Any experiences with Down's syndrome?

I've been to three peds units as a nurse and they all comment on how easygoing and sunshiny Down's kids usually are. They are a hearbreak with so many needs and medical issues, but worth every minute, even for hardhearted caretakers.:)

They are precious children UNTIL they have surgery or are in pain. Then they become very agitated, sometimes violent and overall just difficult to manage. For some reason, too, it seems pain meds just don't work as well on them. I still love them, even if they are difficult post-op patients.

The one's I've worked with haven't been easy to manage as they get older. One of my Down's children tossed me around like a rag doll when I attempted to give him an injection on day. His mom and I are both small and therefore couldn't restrain him long enough for me to safely insert the needle. I felt so awful afterwards. I should have thought it through a little longer instead of thinking it would be like any other child vs shot scene! But, I was the only one working and I was doing patient work ups, medication delivery, laboratory work, phone triage, triage, filing, patient teaching, and covering for thereceptionist. I just wanted to quickly do the procedure so I could go pee. If I had just... Well, you know.

We have about ten children with DownsSyndrome in our pediatic outpatient practice. All of the children are well behaved. They have a varied degree of needs, including mental ability and medical needs. For the most part, parents are very concerned care givers and take great pride in any achievements the children make. The parents and children, as well as siblings require an extra measure of support and attention. This is a very rewarding position for the nurse to be in.

I used to be exposed to a lot of down's kids in the open heart unit where I worked, they often have congential heart disease that needs repair. I don't recall them being too hard to manage post-op. Most were their usual bright and sunshiny selves, very loving. One thing thought, very flexible, double-jointed, these kids can put their legs behind their heads, a challenge to keep their lines protected.

Watch out when they start to mature sexually, I've seen a few who were just complete horny little maniacs, grabbing nurses breasts, exposing themselves, and staring at your chest while rubbing themselves, not a pretty thing! LOL!

Although many children with Downs share alot of the same behavior, physical, and personality traits, they can not be lumped together as a whole. This is just like the typical COPD, FTT, add your own dx here, are all alike. Children may or may not have defects in every body system (in any combination), have the physical downs look, or the palmer crease. OR to add more confusion any one of the different genotypes of downs (trisomy, mosaic, translocation).

The degree of disability will directly influence behaviors, as well as past experiences (just like with anyone). The degree of MR results in the child like sunshine personality, but also the agressiveness. Just think of any 2y/o you come up to with a needle...they are goining to fight esp. if they have had a shot recently. A child of 12 may be in the same comprehension level as a 2 y/o and not be able to understand the need for the shot other than that HURTS me --> it is BAD. A child that has experienced alot of pain from healthcare providers as a result of the many possible physiccal defects will react totally differently from the child that is in the hospital for the first time.

The scope of MR in downs is HUGE. One child may be profoundly MR/DD, with little independant function. Another may be so mild that they drive, attend college, and funcion almost at a normal level or have none of the common or major defects seen in downs.

The setting you pratice in may cause you to see more of a certain type of downs. For example in an ICU you may see the worst of the worst with severe and or multiple congenital defects, in early intervention you may see the whole specturm.

Overall downs is a very diverse and extensive dx to deal with. I like to think of it like snow. Every one has the mental picture of a snow flake and it is pretty close to the same image for every one, but really no two snowfalkes are identical.

just my two cents.

Peter

I used to volunteer with DD kids (6-14 range) and always found the Down's children to be the most pleasant. It is like Peter said, though; Down's can manifest in so many ways and in such differing degrees of severity that no two Down's children are alike.

There is a couple living in our apartment complex, the wife is definitely Down's and the husband is either mild Down's or has some other developmental issue. They both work at the hospital in Environmental Services, and they have a beautiful, very normal toddler daughter.

As the mother of a DD child (ring chromosome 18) I have been around many downs children in his classes. Some are severly handicapped, others just minimal. Most are very happy and pleasant although there has been a few that are unruly and aggressive. These children like all DD kids require alot of patience and alot of caring. Just like ALL kids. Don't let developemental disabilities scare you. Trust me, they are as wonderful as anyone can be.

In my experience from babies to adults they are beautiful, sweet , bright and loving people.....Some of my most rewarding and memorable patients.....Never have less than all their love to give...