>Bathrooms, Big School and Uniforms….

Every little milestone my girls achieve is another celebration in my home. Big or small, whether it was at age-appropriate developmental milestone or if it came 1.5 years later. Based on many accounts of parents with either neuro-typical or children on the Autism spectrum, their kids were toilet trained (fully or partially or only for daytime) around the age of 2.5 – 3 years old. This turned out to be a struggle for us.

Maya developed typically eversince she was born, hit every developmental milestone on time. She was crawling, walking, babbling and talking at the appropriate age. Apart from being cranky, fussy, poor feeder, poor sleeper and prone to epic tantrums, she developed age-appropriate skill sets up until the age of 1.5 years old. This was when she received her last and final vaccination – the Meningococcal C, a requirement of the New South Wales Australia Health authority. She had a combined vaccination schedule based on both Australia and Malaysia’s health requirement. This was also during the month that her younger sister Yasmin was born in March 2007. Very soon after that, we also got Maya started on drinking fresh cow’s milk.

For the next 6 months, the regression was not very apparent to us. Mostly due to the fact that we were preoccupied with our 2nd daughter. However, by early 2008 I started to notice that Maya did not learn any new skills, even though she had a large vocabulary of words, she is not progressing to actually communicating with us. She continued to communicate with us through pulling our hands or most commonly, by throwing tantrums. She did not label anymore words, she spoke less and less. Though she would talk and sing a lot when she woke up at 2am. Neither did she seek out our company. A friend actually admired me, saying that it’s so great that Maya is quite happy to play by herself, that she wasn’t clingy to me nor did she require me to entertain her all day long. For 1 second, I actually thought yes, I’m lucky. I have time to concentrate on my 2nd daughter without feeling guilty of neglecting Maya. However, deep down I yearned for her to call me Mummy. She was perfectly content to spend all day in her room, playing quietly by herself. I wasn’t quite sure what she did, but she seemed contented. There were many more signs of her regression, loss of previously acquired skills as well as the lack of new development.
After the official Autism diagnosis at age 2y8m and getting on with the work of therapy and biomedical intervention, we tried to introduce potty training when she was nearly 3 years old. No effect whatsoever. Not wanting to push it, we tried again when she was 3.5 years old. Again, no luck. We enlisted the help of our hardworking ABA team, taking her to the bathroom every hour. After 6 months of toilet training with ABA methods, when she was 4 years old in October 2009, Maya finally started peeing on the potty regularly. However, at home she would insist on using the small potty, rather than use the regular toilet. This coincided when we started her on TMG. Coincidentally, she was able to tolerate clothes better too and actually allowed us to put on nightgowns for bed. The fights we used to have trying to get her dressed was long gone.
She also insisted on wearing a nappy when doing a bowel movement. She would never poo poo on the potty or the toilet. We tried ABA techniques and used social stories. Usually, Maya responded very well with social stories and we managed to resolve quite a few issues using them. However, she was pretty verbal and had great cognitive function by then and always insisted that she can only poo poo in a nappy. She would crouch half-standing usually in a corner of the living room and strain.
By then, we had resolved a lot of her gut issues. She no longer had constipation or incontinence and we were able to keep her recurrent yeast overgrowth under control. However, 3 weeks ago she started having constipation again. She would have a bowel movement every 3 days and it was either very hard and pebbly or very soft and little. This affected her behavior and appetite to a small degree. Our usual methods of relieving it didn’t seem to work. Our DAN doctor surmised that it was another yeast infection, as yeast overgrowth can cause constipation. So we put her on a course of my favorite anti-fungal Diflucan. As most of you already know, yeast overgrowth tend to recur time and time again in our children. Historically, Maya has responded very well on Diflucan. She was calm, focused and ‘sparkling’. There’s no other word to describe it, Maya was like the real Maya that I knew existed underneath the weight of Autism.
We also did another urine Organic Acid Test by Metametrics Lab. The previous OATs was done 9 months ago, since then we have done much to address Maya’s biochemistry issues. We needed another look at her current position and see if there are other things we can fine-tune. The recent OATs confirmed high presence of yeast metabolites. Once we put Maya on Diflucan, her bowel movements became regular and the texture is normal. There was some slight die-off however it was a small price to pay for the improvements we saw later.
On the 3rd day she was on Diflucan, for the first time ever Maya allowed us to seat her on the normal toilet to do a poo poo. This was a huge achievement for Maya, we were so excited that my husband took a video of Maya sitting on the toilet doing her first poo. This continued consistently every day for the next few days.
Maya was on a 2 week course of Diflucan, however I discovered we did not have enough capsules to last us for 14 days. In the midst of communicating with our DAN doctor and trying to get more stock from Malaysian pharmacies, Maya missed 2 days of the anti-fungal. On the 1st day without Diflucan, Maya refused to poo on the toilet and demanded a nappy instead. After a consistent week of doing poos in the bathroom, I was disappointed. However we realized that by missing the anti-fungal, Maya had difficulty doing a bowel movement while sitting down. She needed to stand half-way crouched over, thus the need for nappies. On the 2nd day she missed the Diflucan, for the first time in 2 months Maya did not inform us that she needed to go to the bathroom. She had wet her pants.
Stopping an anti-fungal before the course is fully completed is akin to not completing an antibiotic course. It may cause another flare-up of yeast overgrowth. We managed to obtain more Diflucan, Maya has been back on it for 3 days now. Yesterday, she was back to pooing on the toilet again. We have been extremely lucky that when doing anti-fungal protocol or any other treatment, any regression or die-off reactions has been somewhat manageable compared to some other children. Even if there was major regression, it was always temporary and not permanent. She always got back to her previous level and managed to pick up any skills that she had lost. Her language and cognitive function is still amazing, her comprehension and compliance has consistently improved.
We are transitioning Maya to attend a mainstream kindergarten very soon. Recently I spoke to Maya and told her that very soon she will attend a new school. A big school called C******* School, with new teachers and new friends to play with. Also, that she needs to wear a uniform. Maya remembered all this and she told my mum all about it the next day when they came to visit. My parents had sent Maya off to her regular ABA school and Maya kept telling them that she needs to go to her new school C******* School and wear a uniform. I haven’t told anyone of our plans yet, so my mum was not aware of this. My mum came back to me and asked if everythi
ng that Maya said was correct. We were amazed at her memory and her comprehension, all this after only telling Maya about it once.
As you know, Maya has always had very strong preferences with clothing, preferring pretty pink dresses with spaghetti straps. So getting her used to the idea of a uniform was important to me. I told her “You must wear a uniform at C******* School. But when you go to Stepping Stones, you can wear whatever you want” Maya thought about it for a moment and declared “I wear a uniform to C******* School, but I can wear a dress to Stepping Stones”. My clever little girl worked it out all by herself! I wonder how she will do with the new uniform, it’s got short sleeves and has a blue checkered print…..

