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This area is divided into several sections. The first section, "Expert
Answers", features answers to frequently asked questions on a wide range of
topics from the perspectives of medical providers, therapists,
nutritionists, and other professionals. You can search this section to find
questions and answers on topics of interest to you. Please check back
often, because we'll be updating this area frequently. Should you have
questions that are not addressed in this section we encourage you to use the
second section, "Ask and Expert" to submit your question(s) to be answered
by our TelAbility experts. To identify and contact expert resources to
consult with in your area please use the third section, our "Expertise
Directory".
Following are a few sample questions we have selected - you can use the
search mechanisms below to find more questions and answers relating to your
areas of interest.
- "I am working with a 2 1/2 year old little boy who has severe sensory
- An orthopedist has suggested my 8 year old daughter with hemiplegic cerebral pasly get surgery for heel cord lengthening. Where do I get information on the different varieties of this surgery and their respective success rates?
- Can You Give Me More Information About Salivary Gland Ligation Surgery to Treat Drooling?
- Can you give us any information about using tegretol for behavorial control/mood changes?
- Does Medicaid reimburse families in NC for the use of Theratogs?
- Does anyone know of a private school that would be a good fit for a 6 year old with ADHD and learning disabilities?
- How Can I Toilet Train a 3 year old Girl with Cerebral Palsy?
- How can I get all my child's caregivers to talk to each other?
- 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
- I am trying to help a mom who has a young child with autism who is now trying to escape from her carseat while they are driving. Does anyone know if there are special latches or carseats that are harder to get out of?
- 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.
- I have trouble feeding my 7 year old boy who has cerebral palsy. What do you know about these calorie boosters I found online? They are microlipids, MCT oil, polycose, Casec and HMF. Thanks!
- My child has been "unofficially diagnosed" with cerebal palsy because her doctor could not put in writing until my child is a year old. My question is "What do I do now in the mean time"?
- My child uses cisapride for his reflux, but my pharmacist told me that it's going to be taken off the market. Is this true?
- My daughter has problems aspirating her secretions and it's hard to brush her teeth without her strangling. Do you know of any toothbrushes or equipment that could help?
- My daughter has quadraplegia and is tube-fed. Her molars are coming in very slowly and the gums around them are very inflamed. What can we do?
- My daughter is 8 years old and has spastic diplegic cerebral palsy.What do you think about Smooth Move tea to help with her constipation?
- My family wants to go to the beach, but we can't move our son's wheelchair on the sand and he's too heavy to carry. What can we do?
- 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?
- 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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If you have a question you'd like to ask a TelAbility expert, please select
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Use our directory to identify and contact the expert resources in the fields
you need. To view a list of experts in your area, select their location
from the map or select a category of expertise:
"I am working with a 2 1/2 year old little boy who has severe sensory
Below are responses to this question from two Triangle Area Music Therapists:
"Many of the students I see receive this therapy with great results, but I’m not aware of research conducted on this topic. Music therapy involves active participation, prescriptive interventions specific to the client, and the creation of music by the client.
Therapeutic listening required a set curriculum and involves passive listening via headphones with recorded sounds, not specific songs (to the naked ear it sounds like
psychadelic mixed sounds.) It does not involve the client's preferred music.
Music therapy goals lie in the domains of socio-emotional, psychomotor, cognitive, communicative, and musical goals."
Angie Hong, MT-BC
The Carolina Center for Music Therapy,LLC
"I have worked with children who did benefit from therapeutic listening therapy;
however, I've also had children who significantly regressed. The purpose of
therapeutic listening is to organize the central nervous system. According to research conducted in 2003, the American Speech and Language Association, could not provide client’s data supporting the effectiveness of therapeutic listening.
Music therapy is individualized according to each child's need. Some days children benefit from stimulating activities...other days from relaxation activities. Music therapy is multisensory making it a great avenue for addressing sensory integration challenges. The specific elements of music (rhythm, melody, tempo, form, dynamics, etc) are "prescribed" according to each child's needs. Playing instruments,rhythmic movement, singing, music listening and instructional therapy are all used to engage sensory systems and, in turn, help to organize the central nervous system."
