September 10, 2009

* Timeline Given to the Pediatric Neurologist for our 2 Year Old's Illness

I gave the following timeline to the nurse to give to the doctor to read before he came in to see our son.  I figured that if he saw our son before he read it, he wouldn't believe it.  I took our son's name out because I am not comfortable putting my children's names out there for all to see, yet I AM willing to share our story with whoever can benefit from it.

CKS, our 2 year old received his vaccination on May 15th, 2009. It was the DTPHepB/Polio vaccine. One shot.

He started to wake in the night, crying in pain, which is not something he had ever done before. He has always been a good sleeper. He began to wake nearly every night right at first and then it was about every other night or so by August. He would cry for 30 to 45 minutes and would toss and turn, grab at his legs and his stomach, put his head on us, put his head on the pillow. You could tell he wanted to go back to sleep, but he just was hurting too much. Eventually, he would fall back asleep still whimpering.

We noticed right away that his clear words had gone away. In March, around his second birthday, we were all marveling at how his language was exploding and how we were beginning to understand his words so much better. He was putting 2-3 words together, naming colors and shapes and a few letters, repeating the names of things in books, etc. He was very interactive and was bringing us books all day long to sit down and read with him. After the night waking started, we were having a hard time understanding him. We all noticed it. “Fall off” became “Floff” and he stopped saying “All done” after meals. When we could figure out what we thought he was trying to say, he was saying the first and the last sounds in phrases. He was getting frustrated more and more. After a while we realized that he was not bringing us books to look at anymore.

He had dropped his only nap right at two and only needed it on occasion. Since the night waking started, he was acting very tired and grumpy. We were saying that he was not his usual happy self. We thought he might be teething, getting sick, or was tired because he had been waking up in the night. He continued to be tired and grumpy week after week and got to where we just had to give him a nap every day and he was still grumpy in the evenings and at bedtime. He would fight us about getting dressed and ready for bed and cry when we put him to bed. He used to want to go to sleep and would even climb into bed on his own after we finished all of the night time chores.

For two years we have described him as a very easy going person. He goes with the flow. Nothing seems to ruffle his feathers. He has been a dream child. Few tantrums. Listens and obeys. Since May, he seemed to be bothered by more and more things. He became rather rigid in his routine in the morning and would get very upset if someone else came into the room while we were changing his diaper and getting him dressed. He would only wear certain clothes and he started to indicate that he wanted the tags cut out of his shirts. The tags seemed to irritate his skin. That was never a problem before. He started to throw fits about things that had previously not been an issue for him. He stopped listening and obeying.

By August, we began to notice that he was ignoring us when we would call him or talk to him. At first, we thought that he was just trying to see what he could get away with. We thought that we had just not stayed on top of requiring him to listen. However, he seemed not to hear us or register what we were saying to him. After a fever on August 9th, he stopped responding to us without much effort.

I have rejoiced for two years that this child actually likes to get his fingernails and toenails cut. He would get the trash can and climb up in a chair and hold his hands or feet over the trash can for me to cut his nails. Starting in July, he started to fuss and cry when I would cut his nails. He ran a fever on August 9th. Since then, he wouldn’t let me cut his nails. He cries and says, “hurt!”

He started to grab at his eyes and cry as if he had an eyelash in his eye. It started sometime after the vaccination and increased in intensity and frequency so that by the middle of July it was happening often and he was in a lot of pain. He began to squeeze his eyes shut and grab at his eyes at the bridge of his nose a lot. He stopped looking at me during diaper changes and when I would clean him up after meals. After the fever on the 9th of August, he stopped making eye contact at all. He began to look at us out of the side of his eyes. Actually, from across the room he would look at you, but one eye looked like it was slightly off and looking past you instead of at you. Up close, he would look everywhere but right at you. When encouraged/pressed to look at me, he would squeeze his eyes shut and lean forward and bump his forehead on mine. One time, he looked across the room when I asked him to look at me and I think he was looking at me with his peripheral vision. I asked him if he could see me and he smiled.

Mid-July we had our VBS program and he was in the toddler room with other toddlers while I was busy volunteering. He cried everyday when I left him, which was very unusual for my independent little guy. He was happy enough for a few hours, so long as he didn’t see me. When they tried to bring the toddlers down to the sanctuary to hear the music, CKS would not go in. He seemed frightened or worried. One of the volunteers walked him up and down the halls while the others went in to enjoy the music. We all puzzled over why he would act this way.

