Manic Since Being Sick

I am writing this blog and am totally frustrated at the moment. Aleks was sick for 3+ weeks, had 3 different antibiotics because some weren't working and then 2 rounds on 1 antibiotic. We know that in the healing of her leaky gut that antibiotics are not always good for the healing. What we didn't realize is that in healing her massive double ear infection and temperature of 104 we would see such regression in her autistic behavior. To say it has been rough is an understatement.
While on antibiotics, Aleks started walking on her toes again, using more 'baby' words and just overall irritated and manic. We talked with her ST and learned that there is a typical regression of 2-3 weeks after an illness and then she will be back to her post diet, therapy self. It has been soo frustrating to watch her suffer again and to experience the manic, controlling behavior again. My biggest fear at the moment is that this behavior will stay and all the progress we made will be gone. As I just wrote that, Aleks came up and gave me a kiss and told me that she loves me. Thank you God. I think that is His way of reminding me that although we've regressed we aren't back to where we started.

Faith, Hope & HEALING-
xo
Melissa

My Daughter Came Alive During Her High Fever

The other night my daughter's fever spiked to 104.7 after being diagnosed with an ear infection. We gave her a fever reducer, got her fever down to 102.5 but were still worried. Yet, the 102+ fever brought about something amazing. As Aleks crawled in bed with us at 2am, she started chatting away. Although Aleks' speech has been improving with speech therapy, she still struggles with her vocabulary and comprehension. That night at 2am she wasn't struggling. In fact it felt like she had just awoken from a coma and had so much to tell us. She was talking about school, her books, her babysitters dog and what was it's name. Her pronoun use was correct and words she has never said before were flying out of her mouth. Both Bill and I turned on the lights and just watched her talk. She couldn't say enough and seemed to have so much to tell us. Bill looked at me at one point and said, "What is going on?". That's when I remembered in my research that I had read about a fever phenomenon.

The sad part of this is that once the fever was back to normal so was my little girl's autism. It almost seems like it was a dream, but then it happened again last night. Her fever spiked to 104.7 and she was lethargic and miserable. The fever got down to 102.4 and she started chatting again. My friend Sandy came over to check on her after I called her in a panic and witnessed it too. Aleks was affectionate, chatting and overall just happy. This morning that little girl is gone. Her fever left, her sickness (ear infection and a viral infection) is still here and the chatty happy little girl is also gone. I told my husband that it seems like a cruel joke. I love his answer, that maybe it is a glimpse of things to come. That is what I am now holding onto. What I have learned is that my little girl is still trapped inside and wants to come out. This has renewed all my efforts to find her healing formula and get her out of the demon grips of autism.

Faith, Hope & Healing~
Melissa

Help For a 'New' Mom on the Autism Journey

Since announcing on the radio that Aleks has autism, I have had the privlege of helping along a few moms who are in the beginning of their own autism journey. One of my new moms just received her son's food sensitivity testing results back and is feeling so overwhlemed. Here is part of the email I sent her. Hopefully the information will be helpful to you too. I've taken out some of the personal information, but felt the rest was okay to leave in.

Faith, Hope & Healing~
Melissa

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Hi! You are not alone. I really feel for you. I totally understand how overwhelming it is when you first get the test results back. I cried all the way home from Whole Foods. What exactly is your child sensitive to? Give me all the foods and let me see what suggestions I can come up with for you. If not chicken or turkey nuggets, I've also made homemade fish sticks for Aleks out of tilapia. It's easy and yummy for her. By the way, Aleks was a super picky eater before the diet. She was down to just a few foods, but after removing all her sensitive foods it got better. All of a sudden she started eating her veggies again! She also was more willing to try new foods! Most of the foods she was eating were the ones that she was sensitive to. Hence her body being addicted to them.

