried a little yoga.
Thursday December 1, minor chest pain. No dizziness. She wrote that she was ‘annoyed’ this day, because her stickers on her monitor wouldn’t stick. J
Friday December 2, good day
Saturday December 3, no chest pain, energy level moderate and slight dizziness. She was able to go roller skating with a friend for a little while. She wrote that she was feeling GREAT today!
Sunday December 4, no chest pain today, but she did list a fast heart beat. She was dizzy today but not tired. She wrote that she was feeling ‘fine’ today.
Monday December 5, no chest pain, energy level is ok, no dizziness today but she did have a headache. She wrote that she was feeling ‘fine’ today.
Tuesday December 6, no chest pain, energy level ok, mild dizziness, still have a headache.
Wednesday December 7, she started doing yoga again today since her dizziness has been mild. She didn’t have any chest pain but she was a little tired. She still had the headache and at times it is severe.
Thursday December 8, for chest pain she wrote ‘not really’ instead of yes or no. She wasn’t dizzy today and had moderate energy level. She still has her headache but it is getting a little better. She wrote that she ‘feels like a sloth’ today.
Friday December 9, no chest pain, good energy level, no dizziness and her headache is gone. She was able to do 45 min of yoga today and she said that she was feeling ‘fine’.
Saturday December 10, no chest pain, no dizziness but really tired. Her headache is back and she wrote that it ‘is really bad’ today. She also said that it ‘felt like I got hit by a truck’.
Sunday December 11, no chest pain, very tired, kind of dizzy. She said it felt like her head was going to explode today!! When she writes how she feels, today she wrote ‘lazy butt’!! She makes me laugh
Monday December 12, No chest pain, no dizziness, regular energy level.
Tuesday December 13, no chest pain, no dizziness, not tired, no headache. Today she was preparing her goods for another craft fair
Wednesday December 14, some moderate chest pain in the afternoon, no dizziness or headache. Around 5 she had a mini episode. She said she felt funny and collapsed in my arms. I got her outside and her breathing was erratic and she said her chest hurt. I got her to remain calm and got her to our van. She had another brief period of moderate/severe chest pain in the van.
Thursday December 15, today she had her stress test. She was able to run for 12 minutes. She said it took everything thing she had in her, but she was able to do it. After the stress test we went to my moms and she was fine there. However, at dinner she had one of the small spells where she felt funny, had moderate to severe chest pain and collapses. Her breathing was shallow but she was responsive. It took about 5 minutes to feel better. She was pretty light headed and dizzy after this,
Friday December 16, for chest pain she wrote ‘kinda’ for today. If I remember correctly it was off and on throughout the day. Her energy level was ok, no dizziness and no headache. She had more blood work done today and she tolerated that well. She wrote that she was feeling ‘funny’ today. She blacked out and collapsed at home today. She didn’t pass out, but she lost control of extremities for a short time.
Saturday December 17, Chest pain wrote ‘minor’, fast heart rate she wrote ‘yes’, tired ‘yes’, dizzy ‘kinda’, headache ‘no’. She had another large episode this afternoon. We were visiting family for Christmas when she said she started to feel funny, she went to stand up to come to me and she collapsed. She said she had chest pain and tightness. This episode was like the others, shaking, wrenching/jerking movements, her hands and feet were freezing while the rest of her was clammy. Her eyes were rolling around in her head and her eyelids were fluttering. She could not open her eyes to look at us. He pupils were dilated. She was coherent but not responsive. This episode lasted about 20 minutes. After the episode she could hardly stay away.
Sunday December 18, for chest pain she wrote ‘?’, no dizziness, moderate headache and very tired.
Monday December 19, Moderate chest pain off and on, pretty tired, slightly dizzy and a severe headache.
Tuesday December 20, no chest pain, on and off rapid heart rate all day, very tired, very dizzy all day. She wrote that her headache was severe, like her head was going to explode. Nothing we tried brought any relief. She also had a severe upset stomach. She was able to eat very little and drank even less.
Wednesday December 21, no chest pain, heart rate normal, tired a little, dizzy ‘YES’, severe headache and severe stomach pain. She has hardly eaten anything and can barely stand up straight with the stomach pain.
Thursday December 22, no chest pain, hear rate normal, very tired, very dizzy, severe headache, severe stomach issues. She hardly ate anything again today.
Friday December 23, no chest pain, very tired, very dizzy, severe headache, severe stomach ache. She even added a few ‘!’ after bad in her journal. She has been nauseas all day but can’t throw up.
Saturday December 24, chest pain YES!, very tired, a little dizzy, she still had a headache but it was not as bad, her stomach was better, no nausea.
