by mmcnett | Oct 6, 2014 | Buying Valuable Growth Time, Infantile Scoliosis, Infantile Scoliosis Blog, Our Stories
In January 2011, our daughter Josefina of 6 months old was diagnosed with severe progressive infantile scoliosis. We live in Montevideo, Uruguay; a country of 3 million people, where cases like Josefina´s practically don’t exist, so effective treatments in our country weren’t t available. At first, doctor recommended us to travel to Argentina, were we didn’t get good results using braces, so the possibility of successive surgeries were in our close future.
At the age of only 12 months Josefina’s scoliosis, was already twisted to 90°, compromising her lungs and heart. At that point she got a virus in her lungs and we ended up in the intensive care unit for almost two weeks with respiratory problems. Searching for the best option for her, knowing that it was very important and necessary to obtain the best possible correction to prevent future thoracic insufficiency syndrome, we came across ISOP and as we read about Mehta Casting, we knew immediately that it was the option we were looking for our little girl. Without hesitating we got in contact with Heather who gave us information and the support we needed to fight for being able to reach Mehta Casting treatment for our daughter.
With the advice and support of Heather we began searching for options. We knew it was going to be a long road but were determined to fight to give our girl the best option.
On august 2011 we began our applications to get Josefina accepted as a patient in Shriners Hospital for Children in Salt Lake City. We contacted local representatives from Shriners here in Montevideo and began making the applications to get her accepted as a patient in Shriners Hospitals. We found amazing people that helped us during this process knowing that this was the best option for my daughter and that she deserves to have this chance in life. Luckily, in September 2011 we received the best phone call in our entire lives, telling us that finally Josefina had been accepted as a patient in Shriners Hospital!!! That phone call changed our lives forever; we can’t express how good it feels to finally know that Josefina was going to have this opportunity, to know that we had achieved our best goal ever: Fight for the health of our lil Josefina giving her the best option for her condition.
In November 2011 we finally started this great journey, and travelled to Salt Lake City to have our first appointment with Dr. Jacques D´Astous at Shriners Hospital. He agreed that Jose was a good candidate for Mehta Casting and that in her case was the best option that will contribute to postpone corrective surgery until she got older. November 26th 2011 was the date when Josefina´s first Mehta Cast was applied and they managed to get a correction in her twisted spine of 40 degrees (her curve was 92 degrees before cast and the xrays in cast showed a curve of 52 degrees!). We were so happy for this great result and also seeing Josefina recovered so well, seeing her running around in her new cast!
Since November 2011, we´ve been travelling every 3 months to Shriners Hospital in Salt Lake City. Josefina is now 4 years old, she is wearing her 12th cast and is a healthy and happy girl. This alternative method to surgery, Mehta Cast, is allowing Josefina to grow older, with a good quality of life, buying valuable time and delaying surgery the more we can.
We would especially like to THANK ISOP and Heather for giving us the information and support we needed. If it hasn´t been for her advocacy and work we would have probably never know about Mehta Cast. We also want to thank Salt Lake City Shriners Hospital´s staff. From the very first moment we felt really comfortable on how Dr D´Astous and his team treated our daughter, their professionalism and excellent reputation made us feel absolutely convinced that we were on the right track. Every single person that is in touch with our daughter while we are in the hospital is just WONDEFRUL. Starting with Dr D`Astous, excellent person and professional, always explaining to us how Josefina is doing and taking the time to answer questions about her future. His team is also great, and compromised with every little one, caring and explaining every step they do. We would also like to mention the excellent work Anaesthesiologists do, their professionalism keep us calm knowing she is in really good hands. Also nurses, psychologist, and all the staff in Shriners Salt Lake City are just amazing and caring with our lil Josefina, making each procedure the less traumatic for her. We felt really blessed to have this opportunity for her, knowing that we still have a long journey to go, but feeling confident that we are on the right path.
This is our family priority, to fight for Josefina´s health, giving her a good quality of life while going through this process. We are receiving the help of our family, aunts, uncles, grandparents, friends and our community. They are helping us afford the cost of travelling every 3 months and we are really thankful for that too
We still have a long way to go and Shriners Hospital is our main allied on this journey. This gives us strength and hope in Josefina`s future, knowing that she is receiving the best treatment ever, and that we couldn`t have given it to her if it wasn´t for the help of Shriners.
With love,
Mariana – Josefina’s mom
by mmcnett | Oct 2, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Progressive Infantile Scoliosis (PIS),
In June of 2012, I noticed Starla’s back was forming oddly. I didn’t know at the time that was a rib hump. She was nearly 6 months old then. Many blew it off and I didn’t know if it was a big deal or not. In December, 2012 my chiropractor ordered an x-ray of her back. I took the x-ray to her pediatrician who diagnosed her with infantile Scoliosis. She was days away from turning one year old. We were blessed by the fact that her pediatrician was honest enough to tell me that he didn’t know who to send her to. As soon as I got home, I googled Infantile Scoliosis and found ISOP. The following week I was in contact with a hospital which applies the Mehta Cast to patients and had our first appointment January 2, 2013.
It was very hard to go through these first few appointments. We were told Starla’s curve was 30 degrees with rotation and the doctor wanted to wait and see how her scoliosis would develop as she grows. We understood the wait and see and were hopeful that we would see improvement. But we also questioned at what point we decide to cast. She continued to grow but the curve continued to stay at 30 degrees. Being a Christian married couple, we always make big decisions together. This decision was a challenge for us. One of us had faith God would heal her without treatment. The other felt God telling us to cast her. It was a challenge to get on the same page it required several difficult conversations. Ultimately, we decided that if the doctor recommended casting, we would move forward with the treatment.
Starla’s first Mehta cast was applied May 21, 2013 at the age of 16 months with her pre-cast x-ray revealing a 37 degree curve. It was a rough day as I assume it is for every family. We were filled with emotions. Emotions of thankfulness that she was getting the treatment that could cure her, emotions of grief that she needed to be in such a hospital getting treatment. Fear of how our lives would change and hopeful that we started treatment early enough.
The procedure went much faster than I had anticipated. The doctor was paging us after just 15 minutes. I panicked because I thought something had to have gone wrong for them to page us so quickly. When he entered the room, he told us everything went very well. He got her curve completely straight and rotation completely straight, too! What a miracle! We had been warned prior to casting that he would focus on the rotation with the first cast and not to expect great improvements with the curve. So, to have both completely straight was astonishing! It confirmed in our hearts that we did the right thing in treating her early.
