B12 Update + Starting Yeast Treatments!!

3 months ago, my daughter started the Methyl B12 shots. I don’t know if it was a slight regression or yeast die off, it was horrible. She started fecal smearing, aggression etc. There was a never ending list of what we were experiencing. I even asked the doctor if the fecal smearing was a side effect of the Methyl B12 and whether the full moon that I have been seeing has something to do with it (talk about losing it!) I pledged to keep on giving the shots and not skip a beat with her supplements. Whatever reaction is going on, it is probably a signal that something good may happen. As all of this was ongoing, I was astonished at how much my daughter had progressed. This whole period lasted probably 2 weeks, wow! I can’t believe this is how she was all day every day, possibly worse. I had forgotten how difficult it was raising a child who was labelled as “severely” on the spectrum.

After this whole crazed period, we started seeing another child. I am in tears as I write how good it feels. I am finally getting to know her. The following is what we have seen:

  1. Socially- Previously she never used to notice anyone or engage anyone. Now she says HI spontaneously. She engages her brother and friends. She takes turn to share an item (unless it’s the phone- she loves her music)
  2. Echolalia Reduction- My daughter would repeat every word and question verbatim. I would say “Hello Baby” She would repeat “Hello Baby” Now she actually doesn’t repeat. She says, “Hello Mama” and once she said, “I love you” and referenced my actual name! When she says her goodnights she doesn’t parrot what we say but appropriately says, “Good night mama…Good night daddy” etc
  3. Empathy- Never thought I would see this day! Before when she used to get hurt or when someone else got hurt, she would not even flinch. Her pain threshold too was like off the charts. Now when she falls down she rushes to me and says, “Boboo mama. It hurts. Blow” I then blow the pain away. Amazing! The other day her brother fell down when she was trying to lift him. She immediately placed her hand on her mouth in shock and said, “Sorry!”
  4. Eye Contact- With the fish oil, she started making eye contact. With the Methyl B12, she has started maintaining eye contact! Yes, MAINTAINING eye contact.
  5. She has started to use “Me” and “You” ARE YOU KIDDING ME? (tears) She says, “Help me” when she needs help removing something and “Help you” when she wants to assist me with something. Etc
  6. Better fine motor skills- She has started using a spoon much easier. She had learned how to use a spoon when she was 12 months old and we have pictures of her eating food with it. She lost that ability with her regression. She can dress herself!!
  7. Swimming- she is learning to swim. We have a private instructor that is helping. She loves the water.
  8. And others…TOO MANY TO LIST!

I can attribute these to first and foremost GOD AND PRAYER. There were so many times (you can tell from some of my blog posts) that I wanted to just stop trying but God always nudged me forward and ministered to me through the Holy Spirit. In addition to that, I don’t think Methyl B12 is solely to thank. My daughter responded to it…slowly but I think that the other supplements she has been taking have been a blessing! I think Methyl B12 fortified the gains we were already seeing.

Previously, my daughter’s teacher had stated that my daughter would need support for much of her life. Now….ohhh now the tune has changed. Our last home visit she said my daughter is blowing them away with new things, “Where is she getting these stuff?” She stated that if my daughter keeps up she should be mainstreamed by 2nd grade!

After all these gains made me sit my husband down. He finds all these stuff overwhelming at times and he sometimes asks me if my daughter can have a “cheat day”. The answer is always NO NO NEVER!!!!. I explained to him that these gains need to be amplified by more gains as we try to be consistent with her diet, supplements etc.

With that said, we still have bad days. Here and there. I can handle them. Yeast is to blame because the days she acts like this; she pairs it with hysterical inappropriate laughter. The doctor had advised us to use Yeast Aid by Kirkman labs. The taste was too strong my daughter’s sensitive palate. So she absolutely refused to take it. We spoke to the doctor about this on the follow up visit and he prescribed taste free Enhansa from Lee Silsby Pharmacy. I have read the reviews and I am so anxious. Perhaps this next phase we will see her answer questions and hold a conversation? What I am dreading is the die off—oh brother! I will talk about Enhansa in my next blog post.

Thank you Jesus!

No day off with AUTISM!

I have been so exhausted with juggling work and home. So I decided to take a day off last week and just relax and walk around in the mall. I was so thrilled because I wanted to pamper myself…maybe have a massage, pick up some beauty products etc. I just wanted a normal day, one without autism.

