My oldest daughter has a diagnoses contracture of Achille’s tendon and idiopathic toe-walking. This means her tendons are extensively tight and she toe-walks but they can find no cause or reason for her to do so. Because she does not have a diagnoses of cerebral Palsy or spasticity due to Traumatic Brain Injury, she was denied treatment that could relax her muscles and correct her walking stance. Toe-walking is not life or death but it does affect her day to day ability to walk, exercise, keep her balance and remain healthy. She is overweight because she has a hard time with physical activity because of her condition. Because it is hard for her to exercise correctly, she has high bad cholesterol at 15 years old. Her neurologist and her orthopedic specialist feel the best treatment for her are injections to relax her muscles and serial casting to complete the stretch. This is better than surgically stretching her tendons and risking tearing. Her first procedure was supposed to begin tomorrow.
Once upon a time, things like this would have been approved right away with little question for children. Now you have to jump through a million hoops to get the healthcare that is needed approved by insurance. We were all set for this to happen tomorrow. We had arranged for it to be done in the morning and Laycie’s neuro appointment in the afternoon. My Mother was keeping Jack at home. All plans were set and she was mentally ready for casts and the procedure to begin, as was I since she will be in these casts for a while until the stretch needed is reached for her.
This is a big part of why Emmalee is just getting this condition corrected at 15 as well. From age 8, when we realized she wasn’t outgrowing it, to age 12, when she began the process of having surgery to correct it, we were passed from Doctor to Doctor to verify the cause, to seek the best treatment before we finally were approved to correct the condition surgically. We watched her a year as she healed, trying different things to correct the final issues and give her a better stretch. We moved and re-established care to now decide on this course of action for her care. But the passing on from one to another and the denials for care have played a huge part on the prolonging of her condition, instead of correcting it.
This is the life of a Special Needs Child, parent and family. This is what we deal with every day, week after week, year after year. And not just us, but so many others. Because there is no apparent cause that satisfies the need requested she is denied even though her toe-walking is extensive and one of the worst physically that most of her physicians have seen.
We will try again for approval but they still may deny the procedure for her. And even as I write this, I wonder how many others are denied for reasons that should not be. Medical care for children should not be such a task to receive.
Emma’s hematology appointment went well. She is clear for now unless her bloodwork shows something odd. Her genetics appointment told us everything we already knew. She is a carrier for Hemachromatosis but it is not a condition for her – she only carries the gene. That’s great news but means that I, myself, may have the condition. So far, everything is coming back healthy and I am thankful for that.
Laycie has a neuro appointment on Wednesday. She’s now on a lower med dose and doing well. Her speech is better, her ability to retain information is better, her attention span seems to be increasing, and her appetite has definitely returned to a more normal place for her. She is having a lot of twitching in her sleep which concerns me. Jerking movement in her feet and arms, tremors, and her tic in her eye has returned though not as badly as it was in the past. I am going to ask for a repeat EEG to see where she’s at on terms of lowering her dosage, if the doctor feels that insurance would approve it and ask that she remains on the lower dosage of meds for now until our next appointment just to be safe for her. Stopping medication is a long process and I’d rather take it extremely slow than rush her off to lead to her having a seizure because of the process moving too quickly for her.
So medically we are at a standstill for treatment until insurance approves what we need and we see where we go from here.
Until next time…
Dana
