Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 <<When they operated Margaret what were they trying to accomplish? like cleaning it out, stitching it up or were they looking for something? >> Hi, Everyone.....Cyndi....We only do the operations when it gets so infected and they have to go in and clean the whole back end out.....usually to the tailbone. Twice before this last operation, they sent him home with " marsupial wounds " the size of tennis balls and he was to heal from the inside out. I would have to deal with the packing/gutting 2-3 times a day. This last operation, 2 yrs ago, was suppose to end all that because they did what was called 'the flap.' Basically, they took away the butt divide and pulled skin over to prevent any more ingrown hairs. The surgery on top is OK but he never healed toward the anus area because that is where the most pressure comes from when sitting to poop. It is an area @ 1 inch long and 1/8 " wide. I just keep packing/cleaning it. It will get a fine, thin layer of skin over it for a week or so and then he goes and busts it open again!!! It's not infected, it doesn't bother him, and I won't put him through surgery until it does get infected. The one thing about these cysts is that if the surgery for the first one isn't done correctly, then, you have a pattern of surgeries after. It seems like the cysts have fingers that can spread out and if the surgeon doesn't get all the fingers the first time, then they stay inside and fester, slowly pushing to the top of the skin in other areas. Like , he lives on antibiotics!!! Of course with the MBL deficiency, we know why he's more prone than other kids. Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 OMG Margaret & dear son! Argh & argh. As I was reading this I was cringing for you both & ended up having a righteous rant to hubby about ya'll & any & all times I have felt I was spitting in the wind when trying to convey or deal with some docs in my DJ's life. (Of course, hubby being caught off guard, is looking somewhat bemused from me ranting from seemingly nowhere about people he does not know.... heh) Oh. my. god. When is enough enough?! Humongous heart hugs for everyone on the list. Kris > > <<When they operated Margaret what were they trying to accomplish? like > cleaning it out, stitching it up or were they looking for something? >> > > Hi, Everyone.....Cyndi....We only do the operations when it gets so > infected and they have to go in and clean the whole back end out.....usually to > the tailbone. Twice before this last operation, they sent him home with > " marsupial wounds " the size of tennis balls and he was to heal from the inside > out. I would have to deal with the packing/gutting 2-3 times a day. This > last operation, 2 yrs ago, was suppose to end all that because they did > what was called 'the flap.' Basically, they took away the butt divide and > pulled skin over to prevent any more ingrown hairs. The surgery on top is OK > but he never healed toward the anus area because that is where the most > pressure comes from when sitting to poop. It is an area @ 1 inch long and > 1/8 " wide. I just keep packing/cleaning it. It will get a fine, thin > layer of skin over it for a week or so and then he goes and busts it open > again!!! It's not infected, it doesn't bother him, and I won't put him through > surgery until it does get infected. The one thing about these cysts is > that if the surgery for the first one isn't done correctly, then, you have a > pattern of surgeries after. It seems like the cysts have fingers that can > spread out and if the surgeon doesn't get all the fingers the first time, > then they stay inside and fester, slowly pushing to the top of the skin in > other areas. Like , he lives on antibiotics!!! Of course with the MBL > deficiency, we know why he's more prone than other kids. > > Take care, Everyone. > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2010 Report Share Posted August 30, 2010 Margaret, Have you taken Gareth to an immunologist? What does AD stand for. Sometime I am not good with acronyms. Cyndi B > > Hi, Everyone....Cyndi.....the light isn't for the autism, it is for > Gareth's depression. The docs are starting to connect the dots from the past > several yrs and feel that depression may be the cause of a lot of his > behavioral issues these days. When he was first dx'd with the Scleroderma, he went > into an autoimmune induced depression and was treated as such. The same > autoimmune attack on the body can mess up the chemicals in the brain and > cause depression. The psych doc picked up on it right away and he was put on > meds. Last winter, we were dealing with the pneumonias, seizures, and > airlift to Hershey. Last summer, it was the Lyrica/Dilantin reaction. Then, we > find out it's the seizures meds messing him up because he wasn't having > epileptic seizures, but pseudoseizures. This past winter from J-M, we have > been dealing with possible AD because of his behaviors, and this new psych doc > *thinks* it's all been related to depression. To be honest, I really > don't know because that is one territory that I know nothing about except that > his Grandma (on Dad's side) has had 2-3 bouts of serious depression over > the yrs and has been on meds for the past 15 yrs to prevent any more of them. > So, it is in the family......something more for me to learn about!!! I > would rather have the dx of seasonal depression than AD!!! > > Take care, Everyone. > Margaret > > > Quote Link to comment Share on other sites More sharing options...
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