After about two hours of shopping and eating, I had a big smile on my face and I wanted to do the last thing on by to do list: massage. I grabbed my pina colada smoothie as I walked down the mall. Then all of a sudden, I hear commotion. A group of kids walked into the mall…some were really loud.

I remember seeing this tall lady, probably 15 years of age…stimming and I saw other kids struggling to just keep it together. I have seen this before…AUTISM. WTF!!! I was trying to get a day off from this. This very thing! I mean, it is everywhere. Everywhere I go, it’s there. I can’t seem to escape the fact that for now it is part of me. I can’t even get a DAY OFF without being reminded of this.

Despite the fact that I was mad, I just went with the flow. I tried to ignore it.  I was walking in the same direction as the group. Then I saw all the people staring at the group of kids. There were faces of horror…like, “what is that?” There were faces of disappointment. At this time when this was ongoing, the teachers were holding the hands of these beautiful kids and ignored the stares. Then all of a sudden my anger on my DAY OFF just gave way. I broke. These people are staring at these kids as if they are disturbing their peace in PUBLIC PROPERTY. I felt as if those stares were directed towards me and towards my daughter who was in school at that time. We did not choose for our kids to end up this way. We did not choose for our kids to regress and then be slapped with the Autism label so that we can be shunned to obscurity. We did not choose this. We truly didn’t.

All of a sudden I felt tears run down my cheeks. Shoot! I could not be crying…I just wanted a normal day off. I wanted a day off from Autism. I then ran ahead and patted the back of one of the teachers or special edicators who was caring for 2 boys. She had an autism awareness jacket on. I gave her a hug and said, “My daughter has Autism. Thank you so much for the work you do” Then I ran away with tears flooding my eyes. Forget the massage. Who was I kidding? There is NO off day with this monstrous thing called Autism. Even if we try to push it to the darkest corner in our minds or hearts, there is no ignoring it. It is a loud, UGLY and cold disease. It simply can’t be ignored and there is nothing glamorous about it.

I remember crying in the car at the lights as I exited the mall. I cried to God, will this ever end? Will my child be one of those recovered kids I read about. Yes, I am doubting YOU God, in this moment. I know you can do it, but at this moment, I am in doubt. Then all of a sudden I heard one of my favorite songs on the radio. A sign?….then a car zooms past me. The two bumper stickers at the back state: GOD > (God is greater) Do you believe?

Methyl B12 lollipos vs. Methyl B12 shots

Prior to my daughter’s first DAN! Doctor visit, she was taking the MB12  Revitapop lollipops. MB12 helps with opening up the methylation pathways for spectrum kids. Ultimately this helps with detoxifying the body. I knew that MB12 was one of those treatments that worked well for a big percentage of children on the spectrum. So naturally, I was hoping and praying that the lollipops would work. I saw no change at all since January through March. The lollipops were part of her treatment, but it felt like it was more of a reward than a supplement into her diet.

When we visited the DAN! Doctor, he wrote a 3 month plan on what we will do. On the list, he stated that he would like me to start giving shots to my daughter. I am so afraid of needles, but knowing the percentage of how effective this treatment is for children on the spectrum, I was elated. The shots work much more effectively than the lollipops as the absorption/utilization rate is higher.

I placed the order with the compounding pharmacy and waited with bated breath for the arrival. 48 business hours later, the shipment arrived and I was so happy. I made sure my daughter went to bed early that night so that I could administer the shot. The needle was not at all intimidating, but being that I had an existing fear to needles…I almost chickened out. I just decided to be strong and braced myself as I pushed the needle onto her bum.

The next morning, I anxiously woke her up. I stared right into her eyes and started to ask her question after question (Crazy… I know!). You hear stories of how some parents say their children were fast responders that they swear that they had a dramatic change in their children. Sadly, that was not my case. As is with the case with all the other supplements she is on, we noticed slow but steady changes. One gain built on another and eventually we noticed a change. For example, we started my daughter fish oil and after 1 month of giving her the supplement….better eye contact! Perhaps that is what will happen?…slow but steady gains with B12.

