Working On a Miracle

Many of you have written wondering what's up with the blog; no postings in 6 weeks. Well I have two pieces of good news--I am back and intend to be more regular in my postings, and the other news is that I have been away working on a miracle of sorts.  No I do not mean one of the big miracles involving lamp oil lasting for 8 days, or the parting of the water variety, but something much more tangible in my life today.

My son is now 14 and he has CP. He has gotten a lot taller over the last few years which is bad given the asymmetries in his muscles and lack of balance between competing muscle groups. The net effect has been that he was diagnosed some time ago with scoliosis. His spine has a noticeable curve in the lumbar (lower back) and a more subtle compensatory curve in the thoracic area (mid-back). As bad as this diagnosis is,  it is not all bad because the curve is not pressing on any vital organs or impairing lung or heart function which frequently can be the case.

So for about a year plus our former PT has been urging us to "just see the spinal orthopedist" with the added assurance that "it does not necessarily mean surgery."  I have been down this road before and know that those assurances do not mean much. Once we have the office visit, the operation will follow shortly afterwards.  The surgery, to be perfectly honest, scares the daylights out of me. It is horribly invasive, lasts for many hours, involves insertion of metal rods into the spine, and results in a long rehabilitation period and often permanent lose of movement.  In a word, not good! 

Just so it is understood, we have been good patients for years.  The professionals say make the appointment and we do it which has resulted in 15 surgeries in the first 13 years of his life; two of them were major orthopedic surgeries at 3 and at 12, the effects of which are still being felt today.

The problem is that in the area of medical research, CP is not high on the list. The treatments for things like scoliosis, which is all too common with children with CP, is not well advanced and certainly not a priority on any one's agenda. The treatments have basically remained the same since the 1950's; use some minimal bracing and when that does not work, surgery.  Not my idea of time, money or effort well spent.

In the balance between fear of surgery and fear of how bad my son's body looked, the latter fear won out last summer and it forced us to act.  I felt strongly that there had to be another answer other than surgery because we could not continue to do nothing and remain frozen with fear. Our OT, at the recommendation of another parent, mentioned a company called Advanced Bracing System ("A.B.S.") which is based in Baton Rouge, Louisiana. Geographically a little daunting since we live in Chicago. Nevertheless, the website and presentation on the telephone were very professional, the costs seemed reasonable, and the concept made sense, so we left for Louisiana in mid-August for fabrication of a spinal brace.

The system which Dr. Copes, the inventor of the A.B.S. system, has set up involves wearing the brace 20 hours a week, nutrition to support the body, special exercises, electrical stimulation, and other means of realigning the spine. This brace is different in many ways from a normal spinal brace. It is made to a higher degree of precision, it is braced in near symmetry and has internal air bags which dynamically move the spine [these are adjusted from time to time as the x-rays show progress].  We went with high hopes but with a healthy level of skepticism.

The time in Louisiana was intense and brutally hot. We did go to New Orleans for some fun and despite all of the Katrina damage, it still is a great city.  The amazing thing was that within days of wearing the brace we began to see changes in his body; changes that were far out of reach during years of therapy. Better ribcage, more aligned spine, less torsion in his spine, even lessening of tone in his arms and legs from alignment of his body.

Well it has now been 4 months since we have gotten the brace. The miracle that we have been working on is that he continues to improve week by week. His progress is born out through x-ray data showing significant improvement, and the considered opinion of all of his therapists who universally exclaim that they have never seen anything like the gains he has made.  We see functional gains weekly.  On the other hand, we have been worn out from all of the extras.

Extra time in the morning taking the brace off for morning routines and then putting it back on for school. Initially fighting with some of the school people because the brace created extra work and he complained loudly about it being uncomfortable. The brace is made of a highly rigid plastic that requires my wife and I together to put it on, and even then it is challenging. The exercises, electrical stimulation and attempts at changing his diet all have taxed family resources, but it has been worth it.

All of the above, is to offer a long winded explanation for why the blog has until now fallen on hard times, and to give you an idea of the truly inspirational and exhausting experiences that we have been going through. Recently, the brace has become more part of the daily routine which supports my personal belief in the infinite ability of people to adapt to their circumstances.  Thank you to all of those who have expressed concern.  We have been busy working on a miracle !

Comments

[Kathryn]

Charles and Lori,

Hang in there. I wish I could bring you over some coffee and bagels and a hug. But I was SO glad to keep reading and know you did not do the horrible rod up the spine surgery. We have met CP kids and their parents that have done that and never met one where it was not for the worse.

Ellie is only just 4 now. But when she was 2 her spine was starting to curve too from too much sitting when her body was too weak to really hold her up. We, after going to Advance in Englad, were advised to put her on her tummy all the time and we changed her diet as well, which I just wrote about about a couple of posts ago. Anyway, we continue to do a ton of tummy time and her spine is straight so far. We are approaching a time when she will go to school and they will expect her to be upright. I know her spine will curve when this happens and am truly afraid of that and know it will be a challenge to help her be with other children in postural positions that she is not ready for.

Thanks for sharing the ABS information. I am so, so glad for you that you found another way to help your son versus the traditional one.

[Sandy Alperstein]

Thank you so much for sharing your miracle with us, Charlie! I've missed reading your postings, but this one was certainly worth the wait! In this season of miracles, your story is truly inspirational! Again, thank you for sharing it with us!

[Cyndi Lou & Jacobi]

Dear Charlie and Family,

We are very happy to hear about your blessings. You will continue to be in our thoughts and prayers and should you ever need anything, I am certain that you know we are here for you along with many others.

Cyn

[Leanne Roe]

Hi,

A friend passed your website on to me. I have a son, Samuel, who had a stroke before birth. As a result he has CP. He is 18 years old now.

We found Hyperbaric Oxygen Therapy (HBOT) to be very helpful. The traditional medical community does not realize that stroke causes a non-healing wound. Part of the brain leaves. But that part that remains, that was next to the part that is gone, needs to heal. Until it heals, it cannot function.

HBOT is not a complete cure. But it gets you one step ahead of where you were.

Samuel has had over 150 dives in a hard-sided chamber, and sleeps in a portable, soft-sided chamber almost every night. Before HBOT Samuel could not close his eyes. In fact, he thought he slept with his eyes open, since he could not shut them himself. After HBOT, he can shut his eyes with ease. His eyes also track now (important for reading), which they did not do before. His spasticity decreased. His range of motion increased.

Although we have medical insurance, we ended up having to pay for it ourselves, because it is considered "non-proven treatment/experimental". Many studies, however, prove otherwise. I've also been told that Russia and China use HBOT for brain trauma issues and they get good results.

The lone miner who survived last years mining tragedy received constant HBOT treatment immediately after being rescued. You bet the mining company was going to give him the best treatment possible, because they were in big trouble for creating the situation that caused the accident.

We went to Tobermory, ON, Canada. It was the cheapest HBOT around, because they only charged us cost.

You'll find more info about HBOT on the Internet.

All the best and thank you for what you do.

Leanne

[Amy Cederbaum]

THe news you report and which was so hardwon is breathtaking. It is not just how adaptable people can be to their circumstances that comes across. It's the metaphor for the true kind of support you persisted in finding and giving to your child that the brace represents especially in how difficult it's been to support with exercises and for Cole to learn to tolerate and for the school to accept their part - and because it and you have adapted to his needs and the way his body needs to move and shown the way for the rest of us whatever the issue. Many warm thoughts of support for Cole and your family and for all you do.