Tuesday, October 29, 2013

Gluten, Casien free Potato Leek Soup

Seriously one of my favorite soups on a cool, fall day.  

Since my family cannot have any dairy, gluten, eggs, soy or nuts, I developed this awesome, creamy recipe that somewhat tastes like potato skins from my bar food days.  (Insert wink here.)  

Potato Leek Soup

About 3-4 large russet potatoes – peeled and cubed
2 large carrots – peeled & chopped
1 celery rib - sliced
2 large leeks – The white part halved & chopped into half moons (swish in cold water to get all the grit out)
Pancetta (4-5 oz cubed) or bacon (about 3-4 slices)
One quart of chicken stock – low sodium
S & P
½ - 1 tsp of crushed red pepper – optional…if you like spicy.

In large soup pot, cook pancetta until browned and crispy.  Remove with a slotted spoon and keep on a paper towel.

Add celery & carrots to fat in the pot and cook about 5 minutes to soften the veggies. Add leeks and cook a few more minutes.

Add about 1-2 tsp of dried thyme or a few springs of fresh thyme and S & P to taste

 Add potatoes and stock to the pot.  Bring to a boil, lower heat & simmer about 20 minutes until potatoes are tender.

Put about ½ of soup mixture in the blender and blend until smooth. (Make sure to remove the top hole in the blender so heat can escape.) Add smooth mixture back to pot to create a creamy soup with some chunks.

Add crispy pancetta and stir.  Serve warm.


Saturday, September 28, 2013

Missing Poppa Jay

My husband & I were the first car in the funeral procession from the funeral home to the gravesite.  The streets paving the way were lined with orange tiger lilies.  It was a beautiful sight to behold.  As we drove to the cemetery I was filled with emotion thinking about Jay and everything he meant to us.  He was my father-in-law and a beloved member of the family.  The memories rushed through my head…..

He made a point to come and spend months at a time close to us, even though he lived hundreds of miles away.  Because of this commitment to being with his grandchildren, they grew to adore him.  They all came running to the front door yelling “Poppa Jay!!  Poppa Jay is here!” when he arrived just after dinnertime each night.

He noticed and complimented me if he liked an outfit or my hair that day.   
He told me that I had a beautiful singing voice.  When I scoffed, he made sure that I listened to him by repeating himself sincerely.  And he laughed a lot.  He had a deep chuckle that will ring in my ears for a long time to come.  Thankfully, my husband inherited those fabulous qualities of being observant and very easygoing.

He complimented our family.  He often told Chris & I that we are great parents, which is encouraging to hear when you are raising kids with special needs and medical problems.  He told us that he loved the dynamic of our family.  He loved to sit and watch us interact.  He was a fan of “the process” as he called it.

He loved my cooking…especially my soups and stews.  He never turned down a meal I offered him and he raved about each meal for days afterwards.  I made him a fruit smoothie when he had a nosebleed that didn’t want to stop bleeding, which made it difficult for him to eat.  He was so grateful for that one gesture that he thanked me often. 

He lovingly referred to me as “Dr. Steffens” because I have spent the last ten years bringing my daughter back from autism.  And he would sit patiently and listen to me go on and on about Marley’s interventions.

He sent me a big bouquet of flowers every year on my birthday.  He always told me that he loved my birthday because it meant spring would be here soon and he appreciated the newness of the spring.

He adored my kids…his grandchildren. He read books to my oldest with autism while she hung on every word.   He would play board games with my middle daughter for hours on end.  He played catch with my little guy and laughed with pride as my toddler caught the ball.  He was there to cheer on my daughter at her soccer games.  He was there when my babies started to walk.  He got to see their first steps.  He filled his phone with pictures of them.  

I was his confidant.  I am not quite sure why he shared such personal feelings and life experiences with me, but I listened.  He didn’t seem to mind that I was always bustling busy….cooking, baking, folding laundry or mopping the floor while he was talking.  He just sat at my kitchen table and talked to me while I was working.  I often had a baby in one arm and was stirring a pot with another arm and just listening to the experiences of his life.     

