Pyroluria is a genetic condition that results in an abnormality in hemoglobin synthesis. Huh?

Pyroluria was initially described by Abram Hoffer, a pioneer in orthomolecular medicine and psychiatry. He found that kryptopyrroles, a by-product of hemoglobin, bind to vitamin B6 and then to Zinc and were eliminated through urine, causing deficiencies in those minerals.

Many times Pyroluria is seen with other imbalances such as histapenia, histadelia, high copper levels, or cerebral allergies. It is also the primary imbalance for 20% of schizophrenics.

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Understanding Pyroluria

However, medical experts are still wary about diagnosing pyroluria or even recognizing that patients have pyroluria because it is still considered a biomedical disorder.

Why?

Because of its transparent symptoms and its vitamin and mineral therapy.

With all of AJ’s medical issues this was one of the ones we were quite concerned about. Fortunately, he tested negative despite all of his symptoms. But, if you remember from my last post, pyroluria can also be connected to high copper levels.

Common emotional and physical characteristics of pyroluria.
Little or no dream recall
White spots on finger nails or light nails
Inability to eat breakfast +/- morning nausea
Dry and pale skin +/- do not tan +/- burn easy in sun
Sensitivity to bright light
Hypersensitive to noise
Argumentative/enjoy argument
Mood swings and emotional outbursts/temper
Preference for spicy or heavily flavored foods
Histrionic (dramatic)
Anxiousness
Abnormal body fat distribution (e.g. protruding abdomen)
Poor short term memory
Frequent headaches
Poor ability to cope with stress
Much higher capability & alertness in the evening, compared to mornings
Reading or writing disorder/difficulties
Significant growth after age 16 or stunting of growth
Sleep deprivation
Sweet acetone breath
Abdominal pain

What are the symptoms of Pyroluria imbalance?
Signs and symptoms of pyroluria are many. There seems to be a familial or genetic component. “A family history of mental illness and all-girl families especially if there is also a history of miscarried boys.
” Frequent ear infections as a child, as well as colds, fevers and chills.
” Fatigue
” Nervous exhaustion
” Insomnia
” Poor memory or inability to think clearly
” Hyperactivity
” Seizures
” Mood swings
” Lack of regular periods in girls
” Impotence in males
” Unusual smelling breath and body odour
” Inability to tolerate drugs and alcohol
” Cold hands and feet
” Abdominal pain
” Intolerance to some protein foods, drugs or alcohol
” Morning nausea and constipation
” Difficulty remembering dreams
” Frequent head colds and infections
” Stretch marks in the skin

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What is Pyroluria?

I have always very clearly stated that AJ has never had a diagnosis of Autism but that we believe that he may be on the spectrum because of his symptoms. However, he may very well simply be a sensory seeking/avoidant child or a child affected by Institutional Autism. Or, he may be a child affected by heavy metals and environmental toxins.

Every professional we have seen has been very cautious about giving us a diagnosis…perhaps because they don’t know. Is it possible that AJ’s birth mother was malnutritioned during the time she carried AJ?

Very Possible. And I have NEVER ruled that out. But, its hard to grasp.

There is a great new book out that will help all of us with mislabeled or undiagnosed children. Written by Brock Eide, M.D., M.A, and his wife, Fernette Eide, M.D., even Carol Kranowitz is toting it as a fantastic resource for parents.

“As informed physicians and informative writers, the Eides delineate children’s mystifying behavior and ways to help them get in sync. For all of us who care about children with unlabeled or mislabeled needs, this book is a must!”

Carol Kranowitz, M.A.

The Midwest Book Review states that The Mislabeled Child “provides parents, teachers and educators a fine, clear guide to children who are different, how diagnoses often fail, and how to look behind labels to find the basics of a child’s problems.”

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Is Your Child Mislabeled?

The problem with this was that if we did not feed him he would be up for hours, screaming and crying.

It wasn’t until we visited the Pfeiffer Treatment Center that we figured out the problem. AJ has hypoglycemia, a metabolic disorder associated with low glucose levels. Although he does not have diabetes, he does get nighttime induced hypoglycemia as well as exercise induced hypoglycemia.

To treat his hypoglycemia we use high protein foods and natural fruits instead of high sugar and high fat foods. We avoid high fructose corn syrup because it sends him into a sugar high (and then crash). We try to plan his meals so that he eats at regular times and snacks at regular times. We always carry a carbohydrate and a fruit with us when we travel in the car and as soon as he starts to show any sign of crankiness we give him food (remember, he can’t verbalize his needs to us).

Additionally, Pfeiffer Treatment Center has prescribed essential vitamins and amino acids to help counteract the hypoglycemia and balance his blood sugar.

Treatment of hypoglycemia is achieved by adopting a hypoglycemic diet accompanied with vitamin and mineral supplements (Vitamin C, Zinc, Chromium picolinate, Thiamine (B1) and other B-complex vitamins, see “The Hypoglycemic Diet” ). This helps to stabilize the blood sugar, insulin and stress hormone levels, even out mood swings, rebalance the appetite mechanism, equalize energy intake and expenditure; and halt if not reverse obesity.

The Hypoglycemic Diet is the diet we follow. Note…we do not use cinnamon, as it is very dangerous for children with a salicilate intolerance. It is one of THE HIGHEST spices.

Since we began the Hypoglycemic Diet we have seen a tremendous increase in Little Pickel’s language, overall tolerance for daily life, an increase in sensory tolerances, and an ability to transition much better. So, its working for us.

To see a list of hypoglycemia symptoms check out Wikipedia.

Here is a suggested meal plan for an adult. However, it indicates food in exchanges so it can easily be transfered to a child.

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Hypoglycemia in Children

Childhood cancers are the number 1 disease killer of children. One in every 300 children will develop cancer before the age of 19. Now while the death rate from cancer has dropped significantly, about 2,300 children still die each year from cancer. Although 75% of children are cured, some forms of cancer are just so resistant that prognosis is very poor.

The Stand Up to Cancer episode last week reminded us of just how much work still needs to be done. So what can we do to help?

Chili’s is giving away 100% of its profits on September 29 to St. Jude Foundation, to helpf fund cures and help children fight the disease.

No, really, it’s easy. Just eat at Chili’s. It’s seems a weird way to help out right, but Chili’s has been a partner of the hospital fro five years, and they are doing a great job.

For more ways to volunteer or help, visit BrownBagforACure. September is Childhood Cancer Awareness Month.

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Eat at Chili’s and fight childhood cancer

It is true that a high percentage of children with Down syndrome are born to women younger than 35 years old (80%, says NDSS) fueling the connection that Palin’s 17-year old could likely be the mother to a baby with downs.

Maybe she is, maybe she isn’t. But let’s not get the wrong idea that being young makes one more likely to give birth to a baby with downs.

More women under the age of 35 are giving birth to Down Syndrome babies because prenatal genetic test for this age group is not mandatory. Hence, the mother would not know before birth (or later into the pregnancy) that the baby has Down Syndrome. Again, it doesn’t mean that younger women are at higher risk for carrying babies with downs. On the contrary, the incidence of down Syndrome increases with maternal age. Women age 35 have a 1/365 risk of carrying a fetus with down syndrome; by age 40 the chance increases to 1 in 109.

However, the number of children with Down Syndrome born to women over the age of 35 has substantially decreased in the last decade. Credit this to vast improvements in prenatal screening for genetic disorders, and the increased choice of women to terminate a pregnancy. This means, lesser number of women are continuing with the pregnancy once they learn that the fetus maybe at risk for the chromosomal disorder.

There is also something to be said about prenatal testing for genetic abnormalities. I’ll tell you about that, and my personal story, in a later post.

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Why 80% of babies with Down Syndrome are born to women below age 35

Some children who are exposed to cats in their first year of life may have an increased risk for eczema

What’s responsible for the increased risk?

Mutation in the gene for filaggrin, a protein on the skin that helps reduce water loss and protects against harsh environment.

