Results: Idiopathic toe walking (ITW)

Well we went and saw the Pediatric Orthopedic Surgeon today. I'm glad we went "early" because it took us 30 minutes just to go through the process of signing in, especially seeing we were "new" patients. They took Superstar's picture today too for his records, which I still don't understand why that was necessary.

Anyway to the point. The Pediatric Orthopedic Surgeon looked at Superstar today, had him walk up and down the hall several times. Check his flexibility (or lack of it in the ankle area), reviewed his MRI and EMG/NCV results and told me that is diagnosis is Idiopathic Toe Walking (ITW).

Treatment: Well there are several treatment options, serial castings, botox, braces, and surgery. Some of these options can be done on their own, some can be in conjunction with other treatments.

However I was told today that Superstar's ITW is so severe that our only treatment option is surgery. The surgeon explained that we could do the serial casting and the botox, but he strongly felt that there would only be a 5% chance of them working. So in short he felt going that route would be a waste of our time and money. Surgery, would also require casting for 6 weeks after surgery, followed by Superstar having to where an ankle-foot orthosis for several years.

An ankle-foot orthosis is basically a brace that he would have to wear. His shoes would go over the brace. Part of the reason the Dr is saying that Superstar would have to wear a brace for years,  is because of how severe his toe walking is; that if not made to wear the brace of the extend period of time that Superstar would go back to toe-walking. (At least that is the doctors opinions)

I of course still have to talk to DH about all of this and we still have to process everything that was said. We could even go and get a second opinion, something the doctor even told me today, I could do. As I mention before in order to get a second opinion I would have to drive a several hours away. There simply is not another doctor with this specialization in my area. The doctor told me today that in the few months he's been in town, that he has seen 15 other cases like my sons, that have ITW, and that we are the first ones he has told that needs surgery. The doctor told us that even though he feels there is only a 5% change of the serial casting and botoxing to work that he would still do those things if that's what we wanted to do.

This was not exactly the news we wanted to hear today. Please pray for us.

EMG Results = Pediatric Orthopedic Surgeon

Well we got those EMG/NCV test results today! The results were negative. They tested the muscles and nerves from the back down to the feet. (Negative is a GOOD THING!!) This ruled OUT any neurological issues from the back to the feet. The EMG/NCV results also stated that we should be referred to a Pediatric Orthopedic Surgeon.

As I mention before the Doctor that administered the EMG/NCV was very opinionated. One of the things he was saying is was that we needed a Pediatric Orthopedic Surgeon. (Which I'm sure that was why it was on the results). The Doctor that administered the test also said that there was NO Pediatric Orthopedic Surgeon in my area, that the nearest one would be either Chicago or Madison. (Both of which are a several hours away).

The doctor that administered the EMG/NCV also told us what he felt was causing my son's toe walking. However, his opinions would have to be confirmed with more testing. I'm not sharing those publicly on the blog because, at this point, his opinions are hypothetical. I want to share facts here because I know there a people following my blog, because their children are toe-walkers too.

Well not only did the podiatrist today share the results of the EMG/NCV, but he also told us that there IS a Pediatric Orthopedic Surgeon in town. (Thank God) This Surgeon is NEW to town, and because of that it's very difficult to get in and see him. I got the impression that he's the only one in town and in "high" demand.

So the podiatrist took it upon himself to schedule us an appointment with the Pediatric Orthopedic Surgeon. He told us he wanted to be sure we got in and got in soon! The appointment is THIS Thursday at 2:00 pm. He said if we need to reschedule it then we can just call the Pediatric Orthopedic Surgeon's office to do that.

I was told it's easier to reschedule an existing appointment, then for us to call trying to schedule a new appointment. Also you can get in faster when one doctor's office call the other's office and schedules the appointments. That's why the podiatrist took it upon himself to schedule the appointment with the Pediatric Orthopedic Surgeon on our behave.

So this is where we are at now with Superstar Toe Walking. Of course I'll be posting what the Pediatric Orthopedic Surgeon has to say after we see him THIS Thursday.

Toe Walking! Update??

I so wish I had an update to give you all, especially those that are following because they want to learn more about my son's toe walking....

I DID go to the doctor's office only to learn that he STILL does NOT have the results of the EMG/NCV test! That test was 2 weeks ago and he should have had the result by now...

It's of course is not his fault seeing he's waiting to get them from another office. The office that is handling the test messed up! So it may be another 2-3 weeks before I will have results.

All I can say is hang tight and as soon as I know something I'll post it here.

On the plus side I DID NOT and WILL NOT get charged for today's office visit! :)

Superstar Swim Team?

Well we were told last night that superstar swimming is good enough to join the swim team. We are NOT going to pursue that right now because of this toe walking. We want to see what the doctor has to say. We still do not have the results of the EMG/NCV. We should have them soon.

Honestly, I'm impressed with superstar's ability. He only started to take swimming lessons in March 2009 (maybe February 2009). His very first lesson was sitting on the steps of the pool learning how to blow bubbles and getting comfortable with having his head in the water, then he moved to the back float. Now he's learning how to do the breast stroke along with "dolphin" kicks, and other swim styles like freestyle.