Paula Scicluna, MT-BC, NMT
Rhythm & Rehab, LLC
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An orthopedist has suggested my 8 year old daughter with hemiplegic cerebral pasly get surgery for heel cord lengthening. Where do I get information on the different varieties of this surgery and their respective success rates?
Joshua Alexander, MD: The advantages of a surgical lengthening of a heel cord include:
* Better range of motion
* Better ankle dorsiflexion (bringing toes up to your nose)
* Smoother walking
The disadvantages of a surgical lengthening include:
1) Surgical risks
2) Over-correction leading to crouching on the side that's had surgery.
In cases where there is only an Equinus ("toe-down") deformity, the usual procedures focus on lengthening the tendons to the calf muscles (the gastrocnemius and soleus). These can be done either under general anesthesia or as an outpatient surgery using a method called percutaneous (through the skin) surgery. In most cases, the child who has a heel cord lengthening will wear a short leg cast for 2-6 weeks afterwards to allow the tendon to heal in place.
Most heel cord lengthenings work well, but research has shown that about 1 out of 5 children who get them need to have them done at least one more time. This recurrence rate is higher for children who have surgery before they're five years old and lower for children who are 8 years old or older.
Since every surgeon has different approaches and results, it's best to ask your surgeon what they would predict for your child's outcome.
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Can You Give Me More Information About Salivary Gland Ligation Surgery to Treat Drooling?
Joshua Alexander, MD: Drooling is a common associated condition in children and adults with cerebral palsy.
In my opinion, partial ligation of salivary glands is a good option for those children whose drooling is not treated sufficiently by oral motor therapy, and medical management (with scopoplamine or robinul). Botulinum toxin injection management is also a useful, but temporary, intervention.
For a more permanent solution, the surgeon will partially ligate (close-off) either the parotid or the submandibular glands (the glands that make saliva). When successful, this operation can significantly reduce the amount of saliva (and thus, drooling) the child exhibits without making the mouth too dry.
If the mouth becomes too dry, it can impact eating and swallowing and increase their risk of tooth cavities.
While I hope that this provides you both with a little more information, the best resource to answer this question is the surgeon or the surgeon's nurse, who can discuss the specifics of the surgery, the recovery (based upon their prior experiences), and the potential side effects.
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Can you give us any information about using tegretol for behavorial control/mood changes?
Joshua Alexander, MD: While most commonly used to treat seizures and some types of pain, carbamazepine (Tegretol.) has been used as a mood stabilizer in bipolar disorders and rage outbursts.
It has also been used to decrease agitation and self-injurious behavior, and it has been used to lessen aggression in children with attention deficity hyperactivity disorder (ADHD).
Other examples of seizure medicines that have been used to control severe mood changes include Valproic Acid (Depakote, Depakene), Gabapentin (Neurontin), and Lamotrigine (Lamictal).
In most cases, rigorous scientific studies to demonstrate the efficacy of using tegretol in these conditions have not been performed, and the long-term consequences of medication use in children with behavioral/mood disorders are not well known.
Does Medicaid reimburse families in NC for the use of Theratogs?
"NC Medicaid does not reimburse families for out of pocket expenses.
NC Medicaid can only provide payment to an orthotist for TheraTogs. If a
family would like reimbursement for their out of pocket expense, the
family and the therapist would have to find an orthotist who would agree
to submit the required paperwork to NC Medicaid and agree to reimburse
the family once the orthotist's claim to NC Medicaid was paid.
Reimbursing families of children enrolled in IT-P who pay out of pocket
for DME on the advice of the Service Coordinator or therapist has
increased. Most state program funds can not provide payment to families,
only providers."
Liz Reeser,
North Carolina Regional Physical Therapy Consultant
Does anyone know of a private school that would be a good fit for a 6 year old with ADHD and learning disabilities?