We are currently finishing up our first full week in our first cast. Starla is the same person she was before. She plays and laughs. She eats and sleeps. She falls over more and can’t get up. She has learned she can’t pick toys up off the floor and whines until she gets our attention to hand her a toy. She has learned to roll over in her crib but is still not strong enough to push herself up. I feel that we are reliving the milestones we accomplished nearly a year ago. But that is ok. She will figure these things out and we continue to find little ways to help make life a little more comfortable. We have given her a sponge bath and have learned how to floss. I feel we have learned about all we need to in this first week. It was scary at first but I am trusting that it will get easier and easier and become more normal.
I haven’t thought much about the next cast. I know to expect her curve to return most likely to the 30’s again out of cast. I am hopeful she will become straight again once in the second cast. At that point, she will be 18 months old. I plan to start charting her numbers in and out of cast. I am hopeful we will see the trend to start dropping and continue that downward slide to zero. I am personally hopeful she will be straight out of cast in a short one to two years. I know there are no guarantees but that is where our faith continues. We have faith that God brought this treatment to us so quickly and that He will use it to heal our daughter completely. We have faith that she will be a walking testimony of God’s healing power.
To any parents out there just beginning to get your child evaluated, please keep strong. Have hope and push for treatment. If you are a parenting team, hold on tight to each other and don’t let the stresses of the condition divide you. Your little child needs you both. If you find a doctor dragging his feet in treating your child, PLEASE get a second or third opinion from another Mehta Casting specialist. Reach out for help if you are not sure what to do. There are many families out here who have left their own foot prints in this scoliosis world and would love to take your hand and give you a tour of the possibilities. Your child can be cured. It isn’t a guarantee BUT the sooner your child gets treated with a Mehta Cast, the better outcome he or she will have. So, let the tears flow when you need to, but forge ahead in treatment. You can find a great support system if you reach out and ask.
Finally, Hugs to you and your little one.
by mmcnett | Sep 20, 2014 | Congenital Scoliosis, Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories
Devyn was born October 3rd, 2005. The pregnancy and delivery were anything but normal. I had a sub-chorionic bleed until my 5th month of pregnancy that almost caused me to miscarry. The delivery started out normal until I started to push…. He got stuck twice and then was not breathing when he was born. After they resuscitated him he was fine except for his purple and blue bruised face.
Devyn seemed very healthy as a baby except for a milk allergy. He rolled over early, sat up at 5 to 6 months, and started crawling at 9 months, and walking at a year. It was then when we noticed something alarming. He stood in front of me one day in just his diaper, when I noticed that his back looked different. I mentioned it to my husband who knew it was there, but found it easier to pretend there was nothing wrong. We had a family get together for Thanksgiving, and I asked my mom and sister what they thought. They too said it was not normal and something was wrong.
The first week in December we had an appointment with his pediatrician for his shots, and I asked her to look at his back. She said that it was curved and that we needed x-rays and to see an orthopedist. Sure enough, the x-rays showed that he had scoliosis with a 24-degree curve in the lumbar area. The Orthopedist wanted an MRI to see if the spine was tethered at the base. So on January 11th we had the MRI done, what an experience—that drained us all. The results showed that the chord was not tethered and he had abnormally shaped cerebellar tonsils. The Orthopedist said that the pediatrician needed to refer us to a neurosurgeon and that she didn’t want to do anything at the time for the scoliosis, and to come back and see her in 4 months. So we saw our pediatrician again and she said we were not going to watch and wait. She sent us to Children’s Hospital in Denver to see an orthopedic surgeon for the scoliosis and a neurosurgeon.
We saw the orthopedic surgeons PA on February 2nd, 2007. He told us that he could definitely do something to help correct the scoliosis from progressing. He explained the early treatment process with the POP jackets and how it works. He said that we had to see the neurosurgeon first to make sure there were no neurological problems that would be affected by the casts.
March 7th we saw the neurosurgeon, who informed us that Devyn had Chiari Malformation along with his progressive infantile scoliosis. Chiari Malformation is where the lower part of the back of the skull does not form properly and is flat rather than curved. This pushes on the cerebellum (part of the brain) and causes the cerebellar tonsils at the base of the brain to descend downward into the spinal canal instead of under the skull and can cause pressure. This can cause the balance to be very unsteady, headaches, numbness, and in severe cases paralysis. He did not believe that the two were related because the Chiari malformation was not severe and not causing pressure on the spine. He told us at first that he wasn’t sure that surgery for the Chiari was necessary. He then asked if he could keep the MRI and share it with his colleagues to get their opinion. Of course, we had no problems with that—I want the best for my baby. The week after our appointment I received a call from the doctor himself. He explained that he shared the films with the other doctors and they decided that the surgery was necessary to make sure the two were not related.
On March 29th, 2007 Devyn had decompression surgery for the Chiari Malformation. They opened up the back of his neck and cut out half of the C1 vertebrate, and took out the left cellebellar tonsil, and cut the right one back. They also opened the Dura, which is on the back of the brain. He spent four days in the hospital, and is doing great. We have noticed small improvements of things we never knew were wrong with him. His balance has improved greatly; he used to scream in the car non-stop and now is not bothered by car rides. These are things we didn’t know because he was too young to tell us.
Although these things are better his scoliosis had not improved. They did x-rays on March 7th after his appointment with the neurosurgeon. His curve had progressed to 37-degrees and his rotation was at 30 degrees. His right foot turned in like a pigeon when he walked and seemed worse every day. His curve also looked like it was getting worse.
We were finally cleared for Devyn to get his first POP jacket on May 9th 2007. They did not do x-rays when they casted. The doctor tries to expose them to as little radiation, as possible. They were figuring the curve at a little over 40 degrees at the time he got his cast. He did better than we had expected in the hospital, a little mad at first but got used to the idea that it wasn’t coming off. The first week was a little rough as he had a hard time adjusting and moving in the cast. He couldn’t bend over or sit on the floor and sleeping was really hard at first for him, as well. After the first week he improved, and he learned how to accomplish something new every day. After two weeks he was back to his old self, getting into everything and climbing on everything.
On June 8th we went in for his first x-ray in cast. The doctor walked in and said, “refresh my memory, what did we start at?” He handed us the x-ray and told us to guess….. I was amazed, the x-ray looked almost straight! He said it measured 15 degrees and hopefully one more cast and a good growth spurt should do the trick. On July 6th Devyn received his second cast. They didnt x-ray on the day of casting this time either, they used the numbers from his last x-ray. On August 9th they took his in cast x-ray. This time it measured 10 degrees. As you can imagine we were very happy. The doctor said lets do one more cast to see if we can go any lower or if we hold this degree.
