Tuvel Communications Blog

November 26, 2008

What do sick kids have to do with social media: Part II

Our son was recently diagnosed with Perthes. We are currently staying at the Hackerman-Patz Guest House in Baltimore while Elan recuperates. This note is a follow-on to the original post and continues the conversation about what sick kids have to do with social media.

Disclaimer: if you don’t have a 10 yr old (or, think like one), some of the players mentioned here might not make sense…

Use You Tube and other outlets to grow your brand- We took our son, one week out of surgery, to see the Naked Brothers band. It was a blast. We somehow got invited backstage to party with the band. We were also pretty jazzed to meet Polly Draper, the band’s mom. You can see some of the pics here.

Opening for the Naked Bros was Savannah Outen. We know her because of Radio Disney airplay. Her song is in heavy rotation during morning drive time. Savannah introduced herself to the crowd with two words- You Tube. Turns out that her song has something like a million views on You Tube. She pumped her myspace pages several times during the show and ended by taking pics of the crowd for her online scrapbook. Our son was lucky enough to meet her backstage and get this pic, which she promptly posted to myspace.

Times are a changin’ – Doctors and their staffs, Nurses, and other health care workers routinely tell us to go online and ‘talk’ to other parents. They confirm that parents offer some of the best advice around when it comes to dealing with difficult situations. Maybe I shouldn’t have been but, I was surprised to hear top surgeons tell us that parents in similar situations can offer accurate advice. This is of course true but I was still surprised to hear it. The Doctors actually encourage you to join and participate in unfiltered discussion groups. In the groups that we participate in, parents discuss and help each other arrive at pre and post-op decisions. btw, we found and connected with our surgeon through an e-mail list.

Community building ain’t easy- Our son’s website has 2,000 visits inside of 2 weeks. Facebook and Twitter has been a great way to spread the word about both the website and guestbook. Elan’s built an e-mail list, people write when he doesn’t post to make sure all is OK, he’s already tired. Elan has added pressure that most of us don’t face with his principle, teachers and many parents looking on There’s a direct correlation between journal postings and guest book entries. When he’s having a bad day or does something unusual, 25 people will post comments.

E-mail notifications has been a great way for people to keep in touch. We also send out a weekly broadcast that summarizes the week’s posts. Elan is developing his own personality and learning how hard it is to build a community UNLESS you’re passionate about it!

You can’t control your online persona- Some of our son’s first blog sightings and postings will be about what he’s currently going through. I can already see this here and here when I Google him. Is this a bad thing? Maybe not, I’m not sure yet. One thing’s for sure though- you can’t control the archives!

Nothing beats face-to-face- Elan is the proud owner of the new Mac Book. With Skype and broadband access, he’s able to often join his schoolmates and teachers. This is important as he’ll be out of school for an extended period of time. Elan is the first student in his school to put together his own distance learning program. We were supportive but not only for the academics. As you can imagine, Elan has many friends in the 4th grade. He missed them terribly.

Being able to see them during the day is a real bonus and eliminates some of the isolation. Nothing beats face-to-face though. Online interaction is a good supplement to the real deal. We’ll be happy though when our son can once again be in the same room with his friends.

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November 11, 2008

Elan's school responds

From Elan's English teacher...

On another note, this past week the class learned that Elan Arnowitz would be having surgery on Friday, Nov. 7 and will not be returning to school until later in January. Elan has established a web site where he is chronicling his experience and he welcomes comments from the class. I encourage the class to communicate with him in this fashion and to consider visiting Elan in Baltimore as he becomes ready to receive visitors. Bikur Cholim is a middah that our class can readily fulfill this year.

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November 10, 2008

Elan- surgery over

Elan's hip surgery was this past Friday morning and it was a success!

Dr Shawn Standard of the Rubin Institute's International Center for Limb Lengthening, performed the operation. The center is part of Sinai Hospital in Baltimore, Maryland.

Dr Standard is one of two Drs that has pioneered the use of the external fixator in the treatment of Perthes disease. You can find out more about Perthes here and the external fixator here.