It sounds like your child is still in the 'food fog' that so many of our kids are. When we took out the chicken, corn, rice, soy in addition to gluten and casein is when Aleks had her severe withdrawals. For 3 weeks she was up crying at night and just plain miserable. Then it stopped and it has gradually gotten better. Is your child in Speech Therapy? If not that has been huge for Aleks. We love our ST if you need the name of someone. She has experience with autism and really supports the GFCF diet. Before the diet, Aleks attention span was seconds to a few minutes max. 3 weeks after the starting the diet she was up to 20 minutes for being able to sit still and concentrate. The speech has come along from there. She has never been non-verbal, but has always struggled with just a few words. Now, six months later she is talking in short sentences. The other key element in her healing has been supplementation. I buy many of
mine from Kirkman Labs. I know Dr. Spore will soon start carrying them. Their Super Nu Thera was developed for autistic children and is a high dose of Vit. Bs and magnesium. We also found that Nordic Naturals 'Children's DHA' really has helped. During the beginning of the diet she did 1 t. 2x day. We mixed it in with her apple juice, along with the Super Nu Thera and a few others. The DHA helps calm the brain down. They're finding that so many of our kids have swollen brains. I have Aleks on a strict supplement schedule. I got it from Dr. McCandless's book recommendations and Dr. Spore.

As far as your child's speech, a ST will most likely be able to help you figure out what is going on. We learned that besides it being a speech problem that Aleks wasn't able to comprehend what we were saying. Her cognitive just wasn't there. ST has helped. Susan, our ST, also really helped by giving us tips on how to talk to her which helped. It is so cool to see once things come together. One of the things we learned is to talk as slowly and simply as possible. Fewer words, simple commands and use as many visuals as possible. It won't always be that way, but it will help his brain catch up.

I hope some of this helps. You've been on my mind a lot lately. Rough couple of days with Aleks being sick. It is amazing how the autism stims always get worse during illness.

You're in my thoughts & prayers. Hang in there and know you're not alone.

Blessings-

Melissa

You're Blessed to be a 'Special Mother'

I love it when I receive a story or a poem that makes me smile, cry and thank Jesus all at the same time. I did just that when I read the following poem from Erma Bombeck.

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The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

GFCF Diet and Beyond

When I first read Jenny McCarthy's book, Louder Than Words, I was fascinated by her experiences with the GFCF diet.  She had put her son on the diet and seen remarkable results.  Years after first trying this, she said that she still received the most questions about how the diet worked and how she implemented it.  I have to admit that the GFCF diet seemed overwhelming when I first heard about it.  If you're new to autism and biomedical therapies, GFCF diet stands for Gluten Free Casein Free diet.  This means a diet that is 100% free of all gluten, which is the protein found in wheat, barley, rye and oats.  Casein is the dairy protein found in almost all of your dairy products. To do a clean GFCF diet, it also requires that you not only eat 100% gluten and dairy free but also that you don't come into contact with gluten or dairy on your hands.  I have found the biggest culprit is Play-Doh which has wheat in it.  The TACA website has great information about the diet and common school products that need to be avoided because of gluten.

We started Aleks on the GFCF diet this past July.  Before we started the GFCF diet, I first read Lisa Lewis' books, Special Diets for Special Kids 1 & 2.  The two books give you the why and how the diet can work, plus the medical research behind it.  I am constantly researching and reading everything I can about the GFCF diet and really found her books, which double as a cookbook, to be wonderful.  I learned about the leaky gut syndrome and how many autistic kids have it and how it impacts their ability to digest gluten and casein.  The easiest way to explain it is that their guts don't properly digest gluten and casein because of the weakened condition of the gut and how the proteins then sneak out into the blood and start attacking the brain.  This is why the brain and all that goes with it are affected and how the diet can make a difference.  The gluten and casein have an addictive effect on the brain and usually an autistic child with GI problems and food sensitivities is addicted to and eating only the food that is bad for their body.  It's like a drug addict whose body tells them that they need the drug when in fact it is toxic and making them sick.  