On September 10th Devyn received his third cast. We followed up on October 5th for his x-ray. The curve was holding at 10 degrees. We are still so happy because it’s better then when we started! On October 27th they took off Devyn’s cast and molded him for a brace. He received his first brace on October 31st. They did an x-ray to make sure the brace was adjusted correctly. He still measured 10 degrees. He wears his brace all the time except for bath’s and swimming. We went in on November 30th for his first x-ray with the brace, this time they had us take an out of brace x-ray. He is still holding at 10 degrees.
by mmcnett | Sep 2, 2014 | Frequently Asked Questions for Parents, Infantile Scoliosis, Infantile Scoliosis Blog
Some identifying characteristics of a Mehta cast are:
- It’s made with Plaster of Paris
- The front has a mushroom-shaped chest expansion window
- The cast has shoulder straps (it’s an “over the shoulder” cast)
- Application by a Mehta-trained pediatric orthopedic surgeon
- Petals made of moleskine cover the windows and cast edges
by mmcnett | Sep 2, 2014 | Frequently Asked Questions for Parents, Infantile Scoliosis, Infantile Scoliosis Blog
The D-shaped window on the back of a Mehta cast actively assists in the derotation of the child’s most prevalent curve with every breath the child takes. The D -shaped window should always be placed on the concavity side of curve, not past the midline. This special window allows the oblique ribs on the cavity side to grow out of the window, while the ribs on the convexity side are molded down to improve overall body shape and decrease rib hump.
Back to Frequently Asked Questions for Parents
by mmcnett | Sep 2, 2014 | Frequently Asked Questions for Parents, Infantile Scoliosis
The most effective way to determine the nature of your child’s curve is to have a pediatric orthopedic surgeon measure the Rib Verteral Angle Degree (RVAD). This simple, free and effective measuring technique uses a pencil and a ruler and was developed by Dr. Min Mehta in the early 70s.
If the RVAD is more than 20 degrees, the child’s scoliosis is considered to be PIS and progressive in nature. Immediate treatment with Mehta’s Growth Guidance Casting (MGGC) is indicated.
If the RVAD is under 20, it’s considered self-resolving and must be monitored closely with a follow up x-ray within 2 months.
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by mmcnett | Aug 21, 2014 | Educational Materials, Guardianship Alliance, Guardianship Alliance Blog
Let’s assume: You are the parent of a son who has a disability, whether from birth or acquired as a result of a brain injury or serious illness. He is now age 18, however, he functions at a mental age of approximately 7 years. You have cared for him both physically and emotionally for the 18 years of his life. As his parent you have always made the decisions necessary for him to receive services and treatment. Now you are being told, that just because he turned age 18, you no longer have authority to make any decisions for him. He is now emancipated and he has authority to manage his own life. But you know he is not capable of managing his life. You’ve always been there for him. You’ve always taken responsibility for whatever happens for and with him, both good and bad. Why would that change just because his chronological age changed? His mental age hasn’t changed — and it probably won’t, at least not very much!
Your authority changed because the law provides that when all persons become 18 years of age they are emancipated, i.e., released from paternal care and responsibility and have full legal rights or capacity.The law does NOT say that if a person has a disability or illness that causes him to be unable to manage his own life, then he is not emancipated. Rather, in that case, it is necessary for a court to make a legal determination that (1) the person is incapacitated, and (2) someone should serve as his guardian.
Guardianship gives a person or agency responsibility for making decisions on behalf of someone who is unable to make or communicate responsible decisions about his/her own life. The person for whom a guardian is appointed is called a “ward.” Without being the guardian, you cannot legally make decisions for your son or daughter. Often service providers, including doctors and residential care staff, consult with parents who are not guardians and may take their consent in certain situations. However, they are not obligated to do so and may refuse because of concern for their own liability.
Guardianship is a serious responsibility and one that should be approached with the same seriousness and attention which you apply to your own life. As a guardian you have overall responsibility for your ward’s welfare.While guardianship provides important protection, it is also very restrictive. An unlimited guardianship can remove all of an individual’s legal rights to manage his/her own life.
Before considering guardianship for an adult with a disability, there must be an assessment of the person’s functional capacity. This may include a recent psychological or psychiatric evaluation and a medical examination which, together, clearly describe the history, nature and degree of the disability.
Before appointing a guardian, the court must find by “clear and convincing evidence” that the person is incapacitated. Colorado law defines an incapacitated person as “an individual, other than a minor, who is unable to effectively receive and evaluate information or make or communicate decisions to such an extent that the individual lacks the ability to satisfy essential requirements for physical health, safety, or self-care, even with appropriate and reasonably available technological assistance.” (C.R.S. 15-14-102(5))
You must first consider if limited guardianship would be appropriate. Under limited guardianship, you are only responsible for specific matters with which the ward may need assistance, for example, money management and/or medical decisions. The ward remains responsible for all other decisions. Colorado law presumes that only limited guardianship is required. If unlimited guardianship is requested, you must prove to the court that it is necessary.
The procedure for obtaining a guardianship in uncontested cases need not be difficult. It can be done with the assistance of an attorney or, if there is no contest to the guardianship, it is relatively easy to do on your own. The Guardianship Alliance provides a class (the Petition Assistance Class) which includes the necessary forms and instructions. We can also make referrals to experienced attorneys.
This class helps persons with pro se (without an attorney) petitions for guardianship in noncontested cases. We provide the necessary forms and all instructions in the class. The fee is $125.00 for the packet which includes instructions and samples of forms. For the same fee, the pro se packet can be mailed to persons who cannot attend a class; however, attendance is strongly encouraged.
As a guardian, your duties and responsibilities may be similar to those you have exercised as a parent. However, there are a few exceptions. Namely, you are NOT responsible to provide for your ward out of your own funds and you are NOT liable to third persons for your ward’s actions and behaviors. Also, if you use reasonable care in choosing a service provider for your ward, you are not liable for injury to the ward resulting from negligent or wrongful conduct of the provider.
In addition, as a guardian you MAY NOT admit your ward for involuntary treatment for mental illness, alcohol and drug abuse or for institutionalization for developmental disabilities. Neither can you give consent for sterilization.