He was a storyteller.  And he often would tell the same story over and over again.  Chris & I would glance at each other and smirk when he started to tell the same story for the umpteenth time because we knew it was just better to let him tell the story again than to interrupt.  He loved telling stories about his childhood, his parents, his siblings and his college years.

Because of his outgoing nature, he had a posse wherever he went.  He didn’t need to go somewhere with a friend.  He made them when he was there.  He was fascinated by people and learned something from every interaction.  He loved to tell me about the interesting people that he met while he was at his program at Duke.

And oh, was he sentimental!  He loved sappy movies.  The sappier the better. He would tell you….”wait, wait….I love this line….Wasn’t that the greatest?”  And oh my…he loved the movie, Moonstruck.  We used to laugh because he wanted to watch the credits so he could hear the music. 

There were tough times too.  I’ll never, ever forget the look on his face at his niece’s funeral.  He was overcome with grief, which was so out of character for him.  You could tell that he felt like his heart was going to break in two.  I also talked to him the day his best friend died of a sudden heart attack.  He could barely get the words out.

At the end, when he was very sick, I got the beautiful privilege of telling him how much I loved him.  He was most gracious telling me that I have been wonderful through all this and then he said "I love you too, kid."

He valued his family and friends far more than things.  He was not a perfect person.  But in my eyes, he was pretty awesome and his light will be missed.

Friday, September 6, 2013

Keep your eye on the Prize

Recovering a child with autism or sensory problems requires thick skin.  You will get angry, sad, overwhelmed.  But the trick is to keep your eye on the prize:  Recovery.

Don’t get derailed.  Don’t get angry.  Don’t wallow in self-pity too long because your child needs you.  Ask yourself one question…”Am I doing this based on emotion or because it will help my child?”  If your actions will not help your child…you need to stop and redirect.

There will be doctors that don’t believe you.  Don’t get mad.  It is not your job to educate them on what you believe.  All physicians are good at something.  Use their strengths.  Use several doctors.  Use a combination of therapists, nutritionists, mainstream & biomed doctors.  They all have something to offer, even if it is only the fact that you need to look elsewhere.

You will be tired and feel overwhelmed.  Ask for help.  People will say no (or yes and not follow through) but some will help you when you need it most.  And when your child is better, you can pay it forward. 

Others will judge you when your child misbehaves repeatedly.  Don’t be embarrassed and don’t get angry.  They simply don’t understand.  Until they have walked a day in your shoes…they won’t understand.  Let it go.  Let it go….

There will be roadblocks.  Services will be hard to come by.  Do what you have to do….apply for grants, pay out of pocket, do therapy at home, read, read, read….research, research, research.  Make it happen.  Don’t take no for an answer but be polite.  Always be polite.  As they say, you catch more flies with honey.

You will have to be tough.  There will be several blood draws where you have to hold your child down.  But labs are the only true way to know what is happening in your child’s body…so it is non-negotiable.  Treating the underlying medical problem is key.  And the child needs to heal from the inside out.  So put on that brave face….tell your screaming baby that it will be over soon and they will get a prize.  You will want to cry.  You will want to scream right along with them but you can’t.  You need to be strong.

You will have to find a way to feed your child who is desperately picky.  And you will have to avoid the foods that make them sick.   Just finding those triggers can be difficult.  It requires a lot of creativity, time and coaxing.  But the payoff is huge.   Keep your eye on the prize.

You will have to take risks.  You will have to take leaps of faith.  Sometimes it will pay off and sometimes it won’t.  If it doesn’t, recognize that fact and move on.  Don’t stay with a doctor or therapist out of obligation. Your only obligation is to your child’s recovery.

Lastly, people won’t believe you.  They will say that you didn’t witness your child interacting and speaking words and then lose them following vaccination, or antibiotics or a virus.  They will say that the vaccination did not cause your child’s seizures or GI problems.  It doesn’t matter. You know better.  You witnessed it.  Once your child is better, they will say that your child never had autism to begin with…or…it was never actually that bad.  It doesn’t matter.  You will know.  You will know what you have endured to get here.  And your baby will be improved.  Happier.  Healthier. 