For Aleks, before her autism took hold of her, she was a great eater.  She loved her veggies, fruit, grilled meats and always drank her milk.  She wasn't picky and we used to joke that we wished we ate half as well as she did.  We started the diet in July and the little girl eating at the table that last day before the GFCF switch only would eat a handful of foods.  Her diet was down to peanut butter, grape jelly, whole milk, bread, grapes, cheese, chicken nuggets, french fries, an occasional vanilla milkshake and lots of ketchup.  That is all she would eat and all she ever wanted.  Veggies were 100% gone and she was unwilling to try anything new.  She was so regimented about her diet that she would scream and act up if she didn't get these foods exactly how she wanted them.  One of my worst and last memories before the diet happened at McDonalds.  We were phasing out the dairy and allowed her to still eat chicken nuggets, french fries and ketchup.  She had gotten used to eating the ketchup out of those little white paper cups that you would pump the ketchup into at McDonald's.  McDonald's was her reward for a good session of Speech Therapy.  See...I was learning too!  Well, on the way back from our vacation, we stopped into McDonald's but had to eat on the road so all we received were the packets of ketchup.  Aleks lost her mind in the car.  She started kicking and screaming and dumped her entire lunch on the floor of the car when he saw that the ketchup was in a packet.  She was almost uncontrollable.  Fries, chicken nuggets and packets of ketchup were flying and I was so angry at McDonald's!  I knew that this wasn't her, I knew that this was autism having a fit in our backseat.  Despite knowing this, it didn't ease the sadness I felt watching her cry and shake in her little car seat.  It was the moment that I knew that no matter how hard the diet was, it had to be better than this.  I am so glad that I had this moment, because it kept me going on the road ahead.

Before the McDonald's/vacation episode, the day we had actually left to go up North, we had been to see her DAN doctor and get her tests done.  It was a lot of work to collect urine samples out of a non-potty trained child, get a stool sample and hold her down to have blood drawn.  Dr. Spore told us that she wanted the tests taken BEFORE we started the diet because she wanted to see what the food was doing to Aleks' system.  These tests, plus the hair mineral analysis were done and sent off.  We then started gradually taking her off dairy by mixing some Vance's Dari-Free in with her milk.  Every day we would increase the Dari-Free and decrease the milk.  We also cut out cheese and were checking labels for anything dairy/casein related.  Let me just say that casein and gluten seemed to be in everything!  After a week she was diary free.  We then took out the gluten.  We actually planned on doing it gradually, but ended up doing it in just a day.  She was now on the GFCF diet.  I went to Whole Foods and was pleasantly surprised at how many GFCF foods were available.  Most were made with corn and rice flour which was fine on the diet.  I didn't allow her to have soy because I had read that the soy protein make up was so similar to dairy that a lot of kids couldn't handle it.  We were on this diet for about a month.  We noticed  the tantrums were lessening, her eye contact was increasing and her attention span was increasingly quickly.  Her speech therapist told us after 3 weeks that she felt like she was working with a different little girl.  Her attention per toy at ST went from 30 seconds to 20 minutes!  This in just three weeks!  She also listened better and seemed to be more present.  This was wonderful, but not the end of the diet for us.  I was making her homemade chicken nuggets, she was eating a lot of fruit, corn or rice pasta and still drinking lots of Dari-Free milk.  The shocker for me came next when her IgG & IgE test results came back.  

For autistic children, the IgG and IgE test results show what foods their blood reacts to.  An IgE food is a severe sensitivity.  IgG foods fall into categories from severe to less severe but all need to be avoided for the body to heal.  That by the way is the purpose of the diet.  To heal the body, by stopping the food poisoning and  allowing the brain to heal.  As it is healing and the opiate like foods are removed it becomes easier for the child to learn.  I love this explanation that I heard from another doctor.  For those who don't believe in the brain/gut connection, think  of this.  When you have too much alcohol to drink think about not only how your body feels, but how your brain feels and reacts.  Hence the gut/brain connection.  For Aleks, who has a leaky gut, the food wasn't breaking down in her gut, was leaking into her blood and attacking her brain.  I knew after reading that, that we had to take out all toxic foods.  

