Important Update…

For starters..I have the best friends and family in the world.  I had an overwhelming response of support from all of you when I posted the blog about my son.  I wanted to tell you what we learned today at Shriners Hospital.


I will let the good news out first…NO MORE PERTHES!!!



When I initially got the x-rays from Mercy Hospital, the explanation I received stated there was evidence of necrosis of the left femoral head, indicative of an ischemic disorder possibly Legg-Perthes Disease.  Then, I got copies of the x-rays, and when you look at the left femoral head, you can see that it is smaller than the right.  To you…my readers…whom I feel confident in saying none have had a child with a previous instance of this disease, this might seem strange, and you would perhaps be able to wait to go to the doctor and see what he/she said about it.  Well…NOT ME.  Here is the best advice I can give to a radiologist who doesn’t regularly see Perthes patients…DO NOT PUT THE WORD PERTHES ON THE X-RAY READING FOR A CHILD WHO HAS PREVIOUSLY SUFFERED FROM PERTHES UNLESS YOU ARE 110% SURE THAT KID HAS PERTHES AGAIN.




You see…what happens then is the concerned parents of said child have a list of items now:

  • An explanation of the x-ray with the words “indicative of Perthes”
  • A copy of said x-ray
  • The GD Internet.
  • Insomnia
  • The ability to make themselves and everyone around them crazy with worry.



Turns out, the boy had Perthes in his left leg back in 2005, not the right leg as I inaccurately remembered.  I don’t know where his medical records are from that time, that was a completely different lifetime, not to mention 2 houses and a new husband and kid ago.  So when the boy said it was his right leg before, I believed him.  FAIL… it was always the left leg.  The boy also said (which I dismissed as wishful thinking) that the x-ray from Mercy was wrong because at Shriners they had him to stand up for x-rays, and at Mercy they had him lying down.  That DID in fact make a world of difference, because the x-ray they took today at Shriners looked a lot different than the one we got from Mercy.  The reason he limps?  Simple.  The femoral head is still immature, and still regrowing.  The boy doesn’t grow as quickly as other kids…hmmm…wonder where he gets that from?  That’s a mystery.



After meeting with a physical therapist, we were given a list of exercises he can do twice a day at home to improve his muscular strength in the left hip, which in turn will make his gait less wobbly and prevent him from overcompensating for the smaller femoral head with his limp.  When it was all said and done, I felt a combo of three emotions…1.)  Relief  2.)  Foolish for letting my emotions go crazy and for worrying everyone for no reason 3.)  Pissed because I feel like I was given inaccurate information.  I am already over the pissed part because I know now that my boy is fine.  No need to worry another second about it.  Nobody is mad at me, so making others worry isn’t as big a deal as I thought it was.  I don’t suffer from Munchhausen By Proxy or anything crazy.  Turns out I was a tad on the paranoid side, but I was also just trying my best to take care of my sonny son.



So for all of you who felt my pain, prayed, sent good vibes, called, got me flowers, or just sent your heart out to us…Thank you.  One big enormous thank you to all of you for your empathy.  I appreciate the concern, and I apologize if I caused undue stress.



Now I must go, I have a date with a curly-haired 4-year old.  We are going to play squinkies.  :)



With all of my heart and half of my liver…



I admit it, I am a slacker when it comes to blogging, or anything else for that matter. I don’t want to make excuses, but here goes…I am a working mother of three. I have a full-time job and three kids at home. Turns out, those spoiled children of mine expect to eat EVERY SINGLE DAY and they also want to spend time with me. Yes, they are selfish little ingrates. All kidding aside, I need to find the time to write blogs. I have no less than 3 notebooks I am currently writing in, but speaking of ingrates…none of the people who read my blogs have access to said notebooks, so I have been gently nudged by my biggest fans to write a blog.



My son is going to turn 14 at the end of April. He is my first born, and my first TRUE love. He and I have a special bond, as most mothers share with their sons. I love all three of my children in equal, however they all bring to me their own fashion of joy/entertainment. Lately my son is the one who needs me the most. Thirteen is a tumultuous age, and he has reached this age with the lion’s share of struggle. He has had some health issues along the way. He isn’t the kind of kid who likes the attention that comes along with those issues, he is private and chooses to blend in, not stand out. He isn’t a hypochondriac as I have been accused of being, rather he tells me to chill out and stop worrying so much.