Even though, as a guardian, you will have responsibility for protecting and caring for your ward, it is important to carefully distinguish between providing adequate protection and imposing excessive restrictions. The law requires guardians to make every effort to include their ward in all decisionmaking. The kind of information and how it is presented will have a bearing upon the ward’s ability to participate in a decision. Information should be tailored to the understanding of the individual; the language must be simple; repetition may be necessary, and visual aids may be helpful. Following the attempt to inform, special efforts should be made to determine whether the person has in fact understood the information, perhaps through quizzing or other feedback.
In general, guardians have responsibility for personal and medical matters. If a ward has more assets than are required to provide for his/her daily needs, or if he/she owns real estate, a conservatorship may be necessary. Conservators are only responsible for money and property. Most adults with developmental disabilities do not need a conservator. Guardians can manage limited amounts of money such as income from SSI, Social Security, and low wages. A guardian may also be the Representative Payee for a ward.
For information and assistance with guardianship and similar issues, call the Guardianship Alliance at 303-228-5382 or send an email.
by mmcnett | Aug 20, 2014 | Educational Materials, Guardianship Alliance, Guardianship Alliance Blog
A conservatorship is a court appointment for an adult who is incapacitated, missing, detained or unable to return to the United States. The appointment of a conservator gives a person or an organization the responsibility to prevent waste or dissipation of the protected person’s assets; to obtain or provide for the support, care, education or welfare of the protected person or someone entitled to support by the protected person. Conservatorship for adults in Colorado is authorized by Colorado Revised Statues, Title 15, Article 14, Part 4. This section of the statutes was repealed and re-enacted effective January 1, 2001 and is known as the Colorado Uniform Guardianship and Protective Proceedings Act.
A conservatorship is a protective proceeding. The person for whom a conservator is appointed is called a “protected person.” The definition of a protected person is defined as “any individual, for reasons other than age, who is unable to manage property and business affairs because the individual is unable to effectively receive or evaluate information or both or to make or communicate decisions, even with the use of appropriate and reasonably available technological assistance or because the individual is missing, detained or unable to return to the United States.”
The appointment of a conservator or the entry of another protective order is not a determination of incapacity of the protected person. (C.R.S.§15-14-409(4))
A conservator may not serve in dual roles. This means the conservator cannot be the same person or entity as the guardian or the direct service provider and may not employ the same person as both a case manager and direct services provider. Owners, operators or employees of long-term care providers are expressly prohibited from serving as conservator unless related to the respondent by blood, marriage or adoption. (C.R.S.§15-14-413) The court, in appointing a conservator, considers persons otherwise qualified in the order of priority:
Conservator, guardian or like fiduciary appointed by the court of another jurisdiction;
A person nominated by the respondent in a durable power of attorney;
An agent appointed by the respondent under a durable power of attorney;
Spouse
Adult child
Parent
An adult with whom the respondent has resided for more than six months.
Bond is mandatory unless the court makes specific findings as to why a bond is not required in the particular case. (C.R.S.§15-14-415)
Appointment of a conservator vests title in the conservator. (C.R.S. §15-14-421) However, this does not sever joint tenancies. A conservator has the powers to continue, modify or revoke a financial power of attorney, unless limited in the order. All agents under financial powers of attorney must cease any further action under the power of attorney without the conservator’s specific authorization. The conservator may also require the agent to report and account for actions taken under the power of attorney. If the protected person owns real estate, the Letters of Conservatorship should be recorded in the county where the property is situated to give notice of title between the conservator and the protected person.
The interest of the protected person in property vested in a conservator is not transferable or assignable by the protected person. An attempted transfer of the property by the protected person is ineffective but may give rise to a claim against the protected person. Property vested in the conservator and the interest of the protected person are not subject to levy, garnishment or other claims unless incurred by the conservator or presented as a claim in essentially the same manner as for a decedent’s estate. However, if the protected person transfers personal property for substantially equivalent value to an individual unaware of the conservatorship who acted in good faith, the individual is protected as if the protected person or transferee had valid title.(C.R.S.§15-14-422)
If there’s a substantial conflict of interest between the conservator’s fiduciary and personal interest in a given transaction, that transaction is voidable unless expressly authorized by the court. This includes any sale, encumbrance or other transaction involving the conservatorship estate entered into by the conservator, the spouse, descendant, agent or lawyer of a conservator, or a corporation or other enterprise in which the conservator has a substantial beneficial interest. (C.R.S. §15-14-423)
A conservator may, after notice and only with express court approval, gift, convey, release or disclaim, create, revoke or amend trusts; exercise rights and change beneficiaries under retirement plans, insurance policies and annuities; and exercise rights to elective shares. Of particular note is the conservator’s authority to make, amend or revoke wills. (C.R.S.§15-14-411)
A conservatorship terminates on the death of the protected person, or upon an order determining that the conservatorship is no longer necessary.
by mmcnett | Aug 20, 2014 | Hip Subluxation & Progressive Infantile Scoliosis (PIS), Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories
Lily was born April 12 2004. She was diagnosed with plageocephaly at approximately 8 months of age. She was placed in a corrective helmet by the orthopedic physician, which was worn 24/7 for 4 months. This corrected the flatness of her head and restored its shape.
At 13 months of age, Lily had just started to walk. We noticed that she only had fat rolls on one side and that one shoulder drooped just slightly lower than the other. Up to this point, no mention had been made to us about scoliosis by her pediatrician or her orthopedic physician. We suspected, however, that scoliosis may be the problem. We took her to her pediatrician and told her what we suspected and asked that her back be radiographed. The radiograph confirmed our suspicions. She was referred back to the orthopedic physician who ordered an MRI to rule out congenital problems, as well as more radiographs. In one radiograph, Lily being her sometimes less than cooperative self, shifted just right and brought one of her hips into the field. A very astute x-ray tech noticed that the hip was dysplastic. More radiographs confirmed the diagnosis of bilateral hip dysplasia. This we were told was an unusual situation. The orthopedic physician informed us that traditionally one of these problems is usually treated at the expense of the other. He said he wanted to treat them together which to his knowledge had never been done. He recommended a Spica brace and a TLSO brace to be worn together, although he admitted he was not certain how that would be done.
At this point, I spent every waking moment researching treatment options and outcomes. This eventually led me to www.abilityconnectioncolorado.org/newsite/infantilescoliosis. They sent us a video and other information. After careful scrutiny, and much deliberation, we felt like early treatment would be the best option for Lily.
