Why is the Medical Care of Children with Disabilities so Poor and Parents so Misinformed?

Why is the Medical Care of Children with Disabilities so Poor and Parents so Misinformed?

Over the last six months I have been talking to many parents at Autism Expo’s in metropolitan Melbourne and regionally in Victoria. What is clear is that children with disabilities, when they get a diagnosis, do not get a thorough evaluation of underlying medical or nutritional issues. Parents concerns are dismissed. Parents seeking advice regarding their children’s behaviour, and poor response to therapies, hit a brick wall. Why are children here in Australia not given the same quality of medical care as in other countries? Why is the research into other medical interventions ignored or dismissed?

You just need to listen to parents, and you soon realise how many sad stories are out there. I spoke to a parent whose child was diagnosed with Autism Spectrum Disorder (ASD) just over a year ago. She asked the paediatrician that made the diagnosis what she can do for her child. The response was “Go home, lock all your doors, hide the knives and watch Rain Man”. Really? This was the best advice he had to offer, despite so much research that is being published. This is the most appalling advice given to a parent that I have ever heard!

As a parent, I know what it is like to get a diagnosis for a child. Once you get over the shock, naturally you expect that there will be some advice that offers some hope for the future. It seems that over the last 20 years, since my son was diagnosed with autism, the medical advice to parents has changed very little. Parents have the option to go with mainstream medical advice or look for alternative options. It’s no wonder that parents look beyond mainstream advice. The internet is a wonderful means to connect parents, get advice, research your child’s disability, and search for solutions. Unfortunately, the more time spent trawling through websites and discussion forums the more confused parents often become. It is also where parents come across information from sources that are not particularly credible, are discouraged to look further and finally give up.

I’ve been there and spent countless hours wading through the useful and increasingly not so useful information. That is why I put together a website that provides parents, in one place, the type of information that I would have wanted at the time of my sons’ diagnosis. We do not know the cause of autism. We do not have a pathology or a genetic test for it. We do know that the incidence of metabolic, neurological, immunological and gastrointestinal problems is considerably higher in these children than in other disorders. In the absence of a clear “defect” that we can treat, logically it makes sense to treat any underlying medical issue and nutritional deficiency, so that nature can do what it does best, and help heal your child.

Talking to parents, carers, teachers and professionals at these events, I often ask “What is it that you are looking for here today?”. It seems like a simple question. The obvious answer is anything that can help their child. However, it is surprising how few parents have even considered that their child may have underlying medical or nutritional issues causing some of their child’s difficult behaviours.

When I first started to talk to parents at these expo’s in 2006, it was rare to meet a parent that was on board with diet, supplements or had any comprehensive medical or nutritional testing done on their child. The last two years I have been surprised by the number of parents that have their children on modified diets, supplements and seeing significant improvements in their behaviour. Something seems to be changing – for the better. Probably not surprisingly, these parents are also reluctant to say what they are doing to other parents or medical professionals. They feel that the energy wasted in defending what they are doing is not worth it. They are seeing significant improvements in their children – and that is all that matters.

At one particular event this year, I remember some parents were almost whispering that they totally agreed with what I was promoting, and their children were doing so well. A quick “good on you for promoting this” and poof they were gone! It felt as if I was part of a secret society. So for every parent that doesn’t believe in this, they are most likely, unknowingly, rubbing shoulders somewhere with a parent that is.

There is definitely growing interest in looking beyond a child’s diagnosis and mainstream advice. There is increasing interest in what else we can do for these children. There is a golden window of opportunity when they are young to help these children achieve their full potential. We should take note and learn from other disorders what can be achieved in these children. You can read a great example of this in the article What can we learn from treating Rett Syndrome? Parents need to take note. This is not “quackery”. It is substantiated by research, and it is not “dangerous”. Not giving children proper medical care and giving medication (not evaluated for use in children, or long-term side effects) is dangerous.

