Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Special Needs Summer Camp

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There are over a million special needs children that attend summer camps each year. I was amazed to see just how many “specialty” camps were out there when I started researching special needs camps. There are camps that integrate special needs campers into the total camp population (mainstream.) There are also camps that cater to specific need, diagnosis, physical ability, mental ability, etc..

Physical, medical, and mental disability is no longer a barrier to special needs children attending a camp. Aspergers , autism, asthma, burn children, cancer, CP, cystic fibrosis, developmental disorders, diabetes, dyslexia, hearing impaired, HIV, ADHD, muscular dystrophy, tourettes, spina bifida, visually impaired, etc..

Most parents of special needs children are extraordinarily protective of their little one, and rightly so. However, before you close you mind to the idea of summer camp, think of the benefits for your child- independence, confidence building, activity and exercise outlet, and opportunity to interact and create friendships with peers and alike special needs children. 

Resources for finding a camp:

KidsCamps.com
MySummerCamps.com 
cshcn summer camp directory
campresource.com

When considering what camp best suits your families needs, make a list of questions, concerns, and desires.
For example- does the camp have staff that is certified, is the camp is accredited (ACA National Headquarters 800-428-CAMP); does the camp meet your child’s specific dietary, physical and mental needs; etc..

If cost is an issue, you can contact local charitable organizations, religious charities, ethnic charities, specific disease organizations, and fraternal organizations. These organizations often sponsor a child to attend a special needs camp.   

Febrile Seizures in Children

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Approximately 1 in 25 children will have at least one febrile (fever) seizure. More than one-third of these children will have at least one additional febrile seizure.

Febrile seizures are convulsions that typically occur when a child’s rectal temperature is above 102 degrees Fahrenheit. Rectal temperature is 1 degree higher than an oral temperature and one degree lower than a axillary (under the arm) temperature. In other words-- if an oral temperature reading shows 101 on the thermometer, then a rectal temp would be 102 and an axillary temp would be 100. The most accurate way to take an infants temperature is rectally.  The seizure is a response to a sudden rise in body temperature. It is the sudden spike in temperature, not how high the fever reaches, that actually causes the seizure. Because a child’s temperature can spike so suddenly, sometimes the febrile seizure is the first sign that the child is even running a temperature or sick. Febrile seizures can occur at any time during the course of a fever, but are most common within the first 24 hours of fever.

The child most commonly has some sort of viral infection or illness that causes a fever, but more serious central nervous system infections should always be ruled out. Meningitis, a life threatening inflammation of the brain and spinal cord, causes less than 0.1% of febrile seizures, but should always be considered. It is common for children to run rapidly spiking temperatures after receiving immunizations, so the immunizations can indirectly be the culprit. Children rarely have a febrile seizure before the age of six months or after the age of five.

One third of children that have a febrile seizure will have at least one additional febrile seizure. The risk factors for recurrence include: onsetbefore 18 months, shorterduration of fever before the seizure occurs, a family history of febrile seizures, and having an initial complex febrile seizure- (defined below.) Genetic and familial factors may increase susceptibility to febrile seizures, but these studies are inconclusive.

Continue to read about:

General symptoms of a febrile seizure

The difference between complex and simple febrile seizures

What to do when the child is having a febrile seizure

Treatment

Outlook for a child that has a febrile seizure

 

Now This Is What A Real Doctor Looks Like: Dr. Sean Daneshmand

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Dr. Sean Daneshmand embodies everything that a doctor should be.

Medical crisis’s are a time of great emotional, physical, and financial anguish. Medical professionals often overlook or ignore all the elements between  providing care and receiving payment.  But, not Dr. Sean Daneshmand, an obstetrician specializing in high-risk pregnancies.

CNN tell the story of  Veronica Pacheco who was put in a coma at 24 weeks pregnant because of a positive H1N1 test. Six weeks later, the fetus was in distress and had to be taken by emergency C-section. Noah Pacheco weighed less than three pounds when he went to the neonatal intensive care unit (NICU.)

Premature babies, like Noah Pacheco, and sick babies often stay in the NICU for weeks to months. The NICU may be hours away from the parents’ home. This babies are too medically fragile to be brought home….yet, the mother is released from the hospital shortly after birth. The parent(s) then must face the traumatic financial and emotional stress of making frequent trips to the NICU. Life, albeit turned upside down, still goes on….the parent(s) still have work, other children, living expenses, etc… while trying to figure out how to spend as much time as possible with their premature infant in the NICU. The Pacheco’s needed help, and they found it through Dr. Daneshmand.