>A TEST of Patience

As Autism parents, we are subjected to numerous tests and evaluations from doctors, child psychiatrists and clinical psychologists. And these tests are just to confirm that yes, your child has Autism. What next? Therapy and more therapy.

Now that we know there are biomedical interventions that can help our children recover and we’ve done the basic steps that I’ve listed in the previous blog, and you’ve done your research, you find out there are MORE tests to be done, sigh……. So, what are these tests we need to do? Where can we do them? How much does it cost?
1. IgG Food Allergy – This is to test for delayed immune response and for food intolerances. Unlike the IgE, which is the most commonly used food allergy testing, IgE tests for immediate immune response such as common allergic reactions to peanuts and seafood. Going back to IgG, this is the test where you’ll discover intolerances to gluten & casein and others too.
In Malaysia, to do the IgG test requires drawing of blood up to 1 – 2 liters sometimes. It’s extremely traumatic for any parent and child to go through this, it took 6 people including me to hold Maya down when we did this previously. (Ironically, those tests were inconclusive and it was a complete waste of time, money and unnecessary trauma) Dr Erwin Kay has specially ordered test kits from a trusted lab (www.usbiotekcom) that only require a bloodspot – where the doctor only pricks the end of the little finger, and rubs the drops of blood onto a test pad. Maya barely even noticed it.
We did the IgG Asian Food Panel for 96 food items by US Biotek. Cost – SGD$460.00 / RM1,110.00. If you choose to do it in Malaysia, most hospitals and labs would charge RM50-70 per food item. You’d usually have to test >30 food items. A parent told me she was quoted RM300 for ONE food item! These cost do not include the consultation, lab services and other items for such procedures.
2. Comprehensive Stool Analysis – This is to test for bacteria, good and bad flora levels, fungal and yeast overgrowth, immunology, digestion, for any inflammation and fatty acids levels. You MAY be able to persuade your local doctor to do a stool test for fungal and yeast, though it would not give you a comprehensive look at your child’s digestive system and other metabolic markers. Our test from Doctor’s Data (www.doctorsdata.com). Cost – SGD$540 / RM1,300.00
3. Urine Organic Acid Test – This is to test for nutrient levels, vitamin markers, cell regulation, detoxification markers and others. We did the testing by Metametrics (www.metametrics.com) and we found Maya had amino acid insufficiencies, oxidative damage, lethargy, impaired detoxification, yeast infection and others. Cost – SGD$850.00 / RM2,060.00
4. Heavy Metals testing – you either do hair analysis or a DMSA challenge test (urine). This is to test for mercury, lead, aluminum and other toxic heavy metals. We did a hair test with Dr Sundardas in Singapore (www.naturaltherapies.com) by the lab Trace Elements, Inc. Cost – RM425.00.
Where can we do these in Malaysia? Through reports from other parents and my own experiences we find that when we go to the GP or pediatrician, (our collective experience with numerous doctors in numerous hospitals) we encounter a lot of negative responses such as `you’re over-concerned’, “these are unnecessary” or “you’re over-testing”. We parents know that our children have health issues and in order to get the appropriate treatments, we need data from these tests. I would recommend to go directly to a DAN! doctor either in Singapore or Indonesia. Otherwise, expect a battle of words with your doctor and expect to go home totally infuriated & frustrated.
While waiting to see a pediatrician recently, I noticed that it takes less than 10 minutes for a doctor to diagnose a patient and send them home with antibiotics, whilst it took Paul and I a full 1 hour to beg, plead and convince the doctor to do these tests. The `wait and see’ approach should not be applied to any child who’s suffering from chronic constipation, diarrhea, chronically ill from fever, colds and flu, or exhibiting self-injurious behaviour such as head banging, because we the parents know that our kids are in pain, all the time.
These are the basic tests that you usually do, depending on your budget, talk to the doctor whether you can do this all at once or if you wish to stagger it. You may have to do more testings, but that would probably come at least 1 year later, after you’ve addressed all the issues found from the first tests. Good luck & share your experiences with me and others. There’s a lot of rainbows in the sky, if only we keep looking for it.