Teachers and Professionals

Teachers and other professionals are looking for fresh ideas as to what is available to help children with special needs. My challenge to these professionals is to look beyond a child’s behaviour and question as to what may be the underlying driver for their behaviour. Ask parents some basic questions about their children. When you see a pattern emerging, constipation, poor sleep, “zoning out” resulting in good and bad days, it can help you understand why the child is behaving the way they are, especially if they are non-verbal. I encourage teachers and professionals to read Identifying Medical Co-Morbidities in ASD. A Guide for Healthcare Professionals and Help Flags in ASD, to help raise awareness of underlying issues that may be contributing to difficult behavior. Often it should NOT be a discussion about putting a child on medication, rather looking for underlying CAUSES for these behaviours.

It is interesting to note that there are more teachers that I speak to, that are in full agreement that diet makes such a big difference to children’s behaviour, than parents! There was a speech therapist also that said that they have noticed that children who are on modified diets are doing much better in therapy than children who are not. The clinic at which she works now recommends to all parents to look more seriously at their child’s diet. This is very encouraging.

Parents and Carers

I always look forward to talking to parents. I was in their shoes many years ago. These days with the benefit of hindsight and looking at the research into ASD for over 20 years, there is a clear message that I want to give to parents. Children have underlying medical and nutritional issues, that can be effectively treated. The research is clearly telling us this. Mainstream medicine is clearly ignoring this!

Some basic questions I pose to parents include:

  • Good and dad days – what is happening on good days that is not happening on bad days that is affecting your child’s behaviour?
  • Pain – how do you know your child is in pain?
  • Bowel issues – is there frequent constipation/ diarrhoea?
  • Diet – have you noticed a change in you child’s behaviour after eating food? Especially processed foods high in colours and preservatives?
  • Poor muscle tone – does your child have poor co-ordination (“clumsy”), drooling, speech delay, poor hand writing? Has anyone bothered to investigate further for mitochondrial dysfunction?
  • Zoning out – absence seizures?
  • Blood work – has your paediatrician done a comprehensive pathology work up of your child? Often paediatrician’s or GP’s tell parents the results are normal. I often offer to review a child’s test results. More than three quarters of the test results sent to me by parents, that I have reviewed, are NOT normal!
  • Supplements – what type of supplement are you giving? Many parents have children on over the counter supplements that are of poor quality, may not be appropriate for their child and simply a waste of money.

Good and Bad Days

Some parents say “It’s not so much good and bad days. They are all bad, but some days are not as bad as others!” OK so if we think about this logically, if we can figure out what is contributing to the good days that is not happening on the bad days, wouldn’t that be a good start? Are there issues with:

  • Sleep – poor sleep as compared to being able to fall asleep and stay asleep. Read more about Sleep Problems in ASD
  • Diet – does their behaviour change with food? More about this later. 

Pain

This is a big one. How do you know when your child is in pain? Change in behaviour, more irritable or emotional? OK, then where is that pain? This is often where parents draw a blank. Also some children have a very high pain threshold. Therefore, parents are unaware when their child may have a serious infection, broken limb, burnt themselves, or may have any other number of underlying medical issues. There are reports of non-verbal children dying of life threatening conditions, like a ruptured appendix, or adults dying of a heart attack.

One thing we do know is that some children do have an issue with the ability to digest the protein gluten or casein, or both. The result of this inability to properly digest gluten and or casein is the release of incompletely digested protein peptide fragments, gliadomorphins (from gluten) and caseomorphins (from casein) into the blood stream. These peptides have an opioid effect in the brain, hence the very high pain threshold we observe in children. Abnormalities in certain brain neurotransmitters can also affect the ability to feel pain.

Bowel Issues

There is a very high incidence of gastrointestinal issues in children with disabilities. ASD children seem to have the highest incidence of gastrointestinal complaints, with some studies reporting that up to 70% of children have some underlying abdominal issue. I have already covered bowel issues previously, see Gastrointestinal Issues in ASD – An Overview, Gastrointestinal ASD Research Summary, and Why Healing the Gut in ASD Children Must be a Priority?

The USA, Canada and UK, have adopted paediatric guidelines that recommend every child diagnosed with ASD should have a thorough gastrointestinal evaluation. No such recommendations have been adopted in Australia!