Finish reading how Dr. Daneshmand is helping premature babies and their families HERE 

New Hope For Children With Cerebral Palsy (CP)

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Those that suffer from neurological disorders such as- multiple sclerosis, cerebral palsy, spinal cord injury and amyotrophc lateral sclerosis (ALS) may benefit from cutting edge cell transplants.

There are unique cells that support and surround the neurons in the nose. They are known as olfactory ensheathing cells or OEC’s. OEC’s have the ability to regenerate and they are relatively easy to obtain. These factors make them prime for transplantations to repair  some lesions in the central nervous system.

The latest OEC research is related to cerebral palsy (CP). CP is a neurological disorder that appears from infancy to early childhood. CP is essentially a class of brain lesion caused by abnormal development, injury, etc.. It has permanent effects on muscle movement of the child.

The issue 19(2) Cell Transplantation publication contains research from transplanted OEC clinical trials done in China.  33 children and adolescents  with CP were involved in the study. According to the research, 83% of the children had abnormal radiological findings. White matter damage or shrinkage, tissue loss, inadequate or delayed myelination, glial scars, etc.. were observed.

OEC’s were injected into a key location in the frontal lobes of the brain- ie- “Key Point for Neural network Restoration (KPNNR)." The theory being that the injected OECs would produce Schwann cell-like myelin sheaths around demyelinated axons.

The results of the study are amazing, despite the small sample size of the research. Dr. Huang, concluded OEC KPNNR transplantation may be effective for functional improvement in CP children. "Our results showed that transplanting OECs into CP patients could improve the neurological function of the patients and did not cause significant side effects. The procedure may be a plausible method to treat this as yet incurable disorder."- Dr. Huang.

Read issue 19(2) Cell Transplantation publication here

The Abbie Dorn Story: Brain Damaged During Child Birth And Denied Child Visitation

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As I read Abbie Dorn’s story, I was eerily reminded of Terri Schiavo.

Many of you may remember the Terri Schiavo case. The seven year battle between Terri’s parents and her husband was heart wrenching to watch. The husband wanted to remove Terri’s feeding tube because he felt that she would not wish to continue life-prolonging measures in her vegetative state. The parents fought tooth and nail to prevent Terri‘s life sustaining feeding tube from being removed, but eventually lost their battle on March 18th, 2005. Terri died 13 days later. 

Abbie’s story is also a battle of will between her parents and husband. Abbie gave birth to triplets. Shortly afterward, she began to bleed and went into cardiac arrest. Her brain was deprived of oxygen for about 20 minutes while medical staff tried to resuscitate her.  Abbie was left unable to speak or move from the brain damage.

As if what happened to Abbie was not traumatic and heartbreaking enough, now she (via her parents) are in a legal battle with her ex-husband over visitation rights for the children.

Read the rest of Abbie Dorn's Story and watch a YouTube video.

Sibling Adjustment to A Special Needs Child

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It is often very difficult for the siblings of special needs children to cope with all that goes along with having a special needs child in the family. Special needs children require an extraordinary amount of attention, care, love, devotion, and share of the family income. This can create difficult and often conflicting feelings for the unaffected sibling such as: 

  • Fear of the special needs child dying.
  • Jealously, anger and or resentment that the special needs child gets a larger share of family resources and attention.
  • Anger over lack of attention or share of responsibility.
  • Anger over not being able to go places and do things because the special needs child can’t.
  • Embarrassment over the physical and mental differences of the special needs child.
  • Guilt over the above feelings.

Sibling rivalry isn’t uncommon, but when one child is labeled as “normal” and the other is “special,” it inherently creates feelings that are emotionally disruptive and detrimental to the family unit. Parents need to be astute on how the siblings are coping with having a special needs sibling.

Watch for the warning signs that your child might not be adapting and coping with having a special needs sibling:

  • Eating and sleeping changes.
  • Frequent medical complaints- stomach ache, headache, etc..
  • Hopeless feelings or comments.
  • Perfectionism.
  • Lack of concentration.
  • Lack of self -esteem.
  • Depression or speaking of hurting themselves.
  • Loss of interest in activities or anger over inability to partake in activities.
  • Frequent bouts of crying or worrying.
  • Withdrawal from the family unit.
  • Speaking of or actually hurting the special needs child.
   
The last warning sign is very important. It is very easy for jealously, anger, and resentment to turn into violence, especially if the warning signs that the child isn’t coping well are ignored. Speaking with the family physician, seeking professional counseling, and joining  support groups can be very helpful. Support groups that involve the entire family can be a great outlet for siblings to talk with peers that also have a special needs child in the family. Everyday friends that don’t have a special needs child in the family often do not understand, much less relate, to the pressures and feelings of being a sibling to a special needs child.