He used to like to play with the toy food and he liked to do puzzles and stack blocks and pegs and stacking cups. He played well on his own and with others. In June and July, he began to scatter his toys all over and didn’t play with them in the same way anymore. At his grandparent’s house in early August, he just scattered toys and the last time he was visiting before he got really sick, he didn’t play toys at all. The day he ran the fever, he just stood in the toddler room at church and watched the other children play.

CKS has always been a good eater. He has always eaten lots of different foods, but of course he likes animal cookies and other sweets. He ate veggies, but only pureed with the exception of broccoli and cauliflower. He has a few aversions to certain tastes and textures. By August, he did not want to eat anything but cookies. Every time we would sit down to eat he would cry for cookies while pointing to the cabinet. Also, he wanted lemonade. Mealtimes were getting very difficult and tiresome. Also, he demanded a particular plate and a particular cup.

He has always been a very coordinated boy. He started using a cup and utensils before the age of two. He could pour water from a large pitcher into a small cup. I let him do lots of things I wouldn’t normally let a two year old do, simply because he could do it. He could cut paper with safety scissors. Around the middle of July, we were noticing that he was becoming rather clumsy. After August 9th, when he ran a fever, he began to fall a lot. He ran into things. He knocked things off the table making big messes that we were not used to having to clean up. This was definitely not normal.

The following occurred the week before or after the fever on the 9th. CKS would suddenly jerk and fall over or lose his balance. His 8 year old sister tells that this happened while she was helping him put on his shirt and he jerked and fell, bumped his head and cried. His grandfather saw him suddenly jerk and lose his balance while they were working on a puzzle together, but he caught his balance. His grandparents report that several times he just fell off the potty at their house. Walking into Target in mid-August, he was walking like a drunk person, very unbalanced. These are just a few examples. After the fever, it was happening throughout the day.

Things went downhill fast from August 1st to the 15th. We went to Olive Garden on the first and on the 15th. During the second visit, he was very restless and agitated and he accidentally knocked his drink and several other things on the floor. It was crazy. He was in and out of his chair. He didn’t eat as well as the first time we went. It was a very noticeable difference. It was when other family members took a closer look and finally believed me when I told them that CKS was not the same and it wasn’t just because of the terrible twos. My mother could not get him to look at her.

In March, my mother took him to buy new shoes. He loved the whole experience and wore his shoes all day, every day. In August, my mother took him to buy new shoes and he screamed at the top of his lungs when they tried to take off his crocks. She managed to get his feet measured and she picked out some shoes and bought them even though she could not get them on his feet because of the screaming. Later that day, we put him down for a nap and put the shoes on his bed so he would find them when he woke up. He brought them to me crying and put them in my closet saying something like, “No shoes.” Every time he saw the shoes all week he would cry. We returned them to the store.

He became clingy, literally holding on to my leg while I was cooking or cleaning in the kitchen. He cried a lot about a lot of things. He wanted to be held a lot. He just didn’t seem to feel well. He continued to wake often in the night.

I took him to the pediatrician to show her how my son had changed since the vaccination. He screamed when I tried to take him out of the stroller to weigh him. He screamed when I put him in my lap and the doctor tried to look in his ears and nose and throat. She was quick, but he was not happy about it all. He stood in the middle of the room and rocked back and forth and looked at her out of the sides of his eyes. She could easily see he was not the same. She referred me to a pediatric neurologist to have him evaluated. I was most concerned about seizures or strokes and further regression.

The doctor read this and then came in to observe our little boy.  CKS looked him in the eyes and answered his questions with words or pointing.  The doctor was confused.  I quickly explained that when we realized what was going on, we did several things.  We contacted Houston Center for Homeopathy (sequential homeopathy), took him to see his pediatrician, and started him right away on the GAPS diet.  (We did not pursue the homeopathy.)  I explained that he imediately started to improve on the diet and over a period of only 16 days CKS is almost the same child he was before the shot.
 
The doctor was very interested.  He asked about the GAPS diet and recommended that we stick with it, but to be careful about making sure he gets all of the nutrients needed, perhaps with supplements.  He said that after reading the timeline I gave him, he expected to come in and meet a profoundly autistic little boy.  He had figured on ordering an EEG, an MRI, a CAT scan and a whole panel of bloodwork.  After seeing how well he was doing, he suggested that we do the EEG and the CAT scan, but skip the rest for now.  I agreed.  There is simply no need.  The EEG can tell us if there is activity that makes it likely for our little guy to have seizures.  The CAT scan is to check out our little boy's gigantic head to see what has been going on in there.  He really does have a HUGE head.
 
We did the EEG in the office and CKS did amazingly well.  The CAT scan will be scheduled for another day at the hospital.
 
