Chest Pains and ER Visit

As we were on our way home today, Keeg started to have chest pains again. Whereas the chest pains he's had before only lasted arpx 5 minutes, this one didn't go away. He started out having a sharp pain in his lower left chest. The pain then, within seconds, was also in his upper right chest. Keeg has situs inversus totalis (all organs on opposite side of body). He then got sharp pains behind his eye and an instant painful headache at the back of his head. He began to have pain in his ear and jaw. At this point in time he had turned very white and was in obvious pain. His left leg followed by his groin area began to hurt. He then flushed a dark red and told me he needed the air conditioner on. Over the next couple of minutes both legs, feet and his lower stomach begin to hurt. He described it as, "All the pain I've ever had in my whole life is happening right now at the same time." As the pain in his chest and head (the worst two pains) intensified, he became lightheaded and simultaneously weak. He felt very sleepy but said he was scared if he went to sleep he'd never wake up again. He has also been having a constant back pain that intensified.

Upon arriving at the hospital he was skipped ahead of everyone else in the ER and taken back. His blood pressure was taken upon arrival, and he was then taken back for an EKG and a chest x-ray. He was kept on a heart and oxygen monitor. His blood pressure was not taken again. He also had a blood test done to check some kind of enzyme. During his chest x-ray he again experienced sharp chest pains, but at that time he was not hooked up to any monitors.

The results of the EKG and chest x-ray, as well as the blood enzyme test, was normal. The ER doctor told me that he could go home but could not do any strenous activity. He could not run, play, experience stress, etc. He told me to call the cardiologist that he was referred to, tell them we were seen in the ER for chest pains, and that he needs an echocardiogram done immediately. He said that the fact that Keeg's pain moved to multiple places (two different locations in his chest and then other parts of his body) was a good sign and meant it probably wasn't his heart.

Upon arriving home I looked at the discharge papers I was given. It says he is to follow up with his regular doc in 1-2 days. It also says that although his EKG and X-ray were normal, sometimes "the signs of a serious problem take more time to appear". I am then told to "return promptly or contact his doctor if any of the following occur:  1) A change in the type of pain such as it feels different, becomes more severe, lasts longer, or begins to spread into your shoulder, arm, neck, jaw or back. (Considering the pain in his chest spread to each of these areas, I'm sure you can see my concern). 2) Also, shortness of breath or increased pain with breathing. He's already experiencing that as well and hospital personnel saw it first hand. 3) Weakness, dizziness, or fainting. Keeg had to have assistance getting his jacket and shoes on and had to be taken out by wheelchair due to how dizzy and weak he is. He needed assistance to get into the vehicle. He needed help getting home and due to how weak he is, he's sleeping in the clothes he wore today as he's to weak to change clothes.

It's a bit disconcerting (OK, a LOT) that the doctor felt he needed an echocardiogram ASAP but that one could not be done while we were at the hospital. It's also disconcerting that the doctor would say the pain being in multiple places is a "good sign" when the paperwork we were sent home with seems to say the opposite. It's also disconcerting that the ER doctor feels that getting a quicker appointment with  a pediatric specialist is as simple as a parent calling the specialist!  Overall, it's disconcerting that my son had the worst pain he's had in his life, and we were sent home with no answers.

Please keep him in your prayers. I am getting on the phone with each of his specialist tomorrow and insisting that they get him in with the geneticist and cardiologist immediately. I'll do whatever it takes for this to happen. Today's events, on top of what else has been happening is quite frightening. Please keep praying for Keeg.

Update Feb 13, 2012

I've been waiting to tell others about Keeg's latest issues until we saw his neurologist again. Today, we saw the neurologist.

Over the last couple of years, Keeg's health has not improved past a certain point. He stays tired and weak. Playing only a short time requires hours of sleep to recuperate. He's also moved from the 36^th percentile in height to the 76^th percentile. He is now 5ft, 81/2 inches at 14 years old.

Over the last year, his emotions have started to suffer. He is unable to identify emotions, unable to control emotions, and struggles with feeling overwhelmed. His social skills have regressed and he was recently diagnosed with Asperger's.

Over the last few months, Keeg has been losing his mental abilities. He had started doing Trigonometry at the end of last school year. Now he struggles with math he was able to do easily a few years ago. His reading comprehension has steadily gotten worse. His speech has started slurring on and off over the last two weeks. Today, he struggled to read a simple devotion. Keeg taught himself to read by the time he was 2 ½ years old.

For 4 months Keeg has had an ongoing headache. The pain fluctuates between a 5 and a 10 (on a scale with 1 being least pain and 10 being most pain). His severe migraines that land him in bed for 36-48 hours have decreased to aprx 4 a month. Keeg was prescribed Depakote to help with his migraine.

Two weeks ago Keeg started having chest pains. With his Situs Inversus (internal organs on opposite side of body) and the possibility of Marfan's Syndrome this requires a referral to a cardiologist.

As for his regression in mental and emotional abilities, I was told that this has been seen often in cases of long term immune system issues. There is no clear answer on how long it'll go on, or even how much worse it will get. Until we get him in with the geneticist, there isn't really much that can be done. We've been on the cancellation list for some time now, but still haven't gotten the call about an appointment.

The doctor did prescribe a medication today that he hoped would slow down Keeg's regression. Vayarin is Omega-3s and Polyunsaturated Fatty Acids. In addition to possibly slowing his regression, it will also help regulate his emotional state. It will help him sleep also. This medication is a good fit for his symptoms and there are no significant side effects. However, neither our CareMark Prescription Drug Insurance or Medicaid will pay for this medication. The cost is $75 a month. There is not an alternative available or a generic.

Right now, I'm completely overwhelmed. I'm supposed to just sit and wait while watching my son fall apart. How do I sit every day and see that he is getting worse and worse and do nothing? This is the hardest thing......not being able to help your child.

As Matthew West said in the song “Strong Enough”, “Hands of mercy, won't You cover me? Lord, right now I'm asking You to be strong enough, strong enough.....For the both of us.”