hemihypertrophyHi, everyone. My heart goes out to all who have posted here.
My seven-and-a-half-year-old daughter has hemihypertrophy. Her right arm and hand are larger than her left (in girth). We noticed the difference at birth. Hemihypertrophy is unfortunately associated with an increased risk of various cancers (e.g., Wilms tumor [kidney cancer], adrenal cortical cancer, liver cancer) and other rare congenital disorders (e.g., neurofibromatosis). Wilms tumor is particularly aggressive and can go from nothing to palpable in six weeks. We have been screening her regularly since birth for abdominal cancers (ultrasounds every three months, abdominal palpation and urine screen for hematuria [blood in the urine; a kidney tumor indicator] in between the ultrasounds, blood screening for AFP [a liver tumor indicator]). She's had many other evaluations as well (e.g., genetic, orthopedic, neurodevelopmental, nutrition, physical therapy, etc.). We cannot assume that an odd bump or mark or other odd symptom anywhere on her is an ordinary thing. All of these evaluations and screenings, of course, involve much effort to make happen (referrals, scheduling, rescheduling, getting results, fixing mistakes, etc.). Even though she is "just fine" in most ways, it's a part time job watching to be sure that nothing changes.
In addition to the overgrowth of her right arm, my daughter has other physical differences: extra space between the fingers of her right hand, unusual palm print, excess curvature (extra concave toward the palm side) of her hand, right shoulder lower than left, right shoulder blade somewhat different than her left, apparent extra soft tissue in her right chest area, mild lordosis (excess inward curve of the lower back). She also has "fetal pads" on her fingers and toes (the pads on her finger and toe tips are bit extra pointy), which I have been told by a geneticist are due to edema in utero. I know of no link between fetal pads and hemihypertrophy, though an internet search shows fetal pads to be related to other congenital disorders.
She also has mild sensory integration issues, best described in laymother's terms as having much keener senses than most folks: she sees more, hears more, feels more. This results in being more aware of, startled by, and irritated by environmental stimuli than most folks. For example, noisy (and quiet) insects flying by are quite frightening to her: she can't stand the unexpected sound and movement right by her ears and eyes. She can feel dizzy due to certain kinds of sounds. She hears things no one else notices until she points it out and everyone gets quiet. (Thankfully, her distress due to these issues seems to be decreasing over time and her skill at coping with the distress she has seems to be increasing.) Her "keen senses" also contribute to precociousness in language, music, and movement (e.g., dance, Tae Kwon Do). She is gifted in a variety of areas and learns powerfully through observation (watching, listening): she speaks, reads and writes three languages, her verbal skills are well beyond her age; she began reading at the age of 2, she could read music at the age of three; she is a skilled pianist (playing piano since she was 2 and a half) and can play anything by ear, she can transpose any song she knows from one key to another instantly and without effort; she can mimic any dance style with grace and accuracy and can learn a Tae Kwon Do poomse (a complex choreographed series of blocks, kicks, and punches) with amazingly little effort and time, etc.
While I feel fairly well informed about screening protocols and hemihypertrophy in general, I still have many questions for which there seem to be no answers. And while I have two friends who deal with chronic health issues in their children due to congenital disorders, they don't know what it's like to screen over and over again for cancer. And, the vast majority of people I know have no idea what it is like to be forever watching and waiting to see if anything horrible will happen to their child. Most of the time I feel like I know more about my daughter's health issues than even her specialists. I have corrected them when they are wrong--which is very disconcerting. While I am proud to be (and tired from being) such a persistent and involved advocate for my daughter, I'd like to be able to count on her specialists to have up-to-date information. I can respect "I don't know" as an answer. I can accept ignorance in a non-specialist. But I don't want misinformation from a specialist.
I have also found it challenging to find health care providers who have any clue about "attachment parenting" type issues. We have "fired" any number of health care providers because they were condescending to us and/or behaved in ways that did not remotely meet our daughter's needs. I am pretty (though not fully) satisfied with our current team.
I've been looking through the archived messages and have seen no posts on hemihypertrophy. Is anyone in this group parenting a child with hemihypertrophy?
Thanks for listening.