Diet

Diet is a topic that refuses to go away. Despite the best efforts of the medical community to discredit the benefit of diet, parents continue to hear of gluten and dairy free diets benefiting children.

Someone once said, “It is easier to convince a person to change their religion than to change their diet.” This is so true. Once you talk dietary modification to parents, they look for the first opportunity to run away. However, asking if their children have good and bad days, and especially if their behaviour seems to be worse after food, that is a different discussion. Imagine if we could have more good than bad days? Would that make life easier? What if we could work that out within a week? Interested?

Now most parents are actually listening and interested. I then go on to explain that salicylates in their child’s diet may be a problem. Minimising salicylates in their child’s diet for a week, then challenging them after this period with high salicylate foods, will in most cases give you the answer. Removal of salicylates results in a calmer child, improved sleep and may improve eczema. Reintroducing high salicylate foods, and all the old symptoms return. It’s on the list of possibilities – either cross it off, or acknowledge that there is a problem. One week – done!

Would you as a parent be motivated to minimise salicylates for your child? I certainly was with my son. I certainly preferred him to be compliant and focussed, rather than running around high as a kite! A few parents took up my offer to send them details on how to do the salicylate elimination and challenge for their child. Some have responded on how well their child is doing when salicylates were minimised.

Now maybe we can have that discussion about what else we need to change in their diet to expand their range of foods and tailor a diet that nutritionally meets their needs. There is more on dietary intervention that is worth reading in the article Why Has Autism Research Been Failing ASD Children & Parents. 

Poor Muscle Tone

When discussing poor muscle tone with parents the topic of mitochondrial dysfunction is raised. Parents have said “Yes the paediatrician has noted that he has low muscle tone and mentioned the word mitochondria, but nothing was investigated further”. Not an uncommon conversation I have with parents. Again no follow up by the paediatrician. Mitochondria are the “power plants” within the cells in our muscles. When they do not work properly, we see issues like poor fine and gross motor skills, drooling, constipation, tiredness, lack of stamina and issues with speech. We can test if there may be an issue with mitochondrial dysfunction through a urinary Organic Acid Test. Properly treated the children improve considerably.

Zoning Out

Does your child “zone out”? What do I mean by that? Some children seem to develop a glazed look or stare. They may or not be responsive and may have more pronounced motor symptoms such as twitching of the mouth, eye blinking or mild head bobbing. These are often termed absence seizures or atypical absence seizures. With absence seizures, the child is momentarily unconscious during the event so they don’t know what is happening and cannot recall anything. However, in the case of an atypical absence seizure they may be somewhat responsive to and aware of their surroundings. These events are short and may last anything from 5 to 30 seconds. Therefore, it is not immediately obvious that they are occurring. Given that 30% of ASD children are reported to have seizures and the incidence increases as they enter puberty, it would be logical if a child is suspected of having absence seizures, to have them referred for an EEG (electroencephalogram) scan to be done of their brain.

Even in children with Attention Deficit Disorder (ADD) the incidence of absence seizures is quite high. Absence seizures impair attention and executive function in children. Often being subclinical, children are not tested and put on stimulant medication that is clearly inappropriate for their condition.

That “spaced out” look some children have may also be due to the opioid peptides from gluten and casein. Parents sometimes describe their children as “the lights are on but nobody is home”. Going on a gluten and dairy free diet, the parents report how “switch on” they become.

Conventional Testing

Has your child’s doctor done any blood tests to assess for some basic nutritional and medical issues? Even if the results are “normal” at the very least a baseline has been established for any subsequent tests they may be done in future. As a medical scientist, dealing with pathology results is what I did on a daily basis. So I love to discuss pathology test results with parents. One parent told me that their child, with a history of constipation, had blood work done by the paediatrician. The results came back with low iron and vitamin D. And the paediatricians’ recommendations? Just give him a laxative and more meat. Really! In the majority of cases when bloodwork has been done, parents are often told that all their child’s results are “normal”. When I offer to review, at no cost, their children’s pathology results, I see many abnormal results that go ignored.