It was kind of fun to be able to share CKS's amazing recovery with someone who believed me.  I think this doctor will be looking into the GAPS diet.  Maybe, I pray, many other children can be helped if he looks this up and takes it on as part of his practice.  I WILL pray for it!

5 comments:

  1. You have no idea how much this inspires and encourages me that my children will be healed.

    Honey

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  2. Honey, I am glad. I started this blog to document our journey and to be a help and an encouragement to others on a similar path. I am offering a prayer for you and your children right now...amen.

    Did you read further? Have you read about how my son is now four and is developing socially and cognitively right on target (or better)? He is figuring out how to read and spell. He talks to all of us non-stop about everything. He is learning so many things. We are still on the GAPS diet and continue to heal.

    One thing we have not done, but will be implementing next week, is treat for parasites. I believe this has held us back, according to Dr. NCMs website FAQ page. I look forward to a new level of healing after this step.

    God has been teaching us so much through all of this. I pray you are blessed through your circumstances, whatever they may be.

    With love for you and your dear children,
    HomeschoolMama

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  3. I just started reading your blog as I recently heard about the GAPS diet. I am nursing a 14 mo. old and while he is generally happy and healthy, he had reflux for his first 8 months and has always had lots of gas. I was diagnosed with inflammatory bowel disease in my 3rd trimester, and had to take two rounds of antibiotics right around his (C-section) birth, one right before, and one right after. He's only had one ear infection and round of antibiotics to date, but might already be showing signs of allergies (not sure yet if seasonal or food). I am considering the GAPS diet for myself and for him, and have already started limiting grains & feeding him pickles. The reason I am commenting is because he is scheduled for a vaccine (one vaccine, as I was planning to postpone MMR as I did with my 3-year-old daughter) in early June. After reading this post, I am terrified to have him get the vaccine. He's never had a reaction to any vaccines to date, but I also realize your son did not either. In your opinion, is there anything I can or should do prior to the vaccine, or should I try to postpone/skip it? TIA for any feedback you have. God bless!

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  4. Hi Anonymous,

    I am happy to share what I can. Indeed, my son did not seem to have any issues with the vaccines he received prior, but I had stopped giving him any vaccines after six months of age because I began to become concerned about what they may have contributed to my other childrens' issues. I was afraid to give him any more vaccines, but my husband wanted the children to be vaccinated, so we agreed to move forward slowly. I was afraid of vaccines, and I was afraid of autism. If you read on to the end, you will find that my children and I are all healed of our GAPS issues. You will also find that it was not the GAPS diet that healed us, but The Lord. I have come to understand that all things are possible with God (Mark 10:27). He does not give us a spirit of fear... (1 Timothy 1:7). To the pure, all things are pure... (Titus 1:15), and I no longer live according to the basic principles of this world (Colossians 2:20), therefore I do not need to be afraid of food, of vaccines, or the diseases that vaccines are purported to protect against. I feared autism and I feared food. These are the areas of life where we were hit by the enemy. I no longer live by fear; I live by faith. I am not afraid of food. We eat anything; anything at all, even red velvet cake when put before us, and we eat it without fear, because we live by faith. I am not afraid of vaccines anymore, but I do not see the point of getting them, since I am not afraid of the diseases either. We live by faith. My children are all developing normally. My children are very social. Eczema is gone. Language is great. Eye contact is great. When symptoms return (they occasionally do), we turn to God in faith, rather than run in fear, and the symptoms go away without diet change. God, who is love, healed us. (Side notes: Our newest baby is so healthy and is developing so fast, and our teenage son does not have acne, even eating a poor diet, because he is healed.)

    If this is just too much for you, you can read the book written by Dr. Natasha Campbell McBride for her recommendations, or go to the website. I think it is www.gaps.me

    Also, there is a recommendation for a slow and careful administration of vaccines in the book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies by Kenneth Bock, M.D., and Cameron Stauth.

    May God bless you on your journey. You can read more about mine on another blog titled Walking In Faith at http://iinhimandheinme.blogspot.com

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  5. Thank you very much for your response and for all the information. First, I finished reading your blog and wanted to say congrats on the new baby! And praise God that you are all doing so well!
    I ordered the book by Dr. McBride and will also check out the book on vaccines -- thank you. I believe God may have led me to this, too, but right now I'm just reading as much as I can as I'm still nursing.
    I found your blog very inspiring - both physically (in regard to the diet and learning better, more nourishing ways to eat) and spiritually. I've been challenged to seek God in a more real way. I will check out your other blog. THANK YOU for sharing your journey and many blessings to your family!

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