Aspergers and Pandas: The First Three Years of Our Holistic Health Journey

Autism Clues

I had everything ready: my detailed birth plan, the Bradley Method book, my calming piano hymns music, Clary Sage and Lavender oils, ice packs, heat rags, birthing ball, honey straws, Vitamin K drops, and a doula who would encapsulate my placenta.  Much to my doctor’s frustration, I was determined to utilize a holistic health approach to giving birth. After a very smooth, natural labor and delivery, the nurse handed me my newborn baby girl.

I had looked forward to that moment of first getting to meet her – cuddling close, looking at her tiny features, counting her little fingers and toes. That moment finally arrived! But Emma would recoil her hands abruptly at the touch of my fingers. Her face would grimace in agitation – almost as if she was in pain –  when anyone touched her, especially her hands and feet. I knew right away that something was amiss. By the end of the day, I had noticed a stork bite on her neck and a sacral dimple – signs to look out for with the MTHFR gene mutation that ran through my family.

Soon, we noticed that she would become inconsolable if more than three separate people held her. Or if a store was too busy, or the tv was too loud. Or if we were gone from home more than a couple of hours. Or when she was placed in the car seat. She was constantly alert and on edge, stiff as a board when held. All of these things I noted and tucked away for further observation and research. When I would bring them up to the pediatrician or in conversation socially, I was told not to worry. She simply was a sensitive baby. Nothing was wrong.

But I knew that she was different in a special way – because I am different too.

Emma didn’t nurse well and refused to take a bottle. It was a rough first few months. Thankfully some Mommy Friends in a private Facebook group told me to look into tongue and lip ties, then told me about their own experiences. Many of whom warned me about how frightfully uneducated so many are in the medical field about the impact ties have on breastfeeding.

She began having meltdowns. It took a while to learn what was a meltdown and what was a temper tantrum – there ARE differences. But occasionally a temper tantrum can go on so long that she works herself into a meltdown. During meltdowns, she would stop making eye contact and it was as if she couldn’t hear or see me. During meltdowns, she could not be pacified. We learned that we had to take her away from the stimulus, preferably to a dark quiet room and just hold her and rock. Emma never would take a paci and she didn’t want toys or a Lovey of any kind.

Sleep Deprivation

After going through four doctors, three lactation consultants, and a local Le Leche League leader (say that three times fast!) – I found a doctor who believed me and told me that my assessment of a Stage 3 lip tie and a posterior tongue tie were correct and were contributing to the difficult nursing experience. A quick lasering of the ties and we were on our way to a more successful and pain-free nursing relationship.

By four months, I knew that she had Aspergers (like I do). Her sensitivity to various stimuli was escalating at a rapid pace. Then, she stopped sleeping. Almost completely. I knew that the Four Month Sleep Regression was supposed to be a hard one – but after a month she wasn’t back to a semblance of a routine at all. Emma was waking up every 15 minutes and not going back to sleep unless she nursed herself to sleep. Once a week she would sleep for 45-60 minutes before waking. My husband and I tried everything. Literally everything. Her pediatrician was baffled but did send us to a specialist for the autism diagnosis. We had an eight-month weight until our first appointment.

The meltdowns increased, her sensitivity increased. I was not able to go to the bathroom or to grab a cup of water without her going into a meltdown because I wasn’t holding her. Emma would panic if she didn’t feel completely safe and secure. It wasn’t her just demanding attention – she would lose the ability function. If anything was different or new – she felt insecure.

Meanwhile, Emma continued to wake up every 15 minutes, just like clockwork. Regardless of what we tried to do – regardless of how consistent we were with habits or what supplements we tried or how her environment was. There is a reason sleep deprivation is used as a method of torture – I legitimately thought I was going to die from sleep deprivation. My husband suggested we try co-sleeping so I at least wouldn’t have to walk to the next room every 15 minutes to nurse.

Alternative Health Care and an Autism Diagnosis

Finally, after seven months of no one sleeping, we went to a friend of mine for help (why we didn’t go earlier I have no idea!) She has a health food store and uses Autosomal Reflexive Testing (which is a variation of Applied Kinesiology – more on this in an upcoming article!) Emma was put on some Homeopathy supplements. She needed Hylands Nerve Tablets, Ignatia Amara, and Ferem Phosphates to eliminate a virus she was battling. I gave her the first dose immediately. She slept the whole thirty-minute drive home – which had never happened before. Emma would scream from the moment she was placed in a car seat to the moment we took her out. After three days she was sleeping for three hours before waking. After a week she was sleeping for five hours before waking and would go right back to sleep.

With the exception of one episode of Strep Throat, Emma was very healthy and didn’t get sick apart from seasonal allergies. Granted, she was quite low on the growth charts – but we were seeing consistent growth. (Little did we know the damage that Strep bacteria did. She was so young we couldn’t see a massive amount of difference before and after the illness in her behavior.)

