Paul from Australia
10-27-2008, 07:05 PM
Hello.
Tuesday 28th October.
Grant is extremely unstable. The instability has come on very quickly. Normally there is a slow buildup, but this has almost been pow :(
Since Saturday evening his seizures have been almost out of control. In the last 36 hours Grant has had 5 Paraldehyde doses, which is a lot. We can only give 3 doses over a 24 hour period.
In between he has also had Valium (Diazapam), as well as Frizium, which added together is a lot of benzo's :(
We have increased his Dialiantin (Phenytoin), and last night we started back on oxygen, something which technically he doesn't absolutely have to have as the sleep apnea is very minor. We are doing all that we can here but not having much success :mad:
SEIZURE TYPE
The seizures are quite violent tonic/clonic coming completely out of the blue. What is very difficult is that not only is the seizure violent requiring immediate sedation, but Grant also gags and needs immediate suctioning. Doing both ends at once is very difficult. Fortunately there is a carer here today, so we managed to give him the Paraldehyde after another violent seizure about 10 minutes ago. He has had a small bowel movement as a result of the Paraldehyde, but the Paraldehyde did hit the mark and he is counting kangaroos.
In between the bad seizures he is either asleep, or when awake he might be doing the mouthing head tossing type seizure. He is rarely stable at the moment when awake :(
HOSPITAL
Alison and I tonight will have to decide what to do. Clearly at the moment our efforts are only putting a temporary stop to the seizure activity. Having Grant sleep all the time and only wake up and be in seizure activity is not good. The difference with Grant being in hospital as opposed to him being home is that in hospital they can put a line in and knock him out good an proper, while watching him closely regarding breathing.
We will work out a plan tonight as to when if an ambulance is called.
PRAYERS
Please pray that Grant will stabilize and not need to go to hospital. We are now simply too old for this hospital stuff. I would not be allowed to spend the night with Grant and we can't afford to stay near the hospital, although one positive regarding transport is that there is now a new highway that has opened which means it is possible to get to the hospital in about 50 minutes during peak hour traffic as opposed to 1 1/4 hours in the olden days.
If Grant goes to hospital he will have to go back on the tinned Jevity muck. That is something we have to accept. Hopefully the doctor would write up the nutrients that Grant is on.
SUMMARY
Grant is extremely unstable and this instability has come on very quickly. Hospital is looking likely unless we have a breakthrough.
With love and hugs to your precious kiddos.
Paul, Alison and Grant unfortunately extremely unstable.
Tuesday 28th October.
Grant is extremely unstable. The instability has come on very quickly. Normally there is a slow buildup, but this has almost been pow :(
Since Saturday evening his seizures have been almost out of control. In the last 36 hours Grant has had 5 Paraldehyde doses, which is a lot. We can only give 3 doses over a 24 hour period.
In between he has also had Valium (Diazapam), as well as Frizium, which added together is a lot of benzo's :(
We have increased his Dialiantin (Phenytoin), and last night we started back on oxygen, something which technically he doesn't absolutely have to have as the sleep apnea is very minor. We are doing all that we can here but not having much success :mad:
SEIZURE TYPE
The seizures are quite violent tonic/clonic coming completely out of the blue. What is very difficult is that not only is the seizure violent requiring immediate sedation, but Grant also gags and needs immediate suctioning. Doing both ends at once is very difficult. Fortunately there is a carer here today, so we managed to give him the Paraldehyde after another violent seizure about 10 minutes ago. He has had a small bowel movement as a result of the Paraldehyde, but the Paraldehyde did hit the mark and he is counting kangaroos.
In between the bad seizures he is either asleep, or when awake he might be doing the mouthing head tossing type seizure. He is rarely stable at the moment when awake :(
HOSPITAL
Alison and I tonight will have to decide what to do. Clearly at the moment our efforts are only putting a temporary stop to the seizure activity. Having Grant sleep all the time and only wake up and be in seizure activity is not good. The difference with Grant being in hospital as opposed to him being home is that in hospital they can put a line in and knock him out good an proper, while watching him closely regarding breathing.
We will work out a plan tonight as to when if an ambulance is called.
PRAYERS
Please pray that Grant will stabilize and not need to go to hospital. We are now simply too old for this hospital stuff. I would not be allowed to spend the night with Grant and we can't afford to stay near the hospital, although one positive regarding transport is that there is now a new highway that has opened which means it is possible to get to the hospital in about 50 minutes during peak hour traffic as opposed to 1 1/4 hours in the olden days.
If Grant goes to hospital he will have to go back on the tinned Jevity muck. That is something we have to accept. Hopefully the doctor would write up the nutrients that Grant is on.
SUMMARY
Grant is extremely unstable and this instability has come on very quickly. Hospital is looking likely unless we have a breakthrough.
With love and hugs to your precious kiddos.
Paul, Alison and Grant unfortunately extremely unstable.