A lot has been going on with the new year and getting appointments set up, doctors seen and making sure all supplies for John have been properly ordered. So I have spent a lot of time on the phone. Some days I feel like I am slowly losing it but I know I have to be strong, “Trach Mom Strong”. I have been coloring a lot with gel pens and adult coloring books (mandalas, flowers, etc) to help keep me calm and chilled while on long phone calls, also a way to unwind from my daily events. Sometimes I will go for a walk, plugging in my headphones and just moving to the beat of the music helps clear my head. Just those little things help me be able to just breathe and have some quiet me time.
Nothing really new to report except that John has fallen off his own curve a little so we are increasing his cyproheptadine to increase his appetite. Also switching reflux meds from Nexium to Zantac. Follow up in 6 months.
So our big follow up with Dr. Souder, orthopedist, was done just Wednesday.
We did x-rays of John’s legs to check on his knock knees, and bone growth since we saw Dr. Souder a year ago. John’s knock knees have not gotten any better. So there was a discussion of a surgery that is done at the age of 5-6 years of age. There is a metal plate that is placed on the inner part of his knee at the growth plate. That will stop it from growing some while the outer part is allowed to catch up. We will follow up next year with Dr. Souder to have a follow-up x-ray and check how his knees are progressing and discuss the surgery more then.
While we were there I did mention about the ACL issue with Catel-Manzke Syndrome. Great news!!!! He did confirm John does have ACL’s. As in if they are fully functional, that is something we will just monitor while John grows to make sure they do not give any issues to him. As in a surgery to fix any issues with ACL, we were told that would not be till he is a lot older. So it is just a waiting game, unfortunately.
Also, we will be switching from SMO to AFO braces. Since John is still walking on his toes with his braces and there is not a huge improvement with his ankles, legs, knees. They do seem to have stabilized him which is good news. With the AFOs, John will not be able to walk on his toes with the braces. Dr. Souder does want us to be able to take breaks from the braces. So John will obviously be wearing them when out and about but while at home, we would be taking them off to give his own muscles and ligaments a chance to strength from walking around and a rest from the braces.
John has been officially diagnosed with SPD (sensory processing disorder). His occupational therapist sent a letter for me to forward to his primary doctor, Dr. Meza, school, and nursing agency.
Here are the findings in the words of an Occupational Therapist:
“In the realm of sensory seeking, John is noted to crave movement and touch sensations. He can be found in constant motion as well as needing to explore objects in his environment.
This indicates possible difficulties in vestibular, proprioceptive and touch processing. Therefore, he is in constant motion. Ways to make his surroundings more advantageous for moving, yet increasing attention would be providing surfaces with slight instability, such as sitting on cushions, pillows or standing on stability disc etc. This would provide much-needed movement in a stationary area. To assist with touch processing, increase items in his environment in which have a variety of textures. This will allow a bombardment of his touch system to
provide the needed information to hit his threshold quicker.
On the converse side, you have the area of sensitivity to touch sensations. This appears to be with others touching him or being near others. Again, this is based off limited proprioception (body awareness). John struggles with knowing his boundaries in space and therefore predicting interaction is difficult. Work on increasing body awareness would assist with comprehension of boundaries. Ways to achieve this are animal walks and crawls. Allowing for crashing activities. This way John can gain information on the body using deep pressure. If this is provided throughout the day, I would anticipate that his negative reactions with unexpected touch and proximity to friends would decrease.
Upon further investigation of scores, John is a bystander or passively receives information when his surroundings are cluttered. Especially with visual information. At times it may appear that John is not “paying attention”, when in fact, his attempting to filter information. This will come across aloof and inattentive. Assistance can be provided by decreasing visual clutter. Such as on papers, just black and white with few lines for distractions. This is hard to achieve in a classroom setting and therefore I would encourage allowing John to move around his environment to increase his awareness and allow for improved accommodation (filtering) skills.
Lastly, the area of avoiding. John will seek to avoid sensory overload with avoiding a task. This will possibly manifest in behavior that are interpreted as stubborn, aggressive and aloof. All of this is to control his environment. Bear in mind, that John has spent a great deal of his young life in the hands of others where he lacked complete control. Allowing him some of that control back will decrease negative behaviors. These behaviors are, in my opinion being driven by sensory processing difficulties. In closing, John experiences difficulties in overall processing. This is driving him to seek movement and touch experiences. In the same token, it will drive him to limit those experiences if he becomes overwhelmed. Thus, causing negative behaviors. If we can determine allowing John the opportunity to seek activities which provide movement and touch sensations, all while providing him the control, emotional responses will improve and thus, in turn, age-appropriate skills.”