- New Member
- Posts: 1
- Joined: Fri Mar 11, 2016 3:32 pm
- Diagnosis: SMA daughter
- Diagnosed: 2015
- City: London
- State or Province:
- Country: UK
Mary Bodzo recommended I contact you regarding my daughter Helena, who has just come down with a cold.
Helena was diagnosed at 8 months between a type 1 & 2. She never sat unsupported and she has significant weakness in her arms and legs. She has been assessed as not requiring additional ventilation support during a sleep study in late December, though her arm weakness has worsened since then and her ability to sit with minimal support.
Last night she developed a fever and vomited and had a runny nose. I took her to the hospital for assessment as I was concerned what her SATs etc might be like as we have no capacity to monitor this at home. Mary mentioned that she may also additional support due illness due to the metabolic aspect of SMA to give her a chance to recover and not further stress her muscles.
At the hospital her oxygen SATs were 95%, though she is not currently mucousy. I explained to the doctor that I would like her to have bipap support and contiuous oxygen sat monitoring over night while she is unwell, but she didn't agree and said even if she did agree that there was no bipap available at the hospital. This made me concerned that if this cold does become mucousy that she are no facilities to support her needs.
We tried to contact the neurology unit in London for their advice, but they said Helena must first be referred by our local unit before they will assess her.
I've spoken to another SMA mother who has recommended we are referred to the Brompton in London, but I'm again concerned that our unit won't refer her.
I just wanted to ask your specialist opinion on this and whether there was an advice you could give us as to whether we are worried unnecessarily, or whether we are right to try and push this further?
Many thanks for your time and best wishes,
- Medical Director
- Posts: 135
- Joined: Wed Nov 11, 2015 3:07 pm
- City: Newark
- State or Province: NJ
- Country: USA
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School
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