That’s all that matters.

Tuesday, August 20, 2013

Success with Sustained Release Alpha-lipoic acid

Summer is fading away.  Next week, the kids go back to school.  This summer has been a whirlwind of adventures, both good and sad but I did use this summer to try out something that I have long wanted to do.

In June, I started Marley (my child with autism) on Sustained Release Alpha-lipoic acid with biotin.  As I suspect mitochondrial problems in my girl, I thought this would be a good fit because it is both a mitochondrial cocktail supplement and it naturally chelates mercury.  

Before starting SR ALA, Marley took the swim test at our local pool.  If she passed, she got to swim in the deep end without an adult present. Marley failed. She swam to the edge long before she was supposed to stop. However, my middle daughter passed.  It was a heart-breaking, bittersweet moment.  I was so proud of my younger daughter yet so sad for my oldest. 

Then I started Marley on SR ALA twice per day and she tried the swim test again the next week.  This time she passed.  No problems. 

Then the improved self-awareness started to set in….

A month later, I heard this from my daughter:
Marley: "I have autism."
Me: "Yes, you do."
Marley: "Sometimes I can't get my words right."
Me: "That's okay. You are trying hard and I know what you mean."
Marley: "Can you get rid of my Autism?"

Not much that will choke up a parent like a statement like that from your child.  Much less, your child who used to be non-verbal, disconnected and self-absorbed.  

Her increased self-awareness was becoming extremely noticeable.

Then Marley started her summer “camp” which was actually therapy disguised as camp.  One day after becoming frustrated because someone got something she didn’t, yet wanted, she said to her therapist, “I’m sorry.  Sometimes it just takes me longer to get it.”  Marley won their hearts instantly.  Her therapist made sure to corner me to tell me that seeing this kind of self-awareness in a child with autism is rare, even high-functioning autism…..and an extremely good sign.  “We can build on her feelings and emotions to make her more successful in social situations” she told me.

However, I began to notice that Marley became more edgy and cranky around mid-day (likely when the ALA was beginning to wear off) since I was dosing at 7am and 7pm.  So I experimented and added a third dose mid-day.  

After that third dose was added, her dread of the impending school year began to wear off.  She began to tell me that she believed everything was indeed going to be okay when school started.  I couldn’t believe it.  One additional dose mid-day and she was a new kid.  Positive and connected.  

She was doing daily work now to prepare for school and suddenly understood math word problems much better.  Division with remainders (which we had left a few months prior due to a lack of understanding) was now coming to her easily. 

She no longer begged for alone time to use her hand-held devices.  She played with her sister and brother more often and throughout the day.

And one more thing….her chronic fatigue has improved significantly.  I don’t see her yawning and stretching all day.  She no longer complains of how very tired she is and how she just wants to go home.  I can see how it has increased her ATP function.  

It has been a while since I hit a home run in the supplement department…and this is definitely a home run.  The SR ALA with biotin has also allowed my daughter to tolerate a B Complex supplement which she has never been able to do…ever.  

Before starting SR ALA, my daughter’s CBC came back with very elevated RBC, HGB and HCT.  Enough to cause me concern.  We ran her CBC three months later…after starting ALA and it came back perfect.  I have no idea if these two things are connected or if the first test run was an anomaly but I felt it was worth mentioning.

I have great hope for the new school year.  New teacher, new friends along with the old and a mainstream classroom full time.  Recovery….here we come!

*I want to say a few things about this supplement in case you are considering it for yourself or your child. 
1.  Please know that some people believe that it is safer to reduce the child’s toxic load before starting them on SR ALA.  We have done lots of detoxification over the years with a mix of therapies, so I felt my daughter was ready.
2.  Do not use ALA for at least 3 months if you have been exposed to mercury of any form (even a broken CFL bulb) and do not use at all if you have mercury amalgams in your mouth. 
3.  Please use the Sustained Release formula and use it with biotin for best absorption.
4.  ALA is first and foremost a mitochondrial supplement, however, it will chelate mercury so you need to drink lots of water and be sure the child is not constipated.  Keeping the GI system moving is absolutely imperative so the toxins are not reabsorbed into the body.  We use magnesium citrate on a daily basis to ensure things are moving along.
5.  Vitamin C can help the ALA recirculate so using a Vitamin C supplement is important, as are Vitamins E, Zinc and magnesium.

