3/13/15 – Spina Bifida Clinic

Ren recently attended the Spina Bifida Clinic for the first time at our new area hospital.  Overall, I was impressed ~ There was a lot of information shared and lots of positives, I felt.  I will try my best to summarize it all!

Urology:  Ren had an ultrasound on her bladder and kidneys.  Everything looks great, and so everything is staying the same. No news is better than bad news!

Neurology:   This is probably the one with the biggest news.  Because Ren has been seizure-free for more than 2 1/2 years, the neurologist – with our  approval – set up a plan to try to wean her off of her seizure  medications.  She said that this is something that can be tried after being seizure-free for at least 2 years, to see if the body has “outgrown” the seizures.  She has seen this happen successfully….and unsuccessfully.  But, the only way to find out is to try.  Of course, pursuing this involves the risk of her having a seizure.  If her body truly has not outgrown the seizures, then reducing her medication may cause a seizure to break through.  If this happens, then it becomes clear that she still needs her medication.  There is the slight risk that just going back to  her regular does of medication may not be all that is needed, so that leaves another unknown.  However, I have read in SB group forums about other individuals with SB who had seizures when they were young, and they did outgrow them and no longer have them as adults.  We are a little nervous about this, but excited too at the possibility that she could be done with seizures AND with medication.  We are taking it slowly, gradually, over the next 10 months.  We started a week ago, and so  far all is good.

Orthopedics/Physical Therapy:
The therapists were in enthusiastic agreement about her potential to be able to walk with fore-arm crutches in the future.  This is the first time that I feel we have had this overwhelmingly positive response, and so that was exciting for me! I brought up some of the concerns from previous doctors about her ability to do this, and they  had counter-responses to each of them, to the point where I was satisfied.  It is so nice to work with staff who are so positive and have great expectations for our daughter.

Ren will also be getting new KAFO braces, since she has outgrown the ones she has.  Wait  – let me rephrase what she is getting – She will be getting ONE new KAFO, and the other brace will be an AFO.  In other words, her right leg will keep the taller brace that goes above her knee, but her left leg, because it is so much stronger, will just have the shorter brace, which goes only up to her calf, like what she originally had up to a year and a half ago.  Their hope is that she can eventually go back to both legs having the AFOs, because they are lighter, less cumbersome, and ultimately because of this, may make it easier for walking.  They will be HOT PINK.  (She almost picked dark purple, but those were too Minnesota Viking for me, so I reminded her about her first choice of pink).   🙂   However, a slight obstacle right now is that her right foot is beginning to turn outward.  To fix this, they want to do a small surgery on her foot.  After this surgery is completed, then they think it will be easier to work on strengthening that leg up enough to move to the AFOs, and also then focus entirely on walking with the crutches.  We are electing to wait until the fall to do this surgery – for various reasons – so in the meantime, we will get the new HOT PINK braces and work on her torso  strength somehow, as that too needs to happen in order for walking to happen.  I think T is thinking of making new parallel bars for her to work out on.  (Right, T?)

The other news from orthopedics is that, as you may know from the past, she has a fractured growth plate in her left knee that previous doctors have shown concern about, saying it could cause complications in the future.  The last orthopedic surgeon even went so far as to say this would prohibit her from ever walking with arm crutches, because it would grow abnormally.  (This was one of the concerns I mentioned to these current doctors).   The new orthopedic surgeon showed us the x-rays and pointed out that there IS still growth occurring in the knee, for sure on the sides.  The front does seem to have damage, but so far it does not seem to be hindering her growth. He did say that we would still need to monitor it, but  he seemed optimistic about it overall.  More good news!

Occupational Therapy:  The OT did an evaluation on her and suggest she receive OT services each week.  This is interesting, since the school evaluation said she does not need any.  We will see if anything comes from this or not…

Speech Therapy:  The speech therapist also did quite an extensive evaluation…..we awaiting those results still.

I believe those are the main points.  We were  there from 7:30 a.m. until 4:00 p.m., so it was a VERY long day, and VERY tiring, especially for Ren. However, she was a trooper, as usual, and very productive.  We are supposed to be receiving a Care Summary of everything from the clinic, so we shall see if I forgot anything worthy of mentioning!

Please pray:

1.  That the weaning of her off her seizure medications will be successful – that she will NOT have any seizures, that has outgrown them, and will remain seizure-free.

2.  That her  growth plate in her knee will continue to grow, so as to not cause complications in the future.

3.  That her torso strength will increase, to help prepare her for walking.

Daily bedtime reading



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