Well, my son Alex was doing pretty good with the LDN. Started at 1.5 on 1/28 for 5 days and then went to 3mg for 3 days and then 4.5 since that time. He has gained 30 lbs since his resection surgery in December and returned to work a couple weeks ago.
HOWEVER, we had to run to ER last night due to #10+ pain in upper abdomen/chest. Lots of vomiting and unable to eat/drink. After CTscan and blood work, they discovered his white cells are up as well as billyruben (sp?). They think he has gall stones as the scan showed inflamation in gall bladder, bile duct and he has pancreatitis. They are unsure if this is related to his Crohn's, but did say that he is more likely to have this happen becuase of the small bowel resection surgery in December. I was afraid of blockage, stricturing or abscess but I'm not sure this is any less painful; in fact it may be a bit more painful...only he knows the answer to that.
I wanted to let everyone know that the pain meds did work...even though he is taking LDN. They gave him a lot of dilaudid, but it did cut the pain level from agony and feeling like he was dying to a #8. My worst fear when starting LDN is that he would end up in the ER and pain meds would not work at all due to the opiod block. I have had to explain to every doctor what LDN is and why we are using it in the low dose. None of them have heard of Naltrexone used in the low dose form and a couple have asked (before I had a chance to explain) whether he was using for "abuse" (heroin use). Then i explain the reason for low-dose and use for auto-immune diseases. Some still look at me as though they are confused, or maybe it's because I'm just a Mom explaining the use of a drug in a way they have never heard. I'm not sure if it's because they just don't know about it or if they think I'm crazy.
I now have a new dilema. He didn't take the LDN last night and will be here a few more days without it. Then he will have to have gall bladder removed in a couple weeks if there are stones. I'm afraid of what may happen by missing that many doses...but he can't take it now because of the need for pain meds and the potential for a surgical procedure. Has anyone ever missed a couple weeks doses and then started right back on the LDN afterward?
GI doc just left room and told us that the CTscan showed a thickened loop in small bowel and cautioned us against this experimental medicine. She says that the MRI is to see if he has a different disease realted to the bile duct...doesn't sound good at all and she told me not to read about it until we knew for sure if that was something more to worry about. My anxiety level is at MAX level right now. No one should have to go thru this at any age, but especially not a 21yo young man.
I guess we have to take it piece by piece as they give us new information and make decisions based on everything they find. This is just awful...the wait...the worry...the fear of what they may find out, etc. If you pray, please say one for my Alex.
Thanks everyone.
HOWEVER, we had to run to ER last night due to #10+ pain in upper abdomen/chest. Lots of vomiting and unable to eat/drink. After CTscan and blood work, they discovered his white cells are up as well as billyruben (sp?). They think he has gall stones as the scan showed inflamation in gall bladder, bile duct and he has pancreatitis. They are unsure if this is related to his Crohn's, but did say that he is more likely to have this happen becuase of the small bowel resection surgery in December. I was afraid of blockage, stricturing or abscess but I'm not sure this is any less painful; in fact it may be a bit more painful...only he knows the answer to that.
I wanted to let everyone know that the pain meds did work...even though he is taking LDN. They gave him a lot of dilaudid, but it did cut the pain level from agony and feeling like he was dying to a #8. My worst fear when starting LDN is that he would end up in the ER and pain meds would not work at all due to the opiod block. I have had to explain to every doctor what LDN is and why we are using it in the low dose. None of them have heard of Naltrexone used in the low dose form and a couple have asked (before I had a chance to explain) whether he was using for "abuse" (heroin use). Then i explain the reason for low-dose and use for auto-immune diseases. Some still look at me as though they are confused, or maybe it's because I'm just a Mom explaining the use of a drug in a way they have never heard. I'm not sure if it's because they just don't know about it or if they think I'm crazy.
I now have a new dilema. He didn't take the LDN last night and will be here a few more days without it. Then he will have to have gall bladder removed in a couple weeks if there are stones. I'm afraid of what may happen by missing that many doses...but he can't take it now because of the need for pain meds and the potential for a surgical procedure. Has anyone ever missed a couple weeks doses and then started right back on the LDN afterward?
GI doc just left room and told us that the CTscan showed a thickened loop in small bowel and cautioned us against this experimental medicine. She says that the MRI is to see if he has a different disease realted to the bile duct...doesn't sound good at all and she told me not to read about it until we knew for sure if that was something more to worry about. My anxiety level is at MAX level right now. No one should have to go thru this at any age, but especially not a 21yo young man.
I guess we have to take it piece by piece as they give us new information and make decisions based on everything they find. This is just awful...the wait...the worry...the fear of what they may find out, etc. If you pray, please say one for my Alex.
Thanks everyone.