Mary
2010 Update: Recently upgraded and different diagnosis -Bilateral Perisylvian Polymicrogyria with Worster-Drought Syndrome. Finally, everything is coming together, and it makes sense. She still has some issues with eating and weight gain, but we are making progress. Speech and eating is her main issues, along with the dental problems.
5/2009 Mary's Story:
I was so interested in your story, as my daughter Mary also has Pachygyria, but not as severe as what is on the website. In fact, I could never find anything about HER condition, and got very depressed when I read about the others.
We just found out that Mary had Pachygyria in May 08. She was 5 at the time, 6 now, and will be 7 in August. It was strange because that was her third MRI, and no one picked it up before. I was so shocked and that diagnosis changed our lives forever.
Mary was born at 8 pounds 11 ounces, and I was induced 3 weeks early. She came out vaginally, but with her left foot smashed into her left temple, which pushed the poor brain-she had a huge hematoma in the pariental region of her brain on the right, and bleeding in her brain both sides of the occipital area. The doctors thought it was just positional, as my other three children "came out" normally with no problems. However, when I brought her home, I discovered that she wasn't eating right, and when we brought her to the pediatrician, we found out that she had no suck or gag reflex. So, she was admitted to the hospital and stayed for a week there for testing. She STILL had no diagnosis, but was a very floppy baby. We were given feeding supplies, as she had an ng tube, a heart and respiratory monitor, and only one nurse follow up visit.
Long story short, Mary was going off of the cerebral palsy hypotonic diagnosis, which gave her services until she was diagnosed with Pachygyria of the temporoocciptial area, which then cut her off of PT and OT. She receives speech at the local university, as I homeschool (this was the BEST thing for her and us, as we also were not eligible to receive a resource person for school, and the speech there was sporadic), and is not eligible for any other services. Mary talks (not very much, has expressive delays, and auditory processing disorder, but CAN communicate pretty good), walks (uses an orthotic with her left shoe, as her left leg is smaller and shorter than her right), and eats (still cannot rotary chew, and we have to watch the choking episodes, and does have some dyscoordination of swallow), and reasons pretty good. She is a wonderful reader, is learning how to write, but math is the greatest challenge. She is a cheerful, sweet girl with blond hair and big blue eyes, and a good sense of humor. It is sad because she does complain that no one listens to her, and I do find my others talking over her and finishing her sentences. Mary's hypotonia really affected her facial and eating muscles, but are getting better as time goes on. I personally think she is becoming more hypertonic, as she now has quite a strong grasp, and her tendons are showing through more.
I really felt connected with your writings about your son, and his medical journey. Everytime I go on the Lissencephaly websites I get discouraged. By the way, knock on wood, Mary does not have any seizures, which I am so grateful for, because I don't know how I would handle those. I am hoping it stays that way too.
I cannot tell you how excited I am to actually converse with someone who has a child similar to mine. I feel very lonely, if that is a good word to use, in regards to her condition. She looks "normal" so everyone's expectations are higher, and she is not so "disabled", so I have friends and family who just don't get it.. Even the doctors don't seem to know. Very few add their two cents or talk to me.
Bridget
lodge.mark@hotmail.com
You may write to Bridget directly if related to Pachygyria. Thank you.