Having difficulty entertaining kid with rett syndrome

[Crystal-Wings, LVN]

Hi I was wondering if anyone on here in home health nursing has any experience with pediatric clients with Retts syndrome. I've had the same patient for about 6 months and I've yet to find a way to entertainment the child. She is nonverbal, wheelchair bound, and can't use her hands. I've tried suggestions from my nurse manager such as reading to her, playing with musical baby toys (which she enjoys sometimes), helping her color (since she can't hold the crayon alone), and play-doh, but she doesn't seem interested in any of this. The parents won't let me take her outside for a walk (which is another story; this poor kid hasn't been outside for 4 months!).She watches tv, but the mom only let's her watch one hour and my shift is 8 hrs.

I don't know what else to do! If I'm bored, then this kid definitely is. I try to suggest new activities at her level of abilities but the mom usually says no.

I feel bad for her, but I really don't know what else to do. Anyone have any suggestions???

[LeChien, BSN, RN]

I haven't had a pedi pt with rett's but I have worked home health peds. Maybe make bath time an important point for play time, if she likes it?

Maybe use ROM as a time to play too. While stretching (within her own limitations of course) say "Okay we're going to stretch our arms waaaaay up to the sky and touch the moon!"

Other than that, I would bring it up with her case manager. Maybe the case manager can talk to the mother and suggest some things. Good luck!!

[middleagednurse]

Don't know much about Rett's Syndrome, but maybe play some kid CDS with cheerful kid type music, and assist her to clap her hands in time to the music? Or maybe a "smellfest:, where you could have her smell various spices, or fruits? Or maybe sit by a window and look outside: perhaps have some bird feeders so she could watch the birds? Maybe interact with a pet, let het pet a cat or dog?

[Crystal-Wings, LVN]

She doesn't have a pet.

[Crystal-Wings, LVN]

Her dad gives her showers. I already do ROM with her. Thanks for the suggestions. It would be nice to take her to other parts of the house besides having her sit on the couch all day, but my company says the nurses aren't supposed lift more than 50 lbs, and she's 60. The parents are supposed to get a hoyer lift for her, but they keep putting off

[evolvingrn, BSN, RN]

Music! Floor time and silly exercises. Why does she need a nurse?

[Crystal-Wings, LVN]

She gets seizures occasionally. That's the only reason the insurance will pay for a nurse. Honestly, I think they'd be better off with a babysitter but who am I to say? I need the job, but I'm actively looking for a new one. The dad works night shifts as an rn so he sleeps during the day. The mom doesn't work and usually spends the day shopping or going to yoga class. My agency can't get any other nurses to come because of the hour long commute, and because there really is nothing to do. No meds, no treatments, mom does all the suppositories and enemas because she won't let anyone else do it, which again makes me question why they need a nurse. Poor kid.

[LeChien, BSN, RN]

Oh girl I am sorry. I have worked with a few peds like that. Couldn't do squat with them. Like I said before I would address your concerns to the case manager seeing as you are really out of options. Does she have a g-tube or trach? Just seizures? How long are your shifts?

[evolvingrn, BSN, RN]

That stinks, hope you find something better soon.... But good for you for trying to find better stimulation for her

[VTLegalRN]

Hello Crystal-Wings, having worked private duty shifts in home care with medically fragile children for many years, I completely understand your position. I don't know what state your in nor the age of the child (I know with developmental delays, the chronological age doesn't matter, but in terms of what services the child is entitled to, it does).

I have found that some of the most valuable lessons I've learned were from the allied health team. By this I mean the Occupational Therapist, Physical Therapists, and Speech Therapists. They offer developmentally appropriate techniques and exercises that stimulate the child and help them maximize their potential. Depending on the programs the child is entitled to, these are often provided in the home. I watched how these children responded to these sessions, and you too would be surprised at how differently each child responds to different stimuli.

I recall vividly how one child, who I took care of for many years (but who was stuck in a two-month-old developmental stage), responded to her hands covered in shaving cream or whip cream smeared on her wheelchair's table top, an activity I learned from her OT. The same child laughed at her reflection in a mirror when held up suddenly (as in a game of peek-a-boo), and to the sensory stimuli with a feather gently stroked on the skin... These things may sound silly, but to a child who is trapped in his or her own body, the value that this brings to their quality of life is priceless!

My advice, if she's not enrolled in a home educational program, I would speak to the case manager to help refer her to one. If she is already enrolled, I would suggest a home evaluations of the therapies mentioned above. I can't even tell you how much fun we had with music therapy too. As a nurse, these may not have been the most exciting cases of my career, but today, over twenty five years later, I STILL get invited to their birthday parties! The mother today still introduces me as "one of [her] favorite nurses ever!". That, my friend, makes it the most rewarding experience of my career!!!

I hope you find fulfillment in your calling too...

Respectfully,

VT

[Crystal-Wings, LVN]

Oh girl I am sorry. I have worked with a few peds like that. Couldn't do squat with them. Like I said before I would address your concerns to the case manager seeing as you are really out of options. Does she have a g-tube or trach? Just seizures? How long are your shifts?

She doesn't have a g tube just seizures, and she's never had one as long as I've been here. I did speak to my manager and she tried to talk to the mom, but she won't make any changes. I really don't undertand parents like that. My shifts are 8 hours. Sometimes they seem longer. So that's 8 hours of watching Barney, doing ADL's, ROM, and making sure she doesn't hit herself in the face. 11:30 am to 7:30 pm.

Like I said, I feel bad for the kid but if the parents don't want to do anything to help the situation, there's really nothing I can do.

[Gravery]

I've worked with a young woman with Retts in her home and again when she moved to the group home I worked in. She had limited functional ability with her hands and typically would lightly clap or wring them most of the day. We had sensory bins filled with pasta, rice, cotton balls, etc that she enjoyed even just laying her hands in. We would play music a lot. We would do arts and crafts hand over hand and finger painting...even feet/toe painting. She was a young woman so we tried to do age appropriate things like pedicures, looking at magazines, and doing different hairdos. Water play and walks were her favorite things. It's unfortunate you can't take her for a walk. It would be good for both of you. Hopefully something can be worked out or you can find another job. I can't imagine how long those 8 hours feel. Good luck!