This question was posed to a number of experts on the WATCH ListServ, and the following are the responses.
-Consider Fletcher Academy, although he might be a little young for them.
-Don Rosenblitt, Director of The Lucy Daniels Center
-Chesterbrook Academy in Cary, NC has a program that specifically works with children with LD. The program is called Paladin. It is expensive, but they are now fully mainstreaming the children into the private school setting with all the other supports for teachers and resource materials that, if they are still doing, are specific, research based and evidence based practices that will help children with ADHD, processing difficulties, social skill needs, and organization, study practices etc. I am not sure how it is run now, call Tina, the principal.
-Mary Henson
-If the family can make it over to Durham, I've heard good things about the Hill Center http://www.hillcenter.org/admissions.cfm
-Joshua Alexander
-The Trilogy School is located behind CPI on Merton Drive (781-7804).
Kids with ADHD and LD are their target population from what I understand. It is a small school with very small teacher/child ratios.
-Kathi Gillaspy
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How Can I Toilet Train a 3 year old Girl with Cerebral Palsy?
Joshua Alexander, MD: As you know, potty training a child requires the child to be cognitively and physically ready. You can tell that a child is cognitively ready when she is able to tell you when she has to go to the bathroom, doesn't like having a wet or soiled diaper, and can follow simple instructions related to potty training.
A child is physically ready when you can tell when they have to go to the bathroom by what they say or how their face and body look. Another important factor is that they have regular, soft stools that are not painful to pass.
Children with cerebral palsy can have problems with communication,constipation, neurogenic bladder, muscle coordination/control, balance, and functional deficits in transferring and mobility - all these
factors can contribute to difficulty with toilet training and need to
be taken into account when devising a program.
A special potty chair and other adaptations (like a stool so that feet
don't dangle) should also be considered and a timed (shcheduled) voiding trial can be used for children who have not yet developed good bowel and bladder control.
I'd suggest that, if she is cognitively ready and willing, you first make sure she doesn't have any constipation problems. If not, I'd suggest contacting an occupational therapist who has expertise in adaptive equipment to help evaluate the child's potty chair and positioning needs. Once this is all in place, either regular potty
training or timed voiding training can commence under the supervision
of her local doctor, therapist and, if needed, a pediatric psychologist.
For more information, the American Academy of Pediatrics publishes a
book about toilet training
http://www.amazon.com/exec/obidos/ASIN/0553381083/ref=sib_rdr_dp/103-
0182930-5288618 that includes a chapter on training children with special needs.
Above all, readiness, preparation, patience and celebrating success all
help to make toilet training a succesful venture for all involved.
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How can I get all my child's caregivers to talk to each other?
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.
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
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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I am trying to help a mom who has a young child with autism who is now trying to escape from her carseat while they are driving. Does anyone know if there are special latches or carseats that are harder to get out of?
This question was posed to a number of experts on the WATCH ListServ, and the following are the responses:
-I bought a device called BuckleGuard from Babies'R'Us. It slips right over the buckling mechanism and has a tamper
resistant cover. It should be worth a try.
-Vijaya Tangella, Psychologist
-It appears that Babies r us no longer carries this but I did a google search for buckle guard and there are several websites that sell similar devices. Thank you for responding. I also have
a family with this problem and I never realized there was a device to be used for seat belts. For the time being, the family placed her back in a harness car seat.
-Alison, CCT
-I've heard good things about the E-Z-On Vest http://www.ezonpro.com/products/familyVehicle.shtml
-Joshua Alexander
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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.
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.
I have trouble feeding my 7 year old boy who has cerebral palsy. What do you know about these calorie boosters I found online? They are microlipids, MCT oil, polycose, Casec and HMF. Thanks!
Sharon Wallace, RD, CSP, CNSD, LDN: Microlipids is a fat emulsion that offers 4.5 calories in each milliliter/cc added. It is
usually added to tube feedings since it does not separate as well as other fat sources(Medium chain triglycerides and corn oil). It is not the tastiest stuff on the planet, is quite expensive and requires a doctor’s prescription. I don’t suggest it unless a child is tube fed.