Wednesday, July 24, 2013

Negotiating Death with a child with Autism

Dealing with the death of a loved one is difficult and heart-wrenching.  No question.  Dealing with a child with autism who has just lost a loved one  - perhaps even harder. 

When my beloved father-in-law passed recently, it was a learning experience for all of us.  I had never lost anyone that very close to me and I had never had to teach children about death. 

My kids were very close to their grandfather and he had always made the effort to come and stay close to them for at least 4 months out of the year…every year since they were born….even though he lived far away.  When he arrived at the door, all three kids came running and shouting “Poppa Jay!!! Poppa Jay!! You are here!”  Then they proceeded to bombard him with the day’s news.  (I can assure you I don’t get that kind of greeting.)  He loved them dearly and cherished every moment with them.  And the feeling was mutual.

For a few months prior to his death, we had a feeling that it was coming so I read the kids books about death.  Books about what happens at a funeral.  Books about how people are sad after someone dies.  Books about how people cross over and you can no longer see them, but they will always be with you.  A great one that I highly recommend is called “Waterbugs and Dragonflies.”

When my husband sat the kids down to tell them of his passing, Marley simply got up and walked away.  She said, “No…don’t tell me this.”  And off she went to listen to her music. 

We gave her some time to process it and then revisited her about a half hour later.  We wanted to know if she was okay and if she had any questions.  She said, “yes, I’m okay.  No, I don’t have any questions.”  Then off she went again to be by herself. 

My husband had to leave town to plan for the funeral and I was left with grieving children.  I worried and wondered how they would handle all this.  I knew it was going to be hard but I had no idea how my oldest daughter would handle this.  The perceived notion is that kids with autism don’t feel emotion…but I know differently.  In fact, I am afraid that she sometimes feels too deeply. 

My neurotypical seven year old had the expected reaction to his death.  Hours of crying and sobbing and lots of questions.  However, I was beginning to wonder if my oldest with autism was even processing this information. 

My answer came the next night.  She had been ornery and arguing with her sister for no reason.  I left to put their little brother to bed and when I came back into their bedroom, I found her quietly sobbing on her bed.  Her little shoulders shaking…her eyes wet with tears.  When I asked her what was wrong, she said “I am going to do a magic spell to make Poppa Jay alive again.”  Then she waved her pretend magic wand and said a little chant to try and bring him back.   Then she said, “Please make Skylar stop being so sad.”  It was breaking her heart to see her little sister so sad.  

My eyes welled with tears because I had never seen her react this way.  First of all, she was upset on another’s behalf.  Typically, Marley can see me crying and not even realize that I am crying.  Secondly, I had only seen her have outbursts…never quiet weeping before.  Ever.  I sat with both girls for over an hour while they cried themselves to sleep.

When it came time for services, Marley refused to go.  There was a “party” after the services for family and friends to gather.  We tried coaxing Marley to go but she threw an all out fit at the gathering and my parents had to usher her out.  She could not even be around the idea of his passing.

About a week later, I found Marley on the floor with the book "Today I feel Silly & other moods that make my day" by Jamie Lee Curtis. She was on the "sad" page & was weeping very quietly. She said "this is how I feel because I want to see Poppa Jay again. He liked me and I miss him. I don't want him to be gone. I want to be able to see him."

She was finally processing it for herself.  Realizing she wouldn’t see him again – here on earth anyway.  So, Marley, Skylar & I started talking about all things that we loved about him and that he can still hear us.  They can talk to him anytime they want to….and he will listen.  He will be there looking out for them from heaven. 

That night, as my girls were preparing for bed, I walked into their bedroom to find them with the curtain pulled back and saying out the window…

“Good Night Poppa Jay. 
(Blowing kisses)  We hope you can catch these up in heaven. 
We love you.”