Being proponents of Self Led Weaning (she weaned at 14 months) and Delaying Solids, it was around 8 months of age when we would allow Emma to taste new foods. But she showed absolutely no interest to anything other than the baby melts. By 10 months she finally wanted to try a food – a lemon of all things. After that, she didn’t want to try any foods at all until she was just shy of a year old. That’s when her Nana convinced her to eat – a Cheese Puff. My heart sank, of course, the first actual food she likes would be something terribly unhealthy…

Emma was considered a Non-Verbal. That is, she spoke 5 words with any consistency. She used Jargon a lot – gibberish sounds in lieu of words. She could say: Mama, Daddy, Biscuit (our cat), Nana (my mom), and No. She could sign for “more” and displayed that she fully understood what we told her. Eventually, in her therapies she was tested – at 24 months she had the cognition of a 4-year-old. Her “output” and her social skills were delayed considerably. She would randomly say words – and say them correctly and display that she understood what they meant and how to use them in context, like the word Octagon. She could point to all the correct shapes, colors, numbers, letters, and over 50 animals. She would make animal noises – and knew appropriate noises for a great many animals.

Finally, her appointment with the child psychologist arrived – and to utter dismay it would be a series of visits over the next few months with various nurses, nurse practitioners and finally a ten minute visit with the actual doctor – and we received her diagnosis of Autism Spectrum, and what would have been called Aspergers (oh the frustrating changes in the DSM IV!) This opened the door to various therapies such as occupational therapy, speech therapy, and food therapy.

Her meltdowns were intense. They could last HOURS. She would not be able to hear or see us, and she would not feel any pain. We would do everything that we could to keep her from hurting herself or others – and she would try her best to do just that. Emma would bang her head on surfaces, throw herself down – or worse off things. She would scratch her eyes and pull her face – or do the same to others. She would scream and thrash about like a wild animal caught in a cage. It was terrifying to behold – and even more so terrifying to realize that there was nothing that I could do to help her. She was hurting. She was afraid.

Being overstimulated sometimes feels like thousands of fingernails scratching at you – at every fiber of your entire being. All your senses are affected – sound becomes deafening and incomprehendible. Light becomes too bright while simultaneously your vision becomes blurred and tunneled. For a few brief moments its barely tolerable, and then when your body can’t handle any more – your systems crash into a meltdown.

A meltdown would make Emma “teeter-totter” to where it was as if her emotions were fragile and sitting on the edge of a blade. It would take the slightest bump to knock them off in either direction – either for calmness or for another meltdown. A major meltdown could send her nerves into such a state of agitation that she was affected by it for up to five weeks later – the entire five weeks be a series of meltdown chains. During a meltdown recovery period, we could do nothing except sit and rock, or sit and nurse, or sleep.

We wanted to partner up with professionals who viewed Emma the way we did – as a capable, brilliant child who has a great many strengths. We wanted to partner up with people who didn’t view Autism as a disease but as a unique way of processing information. Aspergers does indeed tend to have a great many pitfalls – but a great many blessings too. We just need to help Emma to learn how to navigate her sensory awareness and sensitivity, and how to understand that her emotions and thoughts do not necessarily convey what is true and real – though emotions are a great indicator of the heart.

After researching and trying out various therapies – we found an Occupational Therapist who eschewed ABA therapy (to our relief) and conducted Floor Time Play Therapy. She was such a great fit for our family – and so supportive of our passion for natural health care. She saw Emma as the brilliant child we saw too.

She displayed a large number of autism signs during the first year and a half. She would hand flap, squeeze her hands and shake all over when excited, and didn’t ever play with toys. Emma loved to organize things – she would spend HOURS taking the clothes out of her drawers and arranging them into piles. She loved to draw – but only a single shape – a Circle with a squiggly tail. If she was given grid paper, she would cover each square with this shape. She could sit and draw this shape for hours with fierce attention, the very action consumed her entire being.

Pandas and What We Have Found

Over a series of months, we noticed that there was a correlation between Emma’s very difficult weeks and her bowel. Research led me to be concerned about Pandas, but I had a hard time finding enough information about a child so young to be sure. I knew that we had a leaky gut issue, yeast overgrowth in the gut and that there was such a direct correlation between gut health and Autism.

But with her severe food sensory issues – I had no idea how to overcome her sensory issues. At this point, Emma only ate 12 things: Fruit melts, Goldfish, Club Crackers, Cheese Puffs, Fritos, Grapes, Blueberries, Apples, Banana, Strawberry, Chickfila Chicken Nuggets, and Wendy’s Chicken Nuggets. Regardless of our tactics to introduce healthy foods – even going so far as to refusing the yeast feeding GMO laden processed crackers and only offering healthy versions… but Emma could recognize even a change in Brand name by the taste. And she, unlike most children, will not give in and eat anything when hungry enough. We have tried. Her food therapist even noted that in her entire career she had only seen a COUPLE of other children who had the stubbornness to where they would rather starve themselves than eat something out of their comfort level.

