Update on my son
Just an update on my son and where we are at the moment…..
After almost 12 weeks now since my son had his stroke, we still don’t have any answers about what caused it. He had his second MRI scan about 4 weeks ago and was given a General anaesthesia as they wanted to do more test which could take over 1 and a half hours, which is a long time for anyone never mind a 7yr old.
In the last week we have seen two consultants, the first was about his blood pressure. He said Ryan is doing great and wants to slowly remove him from the medication that he is on for high blood pressure. This will take almost 3 months to do, and during this time he will be monitored by outreach nurses. This news made us happy and we thought we had turned a significant corner in his recovery. Unfortunately the next consultant has knocked us back again…..
Today we saw the Neurologist, this doctor is in contact with Great Ormond Street Hospital and they have added a new name for his condition. Posterior Reversible Encephalopathy Syndrome or PRES. This in short means his condition has been brought on by very high blood pressure, but we are no closer to knowing why… Our concern now is we are starting to remove his safety net of medication with the hope that this condition (PRES) does not recur. I know the consultants know what they are doing, but we can not help feeling a little anxious about it. I know for one that I will be watching him very closely now, and we had just started to relax a little in the last few weeks, as he has made big improvements with his energy levels.
We did get to see his MRI scans which I found very interesting, but it really does show just how fragile we all are when you can see inside. Ryan did not like seeing them at all, but then again, it’s lot for a 7yr old to take in.
So what’s next? Apart from the reduction of his blood pressure medication and possibly also his medication for stroke (we are still awaiting an answer to this) he needs to go for an eye check up, because the doctor today did a visual field check, and Ryan missed a few, but we are hoping he just didn’t catch what the doctor was doing and that his eyesite is ok.
THANKS AGAIN FOR READ THIS,
Lee.
After almost 12 weeks now since my son had his stroke, we still don’t have any answers about what caused it. He had his second MRI scan about 4 weeks ago and was given a General anaesthesia as they wanted to do more test which could take over 1 and a half hours, which is a long time for anyone never mind a 7yr old.In the last week we have seen two consultants, the first was about his blood pressure. He said Ryan is doing great and wants to slowly remove him from the medication that he is on for high blood pressure. This will take almost 3 months to do, and during this time he will be monitored by outreach nurses. This news made us happy and we thought we had turned a significant corner in his recovery. Unfortunately the next consultant has knocked us back again…..
Today we saw the Neurologist, this doctor is in contact with Great Ormond Street Hospital and they have added a new name for his condition. Posterior Reversible Encephalopathy Syndrome or PRES. This in short means his condition has been brought on by very high blood pressure, but we are no closer to knowing why… Our concern now is we are starting to remove his safety net of medication with the hope that this condition (PRES) does not recur. I know the consultants know what they are doing, but we can not help feeling a little anxious about it. I know for one that I will be watching him very closely now, and we had just started to relax a little in the last few weeks, as he has made big improvements with his energy levels.
We did get to see his MRI scans which I found very interesting, but it really does show just how fragile we all are when you can see inside. Ryan did not like seeing them at all, but then again, it’s lot for a 7yr old to take in.
So what’s next? Apart from the reduction of his blood pressure medication and possibly also his medication for stroke (we are still awaiting an answer to this) he needs to go for an eye check up, because the doctor today did a visual field check, and Ryan missed a few, but we are hoping he just didn’t catch what the doctor was doing and that his eyesite is ok.
THANKS AGAIN FOR READ THIS,
Lee.
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