This journey so far has been hard, but I thank God for being my rock. He has truly spoken to me through every difficult step. He has held me through my tears, rejoiced with me through the triumphant times. He hasn’t brought me this far to leave me.The below song speaks what my heart is feeling right now.

Highlights/Bio-med Updates- DAN! Doctor?- CHECK!!

In my last post, I shared that God had revealed to me that things will start to move “sooner than expected”. Oh boy…didn’t that come to pass. See, we had trouble locating a DAN! doctor… but soon after that revelation, we got linked to this wonderful doctor 1 hour away from us. I will discuss about this awesome doctor and our first doctor visit in future posts.

We also had to get the samples for the urine porphyrins and stool test. The urine sample retrieval was a no brainer, we took the first urine early in the morning. The stool sample was a challenging. My daughter is potty trained and she did not cooperate when I tried to “catch” the stool on the paper bowl that doctor’s data provided. I even pulled out her old potty to try and see if she would go but it did not work. I had to improvise further and use saran wrap on the toilet seat and guess what… it worked, she finally cooperated.

The test required that my daughter get off her nutritional supplements so that the results can provide an actual picture of what’s going on. When we did so, she became extremely hyperactive. I had not seen her this hyper for quite some time. She was jumping up and down, spinning round and round etc. It was hard. Very hard. She even fell down from the dining table. She fell so hard that I had to call 911 for help…she had passed out for a few minutes and all I could think about was Jenny McCarthy’s book…when the Evan was in the ER and she was screaming, “  Do something” It was a scary, scary time for me. I did not even have the words to pray…I just remember yelling, “Jesus, Jesus, Jesus” The doctor at children’s national stated that she suffered a concussion and would be ok.

As you can see, so many things have happened in this very short time. I felt bad that I had not written a blog update so I thought of providing a truncated update. I will follow up this week with a more elaborate post. I kinda feel like I totally “RAN” through this one.

Sooner than expected [Biomed update & Spiritual message]

Jeremiah 1:12 Then said the LORD unto me, Thou hast well seen: for I will hasten my word to perform it.

We have reached a plateau in my daughter’s treatment due to yeast issues. Now I know why many people in the biomed community say yeast is a beast. She was doing so well, everything was going on swimmingly…then all of a sudden the behaviors came back. The stimms, spinning, hyperactivity, laughing for no reason and sensory overloads came back in. It’s been so long since she held her ears due to sensitivity or flapped her arms with excitement. Her teacher too noticed a change and she told me, “She is very vocal and is doing so well with following direction but surprisingly her old behavior just came back out of the blue”

This made me to think and ask myself, “Will things get better?” I started thinking of how it would be like to have an adult daughter who is solely dependent on me. Perhaps God was going to heal her in her teenage years…just in time for adult life? I was crushed but I thought, either way, I would love her to bits and care for her. Nothing would change my love for her. I wasn’t giving up on healing, instead I started thinking of it being a distant reality. This definitely clashed with the previous promises God gave me about my daughter and her healing. So I silently said in my heart, “God, direct me”

God answers prayers, never doubt that. This past Sunday I was directed to watch a sermon by Joel Osteen and my message from God lay there. He spoke of UNEXPECTED DELIVERIES and that some of us have been waiting on God for a promise but we think the delivery will take longer but God unexpectedly hasted the delivery. He even went to share a testimony of a 4 and a half year old girl who couldn’t speak and had so many behavior issues. The mother tried to do everything under the sun but nothing worked, even speech therapy. She did not lose hope but continued to thank God for healing. Then she got an unexpected delivery (sooner than expected), she was fully healed.

Usually when I get a message, I always ask for affirmation. I had a beautiful dream. I cannot even begin to share the details but basically I was thanking God for restoration. I remember saying over and over again, “Thank you for restoring her”. I woke my husband up ( I do this a lot) and told him I had this overwhelming dream. I was even unable to go into detail. I just asked him to pray with me.

Thank you Jesus for unexpected deliveries. Thank you for restoring her.

Life is a gift [Lesson concerning Autism]

“Teach us to number our days, that we may gain a heart of wisdom.”
(Psalm 90:12, NIV)

Life is a gift, even in the midst of autism, life is a gift.

On Saturday night, I was thinking of what blog post I would write. I just knew that I was fed up with my daughter’s plateau with bio-medical. I wanted to write my frustrations down on paper and basically blog a rant about autism. So I made up my mind…when I wake up, I will write a candid blog entry about how frustrating life is with autism.

