Following are a few sample questions we have selected -
you can use the category listing to the left to find more
questions and answers relating to your areas of interest.
Click on a question to see the answer.
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My son is 5 years old and is diagnosed with PDD-NOS. He is having a hard time with kindergarten. The class works with a green, yellow and red face discipline system. Since school started there has only been 1 week that he received green faces. We are going into a 2nd week of nothing but red faces and my child?s negative behavior is escalating. I have no idea what sets him off, what happened prior to the incident(s). Should I set up a meeting? |
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| A parent can request a meeting with the student support team at the child's school. It generally involves the teacher, psychologist, principal and a resource teacher. The teacher
may need a separate behavior reinforcement system for the child, which details both rewards and consequences. At the meeting everyone can work together to come up with a plan to help her son. It may lead to assessment and a behavior plan or IEP. A few things to consider before your meeting:
Jot down your child's strengths and make a note of the activities that
he particularly enjoys. Having this information handy may be of help
during the meeting as you try to work out a plan for him. Plus, you want
everyone to recognize the positives and not just focus on the negatives.
Also, invite a family member, friend, or professional who has a good
relationship with your son to go to the meeting with you as asupport for you. This person may come up with some additional strategies. Let the school team know ahead of time that you are bringing someone with you. During the meeting, ask his teacher for specifics about what he did that earned him green faces initially. This system really might not be working for your son because he may not know exactly what he has to do to get a green face. (It seems pretty clear what behaviors earn red faces). Sometimes classroom rules can be too vague; even pictures might help. For example, if the teacher continues with this system, then she might need
to make a bulletin board with a green face and photographs illustrating
what students can do to earn green faces.
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I have a child in my center that has been resently diagnosed as having allergies to egg and egg products, wheat, soy, and peanuts. We are looking for information that is easy to understand for the parent and information for our center on menu items that would be safe to feed her. |
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| Joshua Alexander, MD: Some useful information about what a child with various allergies can and cannot eat can be found at
http://www.med.umich.edu/1libr/pa/pa_menu6876_pa.htm
This site includes recommendations for all the food allergies you listed.
While this site is useful, the family still needs to sit down with a pediatric nutritionist to review the child's likes and dislikes and work together to formulate a balanced meal plan.
If the child is less than 5 years old, the family may be able to get individualized nutrition counseling from someone at the local WIC office. |
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I am looking for a potty chair for my 4 year old son with c.p I was just lookig to see whats out there |
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| Joshua Alexander, MD: Here are some links to companies who provide adaptive potty chairs and toilets for children who have mobility impairment.
http://www.columbiamedical.com/default.cfm?display=toileting
http://www.flaghouse.com/search.asp?Category=Special+Populations&SKW=toilet
http://www.rifton.com/r/Hygiene/BlueWaveToiletingSystem/index.htm
http://www.tumbleforms.com/carpotseat.html
http://www.snugseat.com/hygiene.htm
After looking through these pages, I encourage you to contact your child?s pediatric occupational and/or physical therapist to schedule an equipment evaluation to discuss your child?s equipment options and to ensure that whatever you eventually purchase will fit your son (and your bathroom!), provide sufficient support, and accommodate your son?s future growth.
Best of Luck,
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How can I get all my child's caregivers to talk to each other? |
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| Children with disabilities often have many special needs that require assistance from multiple caregivers including medical personnel, educators, and therapy providers, to name just a few.
These professionals provide services to many clients each day and sometimes cannot connect with each other to maximize coordination of services. Many caregivers themselves are dissatisfied with the lack of time they have to talk with other providers.
Because you are the expert about your child's abilities and services, you're the best person to keep people informed. You can try to help this communication process by bringing copies of reports to visits, sending letters or e-mails to members of your child's team, and making sure that everyone is aware of any changes in your child's life. While this can seem to be too time consuming, TelAbility can help you successfully manage this process. |
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My son's school wants to do a program on spina bifida. Where can they find more information about it and about prevention? |
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| Joshua Alexander, MD: It's wonderful to hear about the interest in spina bifida from your son's school!
For more information and informational packets about this condition, I'd suggest you contact the Spina Bifida Association of America at http://www.sbaa.org/
the Spina Bifida Association of North Carolina at http://sbanc.home.mindspring.com/
and/or the UNC Center for Maternal
and Infant Health at http://www.mombaby.org/
and, for informational packets about prevention, contact the North Carolina March of Dimes at http://marchofdimes.citysearch.com/
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What makes a child a "special needs child" ? |
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| The most commonly accepted definition of children with special needs was given by Dr. Merle McPherson and colleagues in 1998 when they wrote "Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally".
The key points of this definition include:
1) A child who either has or is at risk to have a condition that affects their function and needs
2) The child's condition is long lasting (chronic)
3)The child requires extra services because of the condition
Journal Resource: Pediatrics. 1998 Jul;102(1 Pt 1):117-23. |
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I "follow" a CP chat group on facebook and one woman asked about phenol injections. no one had really heard of them. What is this? Who it is suitable for? |
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| Joshua Alexander, MD: Phenol injection is another option for spasticity management in a specific muscle (unlike baclofen or other medicines taken by mouth that decrease spasticity throughout the body).
Here's an edited part of a description from www.WeMove.org (with my comments in parentheses- JJA)
"Phenol and alcohol are injected onto nerves or into muscles to destroy them. Phenol and alcohol can effectively weaken a spastic muscle, which reduces spasticity and allows improvements in range of motion. These agents are effective in treating spasticity that occurs in large, powerful muscle groups close to the trunk, such as those of the thigh. Alcohol or phenol may be used in combination with BoNT (botulinum toxin- JJA), and all may be combined with other antispasticity treatments. The duration of effect is quite variable, from less than 1 month to more than 2 years (I usually hear it lasts from 4-8 months- JJA). The cost of either phenol or alcohol is much less than that of BoNT. When cost is a major concern, phenol or alcohol may be used to treat muscles in which BoNT could also be effective. (but this does not include the cost of sedation/anesthesia which always has to accompany phenol injections to allow the child to tolerate the electrical stimulation/shocks that are used to make sure the phenol is injected in the right place - JJA) Unlike BoNT, phenol and alcohol do not provoke a reaction by the immune system. There are several significant disadvantages to the use of phenol and alcohol. Phenol and alcohol may produce more troublesome initial side effects than BoNT, such as burning and odd sensations called dysesthesias. Damage to nearby sensory nerves may cause temporary or permanent pain, which may require medication to control." |
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