Lily was admitted to Shriner’s Hospital in Salt Lake City. Her dr. in SLC also wanted to treat the hip dysplasia and the scoliosis together. She was first casted September 13th 2005. She was placed into a modified plaster SPICA/Risser cast to treat both the scoliosis and the dysplasia concomitantly. This was the first cast of its kind. She wore this cast for 2 months. All subsequent casts have been of plaster, and done on a size appropriate casting frame. Eventually, Lily was placed in a Craig Hip abduction orthosis to be worn during naps and at night.
Her progress is as follows:
September 13th 2005:
Pre-cast: COBB = 46
RVAD = 30
In-cast: COBB = 8
November 16th 2005:
In-cast: COBB = 14
March 6th 2006:
Out-of-cast: COBB = 20
In-cast: COBB = 11
June 28th 2006:
Out-of-cast: COBB = 20
In-cast: COBB = 5
Oct 5th 2006:
Out-of-cast: COBB = 7
In-cast: COBB = 0
Lily will undergo one more casting in December 2006 to be worn until April 2007. She will then be placed in a TLSO brace for the remainder of her treatment. Her hips have not made much progress until the Oct visit when slight improvements were noted. There has also been no regression or dislocation. Her hips will be monitored until the age of 4 or 5 at which time she will undergo surgery for the dysplasia if the hips have not ossified and formed correctly.
We are very grateful to have found the ISOP (Infantile Scoliosis Outreach Program) for the hard work that’s been done in keeping us all connected and informed. We are also very grateful to our Dr. and the wonderful staff at SLC Shriner’s Hospital for all their hard work and dedication.
Sincerely,
Mike and Heather
by mmcnett | Aug 20, 2014 | Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories, Syndromic
Siobhan was born June 9th 1999 in Vancouver, Canada, 4 days late. Her birth was normal. We noticed at about 4-6 months old that she didn’t bear weight and, when her feet were on a flat surface, they pronated (rolled inwards) quite severely.
Our family doctor sent her to see an orthopedist at our Children’s Hospital, who explained that she would need orthotics when she started walking. Then, upon closer examination, he remarked how long her fingers and toes were. He referred us to a genetic doctor to have Siobhan checked for the Marfan syndrome.
The genetic doctor sent us to an Ophthalmologist for a ‘slit lamp’ eye exam and to a Cardiologist for an echocardiogram and x-rays of the hands, feet and spine. During this spine x-ray, Siobhan’s scoliosis was detected. She was 20 months old, and her COBB measured 23 degrees lumbar and 17 thoracic. Our orthopedist at the time felt it would get worse as she grew, but recommended the “wait and see” approach. Siobhan had an x-ray every 3 months for 9 months with no change. It was then recommended that we cut down on the x-ray exposure, and she would be seen every 6 months.
About two months after that decision, I noticed in a recent photograph that one of Siobhan’s shoulders was markedly “dropped” (uneven). We decided not to wait for another 4 months, and took her back for another x-ray. Her lumbar curve had increased to 35 degrees and her thoracic to 26 degrees. That’s when she went into her Boston TLSO, which she wore 23/7 for 9 months, with her curves maintaining at approximately 35°/26°.
But by one year later, her lumbar curve was 45°, and I was growing very concerned. Our orthopedist had originally told us that a spinal fusion would probably be necessary when she reached 12 years old, but later mentioned that it could be necessary when Siobhan was 10 years old. By our last visit, when Siobhan had faithfully worn the brace for 23 hours a day, 7 days a week, he was suggesting fusing her spine at 8 years old.
This is when we looked into serial casting as an option. Thanks to the Infantile Scoliosis Outreach Program’s website and the information I learned through Heather Hyatt, we found the only doctor, Jacques D’Astous, MD, who was willing to cast her in a plaster of paris cast (POP jacket). He applied Siobhan’s first plaster cast in June, 2004, at Intermountain Shriners Hospital in Salt Lake City, Utah, when she was 4 years old. At that time, her curves were measured at 32° lumbar/20° thoracic (in the cast). Her second cast was applied at the end of August 2004, reducing her lumbar curve to 8°/thoracic 17°. Her third cast saw her lumbar curve at zero/thoracic 25°, (measured on x-rays while in the cast.)
She is currently back in a Boston TLSO, which she wears 16-20 hours a day, and is getting lots of physiotherapy and swimming. Dr D’Astous will continue to follow Siobhan every 3-4 months and, when he feels her curves are increasing, will apply another series of POP jackets to buy as much time as possible for her grow.
Siobhan’s diagnosis is a “connective tissue disorder/possible emerging marfans/possible MASS phenotype.” We all know this means that her spine may just keep on curving, but we will all do everything we can to stall any surgery until she is older, much older.
Thank you for reading my little girl’s story. And if you have any questions please feel free to email me at jabostock@yahoo.ca
January 2008 Update
Siobhan continued to wear a brace 16 hours a day, until November 2005, when her doctor suggested she be evaluated for VEPTR (Vertical Expandable Prosthetic Titanium Rib).
We’d done a lot of research and believed that this fairly new procedure would help Siobhan, and improve the quality of her life even more.
The Mehta casting had bought us time, reduced Siobhan’s curves, and had helped correct her rotation, but her connective tissue disorder meant that we needed something more. Her doctor explained that these VEPTR’s would literally act as an “internal brace”.
We knew this surgery would be invasive in the short term, and a major commitment in the long term. But we trusted Siobhan’s Orthopedist.
In May 2006, Siobhan was the first child to receive the VEPTR dual hybrid (attached to her iliac crests) at the Shriners, Salt Lake City. Her curves went from 34 degrees thoracic/ 49 degrees lumbar to 0* thoracic/ 12* lumbar – All the doctors were very excited! Us too!
Siobhan received a confirmed diagnosis of “Emerging Marfan Syndrome”, by the Genetics Dept of our Children’s Hospital in January 2006.
Her first expansion of her dual VEPTR’s in November 2006 went smoothly – 6 months after the initial implants. But by January of 2007 we started to notice that Siobhan seemed unable to stand straight anymore – She’d acquired a “stoop” that she didn’t have before.
We emailed back and forth to her doctors in Salt Lake City, who informed us that we may need to look at moving these 2 VEPTR’s from the pelvis, as for some children, this stooping was becoming a problem. Both doctors agreed that relocating them to the laminae should help Siobhan.
Back.com definition:
Laminae
The laminae are two flattened plates of bone extending medially from the pedicles to form the posterior wall of the vertebral foramen
Intermountain Shriners found Siobhan an appointment at the end of April 2007, where her surgeon moved the pelvic devices. Surgery was harder than expected, but as always within a couple of weeks, Siobhan bounced back!
Siobhan is doing well in Grade 3, tap dancing and playing the piano – Having the wonderful childhood she deserves.
Sincerely,
Jacki, Siobhan’s mum
by mmcnett | Aug 20, 2014 | Halo Gravity Traction (HGT), Infantile Scoliosis, Infantile Scoliosis Blog, Life with Mehta Casts, Our Stories
Kylie Anne Lether was born August 8, 1997 in Salt Lake City, Utah. She weighed 6lbs. 10oz. and was 21 ½ inches long. She was born with Infantile Idiopathic Scoliosis and Developmental Hip Dysplasia. Her back had a big hump on the left side, which was her spine lifting her shoulder blade up. Her hip sockets were straight instead of curved and there were no femoral heads. Doctors are sure both of these problems were caused by the way she was positioned and had ran out of room in utero. Kylie was full term, breech and on a diagonal facing outwards. I was told that she had to have been in that position for quite some time to have caused such damage.
Because she had both problems that couldn’t be focused on at the same time, her orthopedic doctor focused on the most severe, which were the hips. We were told that if the hips were not corrected as early as possible, she would have to undergo many surgeries involving cutting of the hip sockets, metal plates and screws. There would also be the possibility that she wouldn’t walk normal or even at all. In the mean time, her scoliosis was progressing. It was already in the high 20’s.
At two weeks old, she was placed in a Pavlik harness brace and then when she was four months old, she had her first of many Spica casts applied. After five weeks in her first Spica cast, she was hospitalized for two weeks with bacterial meningitis from an ear infection that didn’t respond to antibiotics. She was also misdiagnosed many times. When she was finally diagnosed, we were told that they didn’t think she was going to make it. If she did make it through, she would be mentally retarded, blind, deaf, and not live a long life. To treat her meningitis, doctors had to cut the Spica cast off. While being treated for the meningitis, her right leg had become dislocated and she needed surgery to get it back into the socket. During this time, we learned that she had a Duplex Kidney, which is a kidney that measures a half length longer than the other. She underwent testing to determine if the kidney was functioning normal, which it was. We also learned that she was deaf in her right ear. We all assumed that it was caused from the meningitis; we later learned through a MRI that her ear bones in the right ear had abnormalities from birth.
Kylie is a fighter!! She pulled through the meningitis with some possible nerve damage that makes her muscles weak and almost impossible to build strength. The left side of her body is affected more than her right side. She ended up being in Spica casts for about five months. Her hip sockets developed normally and the femoral heads developed, as well.
Finally, her doctor was able to focus on her spine. By this time, her curve was 45 degrees. She was immediately placed in a TLSO brace. The brace corrected the curve to 34 degrees. We would go to regular follow up appointments and the curve always stayed 34 degrees. When she was 3 years old, her curve started progressing. It was progressing very quickly. Her curve was now 52 degrees. Her doctor discussed Risser casting with us and we agreed to try it. She wore two different casts for three months and her curve was back down to 34 degrees. After the Risser casts, she went back into a TLSO brace. At that time, we started discussing with her doctor some of the other non-surgical options because we knew it was just a matter of time before her curve would progress. He told us about the Halo Traction procedure. The Halo Traction is the gentle pulling of the soft tissue (joints and muscles) to help straighten the spine. Weights are hung from a rope woven through a pulley system to a carabineer attached to the top of the Halo. The traction gently pulls against the child’s body weight to straighten the spine, gently and nonsurgiclly. The Halo Traction Treatment for progressive infantile scoliosis was a new procedure to the U.S. and at the time was only available at Shriner’s Intermountain Hospital in Salt Lake City, Utah. Fortunately, that was the Shriner’s Kylie went to and we only lived 20 minutes away.
We read a booklet published by Shriner’s Intermountain about the Halo Traction procedure that showed pictures and told us how the whole thing worked. We also watched the video with Olivia and Breann, two of the first children in SLC to benefit from this non surgical procedure. After reading and watching, I FREAKED!! I knew that one day she would have to have this procedure done, but I didn’t think I could put her through that after all she had already been through. My husband and I decided that we would allow her doctor to do the procedure when it became necessary. We knew it was the only way to avoid early fusing of the spine and we figured that we would have enough time to get use to the whole idea, before she had to have the Halo. Five months later her curve was at 70 degrees, HALO TIME! I was so upset and couldn’t stop crying. Kylie walked up to me and asked why I was crying and then said, “Oh, it’s because my back got worse huh? Well that’s ok mom, because the front of me is not broke.” And then went back to playing with some toys. That’s when I realized that I needed to pull it together. My child was stronger than me!
Kylie started the Halo Traction in May 2002. She had to stay at Shriner’s with her Halo for 2 months. She was unbelievable! She never complained or wanted her halo off. She loved it and couldn’t wait to show it to everyone and tell them that she was an angel. She never wanted her doctor to take it off.
She had a wheelchair and a walker that she used with the Halo. When it was almost time for the Halo to be removed, we needed to decide on what was next for treatment. I was terrified to have the Halo removed because I knew that with the Halo on, her spine couldn’t get worse. The Halo traction corrected her curve from 70 degrees to 24 degrees. The last time her curve was close to that, was when she was about four months old. We knew that if we had her placed into a TLSO brace again, her curve would progress very quickly and we didn’t want to loose the great correction we gained from the Halo Traction. In talking with her doctor, we learned about Subcutaneous Growth Rods. We were very nervous to try the Growth Rods because we didn’t know what the outcome would be and knew the risk of spontaneous fusion to the spine at the attachment points. They would have to surgically lengthen them about every six months as she grew. We were also told that we could have the rods removed at any time if we decided to, and could go with some other treatment. We decided we would give them a try.
Kylie had her Halo removed and underwent Subcutaneous Growth Rod surgery. I was amazed at how quickly she recovered from the surgery and that she didn’t have much pain at all. She immediately took to her new rods, although she was sad to have her Halo taken away. She called them her special rods. When she had her Growth Rods lengthened for the first time, six months later, her curve was still 24 degrees. Every time the rods were lengthened, a couple of degrees would be lost. After two years with the Growth Rods, she started developing Kyphosis above the rods. The Kyphosis progressed very quickly, to 95 degrees. In May 2004, the Growth Rods were removed and she underwent the Halo Traction for the second time. Kylie was so happy to have her Halo back, and I have to admit that I was too. She did so well with the first one and the correction we got was great, how could I not be happy!