On Sunday morning, I was prepping my daughter, gave her supplements and breakfast. Then at 8:30am, I received a message from my sister asking our family to pray for her brother in law who was in an accident. I immediately jumped out of bed and frantically punched her number on the phone, “What is that message about?” I thought that she probably was talking about somebody else. Then she whispered in pain, “His dead!, he died in a car accident in Virginia” I burst out in tears.

My sister’s brother in law was a happy person. He was filled with life, laughter and joy. He might as well have been my brother. I last saw him during the thanksgiving break. He was so happy to note the progress that my daughter had made. He made us laugh and even walked us to the car as he strapped my son in the car seat and lifted my daughter up. As we were leaving, I drove up to the light and I heard a soft beep and I looked beside me…he waved with a big smile and drove off to work.

As I was processing this information, I received another text message. My sister who is overseas was due to give birth in the next few weeks, She indicated that her son, my nephew died. She said that he was beautiful. I then fell to my knees. The pain was so much. I cried from my soul.

Then I began to think about the rant that I wanted to write. How selfish of me! 2 women today lost their children. My sister and my sister’s mother in law. They will never hold their children again. It made me realize that I have been fixated on healing my daughter and complaining that I have forgotten to thank God for the gift of life. My daughter is a miracle. Every passing day…meltdowns, stimms and all….is a gift.

I know this is not the nature of God…but I felt like he was yelling from heaven, “NOW WHAT!!! You sorry and ungrateful child” I felt like I was wacked with the most twisted lesson.

As I was looking through my emails today, I stumbled upon a scripture from Joel Osteen (I have subscribed to their messages). The following was their message:

 

Every Day is a Gift
Sometimes, our days can be so full and busy that we forget how fragile life really is. It can be easy to allow little things to creep in and steal our peace and joy. Maybe something doesn’t go your way, or someone says something upsetting. Even traffic can cause us to lose focus if we let it. We have to remember that each day is a gift. If we choose to focus on what’s wrong, we’ll miss the beauty that each day has to offer.

I encourage you today to not let the precious moments of life pass you by. Don’t wait for holidays and birthdays to show people that you care. Remember, each day is unique and irreplaceable. You have been given time that can be invested or wasted, hours that can be used or misused. That’s why the psalmist prayed to God, “Teach us to number our days.” He was saying, “Teach us to value every moment that we’ve been given.” As you daily keep a proper perspective, you’ll gain a heart of wisdom and experience the full blessing that He has for you each and every day!

A Prayer for Today
“Father, thank You for the gift of today. I choose to focus on the blessing of each moment instead of allowing the little things to steal my joy. Keep me close to You always as I submit every area of my heart and mind to You in Jesus’ name. Amen.

 When I was reflecting on this message, I decided to take a note book and document every good thing my daughter does. I also will document why I am thankful for her. I call it the THANKFUL book. It is so easy for us bio-med moms to be so fixated on healing our children that we forget to celebrate the present day, the HERE and NOW. Document what testimonies you have. If your child doesn’t have a meltdown, write it in your book and say…THANK YOU JESUS. It’s often the small victories that keep us going.

As I was listening to a song by hillsong, I heard the Spirit say, “Why are you fighting so hard when you know that I have healed her” See, God has already healed her. The word of God says that by his stripes we WERE (past tense) healed. Jesus died on the cross and took sickness and rendered it powerless. Why am I fighting a fight that has already been won? All I can do is read the word and continue to claim his verses as the physical manifestation of healing continues to take place.

IT IS FINISHED.

 

 

Herx Reaction + Candida die off?

Probiotics are key to one’s bio-med regimen as It re-populates the gut with good bacteria. This is particulary essential for children on the spectrum as their gut flora is imbalanced and has more bad bacteria than good. A recently conducted study in mice with autistic behaviors proves that probiotics play a key role in bio-med. In this particular study, mice with autistic behaviors were treated with probiotics. Soon after, the autistic behaviors were alleviated. You can read an overview of the study here. These scientists boast that, “It’s really impactful, this notion that by changing the bacteria, you could ameliorate what’s often considered an intractable disorder” When I read this, I was happy…but at the same time mad because bio-med parents have been speaking about this for quite some time. Although most have anecdotal evidence, the truth is, many children have improved in one way or another through probiotic treatment paired with other bio-medical interventions.

