Tag Archives: Pediatrics

Special Parents Confidential 61 Ehlers-Danlos Syndrome

Ehlers-Danlos Syndromes.

“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” 

The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.

Invisible Special Needs.

Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.

One Family’s EDS Story.

For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school. 

To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler.  There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.

We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly. 

Links Mentioned In The Podcast

The Ehlers-Danlos Society – Excellent website for information and support.

Special Like Me… Madison the Great. The book written about Maddie and her life with EDS.

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Colds and the Flu – Revisiting SPC Episode 48

Colds and the Flu – Revisiting SPC Episode 48

It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?

Why Do Colds And The Flu Affect Kids Differently Than Adults?

For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.

Always Call Your Doctor First.

You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults.  As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.

Links Mentioned In This Podcast.

The Oral Rehydration Solution from The World Health Organization

The Common Cold – What Parents Need To Know. From the American Academy of Pediatrics.

The Flu – Healthy Children from The American Academy of Pediatrics. 

Surviving The Stomach Bug – American Academy of Pediatrics. 

Kids Health – Vomiting 

Kids Health – Diarrhea

Support Special Parents Confidential

If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!

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Special Parents Confidential 48 Colds And The Flu

Colds And The Flu.

It seems like every year the season for colds and the flu gets longer. Whether you’re a parent of a special needs child or not, our kids are coming down with colds and the flu all year round – for that matter, so are we parents. But what exactly are colds and the flu? Did you know that they share some of the same symptoms? How do you tell them apart? What’s the difference between the flu and a 24 hour stomach bug? How do you treat these illnesses and what can you do if you have a special needs child that has sensitivities to medicines or has challenges with standard treatments?

Why Do Colds And The Flu Affect Kids Differently Than Adults?

For this episode of Special Parents Confidential we are joined again by our friend Dr. Patricia Schultz, who has some answers. Including ways that you can help treat kids who have aversions to medicines. She also talks about the warning signs for when your child might have something else going on instead of the cold or the flu, why dehydration is a huge concern for sick kids, and – most importantly – when it’s time to take your child to the hospital.

Always Call Your Doctor First.

You’ll hear great advice about how colds and the flu, as well as Noroviruses and other illnesses can affect babies and infants, toddlers, younger children, teenagers and adults.  As always, though, Dr. Schultz’s advice is merely for informational purposes only. If you have any concerns about your child’s health, be sure to contact your family health provider or pediatrician.

Links Mentioned In This Podcast.

The Oral Rehydration Solution from The World Health Organization

The Common Cold – What Parents Need To Know. From the American Academy of Pediatrics.

The Flu – Healthy Children from The American Academy of Pediatrics. 

Surviving The Stomach Bug – American Academy of Pediatrics. 

Kids Health – Vomiting 

Kids Health – Diarrhea

Support Special Parents Confidential

If you have found this episode, or any episode of Special Parents Confidential to be helpful, please consider contributing to help support this podcast. Just click on the Support Special Parents Confidential link at the top right of the page to get to our special Pay Pal account so you can make your contribution easily and safely. Any amount you can contribute will help. Thanks for your support!

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Special Parents Confidential Episode 25 Early Intervention

Early Intervention.

There’s probably nothing more nerve-wracking and stressful for any parent than the realization that your new baby, your toddler, your child might have some problems. Whether it’s not speaking, not walking, or not engaging socially like other kids, the hardest question many parents face is, what do I do about this?

Of course friends and relatives will tell you, oh it’s alright, that’s just how some boys or some girls are… and they’ll grow out of it. But that’s not always the best advice, and if  your child does have a developmental delay or a learning disorder, they are simply not going to grow out of it. They need help. And then the question becomes, where do I get that help?

Our guest on this episode of Special Parents Confidential can answer a lot of those questions. Barbara Corbin is the Early On Coordinator with the Kent Intermediate School District in Kent County, Michigan.  She handles Early Intervention, and Early Childhood Special Education with school districts. She helps parents get their first diagnosis and coordinates getting help for children right at the very beginning. Thanks to advances in medical research and therapies, children can be diagnosed very early, and Early On programs can start at age two.