Kylie was in the second Halo for two months. Because she is older, her spine has become rigid, and Kyphosis is harder to correct. So, we didn’t get as much correction as last time. Her scoliosis was 45 degrees corrected to 40 degrees and the Kyphosis was 95 degrees corrected to 56 degrees. After the second Halo was removed, we decided to have her placed into a plaster Risser cast, this time with neck support to help with the Kyphosis.
She had her first Risser cast with neck support on for about ten weeks. We didn’t gain any correction in it. She had the second cast applied. We did gain some correction this time. The Kyphosis has been corrected to 45 degrees, 11 degrees of correction. She had that cast on until November 2004. When the cast was cut off, her spine instantly regressed back to 49 degrees. That same day, while we were waiting for her brace with neck support to be completely finished, her spine progressed from 49 to 60 degrees in just six hours.
In March 2005, she had her first orthopedic appointment for x-rays since she’d been wearing the new brace. She measured at 60 degrees, still. After her orthopedic appointment, we met with the neurologist at Shriner’s to have Kylie evaluated. She read her history and asked a lot of questions, then examined her. She then told me that she didn’t think Kylie’s physical disabilities and muscle weakness were caused by the meningitis she had at five months of age. She believes Kylie has a type of nonprogressive muscle myopathy, which she was born with. I didn’t know what to say, that wasn’t at all what I expected to hear. I couldn’t help thinking, why wasn’t this noticed earlier, like when she was born. From the time she was two weeks old, she had been in a brace or cast for her hips and then in a brace or plaster cast for her scoliosis. She was not able to physically develop when she was suppose to and then having meningitis at a very young age, no one ever noticed that something else was wrong with her. It was assumed, that the meningitis was the cause of her physical disabilities and lack of muscle tone.
The neurologist scheduled Kylie for a MRI of the brain, to see how much and how the meningitis had affected her brain. We received the MRI results that same day. The scans showed that her frontal lobe was affected the most. The frontal lobe was covered with many large white patches, which are basically dead parts of the grey matter due to lack of oxygen. Her entire brain is covered with smaller white spots. The doctor at Primary Children’s Hospital pulled up her past CAT scans to look at them. The first scan was when she was admitted with meningitis, had no white spots anywhere on the brain. The second set of scans were taken three days later, had all the white spotting. Fortunately, the damage wasn’t bad enough to have taken any functions away, just enough to alter some things a little. Kylie is a very smart kid. Sometimes she needs constant reminding to do certain things. She has a hard time concentrating at times. These are a few things she will have to deal with. Kylie will also undergo a muscle biopsy the next time she is sedated for a plaster cast or Halo traction, to determine what is exactly wrong with her muscles.
In May 2005, Kylie was one out of fifteen children selected to be a part of the first ever, Early Treatment Trial Project (ETTP) training conference, for progressive infantile scoliosis. The conference was held at Shriner’s Intermountain Hospital in Salt Lake City, Utah. It was sponsored by the Infantile Scoliosis Outreach Program, a service of Ability Connection Colorado. The conference was held to train doctors in the early treatment casting technique from the pioneer of this treatment, orthopedic physician, Miss Min H. Mehta, MD, FRCS. Miss Mehta retired from the Royal National Orthopedic Hospital in London and Stanmore, England.
Miss Mehta examined each child with the doctors and practitioners observing her examination techniques. We learned a lot of new things about Kylie, some good things and some not so good. We learned that the only benefit Kylie will ever have from casting is to hold her curve where it is, no permanent correction. Also the casts can not untwist her severely twisted spine. Kylie’s spine is too rigid. That was very upsetting to hear. Miss Mehta was
however, able to give us great relief in knowing that our decision of growth rods did not cause Kylie to develop kyphosis. She told us that her vertebrae in
that area were already twisted and that she would have developed kyphosis anyway. Miss Mehta told us that because her spine is so rigid and it’s been like this for so long, it might start to self fuse. She highly recommended that Kylie needed to spend up to 4 hours a day out of her brace doing special exercises and stretching techniques which she showed us, in hope that it will loosen her spine and avoid self fusing. I was terrified to have her out of her brace that
long, she progresses very quickly. When her last cast was cut off and we were waiting for her brace to be finished, her spine went from 49 degrees to 60 degrees in just 6 hours. Kylie’s been out of her brace every day for 2 to 4 hours doing constant stretching and exercising.
Kylie had her orthopedic follow up at the beginning of June 2005. We were quite nervous for this appointment because the outcome of this appointment would determine if she would undergo her third Halo traction. Kylie doesn’t have to undergo a third Halo for now. At her appointment three months later, her spine measured at 60 degrees in the brace. In June 2005, her spine measured at 55 degrees out of brace! We were shocked!
I believe that the special exercises, stretching techniques, and spending that much time out of the brace to do them, is the reason she is at 55 degrees now. She has also been doing a lot of swimming in our pool. Kylie is now able to get herself off the ground with no help from anyone or anything. We were told she may never accomplish that, she did!
Kylie will continue to wear her brace with neck support and enjoy the summer in her swimming pool. Kylie has been wearing this brace since November 2004. It was believed that this brace would not hold her spine at all. This brace has helped her spine from progressing! Kylie has her next orthopedic appointment in October 2005.
2005-2007 Update:
Kylie had her orthopedic appointment in October 2005, her scoliosis measured 60 degrees. She also has a lot more rotation. On February 6, 2006, she underwent her third Halo Traction. She was very happy! She was also able to have a muscle biopsy. The muscle biopsy came back positive for myopathy, no specific type. Her myopathy is non-progressive, although if she doesn’t stay active and work her muscles, they will atrophy. She will be unable to regain the muscles. The muscle tone and strength she has now, is all she’ll ever have. It is uncertain at this time how this will affect her as she gets older and bigger.
Two weeks before her Halo was to be removed, she was approved to undergo a procedure called the VEPTR. (Vertical, Expandable, Prosthetic, Titanium Rib.) VEPTR is a surgical procedure that consists of two rods that are made of titanium. They are adjustable, and are placed on the outside of the rib cage. They are attached to a set of top ribs and to the pelvis, she has one on both sides. The VEPTR is internal bracing for the spine and must be surgically adjusted as she grows, approximately every six months.