That being said, I started my daughter on the Granular Theralac probiotic by master supplements. It has 25 billion CFU. I was really excited about starting this particular probiotic because back in August-September, the pediatrician suggested that we start her on the Florastor (I believe it has 5 billion CFU) after her gut flora was severely imbalanced after taking 2 antibiotics back to back. She did really well on it. This was prior to her beginning bio-med. You can read our experience with florastor here.

My main concern this time round was if she would have any die-off reactions. The last time she was on florastor she seemed to get worse before she got better. Well, on day 3 of the Granular Theralac (I started ¼ teaspoon 1x/day then after sometime we will bump up to 2x/day), I noticed that she got a low grade fever. The battle had begun. Then later, I noticed that she had a runny nose. At this time, I suspected the Herx reaction. Which is basically, the body getting worse before it feels better. In laymans terms, the body is now fighting with the bad guys. I was really concerned and started to read mom’s message boards. There is really no science to this  “knowledge hunt”, sometimes I feel crazy and ask myself if I am actually doing the right thing. What have I become? My daughter is not feeling well and I run to a message board to see what “HopeMom87” has written. Are you kidding me?

All in all, I decided to wade through the storm. After all, even before the bio-medical intervention…my daughter had far worse unexplainable things happen. Multiple trips to the doctor never solved my queries. After the fever and runny nose disappeared, my daughter became a bit irritable. Nowhere near to how she was before bio-med but I was definitely noticing it. I wonder if now the Candida is being killed off and she is going through a die off period? No idea.

All I know is that she is getting better. She is focusing more. She is calmer. She is more aware and sociable. I have to say this over and over again to myself so that I don’t lose my mind. This is truly a turbulent journey. It makes me want to through in the towel. Why did I sign up for this again?

PERSERVERANCE is starting to look crazy.

Slow, but steady (Bio-med update)

Slow, but steady.

That is exactly what I am witnessing with bio-medical intervention for autism. Prior to bio-medical, my daughter’s developmental clock was going backwards. She slowly lost her skills over a period of time. She stopped waving goodbye, stopped saying mama, stopped being affectionate, stopped being engaged and lost eye contact. She regressed.

Now with bio-medical, I feel like it has definitely stopped the regression. The clock is slowly starting to move- tick, tock. She is gaining skills- slow, but steady.

One thing that we noticed with her regression is that she was very aggressive towards other children. I would get so many complaints. One mother close to my circle would always call me and tell me that my daughter scratched her children. It reached a point that I was fed up- FINE! Then my daughter doesn’t even need to be around your kids then.

Over thanksgiving (1 and a half months into biomedical), we travelled to see some family. A friend came over to see my daughter. This friend has been praying for my daughter for some time now. She had brought her grandson along. The boy walked into the door and my daughter immediately ran to him and grabbed his hand. She was aware! She then prompted him, “play” and she went right into it. I was in utter shock…I almost shed a tear but I held them back. Otherwise, the flood gates would be wide open. The little boy then introduced himself, “Hello, my name is Milo” My friend then asked my daughter, “What is your name” I gasped because my daughter has never answered a question (aside from what color the school bus was a few days earlier. Read blog post here) My daughter then looked at the boy and answered the question confidently!

I am so excited about this victory! It’s truly small glimmers of hope that show that indeed when you attempt to address the underlying issue of Autism, then you can actually recover your child. As much as I keep on saying slow and steady, I wish there was a way that I could hasten the recovery and make up for lost time. However, just as it took some time for the regression to creep in and steal our children, then we need to allow time to repair the bio-medical mess that has become of our kids. All in all, it will be worth it. I am looking forward to having a conversation with my daughter. FAITH. I will hold on to it.

What color is the school bus? (BioMed Update)

I remember when my daughter was given the official diagnosis, the doctor was keen to suggest medication for my daughter’s hyperactivity. She actually offered to write up us a prescription almost right there and then. I can’t imagine what would have happened if I went down that path of medicating her. I am not against medication, I think that some children probably need it. I however I am against it when it is the offered as the first solution. Why can’t we try other homeopathic or biomedical approaches first?

