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One mother's attempt to advocate for her special needs child

 
 
 

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  • Amber Drea

Mo’ Therapy, Mo’ Problems


Stanley in recovery after his MRI of the brain

In the two months since I last updated this blog, we’ve gotten more answers, which in turn come with a new set of questions. Stanley has been approved to receive 20 hours of ABA therapy per week, in addition to two 30-minute occupational therapy sessions, three 30-minute physical therapy sessions and five 30-minute speech therapy sessions. Unfortunately, he only gets three speech sessions weekly because neither the service coordinator nor I can find another speech therapist who can come to our home during the small windows of time Stanley has available. Nearly every day, his schedule is packed from 8:30 a.m. to 3:30 p.m. with a few breaks between therapists, which are usually when he eats. Then he naps from 3:30 p.m. until 6:30 or 7:00, when he eats again and gets an hour and a half of free time before his last feed of the day, followed by bedtime at 9:00 p.m. He’s only 2 years old and already burning the candle at both ends.


Meanwhile, we’ve been pursuing all leads to figure out the causes of Stanley’s multiple developmental delays. Autism explains some of it, the long hospital stays explain some of it, the year on a feeding tube explains some of it, but every specialist we see wants us to do more testing and bring him to more specialists. The neurologist recommended an MRI of the brain to determine if there are any structural abnormalities, but he had to be put under general anesthesia because he needs to be perfectly still during the scan. So she suggested we have it done at the hospital where he had his liver transplant since that’s where his liver team is and it would be easier for them to order the MRI. On the other hand, it made more work for me because I had to serve as the go-between to make sure everyone had all the information they needed.


In addition, the geneticist ordered bloodwork for both Stanley and me to look for chromosomal abnormalities, genetic deletions or inherited mutations. The chromosome results came back normal, but we’re still waiting for the rest. Of course, the insurance company sent a letter telling me they need a statement of medical necessity for the genetic testing from the doctor, and his office has been less than cooperative. I’m crossing my fingers that we’re able to get it covered so we don’t have to pay the $3,000 bill. Insurance is also giving us a hard time about his labs from two months ago, claiming our policy doesn’t cover “experimental diagnostics,” even though they’re the same tests he’s been getting every six to eight weeks for the last two years.


On top of all his other health issues, Stanley has something called vesicouretural reflux (VUR), which causes the urine to flow backwards from the bladder up into the kidneys and can result in frequent urinary tract infections. The doctors first diagnosed him with this condition in October 2016 when he was hospitalized for a fever (all transplant patients must be admitted if their temperature spikes above 101) and it turned out to be another UTI—his second in six months. Recurring UTIs are an indication of VUR, so the nephrologist ordered a voiding cystourethrogram (VCUG), during which a contrast agent is administered through a catheter and an x-ray is taken of the bladder, kidneys and the tubes that connect them called ureters to visualize the urine flow. The VCUG confirmed that Stanley had VUR, and he was put on an antibiotic to prevent future UTIs until either the condition resolves on its own or Stanley undergoes surgery to correct it. It’s been two years since the initial diagnosis, and we recently had a follow-up with Stanley’s new urologist, who wanted to do a cystoscopy to look inside the bladder, ureters and kidneys, but Stanley would have to be put under anesthesia for this procedure. The doctor reasoned that if the cystoscopy showed that he still has VUR, then she would place a gel-like material called Deflux to block the urine from flowing backwards into the kidneys and then he could come off the antibiotic.


Stanley already had to be sedated for the MRI, and we were concerned about putting him under again for a separate procedure. We asked if both could be scheduled on one day since they were being done at the same hospital. While the urologist and the liver team told me it could be arranged, the MRI department ultimately said no. So we went ahead with the MRI and decided to wait on the cystoscopy until we could get a second opinion. Ironically, the MRI results showed no serious abnormalities in Stanley’s brain, but it had atrophied and failed to mature fully due to his multiple health issues and the many medications he’s had to take over the years. However, the neurologist believes that as Stanley continues to receive ABA and other therapies, his brain will eventually grow and function normally.


Yesterday we saw a urologist in Brooklyn for the second opinion on the VUR. This doctor’s philosophy seems to be the less invasive, the better, which is how we feel, especially since Stanley has already been through so much. We’re going to do another VCUG, which is uncomfortable but at least he doesn’t have to go under anesthesia, and if the reflux is still present, he will continue to take the antibiotic prophylactically. We’ll do a follow-up VCUG in a year or two and only then will we consider surgery if it hasn’t resolved.


I also had to switch gears into aggressive mode again regarding Stanley’s home-based therapies. Most children in the Early Intervention program transition to preschool on their 3rd birthday. However, because Stanley is getting 20 hours of ABA per week, he needs to continue in EI as long as possible (in his case, until the following school year), and in order for him to do so, he must be evaluated by the Committee on Preschool Special Education (CPSE). Referral forms were submitted by two separate service coordinators—once in June and again in September—but the CPSE still hasn’t contacted me about setting up a meeting. Stanley turns 3 on January 12, 2019, which is less than eight weeks away. You’d think that would be enough time to get everything in order, but with all the holidays coming up, it’s more like four weeks. So I will be on these people’s asses every day until then. Yesterday I made roughly 10 phone calls, navigated several mazes of voicemail menus and left messages for at least five different people to try to find out who I need to contact to open Stanley’s case with the CPSE in our school district. I was about ready to go down to their office and demand that someone speak with me in person when I finally reached someone who could help me. Of course, she said the office never received our referrals, so I had to write a letter containing Stanley’s information and fax it over. It’s ridiculous that anyone even uses fax machines anymore, but I might have to invest in one because I’m sick of running all over the neighborhood to print and fax my documents. Fortunately, I was able to get the letter to the CPSE before 5:00, and we should be receiving a packet to get the process started within the next week. All in all, it was a successful day.

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