Issue #25 – REVISITING Cerebral Palsy – Here Comes Gadi!

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REVISITING Cerebral Palsy – Here Comes Gadi!

Tzivy Klein

Hey, its Gadi + Mom and we’re back. You might remember us from the article featuring Cerebral Palsy, where I had told you about Gadi’s birth story and how we’ve gotten this diagnosis. I wanted to do a quick update and fill you folks in on what we’ve been up to this past year.

As some of you may know, I had started an Instagram account for Gadi with the hopes of forming connections, offering support, spreading awareness and advocating for inclusion. It turns out that not only have we helped others, but it has helped us improve Gadi’s life tremendously. Really? Social media? How is that possible? Yes; I always say everything can be used for good or for bad. I’m not necessarily promoting this; it can often be difficult not to compare your child’s progress to another child. But for us it has been a game changer when it came to researching other options and available alternative therapies. Dealing with Gadi’s spasticity (tightness) has been one of our biggest challenges. We had to help his body loosen up, especially his legs, in order for him learn to be more physically independent. His legs were so tight and stiff it made everything more difficult. Sitting, crawling and even diaper changes were a challenge. It also
increased the chances of his hips dislocating, because of the severity of the spasticity.

The doctors were all recommending the same traditional treatment plans used for spasticity; Botox and phenol injections into the muscles or oral muscle relaxers. These were both short term solutions which we tried, but it didn’t give us the results we were looking for.

I came across an account on Instagram where the mom posted about a spinal surgery that her daughter just underwent. She wrote about how this surgery is changing their lives for the better. She also mentioned how most of their local doctors did not recommend this procedure, but how she decided to do it anyway, with the top surgeon in the world. I was curious to learn more so I reached out to her with some questions. She suggested I join a Facebook group, which is managed by the surgeon and his staff. I opened an account and requested to join the group.

I learnt that the surgery, Selective Dorsal Rhizotomy (SDR for short) is the only procedure that permanently eliminates spasticity in the legs. If the child is a candidate, it is recommended
to do it ‘the sooner the better’. Some children with very fierce scissoring, like Gadi had, can also get an additional procedure called PVR which is done through the same incision and just
adds a little bit of extra time to the surgery.

As I was reading all these amazing stories of other fellow CP warriors, one thing was made clear. A lot of doctors, especially neurologists and orthopedic surgeons, were not recommending or advising their patients to do SDR. It seemed like some of them even believed that children with CP need spasticity in order to ambulate! It was honestly mind blowing and very confusing.
As I continued researching, I discovered that there are 2 different techniques that can be used. There is the single level SDR, which was pioneered by the famous Dr. Park. This method poses much fewer risks and quicker recovery time. There is also the multi-level surgery which is a lot more invasive, higher risk and longer recovery period, but was around longer.

After many months of researching, talking to other families who have done SDR, filling out paperwork, talking to Gadi’s therapists and doctor and lots of davening, we headed to St. Louis, Missouri to have surgery with Dr. Park. The hospital staff and pain management team were amazing. The Jewish community there is unbelievable! They stepped in to help with food and
accommodations, which made our whole experience so much easier.

It’s been 1 year now since Gadi had the SDR + PVR surgery. It has been a long and busy year with many ups and downs. We have spent 2 months in an inpatient rehabilitation facility and
countless hours doing outpatient therapy. He has done PT, OT, speech, aquatic therapy, hippo-therapy, CME (Cuevas Medek Excercises) + 3- week intensive program. And although we are not one
of those stories where the child went to independent walking within a year, we have seen amazing improvements in so many different areas. Gadi has learnt to reciprocal crawl, has an easier time with transitions – including pulling to stand, is using his walker more independently and functionally, introduced forearm crutches in therapy and he is overall more comfortable and happier.

Our journey isn’t over and we will continue working towards our goal. Orthopedic surgery may still be in Gadi’s future, as every child is different. We have zero regrets and don’t know anyone who has regretted doing this surgery.

For anyone out there who has a child with spastic CP or considering SDR; do your research and connect with other moms. It is a long and slow process, but 100% worth it!

(Feel free to follow our journey on Instagram @lifewithgadi. If you have a child with CP and are interested in connecting with other moms, please DM via Insta or reach out to DSAU for
our contact information.)