Varsha Das's Page

Hi Varsha,
Hope your sensory camp went well. In her August 10th comment, Paula Lamigo mentioned OT services, too. Looking forward to your participation. Best, Linda

The kids are going to love sensory camp - I hadn't heard of one before and am sure it will be a great time for all. I'll have a look through my OT info and cull selections that might be helpful to others, so I welcome the extra time, too. Thanks for participating- and best wishes on your fun and meaningful summer endeavor. Linda

Hi Varsha,
I just got Skyler's fall Kindergarten placement set - we are so fortunate that our elementary school has a dedicated OT classroom/clinical setting! Looking forward to seeing your OT Forum if that's still a consideration for you- I'll be happy to participate. Best, Linda

If you click on the Forum section in either location, the Forum box at the bottom left on the Home Page or the Forum tab at the top of the website, you should be all set to type in your forum discussion points/questions. There are really two major points of interest, I believe. One is to learn if many aHUS kids are participating in an OT program (and in which areas) - perhaps exploring a possible neurological link with fine/gross motor issues that might be connected to the genetic mutations. The other is to find if many aHUS kids share sensory issues, perhaps a commonality for chronically ill kids in difficult medical situations (cancer, for example).
If you need recertification credit for your state's professional license bureau, perhaps you could use the above for an independent study- a novel way to look at it. Many parent's might not have considered OT as a need for their child, so links to self-tests and to resources would be welcome for both interest areas. Looking forward to seeing you begin and yes, I'lll jump right in! Thanks in advance for your expertise in helping other aHUS parents. Linda

Hello,
Thanks for adding a post about your interest areas - your special expertise is of great interest to me personally, as both Hunter and Skyler had a need for OT. For Hunter, sensory issues combined with fine motor skill issues. We were lucky enough to find a suberb therapist who saw Hunter twice a week in a clinical setting. Skyler's issues are mostly fine/gross motor skills. Amazingly, Skyler can do some pretty difficult multistep things, like hit a baseball pitch at 4 years old yet he still switches hands when tools are across the midline. Spatial sense seems an issue as well, accounting for a degree of clumsiness and perplexing folks when he has difficulty putting his arm into his jacket sleeve. Skyler has always been a sensory seeker, particulaly with tactile things like sand play.
I believe that since Hunter presented with aHUS at 10 months, he may have developed different coping mechanisms to deal with the phsical and mental difficults of treatment. Dressing changes were the worst! Hunter had a feeding tube that was used for liquid nutrition for about 2 years, so oral eating was a bit problematic. We were told that few people with aHUS have much of an appetite, so transitioning Hunter from liquid feeds to regular food was a bit of an issue. We took Hunter for a few sessions of hypnotherapy and that seemed to help him with oral nutrition.
I wonder how many aHUS patients need occupational therapy? Perhaps all kids with chronic illnesses and serious/frequent medical interventions delopment sensory diets- that would seem to be logical. One of the items I've seen on aHUS medical questionnaires is in regard to neurological events (like seizures). I'm wondering whether there's some link between having the genetic mutation for aHUS and an increased likelihood of difficulty with fine motor control.
One way you could be of help to us all is to open a forum conversation on ths website to deal with OT. I was lucky because when I learned that my county does early childhood testing, I switched gears. Insteading of worrying if Hunter was devoping skills along the proper developmental timeline, I just had him tested by the experts.
Would you be willing to open a forum to see what OT issues are out there? In speaking with another aHUS parent last year, I referred to the book "The Out-of-Synch Child" and mentioned their checklist for sensory issues. If you could attach a couple of pieces of information about OT/sensory issues and list some helpful sources for parents, I've be forever grateful! Glad you're on the website! Linda

Greetings! It was nice to have you visit and I admit to still being a bit curious about your experiences. We'd love to hear your story, along with your photo entries. Shared stories can be informational to others, but I was surprised at how blogging about our family's aHUS experiences seems to be rather therapeutic to this writer as well. This is your website... craft a comfortable space to support and enlighten yourself and others. Thanks inadvance for your contributions. Linda

Hi Varsha,
Welcome to the newly launched website, created as a social networking site for patients and families dealing with a diagnosis of atypical HUS. We look forward to hearing your story and hope that this site will be a source of inspiration, information, and insight. Linda