Week 10 and 11- DTaP Clearing 30c and 100c CEASE therapy update

Hi guys

Man this clearing is dragging on. So last time I posted I was advised by our homeopath to water dose Noah with 100c to help him push through the 30c issues/aggravations we were seeing. He responded beautifully to the water dosing as he always does. The following week our homeopath wanted us to dose Noah twice with the 30c... he did fairly well that week (sometimes we don't see aggravations pop up until 5-7 days later). So on the day we dosed with 100c about 7 days after the last full dose of 30c, he got sick yet again. High fever, red face, anxiety through the roof where he was cutting his skin with his fingernails, cold and cough symptoms too. He was sick for 4 days and I am not sure if it was due to the 30c doses or the 100c dose.

He is just starting to feel better this week but we are still seeing aggravations. His anxiety continues and  I am struggling to keep his hands away from scabs and cuts. His face flushing has returned as well and his cough with heavy mucus continues. Our homeopath thinks we should do the reaction protocol again with the 100c. I will be doing that tomorrow.... I am praying for huge gains.... aggravations can be sad and discouraging when we don't see breakthroughs. And I have to admit I have had a difficult time with this clearing. We have had more aggravations than gains. I am trying to remain optimistic. I am sure this is all part of the process and I must continue on.

I will continue to post updates as we treat our son with CEASE therapy.

Week 7, 8 and 9- DTaP 30c CEASE Therapy Update

So these last three weeks have been a bit of a blur. After Noah's first dose of 30c he became sick within 5 days- vomiting, high fever, nose/eyes running constantly. The next 2 weeks following he continued to struggle with sickness- specifically congestion, runny nose and eyes, cough with mucus and bright red splotches that appeared on his cheeks as well as behavioral aggravations and noise sensitivities. Our homeopath had us water dose Noah with the 30c and we saw improvements both times... but within days his symptoms/aggravations would reoccur. So, we have now been told to water dose with 100c which we plan to do next week. She explained that this sometimes helps the child push through that level. He has really been struggling but I know this is also a good sign- this is another vaccination that needs to be dealt with, his little body needs healing from it. So we go forward!

The main areas of improvement we have seen with this clearing have been mainly focused on socialization. He is starting to play and connect with other children at the therapy center he attends. He is also very interactive with us and usually has great eye contact. He is also babbling and saying more words which has been exciting to see. We still have a long way to go-- he doesn't quite know how to use his words to communicate his needs. He is mainly identifying and repeating what he hears.

So that is a summary of what has been going on! I will post again after we water dose 100c next week.

Happy 2nd Birthday Noah!

Little Noah turned 2 yesterday. And while I dreaded this day for months, I only had JOY. Our family came together and celebrated this precious little boy and all of his progress and hard work. We made gluten free cupcakes and decorated in "Thomas the Train" theme. He really enjoyed his party. He helped open his gifts, he enjoyed licking the icing off his cupcakes, he played with many of his birthday gifts.... and was PRESENT. He giggled and enjoyed himself. He was aware of his surroundings and didn't get overwhelmed by the birthday guests. He was able to interact with everyone and babbled off many words.            

 I am so thankful to the Lord for this happy day. 

Hep. B vaccination and Signs of a Problem

In reviewing Noah's medical record, I have come to the realization that he struggled with vaccines from the very beginning. At 4 days old he was given the Hep B vaccination. Three days later his eye ducts became inflamed and infected. I didn't know this at the time, but I have learned that this is one of the many different symptoms that should alert a parent that their child is having difficulty with vaccinations. He was given another Hep B vaccination around 2 months old and the same exact reaction occurred.

The Homeopath we are currently working with also feels that this may be a key vaccine to detox for Noah as he always seemed to have some sort of reaction to this particular vaccination. She told me that this may be the first thing we detox. She also said that we will be working on a constitutional remedy to counteract the detox. Even though I am nervous about embarking on this path, I know I must for my precious boy. I want him to have the best life possible. I want him to thrive and grow. I will leave NO stone unturned to help him heal and recover and be everything God has intended for him to be. I pray that the Lord guides my steps and give me wisdom to make the right decisions for his care.

So, we will have our second meeting via Skype with the homeopath next Tuesday and then we will probably start the remedies. So exciting and so nerve racking at the same time!!!!

Does Autism Control Our Life?

The answer is yes. I was thinking about this today. Every single part of our life is impacted/affected by autism.

Our extracurricular activities (pretty much non-existent), our finances (have to be a on a strict budget to pay for all of Noah's therapy), our food choices (can't let Noah watch us eat gluten and dairy foods), our relationships (marriage strained, no time for friends, local family not very supportive).... our days are governed in many ways by autism. We can't just relax like a typical family...go to church,  go out to dinner, watch movies, enjoy shopping because our son has difficulty with these things. When we are home we are supposed to spend every waking hour with him- engaging him, playing with him appropriately, redirecting his autistic behaviors, not allowing him to stim for too long... making every single minute educational for him. A typical toddler is learning from people naturally. Noah does not. He does not have any internal desire to look at our actions or faces. He is often in his own little world and we must constantly bring him out of this world and keep him here with us. It is exhausting to be honest with you. But, what is the other option???

