Tell us your child’s story.
Mr. Hank was a typical one year old up until the day he first presented with symptoms. In late May, Lisa woke to find Hank having a strange rhythmic jerking in his left arm, and right leg. At first, we didn’t think it was a seizure because it was in opposite sides of the body, and he was alert and aware. The EMTs confirmed it was and rushed him to the hospital. Over the next 7 weeks we battled these jerks and twitches day in and day out. Numerous treatments and anti-epileptic drugs were administered and would only stop the jerking when he was completely sedated. As soon as he began to wake up, they would come back. Somewhere around week 7 we finally received a diagnosis. The refractory seizures were an underlying symptom to a PolG mutation in his mitochondrial DNA. It is a very rare degenerative disease called Alpers-Huttenlocher syndrome, or Alpers for short. The following days after Hanks diagnosis, we received referrals and made arrangements to get Hank in to therapy. He had shown us he wasn’t giving up, so we made every effort to get him the best chance at making a recovery we possibly could. That’s were Kaitlin and Sally at APT came in!
Why did you choose APT for therapy services?
Hank was born with Torticollis, which is another rare condition where the neck muscles contract and ball up leaving his head drawn or twisted to one side. We were originally referred to First Steps but my wife did some research, and found amazing reviews about the therapist at APT. They were able to schedule us in the next week. After such a great experience the first time we needed them, it was a no brainer going back with Hanks second diagnosis.
What improvements have you seen in your child since they started therapy at APT?
Hanks condition is degenerative, even the most minor of improvements are important to note. His continued rhythmic jerks leave him with very low muscle tone, but in the past months we have seen some improvement in his abilities. He could hardly move on his own when first seen, and now he is kicking his legs, bringing one hand to his mouth, holding his head up in his car seat and stroller, and turning his head from side to side. He flourishes when he’s in the water also, kicking and squirming like a fish, and we continue water therapy at home for now.
What has been your brightest moment along the journey?
From a therapy standpoint, my proudest moments have been with his head control. The fight in his little eyes the first time he lifted his head up on his own while lying on his stomach. Also holding his head on his own while sitting up, it’s made a world of difference in his comfort level while riding in the car and stroller.
What advice would you give other parents who face similar situations?
Don’t put off the therapy your child needs to develop. The therapist at APT are passionate about what that do. More importantly, their passionate about making sure your child succeeds in what they’re trying to accomplish. Ultimately, my biggest piece of advice… Never give up on your kiddos, and even if they’re exhausted and broken down, never let them give up on themselves.
Sally Stevenson, Hank’s Occupational Therapist and Kaitlyn Adler, Hank’s Physical Therapist share about the hard work Hank puts in during therapy sessions:
How long have you been working with Hank and what improvements have you seen?
Sally: “I’ve been working with Hank for 5 months. We work on active assist range of motion in both arms to reach for toys while lying on his sides. We also work on weight bearing on his forearms while on his tummy. While in seated position we work on reaching and grasping for rattle or toy. Kaitlin and I co-treat every other session so one of us can provide postural and head support during the session.”
Kaitlyn: “Hank was my very first patient here at APT and I started seeing him on 7/3/18 so I’ve seen him for 5 months now. Hank has really been working hard on learning to hold his head up in midline and lift it up when it falls forward which he is now able to do with less assistance. He recently received a stander which he is doing great with and is able to stand more towards vertical each session while holding his head up against the head rest. Hank loves being in the water and does a great job kicking and moving his arms in that environment.”
Describe a little about your and Hank’s relationship.
Sally: “I love working with Hank and his family. They are all wonderful! Hank was falling asleep during his therapy sessions during the day at the clinic, so Kaitlin and I now see Hank at his house in the evening when he is more awake and alert during our session. Hank loves music and his big brother.”
Kaitlyn: “Hank is such a great kid to work with. He has the best smile and laugh that makes your day. We have been able to experience a lot with each other: we’ve worked at the clinic, tried out some aquatic therapy sessions, ordered and received a really nice wheelchair and stander which he looks great in, and now we are able to see him in his home. He is such a strong fighter and is truly an inspiration.”