between a rock and a hard place

[dyza]

All this recent talk on waterparks and jet tubs has left me with a
bit of a quandary. My niece, who is 13,who has a urinary tract
problem,in that she does not know when she pees until she feels it
coming out, Has the most disgusting habit of not washing, her
problem aside, she just will not wash herself. We have already told
her, and her father, that she can not touch Craig, but you can not
keep your eyes on  them 24/7.She stays only 4 doors along and
plays with our daughter, so she is around most days.Our problem is
that I think we should not let her in the house because of the
germs that she will be carrying on her hands.<br>
I should say that she lost her mother to a heart attack 4 years ago
, and her father  is finding it hard to cope with.

 

[damiensmom]

I personally, would not allow her in. I have a 9 year old and I have discussed with him the dangers of germs . He is not allowed to have freinds over at this time. Very rarely do I allow it. I also dont have company like I use to. I make the few people that come over wash hands upon arrival. I will lighten up when Damien is bigger, I know I cant protect him from everything, all the time,and forever. I feel I cant be to carefull during infanticy, I also know I appear to be a royal bi**h to my older sons friends. I hate that, and it hurts. It doesnt hurt near as much as it does when babys been sick. He had a lung collapse at 4 months and still wears oxygen at night. Im not reccomending you go to the measures I have, but if she cant wash her hands or herself, you might have to put your foot down. I support your veiw on not allowing her to play at your house.

 

[dyza]

thanks Aria for your reply, im glad im not the only person with
these worries.We do our best to help her father, but its came to a
point where he does not listen any more. And now we have our son to
worry over, it does not leave any time to worry over anyone
else.<br>
<br>
I feel guilty about this , because i find myself turning my nose up
to my niece, not because she may smell, but because she disgusts
me.<br>

 

[anonymous]

i'm gonna have to disagree on this one. I am all for avoiding germs, god knows our house is full of antibacterial soap and purell instant hand sanitizer. People know not to come to my house with fever, coughs, etc. But this makes me so sad. It is odd a girl 13 years old would not keep herslf clean. Has she been diagnosed with something bacterial in her urine that would cause you to worry? I did not think urine (not to be gross) was something full of bacteria, only if you have an infection.
Is something else going on within this little girl? I know when I was 13 I wanted to smell good because perhaps i had a crush on a boy.

I let my older son have friends over, sometimes they have runny noses but not overtly sick. What can ya do? I wash my daughter's hand with CF before she eats etc. I could not deprive my son or daughter of social interaction with their peers. i do not think it is wise. This is just my opinion. Now if something bacterial was going on with a child coming over or the flu that would be a different story. My children are very social kids, it just how they learn to interact with the world. I know your child with Cf is youger thatn mine and it's wise to protect them as babies but it's somethig to think about. Maybe other have more advice.

Rebecca(mom to Sammy 7 no Cf and MAggie 3 with CF)

 

[anonymous]

Have her wash her hands asap when she comes over. Have the antibacteria soap at the door. We do....for everyone, they know its routine. Good Luck. Have you said anything to her...like you cant come play unless you wash your hands. How old she is?

 

[Diana]

I would more concerned about the 13 year old in general to be honest. She lost her mother 4 years ago and that can affect children in many different ways - you also said she won't listen, well behavioral problems are a strong indicator that she needs help. I am not sure of your closeness or family situation but I would say if perhaps someone can get to the bottom of her mental state it may improve your situation somewhat.

How long has she had the urination problem?

Also since she does urinate without feeling it, would it not be wise for her to wear pads as an added protection?

It might be an idea to make the standard pratice for everyone (family and visitors) to wash their hands upon entering the home. That way she won't feel singled out as that could make matters worse.

Good Luck.

 

[Seana30]

I have to agree with Rebecca on this one!

I could not imagine denying my other children social interaction at there own house due to Courtney having CF.

Courtney still has sleepovers, she goes to sleepovers, goes to birthday parties, etc. We can not keep our CF children in a bubble. Of course we take extra precautions, but I feel keeping Courtney in the house all of the time, and not allowing friends over would only make her feel worse about her illness.

I am shocked that a 13 year old girl would not care about this urinary problem. My two teenage daughters will not leave the house without their hair brushed, and their perfume on. I agree with you on this one. Although I don't believe urine would cause a CFer problems.....it is just plain disgusting and being an EMT I know that stale urine is THE WORST SMELLING thing!

This is just my opinion. As CF parents we all have to do whatever makes us most comforatble to get through day to day life with a CFer.

Take Care

Seana

 

[anonymous]

We've always had the rule since DS was in the NICU that anyone who wants to hold him, now play with him, must wash their hands when they come into our home. Most people know that they need to avoid him if they're sick. I do get a little edgy with my FIL who has chronically infected sinuses, but I THINK I've finally gotten him to not use his nasty hanky around DS.