I was just leaving the radio station when I got a text from Bill.  He knew I was going to WF and wanted to tell me that the test results were in.  It started with yes, Gluten, Dairy and Soy were all big offenders.  Then he said that I also needed to avoid rice, corn, yeast and peanuts and anything with eggs in the foods that I got her.  What?!  I called him and he said that in short she can't have those foods either.  I wasn't overwhelmed until AFTER I left Whole Foods.  All GFCF foods have rice flour, corn flour or soy in the.  There were no breads, crackers, cookies, or pastas that didn't have something in them that she couldn't have.  I spent an hour and a half in WF and left sobbing in my car.  How could what seemed possible with the GFCF diet now seem so impossible.  There was nothing that she could eat, at least that's how I felt.  For two days I wasn't sure what she could eat.  We met with Dr. S and found out the complete list and how much more extensive it really was.  Aleks was now unable to eat gluten, casein, soy, rice, corn, eggs, yeast, peanuts, grapes, chicken, mustard (it's hidden in a lot!) and anything with coconut.O These were all high IgG foods and oats was her biggest offender getting the IgE marking.  Her favorite foods, chicken nuggets, PB&J(grape), crackers, bread.  We then took out everything else out of her diet and my journey on the GFCFSFRFCFYFEF diet began.  

When we removed the corn, rice, yeast, eggs, peanut butter, grapes, etc., is when she had her withdrawals.  The next three weeks were awful!!  The withdrawals from gluten and dairy were minimal.  In fact it was a pleasant change.  The withdrawals from the rest of the list were a nightmare!!  She cried all the time, was up  constantly through the night,  couldn't sit still, couldn't concentrate, was a terror at therapies and was just miserable.  After two weeks I felt like I was going to lose my mind.  Our Dr. told us that she had never seen withdrawals go longer than 4 weeks and to hang in there.  We just kept hanging on by a thread.  Finally, after three weeks the withdrawals stopped.  She started sleeping through the night, eating the foods that I was now making 100% at home from scratch and seemed to be becoming her post GFCF self again.  The withdrawals were done, but we did find out in the months ahead just how sensitive her body is to the foods and how even a little on her hands can cause the autistic stims to come back.  More on that later...

The Start of Our Autism Journey

We didn't know that Aleks was autistic for a long time . In fact, I was shocked the day that my mom said the word 'autistic' for the first time. It was just this past February, we had moved to MN from FL and were living in a small two bedroom apartment with our almost 3 year old daughter and our dog. My grandfather had just passed away and my mom was out visiting the weekend after his funeral. I had been sick in bed with the flu and she said that she needed to talk with us. That is when she said that she thought something was wrong with Aleks. We had wondered about her speech for awhile and I thought that is where it was going. It wasn't. When I pushed her to tell me what she thought was wrong, she said I think Aleks has autism. She burst into tears and so did I. Not feeling well and feeling emotionally overwhelmed with grief, I crawled back into my bed and cried my heart out. How could my miracle baby have something wrong with her. We had been through so much as a family, why this? Why now? I was angry with my mom, angry with God and internally fighting that something was wrong with my baby girl.

I stayed in the grieving mode for awhile. I would come out for short breaths of air, look around on the Internet only to turn it off and try and forget about it. My relationship with my mom was strained, I was angry and Aleks' behavior was getting worse. In the next month, we sold our house, bought a new house, traveled to FL to pack up all our things and I knew it was time for me to act. I stopped feeling sorry for myself and her and decided that I would do whatever it was to fix her. It was at this time that I went out and bought Jenny McCarthy's book, Louder Than Words. To say it was life changing is an understatement. All of a sudden my fear was replaced with an unquenchable desire for knowledge. I read her book in just 2 days and then moved onto more books about the GFCF diet, biomedical interventions and what local doctors could help us. Trying to find a doctor was to be my first BIG hurdle.

