Intro/developing diagnosis?/MRI - long
Feb 5, 2015 12:29:24 GMT -5
Post by bzeetyd on Feb 5, 2015 12:29:24 GMT -5
Hello everyone -
I'm BzeetyD - same username as on TB. I found your resurrected group here after lurking around there. I'm recently back from a self imposed hiatus and wandered into the upset that is happening on the boards. I've had a 4+ year stint on TB dealing with a history of losses (4) and infertility (4 IVFs plus other junk before that - I was a regular on IFV) but I have never been on this board.
I'm 39. I'm married to an incredible guy, we have an 11mo old daughter. We live in the Twin Cities. I work in the creative field in and around graphic design.
Our daughter, Bug, is an easy-going, social, smiley girl. She has had a series of needs arise in the past months. When she was 9-10 months she was diagnosed with a gross motor developmental delay - low tone, especially in her upper chest/back/upper arms. Her fine motor skills are closer to being on track, although a bit behind due to the bigger muscles needing strength. Her cognitive and social skills are on track.
Prior to sitting up, she was hitting her milestones but that proved to be a big one for her. At 9mo she was unable to sit up unassisted and had never lifted her upper chest off the floor while having tummy time. She also had little to no interest in standing and would tuck her feet up when picked up. She started once a week PT at our children's hospital and qualified for services through our school district, which she receives at her Montessori once a week. She's been making good progress and can sit up straightly and strongly by herself now, we're working on transitioning movements from laying to sitting and on starting crawling positions/movements. She's more interested in standing/leaning on me now although it's mostly to have our little dance parties.
Last week we went to the pediatric opthamologist to look at her eyes, both of which occasionally or intermittently turned inwards. We expect to need a patch or drops but we found out that she needs glasses for farsightedness. The turning in was to accommodate her needing to see up close. He also said there was some mild optic nerve atrophy. After asking if she was premature (no) or if there was trauma at birth (not specifically, she had a great APGAR, although I did have an emergency C section because I spiked a fever and she was in distress), the doctor suggested that we have an MRI.
So Bug has a sedated MRI scheduled for Feb 18th. Her pediatrician was fairly causal about it and mentioned that we could find nothing, find a benign tumor or something else. If we don't find anything on the MRI, I will ask to get an appt with a Neurologist and/or Developmental Pediatrician so that we can rule out other causes and, if warranted, pursue genetic testing.
For the IVF cycle that helped produced Bug, we went to C.C.RM in Colorado and had Complete Chromosome Screening (CCS) run on our developed embryos (in this test they take a few cells from the developed embryo and test for all the chromosomes to be complete, because chromosomal challenges are the leading cause of miscarriage, which we were trying to avoid again.) So, we know that Bug is chromosomally sound, but we don't know if she's genetically got something going on.
No professional that we've seen has been concerned about her cognitive or social skills. We're looking forward to getting her glasses (next week) to see how they will help her progress. I'm sure getting her comfortable in them will be a process but seeing clearly should be motivating for her.
I feel that these bigger things (low tone, optic nerve damage) and some other elements (her crooked smile, issues with constipation, assorted quirks) are clustering around a cause - like a prenatal stroke or trauma at birth, so perhaps we'll find a Cerebral Palsy type diagnosis in our future. Or not.
We're nervous for the MRI results, naturally. I hope with everything in me, that it isn't something that would take her away from us. My fear is that it would be a non-survivable cancer, or a degenerative disease. At the same time we welcome more information and want for us to have the very best resources we can to help our girl. It's an emotionally difficult time, and I'm sure many of you understand.
I wanted to introduce myself and Bug and find others out there with similar challenges or those who have been where we are in the journey.
Thanks in advance.
I'm BzeetyD - same username as on TB. I found your resurrected group here after lurking around there. I'm recently back from a self imposed hiatus and wandered into the upset that is happening on the boards. I've had a 4+ year stint on TB dealing with a history of losses (4) and infertility (4 IVFs plus other junk before that - I was a regular on IFV) but I have never been on this board.
I'm 39. I'm married to an incredible guy, we have an 11mo old daughter. We live in the Twin Cities. I work in the creative field in and around graphic design.
Our daughter, Bug, is an easy-going, social, smiley girl. She has had a series of needs arise in the past months. When she was 9-10 months she was diagnosed with a gross motor developmental delay - low tone, especially in her upper chest/back/upper arms. Her fine motor skills are closer to being on track, although a bit behind due to the bigger muscles needing strength. Her cognitive and social skills are on track.
Prior to sitting up, she was hitting her milestones but that proved to be a big one for her. At 9mo she was unable to sit up unassisted and had never lifted her upper chest off the floor while having tummy time. She also had little to no interest in standing and would tuck her feet up when picked up. She started once a week PT at our children's hospital and qualified for services through our school district, which she receives at her Montessori once a week. She's been making good progress and can sit up straightly and strongly by herself now, we're working on transitioning movements from laying to sitting and on starting crawling positions/movements. She's more interested in standing/leaning on me now although it's mostly to have our little dance parties.
Last week we went to the pediatric opthamologist to look at her eyes, both of which occasionally or intermittently turned inwards. We expect to need a patch or drops but we found out that she needs glasses for farsightedness. The turning in was to accommodate her needing to see up close. He also said there was some mild optic nerve atrophy. After asking if she was premature (no) or if there was trauma at birth (not specifically, she had a great APGAR, although I did have an emergency C section because I spiked a fever and she was in distress), the doctor suggested that we have an MRI.
So Bug has a sedated MRI scheduled for Feb 18th. Her pediatrician was fairly causal about it and mentioned that we could find nothing, find a benign tumor or something else. If we don't find anything on the MRI, I will ask to get an appt with a Neurologist and/or Developmental Pediatrician so that we can rule out other causes and, if warranted, pursue genetic testing.
For the IVF cycle that helped produced Bug, we went to C.C.RM in Colorado and had Complete Chromosome Screening (CCS) run on our developed embryos (in this test they take a few cells from the developed embryo and test for all the chromosomes to be complete, because chromosomal challenges are the leading cause of miscarriage, which we were trying to avoid again.) So, we know that Bug is chromosomally sound, but we don't know if she's genetically got something going on.
No professional that we've seen has been concerned about her cognitive or social skills. We're looking forward to getting her glasses (next week) to see how they will help her progress. I'm sure getting her comfortable in them will be a process but seeing clearly should be motivating for her.
I feel that these bigger things (low tone, optic nerve damage) and some other elements (her crooked smile, issues with constipation, assorted quirks) are clustering around a cause - like a prenatal stroke or trauma at birth, so perhaps we'll find a Cerebral Palsy type diagnosis in our future. Or not.
We're nervous for the MRI results, naturally. I hope with everything in me, that it isn't something that would take her away from us. My fear is that it would be a non-survivable cancer, or a degenerative disease. At the same time we welcome more information and want for us to have the very best resources we can to help our girl. It's an emotionally difficult time, and I'm sure many of you understand.
I wanted to introduce myself and Bug and find others out there with similar challenges or those who have been where we are in the journey.
Thanks in advance.
MFI issues
