Obtained diagnosis but have questions

[mpomeroy]

My 1 1/2 yr old was diagnosed with a lumbar hemivertebra which they have since been checking to see if it caused a problem with his kidneys. The orthopedic specialist said he has mild hydronephrosis, poor cortical definition and a degree of bilateral renal cortical atrophy. I can find information on the hydrosphrosis, but I'm having trouble finding info on the bilateral renal cortical atrophy. We are suppose to have a referral and visit to a pediatric urologist within a week or so, because our doctor is concerned, but if anyone has any helpfull information about what questions we should ask at the appointment, I would greatly appreciate it. My husband and I like to be prepared for what is ahead and try to ask the important questions when we are at the doctor rather than later.

Thank you for your help!

[Carmell]

Welcome to the board.

It sounds like your little man is getting good medical care. My son is now 8yrs old and was born with congenital scoliosis (thoracic malformations) and malformed kidneys. I would suggest asking questions that are specific to him. Its great that you will be seeing a pediatric urologist this soon. That's very important.

I found this definition of cortical (because I wasn't clear about what the doc was referring to).

"Belonging to, or consisting of, bark or rind; resembling bark or rind; external; outer; superficial; as, the cortical substance of the kidney."

It sounds like the external part of the kidneys are somehow atrophying (i.e., getting smaller). Cortical renal atrophy could be caused by pyelonephritis (kidney infection) or something else. It is very important to ask the urologist what is causing the renal problems, and what the plan will be to fix it. The information coming from an orthopedist should be confirmed by the urologist to make sure you are getting accurate and correct information.

I'd also ask what other tests they would need to do to keep his kidneys healthy and strong. If he hasn't had a VCUG done yet, I'll assume they will want to do one of those. This test is to see if there is any reflux in the renal system (urine flowing back into the kidneys through the ureters, rather than being emptied into the bladder and staying there). I have several sites on kidney reflux if it gets to that point. I suggested reflux because that is one cause for hydronephrosis. My son had hydronephrosis in utero, and had a full renal workup within the first week of birth. I'm very glad we were able to catch his renal issues before they became chronic.

Good luck and keep us posted! I'd be happy to email you and share parts of our experiences with both spine and renal issues. My email address is: boulderfam@hotmail.com

[mpomeroy]

Thank you Carmel

Thank you for the quick reply and I appreciate the info. I will be sure to ask the questions you mentioned, they seem like they will be very helpful. I will follow up with you when we have our appt. with the urologist to see what further action or tests will be run. I'm glad to hear of someone with several family members with similar issues and to hear you are all doing fine. I'm pregnant with my 2nd (technically 3rd child, because we have my husbands daughter full time from a previous marriage) and its nice to know that in the event that the new baby has similar problems, they can be managed. Did you have any tests done to diagnose future scoliosis or renal problems when you were pregant? If so what tests should I ask for?

Again thank you very much and I appreciate your help.

[Carmell]

Hi again,

I would suggest having a thorough level II ultrasound on the baby to make sure the kidneys are in the right place and show no evidence of hydronephrosis. The statistics are on your side that the baby will be just fine! Most often when a child has a spine malformation and kidney problems, and no other medical issues or chromosomal problems, then the cause of the problem is a fluke of nature. Sometimes that's hard for people to accept, but its true. My very lay-understanding of fetal growth tells me that everything has to be exactly perfect at all times for a fetus to grow into a perfectly healthy baby. Sometimes that just doesn't happen.

Other than ultrasound, there aren't any tests that I know of that will show fetal bone and organ structure prior to birth. We feel fortunate that we were able to find most of Braydon's birth defects long before he was born. We first saw him during a 19 week routine OB ultrasound. At that point, the technician discovered a single vessel umbilical cord and the curved spine. We went the very next day to an ultrasound specialist who confirmed the cord and spine issues, and also found a hole in the baby's heart, a dilated left kidney and a right clubfoot. We were overwhelmed with the information. We chose to have an amnioscentesis to rule out any chromosomal or hidden problems with the baby. Thankfully those tests showed a healthy baby boy! From there, we researched the options we had to "fix" the various problems he came with.