Monday December 26, chest pain YES!, extremely tired, pretty dizzy. Very unstable on her feet today. She had a mild headache. Her stomach seemed to be better today, but she didn’t want to eat anything still. We went to a hockey game in the evening for my son’s birthday and she needed lots of help getting around. We almost didn’t go, but she didn’t want to disappoint her brother. She had a small episode of feeling ‘funny’ and lightheaded and blacked out for a minute and got the red splotchy spots all over.
Tuesday December 27, a little chest pain, not really tired or dizzy. All in all this was a pretty good compared to the past few weeks.
Wednesday December 28, Light headache, but other than that she was fine.
Thursday December 29, she woke up feeling terrible today. She can’t eat, her head hurts and she is dry heaving all the time. Her energy level is very low. We drove to my mom’s today for her appt tomorrow and she felt ‘sick’ the whole way there. She got out of the car and was constantly dry heaving. We got her into the house and I could tell that an episode was coming. This is the one we recorded. It lasted about 15-17 minutes and was similar to the others. She didn’t shake and jerk as violently, but all the other symptoms were present. She didn’t eat much today
Friday December 30, her color was great today but her energy level was low and she was kind of dizzy. The morning was ok, but by the afternoon she was pretty bad. She has a small spell where she felt funny and blacked out. She was pretty dizzy before and after this and really tired.
Saturday December 31, tired all day. No real chest pain. Slight headache. Stomach was ok but she still had the dry heaves. She had another spell where she blacked out and lost ‘control’ of her body. Meaning, she couldn’t sit up or move her legs and arms. These spells seem to be happening more and last a little longer. She loses her color and gets splotchy before these spells happen usually.
Sunday January 1, she was really tired today. She needed help to walk because she was unstable. She had moderate nausea and didn’t want to eat anything. She had a slight headache.
Monday January 2, she was really tired today and had slight dizziness. She was able to eat and drink fine today and no headache.
Tuesday January 3, today was an OK day. No real issues.
Wednesday January 4, today was an OK day, no real issues
Thursday January 5, she is really tired today and constantly dizzy. She needs help to get around because she is so unstable. She is having a hard time eating again. Her stomach hurts and she dry heaves. Slight chest pain.
Friday January 6, today was not a good day. Slight chest pain, rapid heart rate, very tired and dizzy. She seems to black out more frequently and falls or slumps over when she does. She can’t eat much due to the nausea and the gagging.
Saturday January 7, another bad day. Slight chest pain and tightness, VERY tired, dizzy and unstable. She can’t stand for very long and needs help walking. She is gagging all the time and dry heaving. She has a slight headache.
Sunday January 8, terrible day. She can’t eat anything; she is very dizzy and unstable. She is gagging and dry heaving almost constantly. She is very tired. She wanted to get out of the house so we went to the store, but she needed help walking and had a spell in the store, so we had to help her to the car.
Monday January 9, not a great day, but not terrible. The gagging as still there, but not constant. Minimal dry heaving. Minimal chest pain. Still pretty tired and dizzy.
Tuesday January 10, great day! Energy level isn’t what it can be, but no real dizziness and she was able to eat without gagging. No dry heaving today.
Wednesday January 11, another really good day!
Thursday January 12, and another good day!!
Friday January 13, could we really have 4 good days in a row??
Saturday January 14, I guess 5 days was too much to ask for. She has a headache today and is very dizzy! She needs help walking. She can’t eat much. She has had tightness in her chest today, not real pain. She had some moments of ‘blankness’ today. She would look at me but could not answer me.
Sunday January 15, moderate headache today and the gagging and dry heaving is back. She needs help walking today as she is very unstable. She blacked out today and slumped to the ground.
Monday January 16, the dizziness and being tired is at an all time high today. She can hardly walk unassisted, she isn’t eating again, and the dry heaves and gagging is more constant today. She blacked out twice today and slumped to the ground.
Tuesday January 17, I woke up to Paige in the bathroom crying today. She was dry heaving and dizzy and felt terrible. She begged me to cancel her appt for today. She had no energy and she blacked out and this time she could not see at all after she came to and she also lost her hearing. This really scared her. She didn’t eat anything today; we are down just over 8 lbs since this all started. We had a terrible appt today; the doctor was neither nice nor helpful.
So this is where we are today:
All labs have come back normal, even Lyme and thyroid tests. MRI was normal. CAT scan was normal. Stress test was normal. Echo and EKG were normal. 30 heart halter was normal; it only caught a few occasional ‘extra’ beats or irregular beats. But they were under the thresh hold, so it is considered ‘normal’.
