Alex and I went bye-bye the other day.
And boy does he love to go bye-bye.
He was so excited to be going somewhere with me that he didn't even blink when I told him it was to the doctor's office. He had two tests up at Children's Hospital this morning--- first a Renal Ultrasound of his bladder and kidneys and then a Cystogram where they emptied his bladder and then refilled it with a contrast dye that allowed the doctor to see the shape of his bladder and whether or not he was still refluxing.
Good news I guess-- Nothing has changed since his last visit six months ago--- his kidneys have not grown, he still has grade 1 reflux on the left side, and his bladder looks to be in decent shape.
Not sure what all this means long term since I didn't actually speak to the Urologist-- but I am making my list of questions for her and the whole Spina Bifida clinic team later this month.
1. Why does his right leg look 2 inches shorter than the other?
2. Would his left knee contracture have anything to do with his right leg being shorter?
3. Would knee-ankle-foot-orthotics help him with his contracture, or the scissoring
his legs do, or his inability to walk independently?
4. Would making his legs the same length help him in any way? Surgery? Block in shoe?
5. Will his urinary reflux get better as he gets older?
6. Since he hasn't had any infections in the past 6 months, does he still need to
stay on a daily antibiotic?
7. His catheter diameter seems to be too small. Can it be increased?
8. Why isn't the cathing helping with the leaking throughout the day?
9. What procedures or measures can be done to achieve dryness throughout the day?
10. At what age would you consider Alex a good candidate for the Mace or Chait if at all?
11. Will there ever be surgery to correct the scar tissue on his lower back?
12. Is there anything I should be doing for my son that I am not concerning his Spina
Bifida?
13. Given his amazing progress since the last time you saw him, would you still suggest
operating on his tethered cord?
14. If so, could you please repeat what the benefits of having this corrected would be?
I am sure there are lots more questions I should be prepared to ask-- but haven't written down yet. For those who are familiar with Spina Bifida and or orthopaedic issues especially--- if I am leaving something out-- please let me know!
10 inspiring thoughts:
wow, that is a lot. you are an amazing mom and advocate for your children. i admire you so much.
blessings
I love your list of questions. I'm sure it helps to have them written out, not only so you remember to ask them but because it helps settle the mind. I think maybe I need to do this with my mother's financial affairs, but I hardly know where to start.
My dad had a "block" on his shoe. I always liked it. :)
If the scissoring of his legs is due to spasticity, would botox injections help? I doubt that a KAFO (knee ankle foot orthotic) would change the spasticity, but it's still a good question. Also, will Alex benefit from PT - either before or after any surgery or other procedures? Hope this helps!!!
Is he on meds for the neurogenic bladder? If not- meds could help his bladder to be more "elastic" and not so hard and then it would expand and hold more urine between cathing and not leak as much.
I would ask about the meds if he isn't on any and see what they think might help.
Great list of questions! :)
Just a few questions from issues relevant to my LF:
Would tendon release surgery help with the knee contractures?
Would amedication such as Oxybutinin help with the urinary leaking? If not then is a Mitrofanoff with urethral disconnection (can't remember the proper term for that bit of the surgery) appropriate, or would it be in the future? Would this facilitate self-cathing?
Is his leg length discrepancy due to a dislocated hip, and if so, is it a good idea to fix that, or would the fix itself involve shortening the already short leg (as it did for my LF).
Would a lightweight self-propelling wheelchair be an appropriate tool to facilitate keeping up with his peers when playing outside?
Different child, differently affected, different continents and different medical teams so please ignore or dismiss anything not relevant.
It's good that you write down your questions/concerns as you are well prepared for your doctor visit. Alex has a great advocate on his side.
Has he had a urodynamics exam? That could explain the leaking throughout the day. My daughter is cathed every three hours and still leaks throughout the day. At her last clinic she was prescribed ditropan, so we're hoping that will help.
Also, I'm REALLY surprised he isn't already in orthotics. I'll bet you get a prescription this time. Possibly for a walker (Esther-Faith uses a reverse Kaye walker and does SO WELL), too.
You have your plate full, but if you get a chance, you should check out spinabifidakids.blogspot.com
The orthpedic team including a physical therapist should be working to get his body in correct alignment. This would include many different procedures/solutions. I would think that the leg scissoring is due to his hips.
From my experience which is very similar to yours (adopted 5 year old from Ukraine with SB and hip, knee, feet orthopedic issues) I believe many doctors are not as aggressive with orthopedic correction on SB children. Unless they can show otherwise, at this point the whole team should be working agressively towards getting him to walk. If not I would look for 2nd opinions. We waited over 2 years for a 2nd opinion and that was the worst mistake we made.
Best of luck,
Sharon
Keep your list handy and keep writing them down - I do the same thing, that way I don't forget anything. Daniel had surgery for severe reflux and an obstruction in his bladder and we still deal with leakage during the day although it's much better now and we're actually having dry days. The urologist recommended a schedule, but even still he reminded me that Daniel was in a wide range of normal for boys especially having a medical condition. It's frustrating but we are toughin it out! Daniel was also on the antibiotic, but I was able to wean him off as well so I would def. ask that. You might also ask if a bladder relaxer would help Alex. Since Daniel's bladder is overly large (due to reflux) the relaxer helps the stem and he can more fully empty his bladder which cuts down on the in between wets. We use cardura (the generic though). It might help. Just a thought!
You're children are growing so much! I'm glad you all had a great Easter and WOW! to the lawn surprise!!
Reflux is most often a result of the ureter(s) connecting to the bladder at the wrong angle, allowing urine to back up into the kidney(s). Normally, the angle at which the ureters join the bladder keep this from happening. The problem with urine backing up into a kidney is that it allows bacteria from the bladder to enter the kidney, thus increasing the possibility of a kidney infection, which can in turn lead to kidney damage. Because of this, low-dose antibiotics are typically continued indefinitely, and are only discontinued if the reflux is surgically corrected or resolves spontaneously. Sometimes, as a child grows and stretches out, the angle at the ureter-bladder junction changes to become more "steep," if you will, and the reflux ceases. Mild cases of reflux - Alex's is only grade 1 - quite often resolve over time. He's so little - with continued good nutrition and all the other positives you and your family provide for him, he will hopefully grow and his reflux will resolve.
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