MCT oil (medium chain triglycerides)- is a more concentrated fat source, providing about 8 calories in each cc (40 calories in a teaspoon). It’s useful for children who have difficulty with absorbing fat (like you see in cystic fibrosis or short gut syndrome). MCT oil does not mix well like microlipid, so it usually is given by itself in a tube feed. It is NASTY tasting stuff (not to be biased or anything but it really is) and also quite expensive. Also needs a script. I would not recommend this unless a child has significant malabsorption.
Polycose- is a carbohydrate additive that contains 23 calories per tablespoon. The powder form it is almost tasteless and dissolves easily, so it can be added to casseroles, cereals, yogurt, juice etc .It needs a prescription, but is not overly expensive. While this is often a good option, you could get the same nutrition from dried milk powder, or even blended rice cereal
Casec- is a protein supplement, that adds about 20 calories and around 3 grams of protein per Tablespoon. Since it is casein based, it’s usually not as easily digested as whey.
Promod, which is whey based might not be a bad option, but also requires a prescription and you need to watch how much is used because of the protein it contains.
Human Milk Fortifier-yikes!! This should not be an option for an older child, only preterm breast fed babies. He should not use this.
For more ways to boost your child’s calories, please see the TelAbility handout entitled “Pass the Calories!” available in the Education Section.
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My child has been "unofficially diagnosed" with cerebal palsy because her doctor could not put in writing until my child is a year old. My question is "What do I do now in the mean time"?
Joshua Alexander, MD: I am not sure why you need to wait until your child is officially one year old to be able to make a diagnosis of cerebral palsy (CP).
Cerebral palsy is a condition where a person has difficulty with movement and posture because of an injury or lesion in a developing brain. This condition does not worsen with time, but different challenges may arise as a child grows up. While it is often not diagnosed until late in the first year of life or later, this is NOT because of any age limits!
As for what to do now:
You can start by going to http://www.ucp.org/uploads/eachofus.pdf where you ll find a 26 page booklet created by a group of parents and providers from United Cerebral Palsy of America entitled "Each of Us Remembers" . I think this booklet offers wonderful information, by parents, for parents of young children recently diagnosed with cerebral palsy and should be a good place to start your journey.
Next, if you haven't already done so, you can search our website http://www.telabiltiy.org using the search word "cerebral palsy" to get a listing of events, experts, books, and links that can help you learn more about CP.
If you live in North Carolina, you should get in touch with your county's early intervention services to make sure your child receives the services that can help them achieve their full potential.
http://www.dhhs.state.nc.us/dcd/icc_par.htm
United Cerebral Palsy of North Carolina http://www.ucp.org/main.cfm/124 and the Family Support Network of North Carolina http://fsnnc.med.unc.edu/ are also excellent organizations that will be able to provide you with information, resources and support.
Finally, I would encourage you, as much as possible, to not let this diagnosis become anything more than just that, a diagnosis.
Cerebral Palsy may be one way to describe your child's physical disability, but it should never define who your child is. That is something that will only come with time, maturity, and love.
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My child uses cisapride for his reflux, but my pharmacist told me that it's going to be taken off the market. Is this true?
Yes, cisapride (Propulsid(R)) is going to be taken off the US market in July, 2000.
For more information, go to TelAbility's Medications of the Month archive (located in the What's New section).
My daughter has problems aspirating her secretions and it's hard to brush her teeth without her strangling. Do you know of any toothbrushes or equipment that could help?
Joshua Alexander, MD: Ask your dentist about using a Plak Vak.
It's a toothbrush that attaches to a portable suction machine.
At http://www.trademarkmedical.com/personal_use/plakvac.html you can find more information about this product and order a demonstration video.
My daughter has quadraplegia and is tube-fed. Her molars are coming in very slowly and the gums around them are very inflamed. What can we do?