Your niece is probably at that awkward "I don't want to bathe stage". My sister practically has to FORCE my niece to shower on a regular basis and a coworker has commented about how her grandson will use the bathroom and refuses to wash his hands. She buys him fun soap and towels, but he's just too busy, just in too much of a hurray. Another lady I work with comments about how disgusting her son is -- smells like wet dog half the time -- smelly sweaty pre-teen. Another thing to consider is maybe someone can take her shopping to buy some fun bath and body stuff. My nieces LOVE bath gels and lotions, perfumes...

Maybe you can have some hand sanitizer available for her to use when she comes in the door. Let her know that EVERYONE uses it.

Liza

 

[anonymous]

Tough situation. You have to allow social interaction, but you must also keep your little one heathy.

I think one thing you really need to do is be consistent for all visitors, not just your niece. If you feel she needs to wash her hands before coming in the house, then that should be the rule for everyone coming in the house. You may set some rules up because of her, but inforce them for everyone. That way she won't feel singled out.

I also agree that your neice may have some problems. I know it can be frustrating and you can feel helpless, but keep pressing to get her some help. We were in the same boat, sort of, with a friends 12-13 yr old daughter that he got custody of. She had some problems and we begged our friend to get her some help. I don't think dads are in tune to that sort of things as moms are.

 

[thelizardqueen]

What I wonder about these parents not letting their kids have friends over, is what happens when your kid goes to school and picks up god knows what there and then bring in back to your house? What about if they go over to thier friends place, come home and have brought some sort of bacteria back? If you stop with having friends come over to your house to play with your kids, you may as well not let your kids go out in publlic period, because they'll just as soon bring something home with them - if anything. I was completly normal as a kids, played in dirt, went to water parks, etc. I did all the nasty stuff that people talk about not wanting their kids to do on here, and I'm healthier then most CFers my age. I'm also a doubel delta F508 - that's one of the most severe mutations you can have. And I'm for the most part fine - never had pneumonia, never had bronchitis, sick with infections maybe 1-2x a year, and have had IVs once and that was 10 years ago for some persistant plugs I had, not an infection.

I say be diligent with washing hands, and just not invite someone over that's sick. A big part of being healthy is social interaction.

 

[julie]

Ironic as it sounds, urine is the most "clean" body product that we excreet. Ever hear of peeing on yourself when you get stung by some ocean critters? It's because of the disinfecting properities and acid in the urine. I too do agree that it's strange for a 13 year old not to clean herself, clearly there is an underlying problem there. Maybe she needs some outside help coping with the loss of her mom. I'm 22 years old and I can't imagine loosing my mom, let alone being a young teen.

I have to just say here though, I really don't understand the philosophy about not letting a CFer have friends over at the house. It's hard enough for them to be "normal" as it is with CF, I just don't see the purpose of shielding them anymore. I am not judging, I want to make that clear. Each parent has their own traditions, parent skills, ways of doing thins, concerns, issues that we don't know about.... But if you talk to any, or almost any ADULT CF on this board about protective measures their parents did or didn't take, I think you will find that most were allowed to do whatever (within reason) as if they did not have CF. If you don't expose yur child now while they are young, their reaction to bugs when they are older will be SEVER, sometimes almost deadly.

Take chicken pox for an example. VERY VERY few children die from it, it is a rather commo, NON-life threatening illness if it is acquired in childhood. VERY different outcome when an adult is exposed to chicken pox and never were as a child. It is deadly, very deadly. Same thing for many other viruses. Maybe not deadly perse, but much sicker than if you had been exposed while your immune system was still developing as a child.

Again, no judgements here for whatever parents do, we all have our reasons. But I just think maybe talking to an adult with CF and learning a little about how they were raised might help?????

Best of luck though

 

[dyza]

wow,<br>
thanks for all your responses,my wife and I have just looked at
this and we are having a disscusion about it right now.Its 10 p.m
here just now and i need to go to work so i will respond to this in
the morning.<br>
<br>

 

[anonymous]

I would like to add, hopefully without offending. That not knowing you and reading maybe too much into the tone of your post. i tend to get the feeling that maybe you just don't want this girl in your house and hanging out with your daughter (the 12yr old without CF). That's totally your call too and your decision to make of course. i would just caution against using the CF angle as an excuse. It can set a really bad example of exusing behavior/choices due to CF. It can also lead to some resentment from siblings (as well as extended fmaily) at how much CF alters the household. CF really affects the entire family and it's important to remeber your 12yr olds needs as well as your CFer. Just another thought to chew on. Good luck to you guys.