Now, when we say goodnight to each other, we also say goodnight to Poppa Jay.  Because he is listening.  And watching out for my kids.   They may not be able to run and greet him at the door anymore but he will always hold a very special place in their hearts.  And mine.  And my daughter with autism is finally processing it in her own way.  

Pumpkin & Squash Chocolate Chip Muffins

I must confess....I usually don't eat the gluten-free, egg-free food I make for my kids.  It has just been too hard to adjust to liking a new type of food.

However...I am trying and I have just reworked a recipe to transform an old favorite to a new, Gluten-free, Egg-free, Dairy-free, soy-free muffin.  The results are amazing!  Really....I eat these.  They are delicious!  This is a twist on one of Jessica's Seinfeld's recipes.

Here is it:

Pumpkin & Squash Chocolate Chip Muffins


1 cup canned organic pumpkin puree (or fresh)
1 cup yellow, summer squash puree (Steam chunks of yellow squash for about 7 minutes and puree)
1/2 cup turbinado sugar
1/3 cup grapeseed oil
1 tsp pure, organic vanilla extract
2 1/4 cups of Bob's Red Mill All Purpose Gluten-Free Flour
1 tsp baking soda
1 tsp baking powder
1 tsp salt
1/2 tsp xanthan gum
1 cup gluten free, dairy free semisweet chocolate chips (I use Chocolate Dream Chips)


1.  Preheat oven to 350 degrees.  Line a 12 cup muffin tin with unbleached paper baking cups.

2.  In a large bowl, mix together the pumpkin puree, squash puree, sugar, oil and vanilla.

3.  Add in the flour, baking soda, baking powder, salt & xanthan gum.  Mix thoroughly.

4.  Mix in the chocolate chips.

5.  Divide batter into the muffin cups.

6.  Bake for about 25 minutes.  Cool on a cooling rack.  YUM!!


Friday, April 12, 2013

Xander's Allergic Reaction

Today, I want to write about my third child, who is two and a half and has severe food allergies. 

I have been through three allergists with him.  The first allergist told me that basically I was crazy even though he skin prick test showed him highly allergic to peanut, dairy, egg and rice.  Because my son reacted to my breastmilk - this allergist thought that was highly unlikely.  He refused to give my son an IgE blood test and told me an EpiPen was unnecessary.  Seriously?  So I switched allergists.  

Here is a picture of the rash around his mouth that would not go away.

Since my son had a peanut allergy, I went to the peanut allergy guru in our area.  This doctor refused a skin prick test because my son had one 6 months prior and refused to skin prick test him for any different foods, even though he was only tested for 6 foods.  He did however, did run a blood test on those foods that showed up on the skin prick test and the results were remarkable.  My son was off the charts for peanuts, dairy & eggs and moderate for rice.  Again, I was treated like an idiot by this doctor for wanting more testing for different foods and he basically told me not to be so paranoid.  He did however; issue an EpiPen once those blood tests came back.

I was still not happy because my little guy did not sleep well at night and he started to get constipated.  He had a rash around his mouth that would come and go even with removal of these allergic foods.

So when it was time for his next appointment, a year later, I switched doctors again.  This time, the doctor listened and I could see him get more and more concerned as I listed our family’s history of environmental allergies & asthma, our Eosinaphilic Esophagitis and food allergies.  He did another skin prick panel and I begged him to include things like soy and wheat and tomatoes, which he did.  He ordered a full IgE blood panel including a TOTAL IgE to see how bad the problem was. Total IgE came back at almost 500, which is extremely high for an almost 2 year old.   And the blood panel showed he was indeed severely allergic to wheat in addition to all these other foods.  Once I removed wheat from his diet, he began to sleep better – finally!  And we no longer needed the steroid cream for the constant rashes around his mouth.

So I finally knew where we stood.  But I didn’t know how he would react if he got peanuts or dairy or eggs because he had never had them outside of in my breastmilk.  Well….once, he ate a bite of a cookie that had egg baked into it and he vomited 5 minutes later.  But, other than that, I was clueless.  The allergist told me he was likely to have an anaphylactic reaction if he ingested egg or peanuts but no one could be sure.  He made me understand that I was to have Benadryl and an EpiPen everywhere we went. 