Inflammation of the gums is commonly seen with eruption of the 3rd
molars but this can be prolonged in children who are not chewing and
stimulating the gums to allow for breakdown of the gums/gingiva.
This inflammation can sometimes lead to infection of the gums and around the teeth, but this can be treated either by having a dentist flush the bacteria out by irrigation or sometimes pushing/cutting the gums back.
Please remember that this is a general response to your question and reflects a commonly occuring condition which may or may not be applicable to your child.
As always, we recommend that you discuss this further with your dentist
or another dentist who has special expertise in caring for children and
young adults with developmental disabilities.
My daughter is 8 years old and has spastic diplegic cerebral palsy.What do you think about Smooth Move tea to help with her constipation?
Joshua Alexander, MD: As per some website information provided by the company that makes this tea, he only "active" ingredients are the Sennosides A&B and the Senna leaf. This is the same active ingredient found in Senokot (we reviewed this as a recent TelAbility Medicine of the Month - go to http://www.TelAbility.org and search for SENNA).
However, the tea also contains other "natural" laxatives like licorice and fennel seed that may increase its effectiveness and soothe the stomach from some of the side effects of the sennosides.
Keep in mind, though, that while the makers of Senekot state that their pills are standardized (every pill contains the same amount), it would be hard to do the same with a blended tea bag.
As always, I would recommend that you discuss use of this tea with your daughter's doctor. Even though it doesn't need a prescription, it can still cause effects in the body that need to be considered.
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My family wants to go to the beach, but we can't move our son's wheelchair on the sand and he's too heavy to carry. What can we do?
Joshua Alexander, MD: In North Carolina, we're lucky to have a program that can help your whole family enjoy the beach.
Beach-ability, run by Easter Seals of NC
http://www.esnc.org
provides beach accessible mobility aids at most of NC's coastal areas.
Natural Access, a company in Santa Monica California , markets an all-terrain wheelchair called the Landeez that can roll over sand, gravel, snow, and soft soil. More information about this product can be found at http://www.natural-access.com/
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?
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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My son's school wants to do a program on spina bifida. Where can they find more information about it and about prevention?
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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Our child has recently been diagnosed with sensory integration dysfuntion. It has taken over our lives. She will give up fun activities with friends if the even requires her to wear socks, she now refuses to attend gymnastics class due to the leotard she has to wear, and we encounter "melt downs" every morning due to having to put on clothes that are "too tight" (although those clothes are a size too big). Do you think OT would be beneficial and what types of techniques are used?
Linda King Thomas: The behaviors which are described indicate a Sensory Modulation Disorder (this is a type of sensory integration disorder also known as sensory integration dysfunction). Based on these behaviors your daughter would be a good candidate for sensory integration therapy. Intervention would include parent and child education regarding this diagnosis, therapy intervention and developing a home program of sensory input (sensory diet) to help modulate the over-responsiveness to sensation.
A good reference on this subject is the book, Sensational Kids by Lucy Jane Miller.
Linda King-Thomas MHS, OTR/L
Developmental Therapy Associates
3514 University Drive #8
Durham, NC 27707
919-493-7002 ext.23
www.developmentaltherapy.com
We have a 4 year old child that has beeen diagnosed with Autism. He has frequent bowel movements, loose at least 2 times a day (from 8:30 a.m. to 2:30 p.m.), they seem to stick to his skin and the smell is very, very strong. Could this be a trait of Autism?
Joshua Alexander, MD: Autism is a spectrum disorder with a wide variation in abilities and deficits. Its major diagnostic criteria include impairments in social interaction and/or communication, and the presence of restrictive, repetitive patterns of behavior, interests and/or activities. There is nothing in the diagnostic criteria that mention stool patterns.
While there has been much controversy about the gut-brain connection in autism (Dr. Wakefield and others have proposed a relationship between autism, bowel inflammation, and measles vaccine), there have been no scientific connections proven between autism and stool patterns.
