My name is Brenda and I posted my daughter Allana's story on here and haven't been back since. I have questions and need advice.
My little girl was diagnosed with Ideopathic Infantile Scoliosis when she went in for her 1 year check up. I had been complaining to my doctor for months that she would not sleep on her back, her head tilted, and she always rolled 1 direction. She was slow to start crawling and had a difficult time.
She had an MRI, catscan, xrays and was determined to have a 63 degree curve. She was placed in a TLSO brace and I returned in 2 weeks to have her first check up. In her brace she was 53 degrees but they took no xrays of her without it.
I was scheduled for her first 3 month check up and here are my problems, please help.
When I arrived for her check up which she see'd her Orthopedic Spinal Specialist and then the orthopedic specialist who made her brace, so I can relay info to him to adjust her brace. I was turned away due to her state medical card being denied. The state failed to notify me of my daughters ineligibilty. Then I had to apply for Chip program due to my husbands income, which really isn't that much and now I have to wait 45 days for an answer.
I refuse to return to her specialist now do there much rudeness and inconsideration for my daughter. They just turned us away with no regard.
I didn't even have the chance to explain how I no longer think my daughters brace fits right, she is miserable, and I worry about her well being without it and did not even get to see if shes getting better or worse.
So out of anger and wanting my daughter to be well again I want the best for her so I sent my ap to Shriners in Portland, 8 hours away but in my mind necessary.
I know long post but here are my questions, please help.
1, How long will I expect to wait for a return from Shriners on Allanas ap, she need to be seen yesterday!!
2, Will she be able to do follow ups closer to home?
3, My daughter (19) months old is still not walking, she walks along things and holding my hand, but seems far from doing it on her own, anyone else see this with there little ones.
4, Also my daughter started out walking on the TOPS of her feet, now so that her feet have a major arc and almost seemed deformed, there getting better but am still worried, anyone?
5, Allana also seems to be behind on her speech any links maybe.
See when she was born the used vaccum suction, that caused a calcification on her skull, so she has a lump on her skull where it was pulled together on the left side of her head, the same way the curve in her back goes, does anyone think theres a connecion.
All of her doctors have seemed so unconcerned and I am looking forward to going to Shriners, I was just hoping other parents of babies with scoliosis maybe could give me some type of advice or input.
Please contact me!!!!!
Sorry for the long post, I found it necessary
THANK YOU
My little girl was diagnosed with Ideopathic Infantile Scoliosis when she went in for her 1 year check up. I had been complaining to my doctor for months that she would not sleep on her back, her head tilted, and she always rolled 1 direction. She was slow to start crawling and had a difficult time.
She had an MRI, catscan, xrays and was determined to have a 63 degree curve. She was placed in a TLSO brace and I returned in 2 weeks to have her first check up. In her brace she was 53 degrees but they took no xrays of her without it.
I was scheduled for her first 3 month check up and here are my problems, please help.
When I arrived for her check up which she see'd her Orthopedic Spinal Specialist and then the orthopedic specialist who made her brace, so I can relay info to him to adjust her brace. I was turned away due to her state medical card being denied. The state failed to notify me of my daughters ineligibilty. Then I had to apply for Chip program due to my husbands income, which really isn't that much and now I have to wait 45 days for an answer.
I refuse to return to her specialist now do there much rudeness and inconsideration for my daughter. They just turned us away with no regard.
I didn't even have the chance to explain how I no longer think my daughters brace fits right, she is miserable, and I worry about her well being without it and did not even get to see if shes getting better or worse.
So out of anger and wanting my daughter to be well again I want the best for her so I sent my ap to Shriners in Portland, 8 hours away but in my mind necessary.
I know long post but here are my questions, please help.
1, How long will I expect to wait for a return from Shriners on Allanas ap, she need to be seen yesterday!!
2, Will she be able to do follow ups closer to home?
3, My daughter (19) months old is still not walking, she walks along things and holding my hand, but seems far from doing it on her own, anyone else see this with there little ones.
4, Also my daughter started out walking on the TOPS of her feet, now so that her feet have a major arc and almost seemed deformed, there getting better but am still worried, anyone?
5, Allana also seems to be behind on her speech any links maybe.
See when she was born the used vaccum suction, that caused a calcification on her skull, so she has a lump on her skull where it was pulled together on the left side of her head, the same way the curve in her back goes, does anyone think theres a connecion.
All of her doctors have seemed so unconcerned and I am looking forward to going to Shriners, I was just hoping other parents of babies with scoliosis maybe could give me some type of advice or input.
Please contact me!!!!!
Sorry for the long post, I found it necessary
THANK YOU
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