This procedure couldn’t have come at a better time. We had been told that plaster casts were no longer an option, the Halo Traction was not correcting much at all, and back braces alone would never hold her spine. Eventually, her heart and lungs would suffer. At this time, a spinal fusion was not an option either. Kylie was nine years old, she is small for her age. Her Duplex kidney causes her internal organs on her left side to be crowded. The bottom part of her lung it folded under and her heart has been shifted out of its proper spot. If the growth of her torso is stopped, the internal organs will become even more crowded and this would be life threatening.
Kylie had her VEPTR dual hybrid surgery on April 3, 2006 at Primary Children’s Hospital in SLC. She was transferred there from Shriner’s Intermountain Hospital, in her Halo Traction. The co-inventor of the dual VEPTR hybrid performed her surgery with assistance from her orthopedic doctor, since birth. She did wonderful, everything went as planned. The VEPTR has done amazing correction for her. With her spine being so rigid, we were all surprised how much the VEPTR dual hybrid had corrected her spine. After two months in the Halo Traction and before the VEPTR, her scoliosis was at 63 degrees. After the VEPTR it was at 42 degrees. Her kyphosis was 70 degrees before the VEPTR, after it was ZERO! Her back was so flat, it wasn’t even that flat when she was born.
Four days after her surgery, she was transferred back to Shriner’s Hospital, where she had been staying for two months prior to surgery, to finish recovering. She was able to go home the following week. Every six months, she will return to have her VEPTR expanded by the brilliant surgeon surgeons in SLC..
In August 2006, four months after her VEPTR was implanted, the left side came off the rib. She went in for surgery later that week to have it re-implanted. Her doctor felt like that the reason for it coming off was that there was too much tension on the VEPTR in that area where the kyphosis was being held to zero degrees. During surgery, he released some of the kyphosis and moved the VEPTR down to the next rib. A week later the VEPTR on the right side came off and broke the rib. Her doctor re-implanted the rod that had eroded through the rib and reattached it on the rib below, like the other side had been. He also went ahead and expanded the VEPTR, she was only a month away from her expansion date.
On October 30, 2006, Kylie underwent soft tissue releasing of the hips, back of both knees, and her left shoulder. With myopathy of the muscles, her soft tissues don’t grow at the same rate as her bones. The soft tissues become contracted like tight rubber bands and require to be released with surgery. This is something she will have to do again until she is done growing.
Kylie hit another obstacle with her VEPTR. Her kyphosis had drastically progressed right above where the VEPTR is implanted to the ribs. Her upper back and neck had completely collapsed. This was a complication due to her myopathy. She doesn’t have the muscle strength to hold up any unsupported parts of her spine, therefore that part of her spine collapses. Both of her doctors agreed that she needed to wear a brace with neck support so her neck didn’t worsen and get her on the schedule at Shriner’s for another Halo Traction as soon as possible.
On January 8, 2007, she underwent Halo Traction number four. She was able to keep the VEPTR in while being in traction because the area that needed to be straightened was above the VEPTR. This was the first time a Halo Traction was done with the VEPTR still implanted. Everything went very well. Her upper back and neck were corrected back to the way it was before collapsing.
Now the plan was to expand her VEPTR and move it to higher ribs to get better control, put her in a Halo Brace for two months while she healed from the surgery, then put her in a brace with neck support.
On February 8, 2007, she had her VEPTR expansion and revision surgery. Things did not go as planned. Kylies surgeon was unable to move the VEPTR up any higher. Her kyphosis would not allow it. He couldn’t get the left side to the next rib and the right side he couldn’t get it to stay on the rib. It immediately popped off and broke the rib. The VEPTR was put back on the original ribs as before. Kylie stayed in traction with only half of the weights as before, until the end of February. Then the Halo Brace was put on and she went home.
Kylie was in the Halo Brace for three weeks, we noticed that her VEPTR on the left side was starting to bulge out more than normal. I took her to get an x-ray to see if the VEPTR was coming off or if it was already off. The VEPTR was still on, but barely. This was happening because her upper back and neck, once again, was collapsing. No one could believe that it had collapsed with a Halo Brace on.
On March 26, 2007, Kylie underwent her fifth Halo Traction to correct her collapsed spine once again. She was very happy to have her Halo Traction back. Kylie told us that the reason she loves being in the Halo Traction, was because it allows her to move and do things she can’t do without it, because of her weak muscles. She is very proud that she holds the record for having the most Halo Tractions for spine straightening in the United States, by a long shot.
On April 23, 2007, we had no other options but to have the upper part of her spine that continued to collapse, fused. She underwent a fusion from T1 to T5. Her surgeon since birth performed the surgery. The area was reinforced with wire and she has a rod that runs alongside it. Her skin was closed with forty staples. Her skin has been cut so many times in that area that it is solid scar tissue. The staples hold the skin together better. The Halo Traction was left on for two more weeks with half the weights.
Kylie’s recovery was amazing! She was up and on the go four days after the surgery. She finally was able to go home on, May 11, 2007.
Since being home and recovered, she is a lot weaker than she was before. Although she was very active in her Halo, being in traction for so long had allowed muscles that couldn’t be used, weaken. She can no longer do some of the things she used to do before the last two Halo Tractions. This is very devastating to us. She continues to do therapy on a daily basis, to maintain what muscle strength she has left.
On September 17, 2007, she had her VEPTR expansion and another revision of the left side. The VEPTR on the left side continued to migrate and start to come off the rib. Kylies doctors tried to attach a growth rod and move the left side off the rib and over to the area of her spine that had been fused. They were unable too, they didn’t have the right size of connector, so they re-implanted it back on the rib in a different spot. A week later the bulge was coming back more and more each day. By the end of the week, the left VEPTR had come off once again. October 1, 2007, she underwent revision surgery again. This time her doctor had the right connectors. He removed the left VEPTR, connected a growth rod to the part of the device that is attached to the pelvis, attached it over to the bottom of the rod that runs along the fused area of her spine.
So far, things seem to be working! She is scheduled for a VEPTR/Growth Rod expansion in April 2008.
Kylie’s doctors have done so much for her. There are so many doctors out there who would have never of done half of what these two have done for her. They are both determined to do whatever they need to do to allow her to get the growth she needs, before she undergoes a full spinal fusion.
We’re not sure what the future will bring for Kylie, she is fighter. She has overcome so much in her ten years of life. I have no doubts in my mind that she will continue to successfully overcome what ever life throws her way!
She is our precious little angel!!!
Thank you for reading Kylie’s story. We will keep you updated. Feel free to e-mail me at Nlether@yahoo.com with any questions regarding Kylie’s story.
Sincerely,
Natalie Lether
