Therapist
Questions & Answers - Special Needs & Medical Diagnoses
My niece was born with micracephaly...I think that's how you spell
it. And we were told that she would have developmental delays... which
was true. She didn't walk until she was two; she is now almost four and
is only at an eighteen month level. The problem is that the doctors seem
to be treating her like she is a normal child who has adhd which, in my
opinion, I have a two year old and a one year old. She is by no means
hyperactive.
She does not seem to be getting the help that she needs; they send her
to speech and physical therapy once a week but it does not seem like the
help that she needs and me and my mom and her mom are getting very
frustrated that this little girl is just falling farther and farther
behind. She will be four soon and just got off the bottle and she ended
up losing two lbs which she cannot afford to lose ...she only weighs
about nineteen pounds because she refuses to eat. And we are very
concerned and we don't know what to do for this little girl. Her mother
is at her wits end. Please give me some suggestions on who to call to
get some help for my niece.
Thank you for your question regarding your niece. Microcephaly is a
condition which means basically a smaller than average head size for a
child's age due to some abnormality in the brain or lack of brain
growth. The majority of children with this diagnosis have developmental
delays, although not always, but it is often associated with things such
as delayed speech and motor skills, seizures, mental retardation and
hyperactivity.
I would agree that your niece sounds like she needs more than just
physical and speech therapy one time per week. I am also concerned with
the weight loss you mentioned and her refusal to eat. She would
definitely benefit from a feeding evaluation, as this is a separate
therapy that focuses on helping children learn feeding and oral motor
skills. An occupational therapy evaluation may also be beneficial to
determine if your niece has any sensory issues (oral hypersensitivity,
problems with textures in food, etc) that are contributing to her
refusal to eat.
I am wondering if her present therapies are only out-patient in
nature, or does she attend an early intervention preschool program?
Since I do not know where you live, I would suggest looking into your
town's 3-5 early intervention preschool services (you should be able to
contact your pediatrician or local school district for information),
since many areas provide 5 day per week preschool programs which provide
the necessary therapies that it sounds like your niece needs. She should
have a full team evaluation and an IEP (Individualized Education Plan)
should be written detailing her goals for therapy. I would also suggest
being more pro-active and assertive with her pediatrician, particularly
due to the feeding issues, since her weight loss and refusal to eat are
impacting her health and growth. Please don't hesitate to contact us
again and let us know your hometown if we can be of assistance in trying
to locate appropriate early intervention services in your area.
Therapist
Questions & Answers - Special Needs & Medical Diagnoses