MDJunction - People Helping People
 
Ask a Question
11/17/2011 06:31 PM

11 month old recently diagnosed

ErinBen
Posts: 2
New Member

Hi all,

My son was recently diagnosed with Ollier's. We took him to a pediatric orthopedist because one of his legs was larger than the other and he seemed to favor his small leg. When standing, he typically keeps most of his weight on his small leg. In the last month, the leg has really looked crooked from the knee down. It seems as if it is actually getting worse. After doing a bit of research and reading some of the stories from this group, I am going to ask the doctor to do a full body scan to make sure we know where all of his tumors are. It also seems as if we should push for surgery now to remove the tumors rather than wait until they do more damage to the bones or he breaks a bone. I am also going to consult with a pediatric oncologist.

Because this disease is so rare, it is difficult to find information about the prognosis, treatment, etc. Does anybody have suggestions for questions I should be asking the doctor that I may not think of or tests I should have them do to him?

I am concerned now that my son is in pain. I did not realize how painful this can be to others. He seems happy and healthy and doesn't look like he is in pain when he stands and walks. He loves standing up. Does anybody have experience managing the pain associated with this disease in young kids?

I am so glad this group exists! I have had difficulty talking to family and friends about his diagnosis partly because I don't know much about the disease and partly because I don't want them to view my son differently because he is "sick." Another question I have is, where should I look for information about this disease and treatment?

Thanks in advance for any advice you can give to a mom trying to help her son.

Reply

11/18/2011 09:35 AM
Dwodc
DwodcPosts: 23
Member

ErinBen,

In my opinion having a daughter with Ollier's and having tumors throughout her left leg I would not remove the tumors as in some cases the bone does not fill in the void. Regarding your story It seems your child's age is about 2?? If so, let the Olliers take its course and grow with the limb. You can only lengthen 20% of the full length of the bone...meaning to lengthen a tibia bone 2-inches the tibia would have to be 10-inches. Most experienced Orthopedic surgeons and Ollier's bone lengthening articles express the first lengthening start at age 6 to 7 in order to maximize the 20% bone growth. My daughter is just finishing up doing a dual (femur and tibia) lengthening...lengthening to 11-cm. The new bone growth is actually Ollier's / tumor bone. We noticed her deformity around 2-years of age due to bowing of her tibia. Our oncologist suggested not to remove the tumors, however only tumors that caused sever pain...these are tumors that elevate out like a bump. If they extract a tumor, make sure it is tested for malignancy. Overall, find an Orthopedic surgeon who has experience with Olliers and has done surgery on Olliers patients. Moreover, if you are seeing the tibia with Olliers bowing and the femur has Olliers, then there will be a discrepancy with the femur as well. The more your child grows and walks on the leg, the more it will bow and change...this is normal, however with the right surgeon it is correctable. I have a list of experienced physicians in my diary. Please let me know what I can do to help!

Dwodc


11/18/2011 11:23 AM
ErinBen
Posts: 2
New Member

Dwodc,

Thank you for your response and advice. What you are saying with regards to leaving the tumors/bone lengthening makes sense. I am just uncomfortable with the idea of him having unremoved tumors in his body. In addition, I have heard the tumors weaken the bones and make them more susceptible to fractures. Do you know if there is a way to prevent this? My son is almost 1 year and he loves to stand, table surf and walk (with assistance). He does not seem to be in pain, but it is quite difficult to tell with a baby.

I saw the list of doctors in your diary. Thank you for posting this information! It has been quite taxing to research this affliction - there is not much out there and it can be difficult to find. I am heavily researching now and plan to contribute anything that may be of use to this group.

How has your daughter dealt with the bone lengthening process mentally and physically? How do you manage your stress?

Again, thanks for the response. It is good to know there are others out there who have gone through what we are and will go through. Our family and friends have never heard of the disease so they only have more questions we can't answer.

Best,

ErinBen


11/18/2011 12:31 PM
Dwodc
DwodcPosts: 23
Member

ErinBen,

An oncologist I talked to stated that removing the tumors will lead to more breaks due to the void left behind. Leaving them there will not hurt unless they are very painful. Once skeletal maturity becomes, then the growth stops and the tumors solidify somewhat. There will be limb length deformity and to prevent hip problems you will always want your son to wear a shoe lift and upon each visit to your orthopedic physician have the length discrepancy re-measured and a new shoe lift made...you do not want hip and spine problems due to the offset.

Overall, my daughters surgery 3-weeks after was the hardest. After that she had minor pain but nothing tearful. She is in a wheelchair most of the day and walks with a walker now around the house now that the bone is at the desired length. She went from a bowed tibia and 14-cm length discrepancy to a fully strait leg and 2 to 3-cm discrepancy. It was truly amazing work the surgeon did. Ovverall, the surgery went better than I could imagine and was well worth it. Her being 7-yrs of age now.

Stress...most of this was in the beginning and up to the surgery. Now seeing the difference after surgery my wife and I feel much better as we now know there is hope to her future. I like you have lost sleep, researched, prayed, cried, and blamed myself over the last several years. However, being one of the leads in this group has given me an option to pay it back and help others who are starting the journey I once started and continue to go through.

Just know any questions you have I will be glad to answer. Just having someone to communicate to who is experiencing the same as you is worth a million...this I know.

Dwodc


01/04/2012 07:35 AM
fourbabies
 
Posts: 2
New Member

Dwodc and ErinBen,

Thank you both for continuing to share both your stories and information with us all. Our daughter is now almost 2 1/2, and also has severe leg involvement (along with the rest of her body). She is currently using about a 1 1/2 inch lift on her left shoe, which she wears from morning until night. I agree that this limits the amount of damage to the hip/spine areas. Her left hip is also effected so we try to limit as much damage as we can.

She has just returned to walking after what appears to be a stress fracture near her knee- it took about 4 weeks of her scooting around before she would bear weight again. Although its probably just the first of many, it was difficult to hear her complain of the it hurting her...she also complains of her fingers hurting from time to time.

I think often of all of the many (countless) tumors throughout her body and it is heartbreaking, and can be quite overwhelming. Taking it day by day and connecting with others sharing the same experiences helps in so many ways.

Hope the holidays were restful and as painfree as possible.

fourbabies

Reply

Share this discussion with your friends:


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved