A Rett Syndrome Angel

 A Rett Syndrome Angel is born

Erin S’s Story

 

Erin before Rett SyndromeYet another Rett Syndrome Angel was born in September 2007. Her birth and life has led to the development of this website and an effort to provide support to the families of Rett Syndrome children in South Africa (and even those abroad if they care to join us) so it only seems right to document her and her family’s journey.

Erin is my granddaughter. All was well during the first two years after which point her mother (my daughter, Kim) began to suspect that something was wrong. Erin was slow to speak and then stopped talking altogether. She also did not appear to have full control of her arm movements and would wake up during the night screaming and crying uncontrollably. She also walked with her legs spread wide apart.

At this stage we had never heard of Rett Syndrome.

Kim took Erin to an occupational therapist. There did not appear to be any improvement and in fact she seemed to become very stressed.

Erin was then taken to a Sacral Cranial therapist. Within a month we noticed that for at least three to four days after therapy she was far happier and much more relaxed. It was this therapist who first noticed the development of scoliosis and recommended the assistance of a physiotherapist and then later, a chiropractor.

Unfortunately, the therapists had never heard about Rett Syndrome either, so none of them could point us in the right direction.

Meanwhile, Kim was still struggling to get an answer as to what was causing Erin’s problems. After a very long wait she eventually managed to get an appointment with a Pediatric Neurosurgeon.

By this time additional problems were occurring and Erin began to constantly fall down. She was very aware of what was happening and a few seconds before her legs gave out from under her she would try to get to the closest piece of furniture or family member and grab on tightly. We as a family were at our wits end. What was this medical mystery?

She also began to have the occasional seizure.

Rett Syndrome and diet

As a family, we have always had a strong belief that food can both heal as well as cause health problems and so Kim removed all gluten (wheat, oats, barley, rye), soy, casein (milk products) as well as colorants and preservatives from Erin’s diet. The change was startling. Within forty eight hours her “falling down episodes” slowed down and within a week they had stopped.

Does diet have an effect on Rett Syndrome? We don’t really know but it certainly had an effect where Erin was concerned.

It was shortly after this that Erin finally got to see the Pediatric Neurosurgeon, but after a battery of tests nothing wrong could be found. Rett Syndrome was apparently also ruled out at this time.

A few months later (Erin was already 3 years old by this time) she landed up in hospital because she had a number of seizures one after the other. The Pediatrician who saw her, immediately suspected Rett Syndrome, but it was to be three long months before the official diagnosis was confirmed.

Erin continued to have a 3 or 4 very minor seizures per day for the next month or so and then suddenly they escalated to 30 to 40 seizures every day. She became like a rag doll. Her strength was gone, she was not even able to roll over without help. It took a while but eventually the seizures were brought under control with the help of Epilim.

It was also during the latter period of this time (she was only having 1 or two seizures a day) that we became aware that she seemed to be showing signs of hypoglyceamia (low blood sugar). Daily testing before and after meals showed that this was the case and once again Kim made changes to her daughter’s diet.

Kim made sure that Erin had a meal every 2 to 3 hours. Yet again the change in Erin was astonishing. From a child who was too weak to walk, she turned into a mischievous little imp who ran around getting into and onto everything. In retrospect, it seems that Rett Syndrome is definitely affected by what is eaten and how often it is eaten.

Rett Syndrome Confirmed

Finally, a month later, The diagnosis of Rett Syndrome was confirmed and Erin officially joined all the Rett Angels around the world.

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