Still, many (like the Autism Society of America) feel that “Individuals with autism may exhibit low tolerance of or allergies to certain foods or chemicals. While not a specific cause of autism, these food intolerances or allergies may contribute to behavioral issues. Many parents and professionals have reported significant changes when specific substances are eliminated from the child's diet.”
In addition, the ASA writes that individuals with autism may have trouble digesting proteins such as gluten (found in wheat, oats and rye) and casein (found in dairy products). They believe that incomplete breakdown and the excessive absorption of peptides may cause disruption in biochemical and neuroregulatory processes in the brain, affecting brain functions.
You should also check in to see if a child has any unusual food preferences (as is commonly seen in autism) that might be contributing to his diarrhea.
While most pediatric gastroenterologists do not feel there are direct relationships between the gut and autism, many are willing to run tests (stool, urine, blood, breath) to see if there are other gut problems causing symptoms like chronic diarrhea. I would suggest that, if a child has a pattern like this for more than 6 months, or if a child is failing to grow at a normal rate, a visit to a pediatric gastroenterologist might be worthwhile.
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We have a blind hispanic 3 and 1/2 year old boy at our developmental day program. He is not getting any services for his blindness at this time. Could you give us some suggestions on how we are to teach him to eat? How about potty training?
It is not uncommon for children who are blind or visually impaired to learn self-help skills at a later age. However, if he does not have any cognitive delays or other physical or behavioral challenges, it would be appropriate to teach him to feed himself at this age (A study of blind children by Norris and colleagues way back in 1957 showed that more than half could eat, unassisted, with a spoon by the time they were 3).
The following resources can help you address this topic:
The Early Intervention Training Center for Infants and Toddlers with Visual Impairments lists many Self-Help Skills Resources (Articles, Books, Videos and more) that cover this topic. You can access these resources at http://www.fpg.unc.edu/~edin/resSelfHelp.htm#books
The Blind Children’s Center in Los Angeles sells a booklet ($10) and/or video (for $35) called Let's Eat that “provides guidance in fostering the development of competent and independent feeding skills in children with visual impairments”. You can order it through http://www.blindcntr.org/pubs.htm or call them at 800-222-3566.
For toileting, there's a resource available online from the Texas School for the Blind and Visually Impaired called TOILET TRAINING CHILDREN WITH DEAFBLINDNESS: ISSUES AND STRATEGIES and should help you and your staff get started.
It’s available at http://www.tsbvi.edu/Outreach/seehear/summer00/toilet.htm
The Governor Morehead School for the Blind http://www.governormorehead.net/.
currently have a teacher vacancy in Hoke County, but Kelly Davis will contact you to discuss this matter further.
For other resources (including a toy catalog) for young children who are blind or visually impaired, just go to the TelAbility website at http://www.telability.org and search the website using the keyword BLIND.
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What are your experiences using weighted blankets with children diagnosed
Sue Powell: I have used weighted blankets for children with sensory processing problems
only with varied results. Because it is a static sensory input, it only has
about 20 minutes of impact on the sensory system before the child will
habituate to it. It has been good for helping some children settle enough
in that time to help fall asleep for nap time or bed time. If your purposes
are for more consistent organization in the day I would try something more
dynamic that uses as many large joints as possible (push-ups, jumping, heavy
work).
I've not had issues with safety precautions but I would only use the blanket
with a child at least one year of age. You should be able to decrease the
weight in the blanket by removing some of the weights if you are concerned
until you see how a child responds.
What is Craniosacral Therapy? Is there any research to demonstrate its effectiveness?
Darlene K. Sekerak, PT, PhD: Craniosacral therapy has become a popular, somewhat alternative, therapy
for a number of movement problems for individuals of all ages. It is
often used with individuals experiencing neck or back pain but is also being used for young children with cerebral palsy or other movement
problems related to developmental disabilities.
The limited research to date about the effectiveness of craniosacral
therapy is inconclusive. You might want to visit the Research to Practice website provided by the Research and Training Center on Early Childhood Development for additional information. They have posted a review of 20 publications in professional journals about use of this treatment for your children. They have also posted a family friendly summary called Bottomlines based on this review.
http://www.researchtopractice.info/productBridgesCPnmt.php
To my knowledge, there is no reason to expect that adding craniosacral
therapy would "interfere" with a child's response to "traditional"
therapy if it is added rather than substituted for other therapy.