This is hard for me to write because the experience is still fresh in my mind and heart and because it was so very scary.  I still lie in bed every night before I fall asleep thinking about it and wondering what is going to happen next time.

It was Easter Sunday and we were at a beach house for the week.  Thankfully, my parents were there too for a rare visit.   I bought my kids dark chocolate eggs for their Easter baskets.  None of them can have dairy but the ingredients said:

“Contains soy.  May contain peanuts, tree nuts, milk, egg.” 

I thought this was okay because my 2 year old son had eaten things that said “may contain milk or egg” or “made in a facility that processes nuts” before.

I was wrong. 

After dinner, the kids got into their chocolate and I was sitting at the table talking to my parents not paying much attention to how many chocolate eggs my son was eating.  I told my husband that was going to take the kids down the beach for a walk and he happily agreed as he did the dishes. 

However, as we were out there – my son started coughing.  I bent over to see him in the windy, cool evening and saw that he had sand in his mouth.  I thought that was why he was coughing and decided I needed to get him inside – then suddenly & thankfully, my husband showed up.  I asked him to get Xander inside to rinse out his mouth.  He scooped him up and I brought the girls in.

When I got inside, my husband said, “Kelly-he doesn’t look so good.”  Xander was coughing.  But also doing this weird thing like he wanted to throw up but nothing was coming up. 

My mind flashed to a blog I read a week earlier about how the coughing can be difficulty breathing and I dashed upstairs to get the Benadryl just in case.   I syringed it into his mouth and he swallowed.  We continued to try to get him to drink water but he could only speak one word at a time without coughing. 

I pulled him into my arms and tore his shirt off him to watch his breathing.  Then I saw it.  A rash was spreading across his torso.  He was itching like crazy. 

I looked at my husband and said, “Oh shit – he’s having an allergic reaction – grab the EpiPen & the keys – we gotta go!”

We were in the middle of nowhere and I had no idea where the nearest hospital was.  My mom reported that there was an Urgent Care right up the road, so I jumped into the driver’s seat and headed that way.

I made Chris watch his every move in case he needed to use the Epi, but Xander was starting to cough a bit less now…the Benedryl was taking hold but he was still squirming like crazy because he itched.  The Urgent Care was closed – of course – it was Easter night. 

My husband’s iPhone was only reporting animal hospitals nearby.  We passed a cop waiting for speeders and pulled over to ask him where the nearest hospital was.  He called EMS because he said they could get here faster than we could get to the hospital. 

So there I was…..pulled over on the side of a country road….my minivan door open to reveal a very itchy little boy that was coughing less and less now but being very good watching his TV show in the backseat. 

My adrenaline started to wear off as we waited for EMS and I started to shake.  It was a windy, chilly night and I failed to grab a coat and was still wearing my flip flops from earlier.   I felt like my knees could buckle and the tears started to stream as I realized the worst was probably over. 

I kept thinking, “How can I live like this?”  “How can I live thinking that the next bite of food could kill my kid? - My adorable, sweet, loving, smart and funny 2 year old blond boy?” 

Anyway – EMS came and indeed his lungs sounded much better – only a little wheezing, but we headed off to the hospital 30 minutes away just in case. 

That night, I slept in his room, next to his crib and woke every few hours to be sure he was still breathing well. 

I have lived through the scary parts of autism with my oldest child and lived through my middle daughter not being able to eat….but this was different.  It was FAST.  And it scared the hell out of me. 

Wednesday, March 20, 2013

CoQ10, Irritability and Vitamin B2

These past few weeks have been awful with Marley.  Her third grade teacher had about exhausted every trick in her book.  The resource room teacher was afraid of Marley just coming into her room to get out of her daily activities.  She expressed concern to me when Marley confided in her she “hated school.” 

