I have a seven year old daughter who suffered from cardiac arrest in January 2011, since then she has been in a comatose state - conscious not oriented as the doctors suggested. She is on mechanical ventilation and had a trachestomy procedure, weaning her from the ventilator failed a number of times. She also had a gastrostomy procedure.
Prior the incident she had ataxia, ptosis and some fibre atrophy. We are still not sure as to why her heart stopped but the lack of oxygen to her brain is evident. She has sleep/wake cycles, she yawns, cries and is responsive to pain and light. Her pupils are sometimes dilated, other times not so much.
Since being admitted to hospital she suffers from spasms which till last week were in block form, her muscles were almost permenantly contracted. Last week her spasms changed form, they have become more like on and off. All her body jerks, sometimes up to 30 or more times a minute. The doctors in the NICU are trying to keep it under control but what we understood from them is that it is increasing. It is uncomfortable for her and heart breaking for us to watch her suffer like this.
Can someone please give me advise on, why her spasms have changed form? is this change positive or negative? what tests can be done to identify the cause? is there anything we her parents can do for her?
We are trying to take things one step at a time but this new development has us confused and worried.
I am so sorry for you and your daughter and I hope all will be well, I do not know the answer you are seeking, what do the doctors taking care of her think, have they changed her meds , just a thought that sometimes different meds and different dosage can have effects .Ask them questions , you are entitled to know as much as they know .Good Luck let us know how she is doing ...
Thank you for your kind words of support, her doctors are thinking that this is caused by the lack of oxygen to her brain which happened 4 months ago. I am not sure if symptoms appear such a long time after the incident?? They will be taking her in for a second brain CT scan to see if anything new will show up.
I ask a lot of questions but unfortunately her medical condition has been a mystery to all doctors and no one has been able to offer us a diagnosis for her original illness prior her cardiac arrest (ataxia, ptosis and some fibre atrophy). Therefore, doctors are not even sure if what is happening to her is a development in her original condition or is due to hypoxia on the day of the incident four months ago.
I will never give up hope and will keep looking for answers, hopefully will find a solution. We continue to pray for her well being. Thank you again.
You are so welcome anything I can help with please let me know, we do have a pediatric Heart forum on MH they may have more knowledge ,go back to the forum's page and you will see it listed .put your question in there , a medical Doctor does respond on that Forum ..
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