As reported in Medpage Today, scientists from the Copenhagen Study on Asthma in Childhood found that eczema was likely to develop among children who have the mutation and who have a cat in their home at birth. Only those children with the mutation have the increased risk. Likewise, exposure to dogs at home did not increase the risk of developing eczema.

source: medpagetoday;
image: sxc

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Cats may increase risk for infant eczema

And I thought, Dakota? The little miss who has taken on more challenging roles? Well, she didn’t like to shave her head for the movie so she pulled out of it, along with her little sis. And that’s where Abigail Breslin comes in to take over her role, along with Cameron Diaz and Sofia Vassilieva, who had to appear bald for the film.

So what is “My Sister’s Keeper” all about?

It’s a film about a young girl who was genetically engineered to be a perfect match to her cancer-ridden older sister. Major WHOA! Now that’s a loaded book. The twist – she sues her family for it.

Here’s a description from the back of the book –

“Anna is not sick, but she might as well be. By age thirteen, she has undergone countless surgeries, transfusions, and shots so that her older sister Kate can somehow fight leukemia that has plagued her since childhood. The product of preimplantation genetic diagnosis (PGD), Anna was conceived as a bone marrow match for Kate-a life role that she has never challenged . . . until now. Like most teenagers, Anna is beginning to question who she truly is. But unlike most teenagers, she has always been defined in terms of her sister-and so Anna makes a decision that for most would be unthinkable, a decision that will tear her family apart and have perhaps fatal consequences for her sister she loves.” (IMDB)

I think I just found my summer read!

“My Sister’s Keeper” (2009) stars Cameron Diaz, Abigail Breslin, Sofia Vassilieva, Jason Patric, and Thomas Dekker. Alec Baldwin and Joan Cusack also star. Directed by Nick Cassavetes.

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Junior Celebrity Health: "My Sister’s Keeper", genetic planning, Dakota Fanning and Abigail Breslin

That’s what Nick Jonas, the youngest member of the famous Jonas Brothers, felt when he was diagnosed with type 1 diabetes in 2005. His symptoms were classic- he was thirsty all the time, lost a lot of weight and was uncharacteristically moody. On diagnosis, his sugar level was at a skyrocketing 700. Nick had to spend days in the hospital learning how to manage his diabetes, including giving himself insulin injections.

Adds Nick, “I wondered, ‘why me?’” He was worried that diabetes was going to keep him from performing, just at a time when his career as part of the Jonas Brothers band was ramping up.

Then he asked himself, “‘why not me?’ and realized that I might be able to help other kids with diabetes.”

And that’s exactly what he did. The Jonas Brothers were at the Diabetes Research Institute last March (his confession seen here) and talked to children about the disease, on top of a live concert from the band.

“I want to let kids know that it doesn’t have to be so hard. The most important thing is to never ever let yourself get down about having diabetes, because you can live a really great life as a kid with diabetes.”

UPDATE: Since posting this on Monday, I was able to dig up more recent, detailed interviews that Nick did, talking about his diabetes. I took some quotable quotes:

“Hopefully one day they’ll come up with some type of cure, and I hope I’ll be one of the first to know about it.” Diabetes Health – Nick tells his story.

“At first it was really hard on all of us because we didn’t know how it would affect our daily lives. I actually asked my doctor if I could die.” – when a 12YO asked Nick how his family handled the news.

For more information about the Diabetes Research Institute, www.diabetesresearch.org.

This post is part of the Health and Wellness Celebrity Health Week.
source: press release; image: newscom

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Junior Celebrity Health: Nick of Jonas Brothers has type 1 diabetes; updated with quotable quotes from Nick

Mutations in a gene were found to be common in infants and children with cardiac hypertrophy (a thickening of heart muscles), even in those without an apparent family history. Researchers recommend that parents and siblings of children with cardiac hypertrophy should consider being seen by a cardiologist for possible undiagnosed cardiomyopathy (inflammation of the heart).

Some patients who would have been diagnosed with a developmental language disorder a few years ago, now meet the newer criteria for autism and autism spectrum disorders. Hence, the rise in autism may be a result of a broadening definition of the disorders.

The FDA has approved a new drug – abatacept (Orencia) – for moderate-to-severe polyarticular juvenile idiopathic arthritis in patients ages six years and older. Polyarticular juvenile idiopathic arthritis is the most common type of persistent arthritis affecting children.

source: MedPage Today

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Breaking medical news on children’s health – April 10