As is typical with Pandas, the bowel will take on a chalky appearance. It becomes watery and very clay like in color. The odor is fouler than any “normal” diaper previously – it smells like a rotting carcass. During this attack, these watery diapers come out in a discharge so profuse and in such large quantity that no diaper is able to contain it all. Cloth or disposable – regardless of the brand. During these bouts, she becomes extremely violent and full of rage over the slightest sensory stimulus.

It was just after one of these episodes that Emma got a rather severe UTI. She refused to drink anything. I used a medicine syringe and would syringe her with water and Gatorade every 10 minutes. My Mom took her through the night and continued. We were trying to keep her from having to go to the hospital. But the next morning her diaper count was still terribly low and she was becoming lethargic. The hospital had to give her a catheter – and a dose of anxiety medicine because the stimulus was causing a massive meltdown. Twice in two months, we had this happen. Once, the hospital messed up and gave her a double dose of anxiety medicine – and had to watch her for a while to make sure she continued to breathe. Each time she was more and more traumatized by the catheter. It was so emotionally damaging that she would have meltdowns if we tried to change her diaper.

We decided the psychologist who had given the diagnosis was not a good fit for our family, so thanks to our wonderful occupational therapist we found a psychological counselor who has a heart for people with autism grow and flourish. He listened to our story and said that he is quite certain Emma had Pandas – especially with the way her violence correlated with the diapers. He was also very knowledgeable about MTHFR gene mutation, Pyroleuria, PTSD, and Porphyria – and other numerous issues that are in our family. What a tremendous relief it was to talk to a medical professional who understood these issues!  We discussed our options, and he was sympathetic to our desire to pursue holistic health care.

It was around this time that I had finished my Master Herbalist degree and was beginning my internship at the health food stores on the weekends with training in Autosomal Reflexive Therapy.

Therapy went well for the most part – food therapy was a bit disappointing, as Emma did not acquire many new foods. She did gain the confidence to try new foods occasionally (though not consistently) and she learned that she likes gummy bears and carrots. Occupational therapy is still going – and she is having a lot of fun playing games where she learns about taking turns, experiencing new textures, change in direction of play etc.  Speech therapy was helpful – having a new friend to interact with and play speech games with, a friend who wasn’t a parent or grandparent also seemed to make the game more appealing. Around the time she graduated, Emma had begun to use around 100 words consistently.

When her little sister, Faith, became big enough to play – this was transformational in Emma’s life. Faith taught Emma how to pretend and play with toys. Now, getting to be the “big sister” and help baby Faith has given her tremendous confidence and has encouraged her to push beyond her previous boundaries.

Over the last few months, I have been testing her consistently and finding out what nutritionally her body is needing. We have had such a remarkable turnaround in a short amount of time! Her vocabulary has blossomed – and so has her sentence structure. While we do still need to be mindful of what can overstimulate – her tolerance level has dramatically increased, as has her bravery in insecure situations.

She also has blossomed in her social skills – now she tries talking with other children, instead of completely oblivious to any game structure or social construct. She happily chatters with adults too and loves to create stories. She still is unsure of how to interact with children her own age, but she loves to watch them and in very confident situations will attempt to join in playing with them.

Unfortunately, the trauma from being catheterized has had lasting effects. She still panics during diaper changes – though considerably calmer than before. If we calmly talk to her about what is happening she handles it much better – but it is still terrifying for her. This has caused her to refuse to attempt any potty training. Which is frustrating – but we are patiently encouraging her growth and confidence. Maybe potty training Faith first will be helpful…

One other area we are still struggling in is in sleeping. She sleeps well – but she still relies on me to go to sleep and to stay in bed. We are in the process of transferring Faith to a big bed – after we get her used to sleeping in her own bed we will then be able to work more on helping Emma to learn. We are hoping that she will want to once she sees that Faith is doing it. And I have to remain in bed with her – if she wakes and can’t find me, she will panic. Panicking can QUICKLY turn into a meltdown.

She has come such a long way! But there is still such a long way to go – we still have to navigate our life based around her sensory needs, be extra cautious about how many activities or outings we do in a day, and with what could potentially trigger a meltdown. Meltdowns no longer affect us for many weeks at a time – now it is just hours at their most severe. We have not had any return of the massive and foul diaper episodes. When I notice her bowl SLIGHTLy become paler, I test her and find she is requiring an increase in dosing. Her behavior may be SLIGHTLY more agitated – but she IS HEALING. We praise God for His blessings in this, and for His provision of nutrients and Homeopathies to help her strengths shine. I am so excited to see how she progresses over the next few months.

I will elaborate on all the herbal supplements, vitamins, and homeopathic remedies I am giving her (in an upcoming article) 

I write this so that if you have a loved one who is on the spectrum or has Pandas to know that you are not alone in your experiences and that there is Hope. God is completely Sovereign over His Creation – even in Autism. There is nothing that happens that is outside the realm of His control, and He will allow only that which is for our sanctification and His Glory. We can rest in that!

 

Lamentations 3: 22-23 “The LORD’S loving-kindnesses indeed never cease, For His compassions never fail. They are new every morning; Great is Your faithfulness.”

 

 

 

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