littledebbie
(not logged in)

Debie
26wCF

 

[dyza]

O.K. thanks for all the feedback you have given us,yes there are
some valid points that i had not thought of. I get the feeling that
most of you think that i am some sort of ogre,far from it, our
house is an open house for the kids on our street .We are the
family that babysits all the brother and sisters children, we have
always done and always will, so there is no question that we would
dissallow her for any other reason as to what I have given. It
would not be our intention to stop social interaction, as she needs
this in her life.<br>
<br>
She has been this way from birth,also has learning difficulties,
has very short memory retention.She does wear pads, but she uses
them to pee into, until they start to leek then she changes
them,without washing down below or her hands. My wife has tried to
tell her better ways but she just does not respond. I once remarked
that when she was younger and you gave her a cuddle, it was like
cuddling a plank of wood.Her younger brother and sister are bad
when it comes hygene as well.<br>
Maybe we should concentrate more on the father and try an urge him
into getting help from whatever circle.<br>
<br>
We wont stop her coming in, we cant ,she is our niece and we do
love her. I hope you all see why i tittled this 'between a rock and
a hard place'. it has been a difficult time for us lately with
Craig and maybe we just did not want any distractions just now.<br>
<br>
<br>

 

[Ratatosk]

Maybe you (or your wife) can make handwashing time, fun time. Figure if the daycare can teach my two and a half year old to wash his hands after going potty... Maybe just work with her -- okay, you can do this, watch this show, have a treat, but you have to wash your hands. Repeat repeat repeat and maybe it'll stick.

DH has a cousin with similar problems and a large part of it is that his mother always told him he couldn't do things -- couldn't play outside, help with yard work because he had disabilities. We'd include him in activities at family events and wouldn't let him get away with the "mom told me I can't mentality". Currently I can hardly look at him because he's stopped brushing his teeth, and it's obvious he hasn't done so in a very very long time.

Liza

 

[Diana]

I definately don't think you are an ogre and every parent has the right to be concerned for and put their child first. Its only natural. What I try to keep in mind is that my child has special needs which I expect people to adjust to so they should be able to expect the same from me with their children regardless of the who's worse off scenario. It also reminds me we are not the only ones battling in this world. I am sure you are doing a great job as a parent and like anyone else have your moments where you question if you are doing everything possible to protect your child.

Now I might be WAY off base here but through my own experiences and reading what you wrote in your last post I need to ask if there is a possibility that your niece has a mild case of autism? Like I said could be completely wrong but there are some definate signs that it could be possible. Has anyone looked into this before? If that was the case then getting the right help would teach her how to improve her hygene routine etc.....hope I haven't hit a sore spot by asking but sometimes people don't realise the possibilities as they think "we've managed until now so she must be ok".

It was just a thought and I understand if you think it's crazy but I do hope you can convince her dad to get her some sort of help to deal with her issues.

 

[dyza]

funny enough Dee, i have always thought that she was slightly
autistic,but alas she is not,i do doubt  this. I also said she
is Dyslexic, i know she is,there is a simple test you can do, if
you stand a dyslexic person up and push your thumbs gentle into
their backs, with enough force to make them take a step forward,
well a dyslexic person will fly forward as if you hit them with a
baseball bat. <br>
Craig

 

[Diana]

Now that is interesting! I wonder why a dyslexic person would do that?

Well I really do hope everything works out ok for you and your whole family. Trying to treat your niece as normal as possible is extremely important but that doesn't mean you can't have a frank conversation with her dad. He's an adult and he will need to charge of this situation.

Again good luck and all the best.

 

[anonymous]

Reading this post has really upset me in many ways. You are having a discussion about a 13 yr old child who, according to the original poster, has an intellectual disability and in turn, is having some major personal and social difficulties. You have disclosed such personal and sensitive information about this child and although you have not identified her by name, you have nonetheless logged on under your name and have potentially exposed her identity to whomever reads this post now and in the future.

I understand that you are genuinely concerned about her but just ask yourself how do you think she would feel if she was to read this thread ? Also, how would you respond to her feelings of humiliation when she realises that you shared such sensitive information without her even knowing? It would have been better to log on as anonymous and not identify her as your neice to be better protect her identity, remember she's had no say in any of this. We are the adults, we are meant to be protecting our children, especially vulnerable children like this little girl.


LB (aka littlemisssilly) sorry, forgot to log in.

 

[dyza]

Littlemisssilly<br>
God i just read that and I had my head in my hands. You are so
right, i have been such a fool in my haste, and have not thought
about this at all. Can we dump the whole thing? Is there any way to
erase this?<br>
Please no-one add to this so it can go further back in line. The
whole issue has been resolved now to the good of everyone involved.