The organization that we take lesson through has their lessons at a local college's pool. Last night Superstar jumped off into the water from the "diving board". (I am not sure if that's what it's called; it's that board that the swimmers start from when swimming in swim competitions). Here is a picture of Michael Phelps jumping of the type of board I'm talking about.

Anyway, Superstar jumped off the board and swam freestyle all the way down to the other end. Very impressive from someone that just started to swim 5-6 months ago. I'm not saying that Superstar would be the next Michael Phelps, but it's clear that he's just a "natural" when it comes to swimming. That's the only way to explain why he has excel so well so fast.

I sincerely hope that we can get some answers here soon regarding Superstar's toe walking, and I hope they are answers that will allow him to continue to swim! I would have no issues with him joining the swim team today, but we have to wait and see what that doctor has to say. I'm really not worried about him causing more damage to himself with swimming like I am with soccer or volleyball. (Those are the other 2 sports that Superstar would like to play.)

Update: Superstar's Toe Walking

No, news is good news? :)

We did go for the EMG/NCV last night and Superstar handle the test very well. I'm really proud of him and his ability to under go these test. An EMG/NCV is really no fun to do. He had to lay down while the doctor poke needles into his legs. With each poke the doctor sent a electrical shocks into Superstar's muscles. He also put electrodes on him and sent electrical shocks to his nerves.

With each shock Superstar would cry out "ouch". He didn't physically cry, but he made it known that it wasn't pleasant. I did take him out to DQ after the testing for his favorite ice cream treat! He deserved it after that round of testing.

We go back to the podiatrist office sometime in the next week or two and that's when we will get the result of the testing that was done last night.

The doctor who administered the test last night was very nice man, but was also very opinionated. He shared his opinions on things last night; opinions that left my head spinning and me in tears.

I'm personally choosing not to share those opinions here, because in reality, we don't know them to be fact. It would all be hypothetical and to be honest at this point I only want to share what I do know over hypothetical opinions. I know I have several people that are reading my blog that have children that also toe walk so I don't want to alarm any of them.

I have close relationships with several of my readers off my blog, and I have shared with them, because I needed to vent. I thank-you for your support, prayers, and help. (You know who you are :)) If those "opinions" do turn out to be fact then I will share them here on my blog, because I know that it will help any other parent who may also have children that are toe walkers.

I will keep you all post via Catholic Christian Homeschooling as more infomation becomes available. Right now it's just a wait and see. We are waiting for the results of the EMG/NCV. I will have those within the next 1-2 weeks.

Thank-you to everyone that has contacted me via my blog and off my blog. I really appreciate your love, support, and concern for Superstar!

Lesson Plans Posted!

First I just wanted to say thanks for all the wonderful suggestions that I got on my blog and off my blog via emails! You guys are awesome for wanting to help me out!!! For that I'm thankful!

I looked over several of the suggestions and I've decided to get a scribd account. I've made up my lesson plans for this week like I try to do in Microsoft word and when I was done I uploaded the document to scribd. Then I embedded the document into my lesson plans web-page (see link in menu bar above).

I'm happy with the results! This is going to be such a time saver for me! So lesson plans for this week are up and posted! WooHoo...it feels so good to get back into the swing of things! Now if we can only get a break for this heat wave. LOL

Oh one more thing before I go. If you view my lesson plans you will see the kids now have "code names". Frankly I've been tired of using DS and DD, but yet I'm not comfortable with posting their names. So I asked the kids what they wanted for "code names".

DS told me Superstar and DD told me Web-princess, but I can use princess for short :) So from this day forward DS is going to be known as Superstar and DD is going to be known as (web) princess.

Okay have a great week! Superstar's EMG/NCV is going to take place this Wednesday, so I just ask that you keep him in your prayers.

Thanks and God Bless
SAHMinIL :)

MRI: Results For Toe Walking.

We got the results from the MRI today. (To recap for those that are new to my blog: My DS had to get an MRI done because of his toe walking.)

According the MRI DS bone structure in the foot is normal. So I was thankful to hear that. The next step is to call the hospital tomorrow to schedule an EMG/NCV.

EMG=Electromyograhy
NCV=Nerve conduction study

The podiatrist explain today that these tests need to be done to be sure that my DS brain, nerves, and muscles are communicating with each other properly.

That's all I have to share at this time. I'm thankful to learn that the bone structure is normal, but frustrated to learn that we need more testing done.

The doctor also mention that DS MIGHT need a foot manipulation under anesthesia done too. That's NOT surgery or anything like that. The doctor during the visit was manipulating DS feet, but felt there has been some resistance on DS part. Not anything DS can really help, just resistance, almost in an involuntary way. It's not anything that DS is purposely doing per say.

So doing an manipulation under anesthesia would help the Dr get a better understanding of what DS true range of motion is because under anesthesia DS will be totally relaxed.