Her primary doctor basically washed his hands of her and said he ‘isn’t smart enough’ to know what is wrong and he will leave that to the specialists. He ordered the labs we asked for and an MRI and said to follow up with the specialists.
Cardiology said that her EKG, Echocardiogram and Stress Test were all normal, therefore the chest pain isn’t heart related and we need to see neurology for possible seizures. And one assured me there is NO way this is Lyme, even though she has several very strong markers for Lyme.
Neurology says that the MRI was normal and the 4 minute neuro exam they did was normal. We have an EEG tomorrow and if that also comes back normal, the neurologist suggested we see a psychologist because this is either depression or in her head. Needless to say, this did NOT sit well with me. She did offer us medication to make Paige ‘feel better’ if we wanted it. But not knowing what is wrong, why would I take medicine to cover up the symptoms?
All the while I have a child who has lost over 8 pounds in 6 weeks. She is less than 95 pounds now and she is 5’8’’! She can’t/doesn’t eat most days because of the nausea/gagging/dry heaving. She is blacking out more often, sometimes a few times a day. She always falls over or slumps to the ground when this happens and I’m afraid it can lead to a severe injury. She is always dizzy and lightheaded, can’t stand for any length of time, and needs help walking if more than a short distance. She still has chest pain off and on and sometimes she tears up it is so bad. She is also having chest tightness. The migraines come and go and when they come they stick around for a few days at a time. Her concentration level is at a negative 2 compared to before. She isn’t sleeping well at all and is always tired. She has had 4 major episodes since the first of November and 6 or so smaller ones.
Before November 3 she was doing yoga for 46-60 minutes a day, she was running with her brother and was at a 7 minute mile, she could run on the treadmill for 45 minutes at a time, she was doing box jumps onto a 3 ft box, she was doing 100 sit ups at a time, she was flipping a 130 pound tire up and down my driveway and she was starting weight lifting. She was active and energetic. She was preparing for and looking forward to joining the sheriff’s explorer program this year. She has always been food conscious and watched what she ate, but she was able to eat. She probably had 2 headaches in her life before the migraines have started. She probably threw up 3 times in her life before this all started. Her quality of life is probably 30% of what it was in early November.
We are told it is nothing life threatening because she hasn’t died yet. We are told she is stable because she is able to walk, talk and eat…even though severely decreased. We are told her heart is fine because she ‘rocked the stress test’ even though she is still having chest pain and her activity level is significantly decreased. We are told that her episodes aren’t seizures because the movement isn’t ‘patterned’ or ‘rhythmic’ enough. We are told by one doctor it is probably panic attacks while two others say it isn’t. We are told by one doctor she has an occasional fast heart rate and it leveled out after medication and two others say she doesn’t. We have one doctor say it ‘could’ be something like POTS even though the heart monitor didn’t catch fast heart rate and another days no way. One doctor says he thinks it could be more autonomic dysfunction and two others don’t agree. One doctor is worried about her significant weight loss and another days not to worry about it.
We are at a loss. We don’t know what to do or where to turn. I think I cried enough yesterday to end our drought in California. I threw a hissy fit and yelled and cried at my husband. I sometimes feel like giving up, but I quickly wonder how Paige must feel?? She is the one dealing with all of this physically. And for that I MUST continue to fight.
After the EEG tomorrow I think our next step will be seeing a more natural practitioner, someone who will see Paige as Paige and treat all of her symptoms. Someone who will listen to us and understand her decreased activity, not just that she passed the stress test. Someone who will understand that Paige is NOT depressed (you should see her journal, which she shared with me for the first time today, you will totally understand that she is NOT depressed) and someone who believe these symptoms are happening and not think they are in her head. Paige is a strong personality, she is a fighter, she is the one that always wants to be the best and do the best. She is NOT one who would be doing this for attention. Her idea of attention would be joining the explorer program the same time as her brother joins the Air Force and KILLING his times in her physical testing. THAT is who Paige is and I need someone who will see that!!
Please continue for Paige, that she will have the energy and mental toughness to fight whatever is going on inside of her. Pray for her dad and me as we navigate through these doctors and appointments and try and find someone who can treat our daughter. And pray for the other kids. This has been a trying time for everyone. They have to pick up the slack while Paige is down and we are gone at appointments. They also worry about Paige and that is hard for them.
We appreciate the words of encouragement, those that have sent cards and care packages to Paige, those that drop me a note and encourage me to keep pressing on and of course all of the prayers. I think that is ALL that has kept me going the past few weeks. So thank you! From all of us, we appreciate you!
I have a video of her most recent video on YouTube, if you want to see it I can share the link, but I won’t post it publically.