Please keep in mind that my comments are directed in general at
craniosacral therapy for children. It would be impossible for me to make
a specific recommendation for your child or to anticipate your child's
response to any therapy.
I'd encourage you to discuss your concerns with your therapist and to be
sure that all your questions are adequately answered before agreeing to
any therapy for your child. Always remember that the choice is yours.
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What is Sandhoff's Syndrome?
Joshua Alexander, MD: Sandhoff’s Disease is an inherited, worsening neurodegenerative disorder caused by low levels of hexosaminidase A and B proteins. This leads to the body’s inability to process and rid itself of other proteins called GM2 gangliosides. These proteins build up in the body, especially in neurons (nerve cells) and cause problems similar to those seen in Tay-Sachs disease.
Weakness begins in the first 6 months of life. Startle reaction, early blindness, progressive mental and motor deterioration, doll-like face, cherry red spots, and macrocephaly (large head) are all seen. Death usually occurs by age 3 years.
For more information about Sandhoff’s Disease, try the website of the National Tay-Sachs and Allied Diseases Association at http://www.ntsad.org/pages/sandhoff.htm
What is the Tardieu Scale?
Joshua Alexander, MD: The Tardieu scale, developed by a French clinician in 1954, is a way to measure spasticity ( A velocity-dependent increase in tone) that compares how a spastic muscle “catches” at low and high speeds.
It measures the intensity of the muscle reaction to being stretched, the angle at which the catch is first felt, and how this changes when the muscle is stretched slowly and quickly. Some clinicians feel that this is a better measure of how velocity contributes to spasticity compared to other measures (like the Ashworth Scale) which don’t take speed of muscle stretch into account.
After ranging a joint slowly and then quickly, the spasticity is assigned one of the following scores:
0 No resistance throughout the course of the passive movement.
1 Slight resistance throughout the course of the passive movement with no clear catch at a precise angle.
2 Clear catch at a precise angle, interrupting the passive movement, followed by a release.
3 Fatiguable clonus, less than 10 seconds when maintaining the pressure, appearing at a precise angle.
4 Unfatiguable clonus, more than 10 seconds when maintaining the pressure, at a precise angle.
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What makes a child a "special needs child" ?
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.
When a parent is told by their preschool school coordinator that a
This question was answered by SLPs and members of the WATCH Project.
Response #1. "To my knowledge, children in Preschool are eligible for speech/language services and if they qualify under the
guidelines should receive the services. The key is QUALIFY - a child may
be in need but may not qualify for it to be a public school service but
could benefit from private therapy. We have a number of children who get
the service in addition to special education services. It is also a stand
alone service. I would challenge this statement. The parent can call ECAC
or FSN for support and counsel or the ARC. I would assume the parent can
also call the Director of all Special Education Services and /or the
Superintendent for clarification or call the NC Public Schools in Raleigh."
Response number 2:
"Children are able to get speech therapy before the age
of 5 and certainly someone can get it through a private speech therapy
agency. But, through the school system, 3-5 yr. olds
have to qualify for school speech therapy by showing enough delays. If
the parents wants just a screening they can call Project Enlightenment in Wake County at 856-7774 and ask for a free speech screening."
Response number 3:
"The family in this situation can always be referred to a private SLP - most
will offer a free screening before recommending evaluation. If formal
evalaution is necessary, the family would have to work with the private
provider regarding insurance or other payment methods. This kind of
situation happens often in which a child may have articulation errors or
very mild language issues that don't cause the kinds of testing scores that
make them eligible for preschool services. Private practices follow more
"medically" based guidelines instead of "educationally" based, and although
a child may not score 1.5 or 2 standard deviations below the norm on
testing, they may still have delays for which therapy would be beneficial."
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