Below are just some children’s pathology test results, that I have reviewed for parents recently, that were not followed up by medical professionals:

Pathology results that strongly suggest underlying parasites or allergies

Pathology results that strongly suggest underlying parasites or allergies

Vitamin D levels that are very low. Optimal vitamin D is now considered to be at least 100 nmol/L in the scientific literature.

Vitamin D levels

Heavy metal exposure to mercury. The doctor in this case didn’t know what to do with the result. So didn’t do anything about it!

Heavy metal exposure to mercury

The most common test that I recommend is an abdominal X-ray in children with a history of constipation. Here is an example of a result that came back after a doctor reluctantly ordered the test after strong insistence by the mother. To say that the doctor was surprised by the result, that this child had faecal material backed up throughout his bowel, would be an understatement. “There’s a weeks’ worth of faeces in there! You need to clean him out.”

Clinical Data

Another example of a mother that insisted her child have an EEG (electroencephalogram) scan done of her child’s brain to check for seizure activity. The result? This child was having epileptic discharges consistent with seizures in their brain. “Isn’t that lucky you insisted to get that scan done!” was the comment from the paediatric neurologist. Once started on antiepileptic medication his behaviour improved. Below are the results of his EEG scan.

EEG scan results

Parents should not be pushing for these tests to be done. Most tests are reluctantly ordered by the medical profession. Understandably, they don’t like being told what they should be doing. Just because a child with a disability has a diagnosis they should not be ignored. They deserve to have a comprehensive medical and metabolic evaluation. If you do not test you will never know, and they will not improve.

Supplements

Many parents that I speak to have their children on some sort of supplement. Often a multivitamin, fish oil or probiotic. Mainly due to their child’s restricted eating preferences. Few parents have any idea as to what their child may actually be deficient in. None had a dietary assessment by a nutritionist or any testing done to see which specific nutrients their child may be deficient in. Parents were most frequently giving supplements in the form of “gummy bears” to their children.

I find it sad that so much money is spent on supplements of questionable quality, containing ingredients that that basically should be in the confectionary aisle in the supermarket. Worse still, they may contain ingredients to which children may react adversely to. Over the counter supplements are not rigorously tested. The few studies that have been done on these supplements shows how poor the quality of these supplements is. Some multivitamin supplements have been shown to contain significant amounts of lead, and the ingredients listed on the bottle label may not actually be in the product. This is also for mineral supplements, herbal supplements, probiotics and fish oils.

Next time you consider buying a retail supplement, it may pay you to read the following reviews of the quality of supplements, Supplements – Buyer Beware and Supplements – The Plot Thickens. If you are going to buy a supplement for your child, then make sure that it is the best quality and safest product you can get. Look at supplements that have research to show benefit. Read my article Quack Therapies For Curing Autism, that looks at the benefit of a number of these supplements.

Keeping an eye on the future

Interestingly, with all the information sheets that I had on my table at the autism expo’s, the one that was least popular was the one titled “Autistic, Lonely, Unemployed and Ignored”. Yes, the title doesn’t inspire any parent to pick it up and read it. However, I do put it out there, because parents do need to look to the future and what that future holds for their child.

ASD children typically do worse than most other children with disabilities. Therefore, the more we can do to help them when they are young, can only help to achieve a better outcome for them in the future. This is such a logical way to help any child with a disability. Identify and treat their underlying medical issues, give their bodies what they are not getting nutritionally, or not getting enough of, and you are bound to get a better outcome for your child.

Be one of those proactive parents:

  • push to have your child properly assessed and tested. Get a copy of their test results and get a second opinion if necessary
  • you know your child best, as a mother you know intuitively that something is not right with your child
  • if one doctor will not listen to your concerns, seek out one that will
  • monitor your child’s bowel motions, sleep, etc. and see how it affects their behaviour
  • do seriously consider seeing someone that is experienced with assessing your child’s diet for food intolerances as well as being able to maintain their nutritional needs
  • if you are going to buy a supplement for your child, then get proper advice on which is the best quality and purest supplement you can get

As always, I am readily available to give advice to parents. I am only a phone call or email away. Take advantage of it!