9/30: Waiting...
Unfortunately Friday afternoon came and went and I didn't get Leo's MRI results from Dr. Burzynski. He has a lot of patients and unfortunately didn't have time for Leo's MRI, but promised the final results Monday.
In the mean time, we have come to the realization that we need the doctors to give us their opinions and advice (and prescriptions), but we need to make the final decisions when it comes to Leo. For example, we somehow started moving down the path of a feeding tube, either nasogastric (NG) or a percutaneous endoscopically placed gastrostomy (PEG) tube. The NG goes through the nose and into the stomach, while the PEG is surgically placed in the belly. Both can provide nutrition, medicine, liquids, etc. Why? We think this was partly Dr. Kroin's idea, since we said that Leo hasn't been eating very well. We also called Houston this morning and spoke to Dr. Barbara about an NG tube, since it doesn't require surgery. She said if we're going down this route, the NG isn't a very good solution, since it would need to be replaced every 2-3 days and is very uncomfortable. So a PEG would be the better option, but again, it requires surgery. Both provide ample opportunity for infections. Regardless, we were ready (kind of still are) to go to the hospital for an evaluation and one of these procedures and almost did, but somehow decided against this right now.
On the other hand, Leo's drinking isn't better. He drinks thin liquids much better than the thick ones. While the thin ones hydrate him and provide vitamins, the thick ones provide more calories and protein. Since he isn't eating well, his caloric intake is probably too low, which is why we keep pushing the thicker ones, which come up through his nose when he coughs. The reason Leo isn't eating well is because he can't or won't open his mouth. He'll open it just enough to drink, but not to eat, and we don't know why. We thought this happened when he was off antineoplastons (i.e. another decadron side-effect), but he's been on all week and this hasn't improved. It shouldn't be thrush (his mouth looks clear), but there's a chance it may be something like a sore throat, which everyone has had around here. A few times I asked if his throat hurt and about half the time he said yes. So what we're thinking of doing, and will discuss with Houston on Monday, is to lower his dose of antineoplastons to the bottom of the therapeutic range to minimize the amount he needs to drink.
The only bit of good news I can report is that Leo's now down to 8mg of decadron per day and we actually have seen several improvements. In addition to getting his voice back (but not the speech yet), he has begun to move both shoulders and arms much better than before -- including the right one, which was one of the first things to go. Tonight we also saw movement in his toes. Obviously he's got a long way to go before being back to normal/full function, but we are clearly moving in the right direction in this regard. The best-case scenario is for Leo to be down to 3mg of decadron by the end of October, which seems like eternity right now.
In the mean time, we have come to the realization that we need the doctors to give us their opinions and advice (and prescriptions), but we need to make the final decisions when it comes to Leo. For example, we somehow started moving down the path of a feeding tube, either nasogastric (NG) or a percutaneous endoscopically placed gastrostomy (PEG) tube. The NG goes through the nose and into the stomach, while the PEG is surgically placed in the belly. Both can provide nutrition, medicine, liquids, etc. Why? We think this was partly Dr. Kroin's idea, since we said that Leo hasn't been eating very well. We also called Houston this morning and spoke to Dr. Barbara about an NG tube, since it doesn't require surgery. She said if we're going down this route, the NG isn't a very good solution, since it would need to be replaced every 2-3 days and is very uncomfortable. So a PEG would be the better option, but again, it requires surgery. Both provide ample opportunity for infections. Regardless, we were ready (kind of still are) to go to the hospital for an evaluation and one of these procedures and almost did, but somehow decided against this right now.
On the other hand, Leo's drinking isn't better. He drinks thin liquids much better than the thick ones. While the thin ones hydrate him and provide vitamins, the thick ones provide more calories and protein. Since he isn't eating well, his caloric intake is probably too low, which is why we keep pushing the thicker ones, which come up through his nose when he coughs. The reason Leo isn't eating well is because he can't or won't open his mouth. He'll open it just enough to drink, but not to eat, and we don't know why. We thought this happened when he was off antineoplastons (i.e. another decadron side-effect), but he's been on all week and this hasn't improved. It shouldn't be thrush (his mouth looks clear), but there's a chance it may be something like a sore throat, which everyone has had around here. A few times I asked if his throat hurt and about half the time he said yes. So what we're thinking of doing, and will discuss with Houston on Monday, is to lower his dose of antineoplastons to the bottom of the therapeutic range to minimize the amount he needs to drink.
The only bit of good news I can report is that Leo's now down to 8mg of decadron per day and we actually have seen several improvements. In addition to getting his voice back (but not the speech yet), he has begun to move both shoulders and arms much better than before -- including the right one, which was one of the first things to go. Tonight we also saw movement in his toes. Obviously he's got a long way to go before being back to normal/full function, but we are clearly moving in the right direction in this regard. The best-case scenario is for Leo to be down to 3mg of decadron by the end of October, which seems like eternity right now.
posted by Yury at 10:01 PM
1 Comments:
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