Links to websites mentioned in the podcast:

1800EarlyOn Early Intervention information for Michigan, with links to other States. The website name is also their toll free phone number: 1 800 Early On.

The Arc of Kent County Information resource for people with intellectual and developmental delays.

Center For Disease Control (CDC) Page for Parents and Infants This page has the Milestones and Schedules information to track expected progress for infants and toddlers.

Great Starts Collaborative Early Intervention Page Success Starts Early’s webpage on Early Interventions. The entire site is full of helpful information for all parents.

Pathways.org  Free online resource and tools for parents.

The Early Childhood Technical Assistance Center Online resource tools for families of children with special needs.

Michigan Alliance for Families.  Provides information, support, and education for families who have children (birth through 26 years of age) who receive (or may be eligible to receive) special education services.

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Special Parents Confidential Episode 20 Health and Wellness

Health and Wellness.

Perhaps no other subject is a greater concern to a parent than the health of their children. Parents of special needs children have an even greater concern because our kids often have disabilities or disorders that require specialized health care options. Some disabilities or disorders like Downs Syndrome can be diagnosed immediately at birth, if not sooner. Others like Autism or Dyslexia may take a few years. However, the one thing all health care professionals can agree on is the earlier you get a diagnosis for your child, the sooner you can get the right treatments and therapies, and that’s better for your child.

But where do you find the experts on your child’s disabilities or disorders, especially if you’re a first time parent and don’t yet have a family doctor or pediatrician? Often, a child can have more than one special need challenge, which can make medical decisions even harder. 

One place that offers a wide variety of services from medical checkups and advice to doctor referrals to support groups and beyond is your local county or city Health Department. Most Health Departments have a person or a group of people who support parents of special needs children with counseling, advice, and education. They can help you with ongoing support, including finding early on or early intervention programs with your local school district to get your child into special education programs that are the right fit for their challenges.

In this episode of Special Parents Confidential, John talks to Chris Buczek, RN BSN, who is the Public Health Program supervisor for Children’s Special Health Care Services of the Kent County Health Department in Grand Rapids Michigan. She also supervises the Hearing and Vision Screening Program for the Health Department, and runs a support group for parents of special needs children. And, as you’ll find out, she has a personal reason for her involvement in Special Health Services.

During the interview Chris talks about a number of websites for resources. The following are the links to those sites:

MDCH Children’s Special Health Care Services   

MI Family Center for Children and Youth with Special Health Care Needs

US DHHS HRSA Maternal and Child Health

CDC Parent Information Infants & Toddlers

CDC Important Milestones For Infants

NCMHI Children and Youth with Special Health Care Needs

American Academy of Pediatrics Bright Futures Page

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7 Myths About Medication – From The Cleveland Clinic

7 Myths About Medication and The Facts Behind Them. From The Cleveland Clinic

Medications of any kind are always a difficult decision for not only parents of special needs children but all parents. So we are pleased to be able to share an article that has great common sense advice on taking medications from the Cleveland Clinic:

7 Myths About Medication – and The Facts Behind Them

This article is mostly about over-the-counter (OTC) medications and information for adults, but much of the information applies to prescription medications and children taking medications as well.

We would add one more bit of advice that we have been given from our own pediatrician as well as other people we know in the medical profession: When giving any kind of OTC medication to a child, make sure you use your child’s weight for the dosage, rather than their age. Why? Body mass has much more of an effect on how you absorb medication than your age, and to a far greater degree with children. Some kids don’t grow as quickly as others and can weigh much less than the average for kids their age, which means for those kids a dose measured to the amount for their age would actually be too much.

Always get your medical information from reliable sources, like the Cleveland Clinic. Other good sources are The American Academy of Pediatrics, The Mayo Clinic and Web MD. You can also find links to excellent information from reliable sources on our Helpful Links page.

Avoid the myths about medication and always follow your doctor’s advice.