I am so glad that my daughter started the biomedical intervention. We are taking the supplements low and slow and introducing them one by one. I am currently recording all her activities on this cool app called Birdhouse for Autism. It was rather exhausting in the beginning because she sometimes pooped 10 times a day…yes! 10 TIMES!!!  And I had to record every single activity to see what if the supplements are actually working. I became obsessed with her poop. It was all pure diarrhea. I remember flying to the toilet to see and record what exactly she had done. One specific poop that scared me was the black stools which from what I read, could be an indicator of bleeding in the gut.

Well, it has been a few weeks since she started the digestive enzymes from enzymedica and let me tell you- her poop!!!! Her poop is now healthy and she only does it 1-2 times per day. She no longer screams bloody murder when she is on the toilet. I remember when I first saw her normal poop, I almost cried. I told the sitter, “It’s so BEAUTIFUL” lol!!! I know that my fellow mother warriors can feel me on this.

Currently, I am not seeing any burst in language. However, she does appear more present. She does not have that glazed look or brain fog. She still giggles at night inappropriately…so I know that she definitely has yeast overgrowth. This is one of the symptoms of yeast overgrowth. As far as hyperactivity…it’s still there. As far as appearance, she looks healthier. Her dark circles under her eyes have diminished and she looks brighter.

Now to one big achievement yet!!! My daughter has been speaking mainly through echolalia. When you ask her a question, she always repeats the question back you. Yesterday when her father was helping her brush her teeth, he asked, “What color is the school bus” She responded, “YELLOW!!” I was so ecstatic!! She answered a question!!!

I am realizing that this whole journey is a marathon not a sprint. I can’t just dash to the finish line, instead, I have to put in the work. I am seeing glimmers of hope here and there. Someday…I will have the biggest achievement…when her ATEC score drops to 10 and below which is considered recovered. Right now I believe her score is like 128.

Cheers!

BioMed Update + Guilt trip

At the moment, my daughter is taking omega fish oil and digestive enzymes. In addition to this, she has Epsom salt baths 3 times a week. I am adding supplements one by one under guidance of her medical staff. I have not noticed any additional improvement in her speech or behavior. I know that sometimes biomedical intervention can take a long time so I am just pledging to be persistent.

Over the past week I started thinking a lot about my pregnancy with my daughter. When did it all go wrong? Part of me feels immense guilt. I am tempted to blame myself for what my daughter is going through. I know that she is pain and it crushes me because I can’t really do anything to instantaneously relieve her of this pain.

When I found out I was pregnant, I was ecstatic. I never missed any appointment, ate organic and healthy etc. There were a couple of things that I question that happened during my labor and delivery though. I was overdue and was induced at 41weeks. Along with induction, I was put on IV antibiotics. Shortly after delivery…my daughter received the Hep B vaccine without my consent. From what I have been reading, a person should NEVER receive a vaccine if they are on antibiotics. Of course some of the antibiotics that were being administered to me intravenously went to my daughter. I mean, this just makes me mad.

During the guilt trip that I had this past week, I called my daughter’s PCP (primary care physician) to find out what brands of vaccines she received. One thing that stuck out like a sore thumb was the Pediarix combo vaccine. It has 850 micrograms of aluminum which is way above the FDA’s maximum requirement for aluminum of 25mcg. This made me think about when my daughter got that vaccine. The doctor told me to “watch out” for side effects but at the same time they did not specify what exactly I am watching out for. Yes, they told me about the fever which she never got but they already said that Tylenol should help. I think doctor’s need to do their due diligence and thoroughly educate parents and THEMSELVES! Most of them don’t even know what ingredients are in the vaccines. All they do is just spit out what the APA tells them to.

When I was going back to re-think of all the strange occurrences, I then started to ask myself “what if this…what if that” then I stopped. I am neither helping myself nor my daughter by feeling some kind of guilt or remorse. Guess what, AUTISM HAPPENED. I don’t care at this point how it did happen. All I know is that it happened to this first time mother who was hoping for a smooth and normal ride. It happened to this mother who had great aspirations for what she would do with her daughter at 1 ,2, 3 the 4 years. All those years past by… with the hope being carried forward to the next year.

To my beautiful daughter, I know you will get better. I may not have much but I know I have some crazy faith that will see us through.