I wish you the best. Please try to enjoy your pregnancy and enjoy your little man. He's growing and changing so fast. Let me know what the recommendations are.

[asianpear]

hi, I am pleased to join the Forum with all this information to help us to make a decision. We are in the middle of a adoption from China, the child refer to us is not normal and had a curvature of the spine with crease in the mid-thoracic area and what appears to be a congenital kypho-scoliosis of the mid-thoracic and lumbar spine.
We would like to hear from other families' experiences on how to deal with this type of problem, and what is the future hold for this child. We are in our mid-fifty, we do not have any idea about the congenital kypho-scoliosis... please help.

Asianpear
Welcome to the board.

It sounds like your little man is getting good medical care. My son is now 8yrs old and was born with congenital scoliosis (thoracic malformations) and malformed kidneys. I would suggest asking questions that are specific to him. Its great that you will be seeing a pediatric urologist this soon. That's very important.

I found this definition of cortical (because I wasn't clear about what the doc was referring to).

"Belonging to, or consisting of, bark or rind; resembling bark or rind; external; outer; superficial; as, the cortical substance of the kidney."

It sounds like the external part of the kidneys are somehow atrophying (i.e., getting smaller). Cortical renal atrophy could be caused by pyelonephritis (kidney infection) or something else. It is very important to ask the urologist what is causing the renal problems, and what the plan will be to fix it. The information coming from an orthopedist should be confirmed by the urologist to make sure you are getting accurate and correct information.

I'd also ask what other tests they would need to do to keep his kidneys healthy and strong. If he hasn't had a VCUG done yet, I'll assume they will want to do one of those. This test is to see if there is any reflux in the renal system (urine flowing back into the kidneys through the ureters, rather than being emptied into the bladder and staying there). I have several sites on kidney reflux if it gets to that point. I suggested reflux because that is one cause for hydronephrosis. My son had hydronephrosis in utero, and had a full renal workup within the first week of birth. I'm very glad we were able to catch his renal issues before they became chronic.

Good luck and keep us posted! I'd be happy to email you and share parts of our experiences with both spine and renal issues. My email address is: boulderfam@hotmail.com [/QUOTE]

[Carmell]

Hi asianpear,

Welcome to the board. Congratulations on your pending adoption. I'm sure there are lots of things to consider besides "just" the spine issues here. There are new technologies availble to help kids with kypho-scoliosis and other spine issues. The degree of curvature would need to be considered as well as the impact the curved spine is having on the lungs. I can help you with names of very good pediatric orthopedists who have experience with this type of spine problem.

Also, he needs to have a full renal checkup. Often times when there are spine malformations, there are renal/kidney issues that need to be monitored.

There are many details that would need to be worked out once he/she arrives at your home, but I do think it is very worthwhile to have a child in your home. It may be extra work (the medical care) but shouldn't be anymore life-altering for you than having a new child in your home to begin with. I know my son with scoliotic issues carries a light about him that touches everyone he meets. He is a very special person and I'm honored to be his mother.

I wish you the best in your decisions.

[asianpear]

testing

[asianpear]

Hi Carmell,
I have problem with my computer in reply to you... if you see duplicate,please ignore it.
Thanks for your quick response.
We are meeting with our orthopedic doctor on Thursday, and need to ask more questions. Thanks for your suggestions. We have the x-ray and MRI of the child, the rest is guess work, we do not have any other info, like the renal/kidney/lungs problem of the child.
If the child has an extreme case of curvature of the spine, possible other organs are healthy? or this is only a dream?
The future children from this child, will they have the same scoliosis problem? what is the percentage?
The doc said there would not be any surgery on the child til he reach his teens.
Will he suffer from back pain when he gets older?
Can he lives an normal life?

Asian pear