Since he was my first born, being a young mom I had many worries, some justified, some not. An example of unjustified…my fear of SIDS (Sudden Infant Death Syndrome) could most accurately be described as “unhealthy”. So much so that when my angel baby was about 6 months old…I went to the doctor and somehow convinced them that I needed some sort of apparatus to strap to the boy while he slept, that could monitor whether or not he stopped breathing. Believe it or not, they make such a device and it’s called an “Apnea Monitor”. Each night, I would attach this VCR sized box to my son, tethering him to it by two flimsy cords, then put him to bed and wait. Wait for what you ask? Well I was waiting for modern science to prove that I was not paranoid, and that my son actually stopped breathing in his sleep. Turns out, the monitor wasn’t all that accurate, so when the boy would move around, even in the slightest way, the damn thing would go off. It didn’t have a volume adjustment knob, and it was designed to wake you up in case of an emergency…and let me tell you IT WAS LOUD. The only way to make it stop, I found, was to wrap it tightly in a couple of towels and blankets, then take it outside and place it in the trunk of my Dodge Stratus until morning when the batteries went dead. It was then that I decided to try to be less paranoid and really only take him to the doctor when I REALLY thought something was wrong.



When he was 3, I noticed that he was (aside from being very portly) having some breathing issues. He would run to me while we were playing, and I noticed his lips were blue. So I loaded him up in the car and took him to the doctor again. The doctor actually found that he had a heart murmur. We then went to a cardiologist for a series of tests on his heart. It was there that we learned he had a bicuspid aortic valve. In other words, instead of the three “flaps” that open and close, his aortic valve has only two, leaving an opening in the valve where blood can dump back into his heart when it is supposed to be pumping out. This can be a life-threatening issue, however so far his has not been. He has to go back to the cardiologist every 3 years to monitor the issue to make sure it has not grown or changed, the danger is that, if strained, the valve could rupture, and that would be bad news. So far he has no restrictions and has had no side effects or medications for this issue.



When he was 4 1/2 – 5…he complained that his leg hurt. He began to limp to compensate for the pain he felt in his right leg. I loaded him up in the car and took him to the pediatrician. They dismissed it and said it was “growing pains”. I believed them. But it kept on for 6 months and wasn’t getting any better. My wonderful parents-in-law told a friend who knew a friend who was a Shriner, and told us about Shriner’s Hospital. Lucky for us, there is a Shriner’s Hospital right here in St. Louis, so we got an appointment and went. We found out that he had a disease called “Legg-Calve-Perthes” in his right leg. They showed us the x-ray of his hips, and it was plain to see that the top of his right femur was gone. Not smaller than the left, but GONE. This disease consists of lack of blood flow to the femoral ball (ball-shaped cartilage at the top of the femur that fits directly into the hip socket) causing the femoral ball to go through necrosis (dissolve), then the blood flow gets “turned back on” and the femoral ball rebuilds itself. There is no rhyme or reason to it, the scientific community is seemingly baffled by it, but it’s very real. The treatment for this disease can be as drastic as surgery, and as easy as a removable cast that keeps the femur inside the hip-socket, so that when the ball starts to reform, it takes the nice, rounded shape (like a jello in a mold) of the hip socket. We were lucky, we didn’t have to endure surgery. We were given a removable cast for both legs, it kept his legs apart using two metal bars and he was in a “split” – legs spread wide apart, and he was confined to a wheelchair for just over a year. He had to do everything in the brace. We were told not to let him walk one step outside of the brace. He was not allowed to walk, much less run, jump, or play on the monkey bars (his most favorite thing). Each month, we went back to the hospital for x-rays, disease monitoring, physical therapy (which we also did twice a day at home) and the prognosis was good. By the time they actually found the problem, his femoral ball was pretty much pulverized, which meant we were on the downhill part of the process, regrowing the bone. It was not easy, but is was not as hard as it could have been. Lifting the wheelchair in and out of the car, making a 5 year old do physical therapy exercises twice a day…it wasn’t cake. We took the wheelchair in for show-and-tell and all the little kindergartners clamored to be the one who got to help him each day. He spent all summer in the brace, he had suntan lines on his legs from the straps. While all the other kids played on the playground and swam at day camp, he sat in a wheelchair and watched. In efforts to find something he could do from the chair, I bought him art supplies, markers, books, puzzles…but what he wanted was a Gameboy. I succumbed to the pressure and got him one, and now he is a gaming fool to this day.



He was done with the whole thing by the middle of first grade. I look back on it and think “How did we ever get through that??” The answer is…we just did it. At the end of the visits when we were told he could run/jump/play again, we were told that this disease could reoccur bi-laterally, meaning it could happen again in the other leg, but he would be out of the woods by the time he was 12 years old. What a relief! We made it through a very tough time, and now we know how to count our blessings and be thankful for what we have learned. The doctors said he would probably still have the habit of limping, probably more noticeable when he is tired, but could have unrestricted play. That was the best news ever. I remember the day we WALKED together into his school in first grade. His teacher cried, I cried…it was quite a memorable day. No more wheelchair! I can never thank Shriner’s Hospital enough for all the wonderful things they did for us. Each time we went, he got a toy, and one for his sister. Believe it or not, they thanked ME for coming to them. They told us that without us, their philanthropy goes to waste. I didn’t pay one cent for any of the treatment he received. I watched him walk (more than any other mom watches their kid walk) like a hawk until he was 12, probably a little longer. Just to be sure we were done. He made it!



