Fecal Smearing with Adolescent Downs Boy?

[Kyle0710]

My son had had fecal smearing on walls and people and himself episodes that are very sparatic and we cannot figure out what trigures them? He gets out of control and hits and kicks and spits and his eyes diolate and its like he is a rage of survival? It would take more than one adult to hold him down until we can get him to stop and calm himself, then when we feel its safe we clean him up and we talk to him and ask him why??? His answer to all of that is "I dont know"??  This is destoying our family with this behavior because our other two sons are always on "pins and needle" with him around.  he is the most loving person, but cant understand these rages??  He cant possibly be the only one in the world that this happens too?

[wales12]

Hi
I know exactly what you mean about being overprotective!
My daughter will be 4 on 5th july so  we're a way behind you but I do think a little bit about the future and I want her to be as independant as possible. She starts nursery school in september and thats enough independance that her mother can handle for now haha... She has always struggled with eating and drinking and I've been asking for help for 2 yrs now, finally they are taking me seriously and have discovered a problem in her throat. I can't tell you how annoyed I am. She has only been able to eat a small amount of pureed food. (she is fed via gastostromy), and this has affected the muscle tone in her mouth and so affected her speech.She also needs quite a big operation on her hips in the not so distant future, so it's a lot of stress at the moment, worrying about how she will cope with it all.
I think your doing the right thing looking for outside help. It's something most people take for granted when their  children get older, but it's extremely difficult when your child is so vulnerable. I'm glad your son seems to like his new arrangement, I bet he's loving being with new people.
My daughter thinks the whole world is her friend and is very confident about new situations, she has no fear what so ever. My mum is so good about helping out, especially as my little girl is ill quite a lot, we were at hospital at midnight last night and she came with us, but I feel guilty sometimes because she cancels seeing her friends a lot so that she can help. I would love to have another baby but, I think it would be nigh on impossible to  cope with another.
I agree with you 100% about our children being a blessing. I as always meant to have my daughter and I love her exactly the way she is, she is the light of my life, the breath in my body and I couldn't live without her.
Thanks for the update on your son, glad you got your answer
Jo x

[Kyle0710]

Thanks, Kyle hasnt done anything out of the ordinary since he is feeling much better. After 12 visits to the ER, him being admitted and undergoing every test and procedure possible, I finally figured out why my son was so ill, and getting worse, not better.  He was diagnosed with a dealy bacteria virus called C-Diff right after the fecal smearing happened, which was the cause of that, and was put on an antibiotic and started to feel somewhat better but then had a relapse of it and was then put on a stronger dose for often to take. After him getting sicker and showing no sign of improvment I again took him back to the ER and figured out that it was the strong antibiotics that were affecting him in an adverse way. As soon as we stopped the med and his results came back negative for the virus he has/is almost 100% better. He hasnt dont the smearing since and not to say he might not again but fingers crossed- there is always a reason for why he reacts and acts out! It is just been a learning process for him from day 1 how to try and show how he is feeling appropriately where happy, sad, or angry or nervous. Kyle cant tell us exactly what is bothering him through illness, but has incredible verbal abilities, which have never been an issue.  As a matter of fact if you werent looking at him and heard him talk you would never know he had Downs. I think that was from all the taliking we and family did with him from young, and I believe singing has also helped him in that area. He does feel alot better thanks for asking!! I am just now at the point of getting some respite as I have never before in the whole 17 plus years with Kyle. He has gone to a Respite home this week 3 times and for a 3hr period each time and has seemed to like it next I would like to try an over nighter.  I have 2 other sons who will be going into Med School soon and have no time for ME and I havent had or given them much of my time in their lives because of Kyle so now I need to do this. The only thing I could recommend to you is start them off when they are young because it only gets harder as they get older., My mom has been the only caregiver for us and now she cant because of my dads own health issues, so now its hard for Kyle to accept being with others at times.  I am now also realizing how much I have missed out in my own life and how much I would like my freedom back at times and want my own life back, so this is something I need to do, for myself and Kyle also, as i wont be here forever and God forbid something happen to my husband and myself he would need to be able to cope without us in a different envirement. I know I have been way to overprotective of him and see now I should have got him to do more without me when he was younger, as it would have been easier on him now. Does your daughter like Barney? Kyle has watched him and has every dvd since birth. I truly believe he has learnt alot from Barney, still watches him today at almost 18, who cares!! there is no harm in Barney, but I know alot of parents are against him. Just thinking that it might help your daughter with her speech and communication.  When Kyle was born it was devastating to us, but my mom said that we are never given anything we can not handle in life, and he has truly been a blessing and has taught everyone in our family how precious life is, and how lucky we all are. Good luck to you and your family.

[wales12]

Has he now stopped doing this? I'm so glad you have found the cause, I know how frustrating it is to try and communicate, I have the same with my daughter who will be 4 in 2wks. My little girl hits herself on her head when she can't tell us what she wants. It is getting easier though, her signing is much better and her speech is improving. I hope your lives are improving now, your son must feel much happier too.

[Kyle0710]

We have realized that and also doctors have concluded that the reason for Kyle to do this was most likely that he was sick with a bacteria infection and couldn't tell us what was bothering him or that he was sick and this was his way of doing so.

[wales12]

Hi, I'm sure there has to be an answer out there somewhere. Has he always done this or did it start with adolescence? You could try a behavioral therapist, maybe they could get to the root of why he is doing this. My daughter is only young but already she shows some behaviour that as her mother is very distressing to deal with, (not fecal smearing). some of the antics my daughter gets up to are only for my benefit, she doesn't do it for anyone else. Children with Down's are smart and will pick up very quickly on our response. With the greatest of respect to the last post by Brendan, having Down's syndrome is not an illness or an excuse to not try and find an answer. It's not a case of just living with this situation it's finding a solution. It must be a huge strain on your whole family and I wish you success in finding this solution. Good luck and I imagine that apart from this problem, your son is a blessing, my daughter definately is,I couldn't amagine life without her.

[BrendenRolston]

Hi there

Just doing some research and come across your note above, this must be real tough, I guess the only thing I could think is that the family need to be real tight and work together as a unit at all times, everyone needs to accept this is an illness and even when he is out of control this is not his fault and not his real reflection, poor kid. No one wants to go through this but I guess it is your reality and hope you are getting good help from specialists.

Keep strong as a family and keep communication.
All the best and make a success of your family.

Regards

Brenden