Some great resources that may help siblings cope and express their feelings constructively, family adjustment, and parents are:

The Sibling Support Project.
The Winds of the Hurricane:  Siblings in the Storm of Illness, by Joan Fleitas.
SuperSibs!
Siblings for Significant Change
It Isn't Fair! Edited by Stanley D. Klein and Maxwell J. Schleifer
Living with a Brother or Sister with Special Needs: A Book for Siblings, by Donald Meyer and Patricia Vadasy.
When Madness Comes Home: Help and Hope for the Children, Siblings and Partners of the Mentally Ill, by Victoria Secunda.
Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, edited by Donald J. Meyer

I don’t want this post to seem all “negative.” Siblings of special needs children may often need help adjusting. However, studies have shown that kids that grow up feeling positive about their special needs sibling, are more likely to develop qualities like- patience, kindness, tolerance for differences ,  compassion, helpfulness,  empathy, dependability, loyalty, etc.. in adulthood.
    
                     
       
     

What State You Live In Matters For Special Needs Families

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Many people do not realize the fiscal burden of caring for a handicapped child. Even with private insurance, SCHIP, or Medicaid, a special needs child usually equates to higher medical expenses for the family.  This is especially true for low -income families that spend a disproportional  share of their income on their child’s health care. The financial hardship not only has a negative effect on the child getting the care they need, it also effects everything from family structure to meeting siblings needs.

Every family with children is going to have out of pocket medical expenses, but where a child without medical problems may have a cold per year and see a pediatrician occasionally, many special needs children have multiple bouts with illness per year and become a decoration in their doctors’ office. The gas, lodging, and meal expenses while traveling to see specialists can add up quickly. Modified housing and vehicles, adaptive equipment, adaptive toys, special clothing needs, incontinence, respite services, therapy, etc… all puts an added cost on families that are often struggling to hold on to their sanity as is. 


State and Federal representatives continue to ignore this problem, despite an overwhelming amount of supporting research. Medicaid and SCHIP programs need to be strengthened to reduce some of the burden families with special needs children shoulder. Instead, with state budget shortfalls and a steadily increasing federal debt, cutbacks to these programs are compounding….not helping special need families.


A recent study in the journal Pediatrics found that:  61% of all low income special needs families reported having some out-of-pocket health care costs for caring for their children with special needs. Of these, 30% reported  yearly expenses of $250-$500, and 34% exceeded $500 for the year. Breaking it down, the percentage of low-income families who have out-of-pocket costs for caring for their special-needs children varies greatly from state to state. For example 33.5% do in the District of Columbia compared to 84.4% of Utah families. So, where you live really does matter when it comes to how 'good' the services are.

Find out where your state ranks with financial burden here.

Undiagnosed Diseases Program

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National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR) and the NIH Clinical Center has organized an Undiagnosed Diseases Program in Bethesda, Maryland for patients that have a disease that has eluded their primary care physician(s) or have a rare disease. The program considers a rare disease to be one that has a prevalence of less than 200,000 U.S. affected individuals. This is a free program, and for those that qualify, travel, meals, and lodging may be paid for.

The program uses a combination of medical and scientific resources to achieve two goals:

    * Provide patients with answers to mysterious conditions that have eluded diagnosis.
    * To advance medical knowledge about rare and common diseases.

Medical specialists from areas such as: genetics, cardiology, dentistry, oncology, endocrinology, dermatology, rheumatology, immunology, mental health, nephrology, hematology, ophthalmology, neurology, laboratory medicine, pain and palliative care, bone disorders, immunology, primary immunodeficiency, pathology, pulmonology, primary immunodeficiency, internal medicine, pediatrics and hepatology participate in the program.

Read more about the program here

What is Mitochondrial Disease

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It is estimated that 2 in every 4000 people were either born with or have been diagnosed with mitochondrial disease. Despite it’s prevalence, there is still much that is not known about the disease and relatively little awareness.

First, lets get to know what the mitochondria are and what they do. Almost every cell in the human body have tiny organelles called mitochondria, commonly referred to as the “power house” of the cell. There are hundreds sometimes thousands of mitochondria in a single cell. Red blood cells are the only cells that do not contain mitochondria. Mitochondria are responsible for converting the food we eat into a type of energy for the body called ATP. This accounts for 90% of our energy. Therefore, the tissues with high demands for energy, such as muscle, heart, brain, and eye, are particularly vulnerable for mitochondrial defects. Nerves also have a high energy demand .

