September 29, 2009

Irrigations AGAIN?

With Dylan's recent episode of bad bacteria overgrowth, I contacted Dr. Levitt who has advised us to start irrigations again. And anytime he takes these episodes. Dylan only has 10 inches of his large intestine left, so its obvious now that these episodes are kind of like entercolitis episodes where the bad bacteria grows and takes over the good natural bacteria thats in the colon. The irrigations will help wash the colon out, which will help the bad bacteria move on out. We have to start these today 3 times a day, then taper off to 2 times a day, and then once a day fromt hen on out. We have to go back to see Dr. Levitt soon and Im going to discuss this more with him then. Its difficult to do these, and Dylan doesnt like it at all, but if it benefits him and helps him get healthy again and stay healthy I will do what I have to do and hope everything works out for the best.

Dylan has been sick since Sunday, he wouldnt eat or drink anything Sunday. Was throwing up a few times, and then as usual he had the foul smelling watery diareaha. Yesterday I made the choie to take him to the pediatrician just to have him checked out. We have been through 2 pediatricians already. The first one we changed because they told me Dylans blood work was fine and i later found out that it was abnormal and he showed signs of infection in his blood so I took him to his surgeon and he was hospitalized immediately. The one that he sees now, is SUPPOSE to be a gastroenteroligist, and specializes in the digestive system. He has never been a help to us, and yesterday i really didnt expect any different but wanted to take Dylan to be checked out. Instead we ended up seeing his wife who is a dr as well, and she did nothing but make me feel like a horrible parent and that i wasnt doing my job to help Dylan stay healty. She stopped short of nothing but calling me a bad mother, Dylan has always had anxiety issues with dr offices and hospitals. Thats to be expected with everything he went through last year. She looked over the current symptoms Dylan was having and then explained to me what i already knew which was that the bad bacteria was over taking the good bacteria in his intestines. Then she abandoned the situation, flipped through Dylans chart, and says "He has anxiety and ODD that you are not getting him treatment for?" "WHAT" is all I could think of. I guess he didnt like the fact that she couldnt talk over Dylans crying so loud so she decided I was a bad parent because he cries when he comes in to a dr office. So after the "not getting him treatment" remark I say "they offer therapy for 3 year olds that have dr office and hospital anxiety?" then she realized she opened her mouth before she really knew what the issues were. She said that no they dont but if affect his every day life and hes scared of everything and cant sleep then yes he would need some type of treatment. I then explained to her that he only does this when he comes in to a dr office or hospital and that he is just traumatized because every time he goes to a dr or hospital a dr is putting something in his bottom, and could she not see why he would be fearful. I think then she got the point but then she went on to putting me down for not bringing him in for physicals and well check ups, not looking at the fact that we are there every few months because hes sick and we leave there empty handed with no prescriptions or no help. SO needless to say I am soooooo done with these doctors and I will be finding another pediatrician this week. One that can understand what my child has been through and have compassion and understand that hes been through alot and he is going to cry when he comes into a dr office because he is scared. I have said many times that I wish surgeons could be your childs pediatrician too, they show so much more concern and sympathy and understanding toward a child. Its sad to see that the medical professionals that choose pediatric medicine for their career really do not care about the child or helping. The only thing a pediatrician is really concerned with is well check ups, the dont worry about anything that they are not specialized in treating. Its really disappointing that I have lost faith in pediatricians in general...they have let Dylan down too many times, the only one I turn to now is his surgeon, who I have realized is the only one that has truly showed Dylan sympathy, compassion and understands what he has been through.

Today Dylan is still the same, not as much diareaha though but its becoming a battle to get him to drink which he really needs right now because he looks horribly weak and skinny. After a few days of this my boy looks heartbreaking and I would do anything to see him healthy and happy again....


  1. My son suffers from this disease. Can we talk?

  2. You're more than welcome to send an email if youd like.