I still take him to the cardiologist every 3 years, so far he has not had any bad side effects from the heart murmur. He was diagnosed with ADHD without hyperactivity in fourth grade, which he takes a low-dosage of daily medication to remedy, and it seems to be suiting him just fine. He is short like me, and funny like me. He wears his heart on his sleeve and wants to be noticed, but doesn’t want to pursue anything because then people expect shit from him…like me. So this past holiday season when I started to notice him limping, I thought that he was tired, he had been staying up late a lot and when he is tired, he goes back into that old habit of limping like when he was 5. I asked him about it and he said that his leg had been bothering him, but he slept on it funny, so he kind of dismissed it. I thought to myself, “SELF…don’t be paranoid. He is out of the woods now, he’s nearly 14, and there’s no way he has Perthes again.” But just to be safe, last Monday I took him to the doctor to have a hip x-ray. You know, you never can be too safe. I admitted to the doctor when I was there, it was 90% paranoia on my part. The doc said he would go ahead and do it, and he also did a bone-density scan on him to see how tall he would be when he stopped growing.



Doc called me on Taco Tuesday, I was cutting up chicken for tacos and he said “We have some good news! From the bone density scan, we determined that he will grow to be 5’9″ tall!” Now I know that might not sound very tall to you, but I am 4’11”, so that’s what the boy is up against. It sounded awesome to me. Then he said, “Now we have some not-so-good news.”



My heart sank.



I can’t tell you exactly what the doctor said, because I stopped listening after I heard “…in the left femoral ball, persistent with symptoms of chronic Legg-Calve Perthes Disease…”



He has it again.



I think the only word that came out of my mouth was “FUCK”. Does that seem immature or unprofessional to you? It did to me too, in hindsight. But no other words could form in my mouth. Immediately in those 20 seconds, all of the following thoughts went through my mind:



He is supposed to be past this, he is almost 14!
How am I going to tell him?
I hope they don’t put him in a wheelchair again!
I don’t know if I can do this! <-selfish
I am selfish…how can I think of myself?
My poor son. How is he going to handle this? AGAIN??
Another year of Shriner’s visits, 1 day every month, all day long.
I am going to lose my job.
I can’t send him to school like this.
I can’t believe this.
I can’t believe this.
I can’t believe this, it can’t be happening.



Those were my thoughts. My only word was “FUCK”.



I somehow mustered up words to ask the doctor to send the test results to me via the hospital messaging system where I can log in and view my children’s medical records. I needed to read it, and be able to make sure he said what I think he said. I thanked the doctor, (whom I am always very candid with, and he with me…so he was not offended by my reaction) then hung up. I told my husband. I called my ex-husband. I lost it and started crying. I told his grandparents who were at my house for Taco Tuesday. I cried some more. I tried to log in and view the results, but the system was jacked up so I had to call customer support. I was still unable to view the results. I cried. His father and I decided not to tell the boy about the news yet. We decided we would try to get an appointment at Shriner’s, then tell him there together when we have a prognosis and a plan.



The next day, the doctor sent me the results, and as much as I tried to deny it, it’s real. I went to the hospital and got a copy of his x-ray…then I came home and looked at it…and boy was it real. I called Shriner’s and made an appointment. We are scheduled to go in this Thursday, two more sleepless nights and one more workday.



When I got the x-rays (they are burned onto a CD, they no longer do films) my husband made a copy for the ex, and he came over, and together we told the boy. He seemed to handle it better than I thought he would. He was in denial a bit, thinking that the x-ray was inaccurate because of the way he was resting on the table…but when his dad left, and the reality set in…he cried. He doesn’t want to do it again. He offered to have surgery, anything but the wheelchair and the brace. I felt helpless. I still feel helpless.



Since then, I have done the opposite of what I should do. I have gone online and read every piece of literature I could find regarding Perthes Disease. From what I have seen, there are only two ways in which the prognosis is not good. One – the patient is female (all clear there). Two – the patient is over the age of 10. I have read virtually nothing anywhere showing a case of Perthes in a person over the age of 10. Chronologically, he is almost 14, physically, he is 11 1/2. I have read that by the time he is 50; he will likely have hip-replacement surgery, likely in both hips. He will almost certainly have osteoarthritis in both hips. I haven’t shared any of this with him, because there is no need to worry him with it. My M.O. now is to get to Shriner’s and find out what we are dealing with, then put one foot in front of the other and march forward. Just like last time.



So, there it is. I wrote something. I am sorry if I didn’t make you laugh, but this is what is on my mind for now. I will post updates as I get them. In the meantime, hug your kiddos. Support them in whatever they do, and be thankful for them and for their health.



Until Next Insomnia…