OTHER PARENTS' ADVICE NEEDED PLEASE

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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OTHER PARENTS' ADVICE NEEDED PLEASE

Postby kellbell » Tue Dec 14, 2010 10:22 am

Hello,

I am at a loss to help my child with her situation and wanted to know if other parents have similar problems and how you handle them.

My nine-year old daughter had tethered cord release surgery when she was seven years old. She was, and still is, incontinent. Because her tethered cord was discovered so late, she has permanent damage to the nerves in that area. She has had improvement with her urinary control, but she still has accidents, mostly every day, and still wears an overnight
pull-up every night.

But, my daughter seems to be in denial of her problem. For instance, she will have a bowel accident and when shown the evidence, i.e. dirty underwear, she actually looks at me and says that it's not there. She often does the same thing when she is wet, which is causing a great deal of problems in school. I have asked and threatened and basically begged her to wear a Poise pad every day, but she just takes it out and throws it away when I'm not looking. And of course, I have punished, etc. We fight about this almost daily.

It has occurred to me that she might benefit from a counselor, someone who specializes in children with disabilities, to help her to deal with her issue.

If anyone has any advice, please let me know.

Thanks,
Kelly
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby medicpt » Tue Dec 14, 2010 7:41 pm

wow, Kelly, I am so sorry that you are having this difficulty and particularly that your little girl is having this issue. I don't know her, and my kids are a bit younger, but it seems like she IS in denial, or at least rebelling about the situation. I think a good pediatric counselor might be of help. I wonder if all the medical stuff and the effects of having the tethered cord is just worn her down and now she just wants it to go away and this is her response to it. She probably craves to be like her friends, she may be suffering from pressure or ridicule from teachers or classmates at school. I feel for her, particularly if she is mainstreamed and there are no other kids with this kind of issue with whom she can share and empathize.
My experience as a physical therapist assistant included a small population of neurologic/orthopedic impaired pediatrics and it amazes me how kids internalize things at times, then how the problem presents itself.

I will be praying for you for insight and wisdom and for her for being able to share with you so that you can better help her.
Blessings, Wendi2
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby lttutrow » Wed Dec 15, 2010 1:16 am

My kids don't have a tethered cord, but we have become friends with a family who has a daughter who does. She was also experiencing issues with denying there were accidents. It worked really well for this family to work with a family therapist to help her with her feelings about everything that had happened, and to work through some problem solving. It was pretty effective when they began finding ways to empower her with some control over things, seems like our kids don't have much control over so much of what typical kids do! There was also an element of Post Traumatic Stress because of all of the procedures/surgery/tests, etc..., and the therapist was able to help come up with strategies for coping with this too. They ended up taking her to choose her own underwear to buy, and placed a feminine pad to reduce issues with incontinence that would otherwise be embarrassing with her peers. If she is reluctant to leave them in place, you may try a positive reinforcement schedule like, if she uses whatever product works best all day, then she can choose an item from a reward chest (can be filled with Dollar Store or similar items, but things she would look forward to) or earns a $.50 toward a WalMart trip or 1 point toward 5 needed to earn a 'date night' with you...whatever you think she would look most forward to. You may have already given some of these things a try, but thought I'd pass them along just in case.
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby kellbell » Wed Dec 15, 2010 9:23 am

Thank you both so much for your responses. Your responses about seeing a counselor just reinforces that idea, and I did not think of PTSD, which I should have because every once in a while she does bring up little things about the surgery.

Having the reward chest is a WONDERFUL idea and I will definitely give it a try. She and I had a good talk last night and we agreed to give me two days with the pad. I reiterated that I love her and only want what's best for her and we can work together. During our talk she did state that she is very angry about being "different" and yes, I agree, she is rebelling.

Again, thanks for the support and ideas and I will post again with hopefully a very positive update.

Kelly
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby lttutrow » Thu Dec 16, 2010 12:07 am

When my son was struggling most with the feeling different, it happened to be in the summer and we were planning to go to the ASAP conference. It really helped him to be around other kids who knew what this is like. I don't know where you're from, but if you are on facebook at all, you can go to the asap page and post a major city you are closest to in order to see if there are any kids near you?? Or, there is a facebook page called Chiari Parents Support, http://www.facebook.com/#!/group.php?gid=392262440089, and you could try posting there?
Sounds like talking it out together went really well! Hope the trial is a success :)!
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby youngwife » Fri Dec 24, 2010 12:18 am

Kelly,

My daughter, Rachael, is sixteen and has had a tethered cord release surgery. If it would be of any help, she might could email or write your daughter. Maybe if she knew that even big girls have problems, too, it might encourage her to come to terms with this difficult issue. Just let me know if you think this would be of any help.

My heart goes out to you both. I can't imagine how hard it is for her to be (in this way) so not normal in the midst of so many very normal kids at school! Rachael struggles very much with just wanting to be and do as a normal teenager. But her body and health won't allow it. :(

I think you've gotten some wonderful advice and suggestions, and I will be in prayer for your family.

(((HUGS)))
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby kellbell » Tue Dec 28, 2010 12:32 pm

Thank you so much for your response. I will show this email to Sophie and I think she might like to email Rachel. I found a local support group that we might attend next month.

In case I did not say before, but this site is truly a God-send and I am so grateful to have found it.
Thanks,
Kelly
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby youngwife » Wed Dec 29, 2010 12:34 am

Kelly,

I hope she will be encouraged. She is rebelling the circumstances, not you, I believe. My heart just aches for kids that have to deal with such an issue. :(

I will be happy to forward Rachael's email to you, if she is interested in corresponding.

www.caringbridge.org/visit/rachaelyoung

(((HUGS)))

Rebecca
Homeschooling mom to 6 wonderful blessings from the Lord. ~ "Let no corrupt communication proceed out of your mouth, but that which is good to the use of edifying, that it may minister grace unto the hearers." - Ephesians 4:29
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby kellbell » Wed Dec 29, 2010 9:47 am

Thank you so much. I spoke with Sophie last night about writing and she seemed interested. I will have her write tomorrow, as we are a little busy today.

Again,
Thank you.
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Re: OTHER PARENTS' ADVICE NEEDED PLEASE

Postby Gina217 » Fri Dec 31, 2010 7:15 am

Hi! My son did not have these particular issues, but has had extreme difficulty dealing with the activity restrictions the ns has placed on him. He always feels different and asks "why can't I just be normal". He is 11 years old and can't participate in most gym and recess activities nor can he join the sport teams his friends join. Although he can play baseball, he wants to do everything else his friends can do. (These are just a few things he cannot do) It is so difficult for them when they cannot be like everyone else. We try to point out all of the things that he can do and that he is normal. We have helped him join in activities that are safe for him and make a big deal out of these activities. With time it seems to have gotten a little easier for him. Like I said, I know it is a different situation but I just wanted you to know that your poor little girl isn't the only one out there dealing with the issues of feeling different and I know how hard it is for you, as her parent, to have your child go through this. I think giving therapy a try is a great idea and am actually considering doing it for my son as well. I wish you the best of luck! Keep us posted.
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