Hints From Home

On this page you will find helful hints from parents who have been there. Here they will share what they have found to work for them. KidPower is providing this page for informational purposes only. The information contained here is not to be used to take the place of your physicians advice. You should always check with your physician first whenever you have questions about anything to do with your child's medical condition.

Just a few pieces of information for any one out there that would file a formal complaint with their state board of education in reference to out of compliance issues with school district.
Make sure that all inquires (be it phone calls or letters) are well documented. Make sure that all letters are sent certified -return receipt requested. This might cost you a little more money but will prove your case big time in the end. Have all date s written down of who you talked with and where it was that you talked with this person. Also if you have issues that things seem to be going a little too slow, then bug them and document everything!!!! --Sharon

SSI: When applying for, gather all the medical records yourself and bring/send them to Social Security. This was suggested by a very nice person at the SS office, and we had our approval within a month. Not sure if this is typical, but it ultimately will shorten the time it takes regardless.--Lorna ldoone88@yahoo.com

G-Tubes: Use waterproof tape when securing. Leaves no residue! Dawn dish liquid seems to work best when cleaning (make sure you rinse the tubing soon after using also).--Lorna ldoone88@yahoo.com

Leaky diapers at night (when liners just don't cut it anymore): Use diaper plus a diaper a couple of times larger over it. Our son only leaks occasionally now, compared to nearly every night.--Lorna ldoone88@yahoo.com

Learning to sit: Straddle child over legs/peanut-ball. Give as little support as possible. Worked like a charm with our son.--Lorna ldoone88@yahoo.com

For G-tubes: If you have a problem with keeping the tubing from twisting & unlockinging from the button, try using that brown, self-adhesive wrap (not sticky). I cut a thin strip of it and wrap it around the button's plug & tubing so it won't unlock and possibly become unattached. When the self-adhesive wrap won't stick to itself anymore, I just use a tiny piece of tape to keep it wrapped. Very inexpensive, very effective.--Lorna ldoone88@yahoo.com

For new stomas, some of you may not have heard of Kenalog cream. We preferred this instead of nitrate sticks on the granulation tissue. --Lorna ldoone88@yahoo.com

For G-tubes: Cleaning the extension tubes. It took me awhile to figure this one out. Perhaps it's elementary to most: Put some dish liquid in the tube. Then use the venting (or a large, 60cc's or so) syringe, with an elastic wrapped around the top. Hang the tubing on the faucet with the elastic and run hot water through it. Works great & you can do something else while the tube is getting cleaned. --Lorna ldoone88@yahoo.com

Antihistimines and decongestants can lower your child's seizure threshold. If your child already has problems with seizures you can use Children's Nasalcrom Spray for allergies.

Aloe Vera juice can be used to overcome constipation.

When our son was a baby and we were trying to teach him to drink out of a straw we used one of the smaller size Honey Bear honey bottles and used fish tank air tubing (clean and new of course) and put it through the top til it touched the bottom and he carried it around for a really long time. It helped him learn to drink from a straw because as you watched him suck on it you could slightly squeeze it to give him the idea he was doing it right. He got it. Our NDA daughter also carried one around for quite a while too between nursing and learning to sip well from a sippy cup. This idea came from his wonderful EI therapist.--Sherri

To help keep our son's C-splints on that he wears at night I use 1 1/2" sports tape (either Johnsosn & Johnson or Mueller). All other tapes left excess tape glue on his hands. These splints are molded out of a soft plastic to keep his thumb and pointer in a C position.--June

To make our son's DAFO less noticable, he is a right hemi and only wears one on that foot, we would put an extra long sock on and after putting the DAFO on and getting it secured we would pull the sock back down over the DAFO. This gave the appearance that he just had a longer sock on one foot then the other. I think this really helped make the brace less noticeable.

Always go with your gut instinct. Don't take the word of a "professional" if you have additional concerns or questions.--Judy

Assess every situation....if your child displays a behavior that is out of character, ask why of the child and yourself before reacting. Your child may be under stress, a change, had a bad experience, or just plain may be having a bad day. If, after assessing a situation, you feel that the behavior merits punishment or consequences....you can do it calmly and think it through.--Judy

Always take your questions with you in written form.....to doctor visits, to PT visits, evaluations, testing of any kind and school meetings. Sometimes it might benefit you to submit the questions ahead of time. Take a pad and pen to write down responses to your questions. Don't be afraid to repeat what you heard and make sure the other person knows you are writing their response.--Judy

When your child has been assessed, tested, treated, hospitalized, etc.....always sign a "release of information" form as you leave and request ALL records to be mailed to you.--Judy

Keep a file of all medical records, tests, illnesses, etc--Judy

Take a camera to PT, OT, AFO fittings, riding therapy and anything else you do once or regularly. Most of our kids love having their picture made. It helps to relieve tension in some for first time activities and pictures make a lifetime of memories. You can actually SEE the progress through photographs....so can you children.--Judy

Make certain you have someone you can call (or e-mail) for small accomplishments...someone that will sincerely rejoice with you.--Judy

Educate your extended family in small increments. They may be accepting in smaller stages than you. Extended family tend to hold out for the "normal" child or one that can be "fixed" and are in denial for longer periods of time. Don't give up on them but don't allow them to bully you.--Judy

Allow yourself time to be an adult. Make the time to get out if only for a little while just because you are you. You cannot provide all that your child needs if you don't take care of you. You are a very important person and must maintain a healthy, well rounded you.--Judy

Couples - a family - you cannot neglect one another or unaffected children. This may be a difficult task but a necessary one. A strong marriage is the foundation for a strong and successful family. You will probably find it absolutely necessary to schedule time together as a couple. It is worth it. It is so very easy to get caught up in doing everything, finding every possible treatment, advocating for the best, and just meeting the daily needs of your children. At the same time, if you neglect yourself and your marriage, you will find the necessary daily tasks overwhelming. Your child/children deserve a happy mommy, mommy & daddy, or daddy.....however your family is designed.--Judy

For my family, a close and dedicated relationship with God plays the greatest role in our ability to be the best parents and family we can be. Being Christians, we make certain God is always included in every aspect of Nathan's daily care and treatment decisions. God has surely blessed us many times over, most especially with our friends at KidPower.--Judy

We deal with the same person everytime we send in preauthorization material or claims to our insurance. We got her name while dealing with one of our son's medical issues and then sent her a picture of him and started always sending our information to her. It seems to make getting preapprovals easier because she can put a face with the name on the paper.

Getting AFOs to fit in shoes: PAYLESS shoes have sneakers with tongues that aren't stitched at sides- no arch or anything inside- very easy to get orthotics in---for younger kids TODDLER UNIVERSITY sneakers have slide out inner soles- come in wide- and most have tongues not stitched on sides. Joy, SJSJL@SNET.NET

Help with Leg Cramps at Night: Sarah is almost 1 month post op lengthening surgery- was having lots of muscle spasms during sleep in splints. So last week I started to give her Arnica pellets morning & night. So far it has been great- much looser- no spasms- and none of the problems she gets from Valium (constipation). It has been 4-5 days now-- can roll over in her sleep no problem even in splints--give it a try---Joy SJSJL@SNET.NET

I have a suggestion for everyone who has a child with no bottom muscles to keep them sitting. You know that rubber stuff that you line your utensil drawers with? I bought a roll of it and I put it in all the chairs Annie sits in. We keep a square of it in the car and one in her diaper bag for the the away from home times. It works great in the wooden high chairs in restraunts. I am sure we will put one in Annie's musical activity chair. Just a helpful little hint.--Paula

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