Marley has been irritable, miserable, anxious and sometimes downright defiant.  Like when she got up from her desk at school and turned to face the class and said, “I’m outta here!” and left.  Who knows where she was going…she just didn’t want to be there anymore.  She screamed and cried about everything.  Every single day I was getting a call from the school.  Their absolute last ditch effort to get her to comply…..mom’s threats of taking something cherished away. 

I knew her anxiety was through the roof when she started chewing on her fingernails again and simply tearing off the skin around her fingers.  We had worked so hard to get that in check earlier this year….to see it back again was heart-breaking.  Things were simply getting worse despite my best efforts to reward, bribe, and even threaten her with removal of cherished items.   

When things like this happen, I always look to what has changed.  An environmental factor?  A new supplement?  More expectations placed on her?   Maybe.

Could it be yeast?  No…we’ve had that in check for a while and she has been on Syntol with good results before this started.  And no recent antibiotics to speak of.

Could it be PANDAS?  No, she hadn’t been sick and there wasn’t any OCD about it.

Then I thought back to when I started her on CoQ10.  It was about a week before all this started to happen.  Since Marley has low energy and CoQ10 is excellent for mitochondrial issues, I thought this would be a slam dunk….but I was beginning to think again. 

So, I took her off the CoQ10 for about 3 days.  She was a bit less irritable but still cranky.  So back on it she went.  Then…the shit hit the fan.  She had a meltdown at school when another student got to publish his story on the iPad.  She walked out of the classroom again. I was called and went over to the school (with my 2 year old in tow) to talk her down.  After I left, she escalated again and had to eat lunch in the principal’s office and spent the afternoon in the resource room.  She was a mess.  It was a Friday.  There was an emergency team meeting called for the next week.  What were we going to do?

But…by that point, I was pretty sure I had it figured out.  It was the damn CoQ10.  But why?  All my research said that a rare side effect of CoQ10 was irritability, but no reasons why.  My husband said – “Pull it!  Don’t give her any more” and of course I didn’t give her anymore, but I needed to know why this was happening.  If only I knew why, I could fix it.

I started to dig.  Thank God for my network of biomed moms.  One told me to go directly to the electron transport chain and look there.

Turns out that CoQ10 works to metabolize succinic acid, which requires B2 and CoQ10 to be metabolized in the electron transport chain. Once it uses more B2, then it decreases the supply of B2 available for the metabolism of other amino acids to make neurotransmitters, especially, serotonin.  And we know serotonin is the "feel good" neurotransmitter.  Serotonin plays an important part in the regulation of learning, mood, sleep, etc.   And experts say serotonin may have a role in anxiety, migraines and appetite.

So I pulled out her last Organic Acids profile from last year.  Sure enough….there it was.  Her suberate was high meaning that she needs more B2.  Riboflavin or B2 also helps to metabolize fatty acids.  Out of curiosity, I looked back at her labs over the years at her suberate levels.  It was high dating back 7 years! 

I took a week doing this research and meeting with her team at school…but I was pretty sure I had it under control.  She was off the CoQ10 and not so irritable but still not very happy.

And so, starting on Saturday morning, I started her on a broken down form of Vitamin B2 called Riboflavin 5’-Phosphate Sodium.  She was a bit better on Saturday.  Sunday, she was happier.  By Monday, she was excited to go to school and read her non-fiction book she wrote on Chipmunks to an audience of parents at her author appreciation day.  (She is NEVER excited to go to school on Mondays.)  By Tuesday afternoon, I got an e-mail from her teacher saying…”whatever you are doing at home--- keep doing it!  Another awesome day at school today!”  No more nail biting…no more anxiety…no more crankiness. 

Once her B2 levels are up to sufficient levels, I should be able to reintroduce the CoQ10 without problems.  I’ll give her body time to get adjusted before I go there again. 

And there you have it.  When I say that I treat my daughter’s autism using biomedical interventions…this is what I mean.  We need to understand what is going on in the body in order to treat it.  Simply throwing an antidepressant at the problem does not allow the body to heal on it’s own.  And if I would have taken her to a psychologist or neurologist that’s what I would have gotten.  Her neurologist flat-out told me he doesn’t know how to read the amino acid tests and that is the lab tech’s job.  (Needless to say, he is no longer her neurologist.)

