Jenelle had an appointment this afternoon with a new orthopedic doctor. We were referred to Dr. Rosenfeld at CHOC because Jenelle's last Scoliosis x-ray showed a slight curve, and of course, we've been dealing with her para paresis (left leg shorter than the right). If you recall, Jenelle was diagnosed with this last July when we realized her leg was an inch shorter, and foot a shoe size smaller. At the time, she was fitted with an ankle brace to keep her longer leg from pulling inward, and a lift in the other shoe to help her balance out. Unfortunately, we lost the lift a few months ago, but Jenelle has been managing well without it. Also, Jenelle has had quite a growth spurt since the new year, and I was thinking her legs have finally caught up - it appears I was right!
Jenelle has never been followed by an orthopedic doctor and I was pleased to finally get some answers today. The new doctor said that Jenelle's legs are now even, but her left foot is still a bit smaller. That can happen to anyone really. We had a new x-ray today to compare to the last one took in August, and as it turns out her back is straight and fine. Of course, because of her issues, we will want to keep an eye out for future scoliosis, but for now she is fine.
And now, for the unexpected ... Jenelle has a new diagnosis! Or really, not new, as she has probably had it since birth. Dr. Rosenfeld says that Jenelle has Cerebral Palsy . Now, I know lots of special needs kids that have CP, and Jenelle does not seem to have the spastic problems I see in these other kids. Well apparently, there is not just one type of CP.
"Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth up to about age three. Resulting limits in movement and posture cause activity limitation and
are often accompanied by disturbances of sensation, depth perception,
and other sight-based perceptual problems, communication ability;
impairments can also be found in cognition, and epilepsy is found in about one-third of cases."
Now, Jenelle has never had an official diagnosis - i.e. we do not know what causes her seizures. We've determined her seizure type (Lennox Gastaut Syndrome), and that her brain in normal on MRIs - but no "official" underlying cause. CP is not the cause of her epilepsy, but the way CP affects her movements and muscle coordination, could be caused by whatever happened during pregnancy, birth or after. The good news - her CP will never get worse than it already it. The better news, a CP diagnosis will finally get Jenelle services from California Children's Services (CCS) which will help us with equipment expenses in the future, if needed. Dr. Rosenfeld had me complete the CCS application and said he would submit it on her behalf. All good news. Dr. Rosenfeld wants to start Jenelle on a very small does of Trihexyphenidyl. This drug is used to help muscle coordination and might be helpful to Jenelle in allowing her to have better control of her muscles. We will see him again next month to follow up.
In other news, the wean off Felbatol is going really, really well (knock on wood) and Jenelle has had very few seizures if any in recent days. We're just about to end our baseball season with her Challenger Team, and making decisions about her school placement next fall.