Elan’s hip still has a round shape and that’s a good thing. We also caught this condition in the early stages, allowing for a primary vs. salvage operation. Timing is very important with Perthes. It’s bad timing that Elan is old for this condition and the extent of his involvement. It’s good timing that we’re acting before the ball begins its re-growth stage. Surgery consisted of initially drilling a tiny hole in the growth plate. They then thread a wire from the growth plate into the femoral head. They think that this helps promote blood flow back into the femoral head. Keep in mind that Perthes is caused by an interruption in blood flow to the head or ‘ball’. Perthes kids often develop a limp and the risk in drilling is that it can increase this limp (interesting sidebar: for many of us, one leg is shorter than the other. My right leg is ½” shorter than the left one. It becomes noticeable when the discrepancy is greater than 1”).

The surgeon then released the tendons or cut the groin muscles. This is done to improve Elan’s range of motion. He then shot dye into the ball and x-rayed Elan’s hip so that he could see, in real time, extent of the damage. The Dr. also put Elan’s ball back in the socket. The shape of the socket is also OK. This is important for future prognosis or an early onset of arthritis, etc. The bottom line with the ball & socket is that we want the ball as round as possible so that it fits into the socket vs. the socket having to grow around a deformed ball. The last thing the surgeon did was the biggest part of surgery- he implanted the fixator into Elan’s hip. The fixator is attached by 6 large screws and includes a bar for distraction. The fixator takes the pressure of the hip and allows Elan to be partially weight-bearing. Most important, it pulls the hip or femur bone back and allows new cartilage and ultimately bone to take shape.

The Dr is very optimistic about Elan’s chance for success. Short term success is defined as regaining range of motion and eliminating pain. Long term success is avoiding additional surgeries, the need for a new hip or ongoing pain. Each child has a different outcome so there is a fair amount of a wait and see going on. The Dr thinks that this will do it and that no further actions will be necessary. We’re still sifting through the medical information that was shared post-surgery but it looks good.

We are cautiously optimistic. This was a big deal and a very big surgery- not the kind you want to put a 9 yr old through if you don’t have to. Elan is still recovering and we are still in the hospital. We are currently working on pain management with the epidural, IV and oral meds. Elan has started physical therapy and is slowly learning to live with a fixator for the next 4 months. As some of you know and have shared with us, it is more than painful to watch helplessly as your child cries out in pain. Hopefully, the worst is behind us.

As soon as Elan is up to it, we’ll move into our new ‘home away from home’ across the street from the hospital. Jan has set up our room at the Hackerman-Patz House. This is a guest house where we will spend our time with other fixator and limb lengthening patients. In between physical therapy, I’ll also be able to get some work done! Yesterday, Jan & I distracted Elan’s bone or turned the screw in the fixator for the first time. We turn the screw 1 cm. a day for approx. 2 weeks. Then, we wait for the ball to grow into the socket.

We have started a Website to chronicle Elan’s adventure. The Website has a guestbook, daily posts by Elan and pictures. The Website doesn’t include many of the details found here and is mindful that Elan’s friends are reading and participating. Additional contact info. follows. *Please continue to email Elan and sign his guestbook. His face lights up each time he reads an email or entry.

Elan is one incredibly brave kid. His smile fades from time to time but overall is holding up well. An anisteologist told us yesterday that Elan is a model patient, has a high threshold for pain and acting three times his age. Janet & I have a new hero and his name is

Send an e-card to Rm. 373

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November 02, 2008

Elan gets a fixator

As many family & friends know, our 9 yr old has Perthes disease.

On November 7, Elan will have an external fixator surgically mounted onto his hip. The fixator rests on the outside of his body and will be in place for 4 months. This device pulls the hip or femur bone back, allowing new cartilage to take shape. It is this cartilage that will ultimately form a new hip ball and socket for Elan. Once the fixator is removed, Elan will be in a brace for several months.

He will then use crutches and a wheelchair to get around. The key to this condition is to be 'non-weight bearing' until the new hip takes shape. Unfortunately, this process takes several years. The goal to any treatment plan is to create as round a ball as possible. This helps force a better outcome as Elan and his hips get older.

The external fixator procedure is out of the experimental stage and being pioneered in the country by 2 surgeons, one of which will do Elan's procedure in Baltimore, Maryland at the Rubin Institute's International Center for Limb Lengthening. The center is part of
Sinai Hospital. The center has been doing this work for the past 5 years and is seeing good results in older children.

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