Mitochondria are the only cellular organelles that contain their own DNA and they are passed from mother to child. MtDNA defects are maternally passed. However, mitochondrial disease can also be sporadic from either environmental toxins or certain medications. Spontaneous mutations can also be the cause of mitochondrial disease. Defects in the nDNA can be inherited from either parent during the fertilization process.

When someone says they have mitochondrial disease, it is really more like someone saying “I have a headache.” That could be a stress, sinus, migraine, etc.. headache. Multiply that analogy by thousands to understand Mitochondrial disease. There are forty specifically named mitochondrial diseases and many more that have yet to receive a name, been applied to text, or have a diagnostic test. The signs and symptoms of vary according to the degree the mitochondria are defected, what mitochondria are affected, and exactly how they are affected. Each specific mitochondrial disease has it’s own set of possible and typical symptoms. The severity of the symptoms are also affected by these factors. Symptoms vary from person to person and range from mild to fatal. Even doctors that specialize in mitochondrial diseases are often puzzled by the great diversity in symptoms.

Leigh Disease/Syndrome, for example, is a progressive neurometabolic disorder that is fatal. The child often appears normal at birth, but by two years old regresses back to the an infant state of functioning. Symptoms include: loss of basic skills such as sucking, head control, walking and talking, irritability, loss of appetite, vomiting, and seizures. Latter the child develops heart, kidney, vision, and breathing complications. Whereas, Kearns-Sayre Syndrome is a slowly progressive multi-system mitochondrial disease. The symptoms begin with dropping eye lids that progress to paralysis of eye movement, retina degeneration, cardiac conduction defects, elevated cerebrospinal fluid protein, and uncoordinated movements. Death usually occurs by thirty years old. These are just two of the multiple mitochondrial diseases, but you can see how the symptoms vary.

Diagnosis is not an easy task. This is one of the many reasons it is so important to be referred to a specialist. From there, an EEG, brain MRI, metabolic tests (blood/urine/spinal fluid), clinical observations, and muscle biopsy are the usual diagnostic tools. If blood tests, clinical observations, and MRI suggest mitochondrial disease, a muscle biopsy is generally the next step. There is much controversy about fresh vs. frozen muscle biopsies. Some experts say that frozen biopsies are the only reliable way to isolate the mitochondria for analysis. Unfortunately, there are only a handful of facilities in the United States that are capable of performing a fresh muscle biopsy. For one of the mitochondrial diseases, complex V, fresh muscle tissue is the only way it can be analyzed.

At this time, there is not a cure for any of the mitochondrial diseases. All of the treatments are based on diminishing the symptoms and slowing the disease process. Again, effectiveness of treatment is based on which type of mitochondrial disease, etc… Some may improve greatly and notice a decline in symptoms, while treatment in others may be totally ineffective. This can even be said within the same category of mitochondrial disease because each person has a unique biochemical makeup. Also, without isolating which specific mitochondrial disease a child has it can be dangerous to give some of the therapies listed bellow. For example, in electron transport chain disorders a high fat diet is beneficial, but in OXPHOS disorders a high fat diet can be fatal. With that in mind, some of the treatment approaches are: cofactors and vitamins, diet, and multi discipline therapy. Co-Q10, B Vitamins, Vitamin E, and L-Carnitine are some of the common vitamins and cofactors. Avoidance of extreme temperatures, physical therapy, speech therapy, occupational therapy, frequent small meals, and avoiding fasting are common assignments. Diets specifically geared by a metabolic specialist such as: high fat, low fat, low carbohydrate, etc. can be beneficial.

In conclusion, mitochondrial disease is complex with many tiers to it. In recent years it is gaining some recognition in the medical world, but public recognition of this disease has a long way to go. If you say “autism“, most everyone has a general idea of what, why, and how…..but you say “mitochondrial disease” and people cock their head sideways in puzzlement. As the mother of a child with possible mitochondrial disease, I know first hand of this bewilderment. Even most general practicing doctors often ask me “and what is mitochondrial disease?” The lack of reliable conclusive testing is why the “possible” is included when I say my child has mitochondrial disease. All of the clinical symptoms point to mitochondrial disease, but the MRI’s, muscle biopsies, etc… have not been able to isolate a specific mitochondrial disease in my daughter.

Organizations like UMDF, David P. Campbell Foundation, UCSD’s Mitochondrial and Metabolic Disease Center, NORD, and Mitochondrial Disease Action Committeeare making great strides for public awareness, research, cures, and improving diagnostic capabilities.