Doing a morning show and getting up at 3:30am takes it toll on your body. My day would consist of going in at 4:30 for the show, meetings, production and then home around 11:30 or noon. From there I would kiss my daughter and husband and dive onto the Internet. Google became my best friend and I spent hours and days researching and filling my brain with anything and everything autism related. I also started calling local doctors and hospitals for an appointment to get Aleks in. She still wasn't diagnosed and without a diagnosis no one was willing to help me. By this time I had come to the realization that my daughter most likely was autistic. I also became so grateful for my mom's courage in telling me. I have since learned that it is quite often other family members who notice autism before the parents. It's a burden on the family member who breaks the ice and brings it up, but it is key in beginning the healing.

All the little things started adding up. Her speech wasn't improving and actually had gotten worse. I remember at her 18 month and two year visit telling the doctor and nurse that I think she has lost some of her vocabulary. I was told that most likely she hadn't and since she had reached all her other developmental milestones that they were sure she was fine. I kept telling them that I was nervous, something just didn't seem right with her speech. Their answer, let's get a speech therapist evaluation. That happened at 2 1/2 and was a disaster! Aleks wouldn't sit, wouldn't cooperate and seemed lost with the pictures that the therapist was showing her. We were upset and told that yes, she would most likely need therapy. Still, no word of anything more serious. So, jumping forward she is now 3 and we're living in MN. Her speech is still a problem and she started becoming a different child than my sweet, even tempered baby girl. She hated strangers, wouldn't make eye contact, walked on her tip toes and became emphatic about rituals. At 18 months she loved her veggies. At 3 she wouldn't eat any...not one. The only foods she liked were chicken nuggets, peanut butter, grape jelly, whole milk, grapes and lots and lots of ketchup. All of this would eventually make sense once we met her DAN! (Defeat Autism Now)doctor. That will be another blog.

Finally, after waiting for months we got her into a local hospital for an evaluation by a leading developmental pediatrician. This took 3-4 months and we got in because I called almost every day and asked if there were any cancellations. Finally, one day it happened. Someone cancelled and our September appointment was now July. Mind you it was now April and July seemed like a miracle. At this time I was reading all that I could about autism and doing hours of research online every day. We had met with her new pediatrician in MN and was told that yes, she has some autistic characteristics but that she couldn't diagnose her. I've come to learn that most pediatricians don't diagnose autism. Whether they can't or don't want to is a matter of debate. Our MN pediatrician at least listened and pointed us in the right direction. She may not have the answers but she didn't brush it under the rug. She encouraged us to keep digging and make appointments at the local children's hospitals. I did but it took several months to get Aleks into just one doctor. That was the developmental pediatrician that I mentioned. Finally the big day in July was here. Appointment day and I foolishly thought that I would come home from the hospital with some answers. Instead, after filling out almost five hundred questions (this was a prerequisite to being able to just make the appointment) and waiting several months to get in, we were left with, yes she has the symptoms of autism but we need a MRI before we can say conclusively.

In the meantime, I thank the Lord that I had been diligently searching for a DAN! doctor. All I knew is that I wanted to make sure I had a back up plan should the hospital doc not work out. Thank goodness I did. The problem was the first DAN! doctor I called didn't have an availability until October. I took the appointment but kept searching. It was this search that changed Aleks life for the better. It was this search that led us to Dr. S, our current DAN! doctor. This is where everything started coming together. Dr. S believed me when I told her that Aleks changed after her vaccines. She encouraged us to follow our gut and not have the MRI done. As we later found out, sedating Aleks would have put poison in her already compromised immune system could have spiraled her even further downward. Dr. S understood exactly what was going on and never waivered in her belief that Aleks would get better. Also at this time we contacted our school district and by the grace of God got Aleks in for testing before they broke for the summer. Our DAN! doctor and school district plus all that we had learned about biomedical was the beginning of pulling Aleks through the window of healing. This is where the story of joy, triumph and tears of joy come in. This 'window' is also where we still live in our autism journey.