It’s been a while - Ethan’s update

Back in December of 2014, he had yet another surgery.  This time to staple the growth plates in both big toes because the outside part of the growth plate was growing faster than the inside.  They stapled the outside part to the lower bone to stop that growth and allow the inside part to catch up. His big toes were growing under all of his other toes.  September 2015, we are still waiting for any results.  I can’t see any improvements.  I will take him back for that checkup soon.  As far as his tendons, they are still very very tight with limited mobility. He continues to have no ROM from side to side and limited upward.  He is still playing travel baseball and football.  Keeping his strength in his legs and flexible has made all the difference in the world.

5 Responses to “It’s been a while - Ethan’s update”

  1. Hi, I just finished reading your blog. No recent updates. I hope and pray everything is ok. My son is 9 and severe ADHD. You and your son have done so much work and experienced setbacks. I’m torn between surgery and none. My son is so tight his butt sticks out and he can not stand up straight with his heels on the floor. I have been telling Drs. And therapists since he was 3 that his knees are knocked, and he toe walks. They kept telling me he is just like that, Shriners even laughed at me, and I felt like a hypochondriac. Therapists said he just has a quick step return. He is also avid sports player. Now 6 years later he roller skates bent over and walks slightly bent over. He was also a W sitter and had low muscle strength in his lower body. I kept telling Drs something is not right. Now I’m searching the internet because his pediatrician says he has tight Achilles’ tendons. I’m wondering with all your setbacks if you had it to do over would you have waited until he was older to do the surgery or if you think he has adjusted so well because he is so young? Sincerely another mother like you trying to make the best decision for our children.

  2. Smlwoman- you are on the right track. Knowledge is power but be careful how you take that knowledge with you to the doctor. I have found from experience if you say things like “I found this on the internet” they shut everything you say after that out and don’t give you credibility to what you are telling them.

    Take your knowledge and ask questions. Ask until you understand completely why they think he needs the surgery etc.

    After reading your post, I tend to agree your son could benefit from help. The hard part will be as a mother being confident you are getting him the RIGHT help.

    Second opinions are always good. Sometimes it’s better to not tell them what you know because it can bias their diagnosis.

    I’ve had fibromyalgia for over 20 years. It got to the point every time I mentioned that in my history, the doctors quit looking further for the reason behind my health complaints.

    The other issue that doesn’t help is our insurance sometimes. The new rules don’t pay doctors unless they follow the diagnostic courses the insurance company dictates which cost us time and money.

    I had to do three months of therapy and not improve or regress before my insurance would pay for my spur removal. CT. and MRI’s are the same way, Therapy first.

    My oldest son, now grown, is ADHD/ autistic so I empathize with you. Sometimes because our children are different we have to push the medical field harder to get them the help they need.

    Sometimes it’s just the opposite and it feels like our children are just guinea pigs for them. Or they aren’t pediatric specialist and their methods are to adult oriented.

    I read the section of Lesleykay’s post that addressed the pain and blisters of the arch brace. To me that means IT WASN’T FITTED correctly. or it was the wrong size or something. Our splints, braces or supports are not suppose to hurt or keep rubbing. So getting an answer like she did would be a red flag for me.

    You also have to take your sons ADHD into account during recovery. It will be much harder keeping him focused and following rule restrictions. Preparing ahead of time can save your sanity. Having friends visit etc.

    If it were me, I’d also request MRI’s to be sure the problem isn’t also bone related.

    Hope this helped

  3. I haven’t updated in a while, but I still read all the replies. Please keep pushing. My mom and I were diagnosed with a muscular dystrophy called, Charcot-Marie Tooth disease. It affects the muscles, tendons, and ligaments below the knee. Mine are extremely tight and I have small calf muscles. I have a very high arch, small and narrow foot. It doesn’t affect me any as I’m not an athlete. It doesn’t hurt and mine wasn’t as severe as my mom’s. She did go have calf implants to improve the look of her legs because they were so tiny. I suspect Ethan has some form of it as it is genetic, but not all the characteristics. He has a huge amount of other issues. His toe surgery did not go as well as I had hoped, it’s still growing under his other toes (it’s been over a year), the next step is more invasive and resetting the bones and that’s something we are not prepared to do at this point.

    He is getting stronger in his upper legs which helps the lower legs, but he is still very very tight. I can’t imagine where he would be if we didn’t have it done. I am very concerned about his puberty growth spurt. We must rest him for months at a time every so often because he has small cysts that float around in his ankle fluid and he tends to get stress fractures (common with his condition). But no matter what, we pull him out of all sports and he rests (sometimes for 6 months at a time). I give him Ibprophen before his sporting activity because it helps with inflammation. The physical therapist also told us to put heat on his Achilles tendons before we stretch him (it helps to loosen them up) and after his game, ice them down (help combat inflammation of the tendon). Doing the 3 together, really helps him.

    Where are you from? I quit going around to pediatricians and podiatrists (he wasn’t improving), and he is under the care of a pediatric orthopedic physician. They will take you seriously. Please keep pushing and accept no less. I am still battling Ethan’s condition everyday. Please please keep me up to date with your son. I’m curious and I will share any updates I find out. Like I wrote, my current dilemma is to whether to take him for a check up on his toe growth plate. Next weekend starts our travel ball baseball season and this is after he had a successful football season. He certainly misses out on so many opportunities that he would get because of his disability (he runs so slow).

    [WORDPRESS HASHCASH] The poster sent us ‘0 which is not a hashcash value.

  4. If you guys have facebook, you can email me at my email address with your facebook name and you can see how he’s progressing.

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  5. Lesliekay, I hope our posts can be of some help for your son, since his condition seems extremely difficult for a young boy who loves sports. Please do keep us posted.

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