Cassidy

 
 
Medical Story

Cassidy was born 5 weeks premature with no complications during pregnancy or labor, except she had a low body temperature and had to be under a heat lamp for about an hour. She did become jaundice but that subside and we were released from the hospital after 3 days. She developed a hemangioma on the side of her face shortly after birth, which grew to the size of a golf ball, closing off her ear canal. The doctors started prednisone injections into the sight of the birthmark to shrink it. This began at about 3 months of age and continued until about 10 months of age. I was informed that this drug could stunt her growth but she would eventually catch up in size. She was quite small to begin with weighing 5 lbs. 2 oz and 17 in long at birth. Everything seemed normal the first few months except she would not make eye contact with others except me, but that did change at about 3 months old, she became quite sociable. At 7 months old I did notice she wasn't doing other things babies her age were doing but I assumed this was because of her prematurity and she would catch up. At 10 months old Cassidy was referred to a specialist because of poor weight gain. She had been 12lbs for about 4-5 months without gaining weight. At this time she was diagnosed with failure to thrive and we were referred to birth to 3 program which they would start physical therapy and speech therapy. Cassidy would gag a lot when eating baby food and table food. When therapy's stated we realized she had joint laxity especially in her hips. At this time Cassidy would 'army" Crawl but not get upon her hands and knees. At around 11 months old she started crawling normal and pulling up to a stand on furniture, she seemed to be progressing well. Then at 1 yr. Old she began having seizures. I took her to a well know hospital in my area where she started (and still is) being followed by a neurologist, geneticist and endocrinologist. To this day we cannot find a reason for her seizures or developmental delays. She ahs been tested for several syndromes, fragile x and anglemans's just to name a couple. 2 MRI both normal. Fish test normal and several blood and urine tests to look at chromosomes, sugar levels, hormones and other various things, every thing is normal. Cassidy's eye sight and hearing is excellent. She is 3 years old now and still does not walk; she will cruise furniture or walk when she has something to hang on to. I have taken her to 2 different orthopedics and they both say that there is no physical reason why she can’t walk. They say it is just do to her developmental delays and she will eventually walk. She does say several words now but just a few are understandable. She also does a lot of 'hand ringing" mostly when eating or when she is excited. She can eat table food now with no complications. Cassidy is a very happy child and is quite sociable but prefers to play with adults. She getting better at interacting with other children now. If there is anyone with a child that seems similar to Cassidy or anyone with any suggestions please contact me.

Update 7/17/07

Cassidy is 5 1/2 now. She starting walking in April of 2006. So she has been walking for a little over a year now. She is still unable to run (not like children her age anyway). She is flat footed, so she has inserts is her shoes. Her muscle tone is tightening up now, so I believe that is helping.  The hemangioma on her face is almost gone. There is just a little bit of pink color to it, but it is hardly noticeable.  She is talking a lot now. Some words are still hard to understand, but she talks constantly & is still receiving speech, occupational, and physical therapy.  Cassidy is still on the small side, but there are many children her age that are shorter than her, so she is catching up in size. Cassidy continues to have  seizures, about 2-3 a week, mostly when she is falling asleep, or if she is sick. They are quite short about 5-15 seconds long. We are still trying to find the right combination of meds. She still does the "hand-ringing", but it is a little different now. When she does this her mouth is open and her hands and feet do a ringing motion. It appears that she is in deep thought about something.  This happens on a daily basis.
Cassidy  continues to be tested for any new syndromes that sound like her, but we still haven't had any luck.
 

The last IEP Cassidy had, her scores where quite low. She is at a 2-3 year level. She continues to gain skills, but a a slower rate. She is very sociable and doesn't have any behavioral problems.

Contact: Heather mom to Cassidy at hnorton2@verizon.net

Any troubles with e-mails send to swanusa@undiagnosed-usa.org