Well, in our house, it’s MY job to read the amino acids tests and do the research because unfortunately, no one else is going to do it. 

Here’s my girl reading her non-fiction book on Chipmunks!

Friday, March 1, 2013

Turning Forty

Today, I am forty.  

As we grow, we tend to lump our life into decades.  The childhood years, the teenage years, the twenties when you are finding yourself, then the thirties….the childbearing years.  I had my kids in my thirties, but they were not the happy, go lucky, raise your normal kids type of years.  No…. my thirties were more about dealing with medical diagnoses of my children. 

My thirties started with the birth of my oldest child, now 10, and her diagnosis of Cerebral Palsy and later Autism.  It was the Autism that truly rocked our world.  

Growing up in a family of five myself, I was taught to do what was right. (Not that I always did.)  I was taught to use my manners, be kind and work hard because that is how you get ahead in this world.  My mom taught me to stand up for what I believe in.  My dad taught me to love fiercely.   And my parent’s relationship taught me to stick with my husband…even when things get hard.

But then, life got ugly.  In my thirties, I started to see things for what they really were.  I watched my beautiful, engaged, babbling 12-month-old daughter spiral backward in her development.  By 18 months old, we had lost her to autism.  There is not much that can break your heart like that.  Having your child there…but not there.  Watching other kids develop so quickly and leave her behind while she was lost in her own world. 

But in reality, I’m sure all this happened, in part so my soul could grow.  I needed to learn to lean on my husband for strength when I had no more.  I needed to learn to trust him because he loves her too.  I needed to love fiercely, like my dad, so I could see the truth.  The truth in what really happened.  I needed to work hard to get my daughter back.  I needed to develop the strength to stand up to doctors who simply wanted to medicate my two year old.  I needed to teach myself everything, just as my mom has in her life, so that I could learn HOW to bring her back to me.  

Little did I know that I would spend the bulk of my thirties learning about gut flora, methylation, candida overgrowth, nutrition, adrenals and mitochondrial dysfunction. If I had known in advance, I certainly would not have majored in business and marketing in college. I have spent the last ten years changing the way my family eats and lives life.  

There have been many tears and long nights in the past ten years….but I have also felt intense gratitude and incredible highs when she started to come back to us.  I now know my daughter…. something I feared would never happen.  I can hear her voice.  She tells me when she is nervous, angry or happy.  She tells me that she loves me.  She gives me unprompted hugs and tells me she is sorry if she has made a day particularly hard for me. 

During all this, I have had the honor of getting to know an amazing group of mothers.  They are autism moms.  And they have shown me the way.  They have taught me to read medical studies on my own.  They have held my hand when times got tough and helped me find answers to my daughter’s problems.  And these answers, incidentally, also helped my second child with sensory processing disorder and my son with severe food allergies.  And now that my daughter is recovering, I have the honor of holding the hands of newly diagnosed parents when they need me.

Needless to say, I learned more lessons in my thirties than I have my entire life.  And I feel stronger for it.  My gray hairs and crows feet are earned.  I guess my parents knew what they were doing when they named me Kelly.  In Irish the meaning of the name Kelly is: warrior.

And now that I have looked back, it is important to look forward.  I try to take one day at a time because when you live with autism, you never know what tomorrow will bring.  But I am optimistic.  I am living in a time when parents are demanding answers.  When passionate parents are healing their own children despite the odds.  And hopefully, we will see a cure in my lifetime.  There are already promising recovery treatments, although the results vary from child to child.  Despite my wariness of the medical community because of their denial of vaccine involvement and their insistence of the use of anti-psychotic drugs, I am excited to see what the next ten years will bring.  Functional medicine and Epigenetics are on the rise which is very promising.

As my husband always says…it is not what happens to you…it is how you react to it.  It is all about attitude.  And I love my children fiercely and that will never stop.  I will continue to fight for them, enjoy them, learn from them and hopefully continue to heal them.  God willing.  Here’s to the next decade of healing.