So, I look forward to the day where I can say my life isn't controlled by autism- I am not sure when or how this will happen. I am praying for a miracle- I am praying for complete healing for our child. I am praying for recovery. Maybe one day, Autism will be a distant memory... a horribly sad, difficult time we went through. And if for some reason God does not allow full healing or recovery for little Noah, I pray to God that He helps us learn how to live our lives in spite of this diagnosis. I pray that we don't lose ourselves, our dreams, our marriage, our health and finances to this disorder. I don't want to be another statistic. I want to rise above this diagnosis and live life victoriously. This is my prayer.

Sickness, Regression and a few updates

Noah has been sick since Tuesday. When this happens, we have to stop all of our normal activities-- gymboree, therapy, and intensive one on one play with Noah and just take care of him... hold him... make him as comfortable as possible. Let him watch more tv than we usually would. I know once he starts feeling better we will be back to our normal, crazy schedule. I don't mind a little break.

We were told yesterday he has an ear infection. The doctor knows I am against giving antibiotic. He told me that I could continue to monitor Noah- see if his fever goes over 102 or if his symptoms progressively get worse. If any of these things occur, I am to start antibiotic. So far, we have been keeping the ear infection at bay with Garlic drops. They seem to really work so I am praying that they allow Noah to fight this infection naturally.

With sickness comes regression--- words and signs that he usually uses disappears. Activities that he was doing prior to the sickness have stopped and stimming behaviors have taken their place. Shaking his head and pacing mostly. This makes him feel better I guess. I know the regression is due to him not feeling well but I still hate to see it. I am praying that he will bounce back when he begins to feel better.

In other news, I had my first consult with a CEASE certified classical homeopath. She spent about an hour on the phone with me, asking a lot of detailed questions about Noah... his life so far, issues we are seeing, his personality. I am excited to see what she believes his constitutional remedy is.

I also have a screener coming out to the house on Tuesday to do the UAI screening for the EDCD Medicaid waiver. We are praying that this is approved so we can provide Noah all of the therapy he is in need of!

Hard Day

In the midst of much good news, much progress with Noah, I was told today that Noah's insurance does not have an autism benefit. The health insurance company misinformed me of this a few weeks ago.

This was pretty upsetting to find out. We just want to help Noah. We want him to have the very best chance at a normal, decent life. And his insurance does not cover autism?!!! It is a neurological disability and insurance won't help us????!!!! This makes me livid.

So, now this is where my faith gets tested again. I have to have faith that God is going to provide. I have to trust Him when I don't know how this is going to play out. I have to know that He is a good God and that He has good things in store for our little boy.  I am praying for a miracle. I am praying for financial help to handle this enormous cost of therapy---- I am praying that the EDCD Medicaid waiver gets approved for Noah.

Hebrews 11:1 "Now faith is the substance of things hoped for, the evidence of things not yet seen"

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Noah has had a few breakthroughs lately:

He is starting to use his pointer finger almost independently- whoooohoo!

He is saying a few new words, trying to imitate things we are doing

He is a champ at doing puzzles now and stacking blocks

He is starting to do gestures to songs that we sing- like "head, shoulders, knees and toes"

I am truly thankful for this recent progress!

Speech Therapy and ABA have begun

We have had a pretty busy week. Noah started attending his speech therapy this week. And today, he had his first ABA session in our home. His ABA therapist Lilly is awesome. I think he will work well with her. 

She was here for two hours- He cried for the first 45 minutes but then calmed down and allowed her to be around him and play with him. This is pretty big. It takes Noah forever to warm up to new people or new environments. When I began taking him to Gymboree, he literally cried every time he was there for over a month and a half. When we were attending church, Noah never got used to the church nursery.... he cried and cried for months (4 months!) and then we gave up and stopped attending. It was just too draining to deal with. So, I am very hopeful that Noah and Lilly will work well together. This is a good sign and I am soooo excited about starting.

For Speech Therapy, they have suggested that he receive ST twice a week. The speech therapist feels that we should introduce PEC cards for communication. I am just concerned that it will allow Noah to not use his words and rely only on cards/pictures. I have been assured by more than one professional that PECs helps with communication and will "bridge the gap" until a child's language increases. 

Areas that we are waiting for/pending for Noah's treatment:

1)  We still are looking into homeopathy and are about to submit paperwork so we can have a consultation with the homeopath

2) We have an appointment with DAN! doctor Mary Megson at the end of February. Hopefully she will run tests to see how Noah is doing medically and we may begin doing biomed after this appointment.

3) Medicaid Waiver- this process is taking forever. I have applied and we are still waiting for the screener to come out to the home and complete the UAI on Noah. We may have another month of waiting before this happens.

4) Health Insurance coverage for ABA therapy???  We recently found out that Noah's insurance now has an autism benefit but we are not sure what that exactly covers. We have submitted paperwork for this and are waiting to see if they will cover any of his therapy expenses. Any help would be awesome. We are estimating that paying out of pocket for the minimum ABA therapy per week (6 hours) will cost us at least $1200-1400/month.

5) I am fighting for Early Intervention to provide us with speech in home. I have not heard yet if this is possible.

Homeopathy and CEASE therapy

I have recently learned about homeopathy and how it can specifically treat autism. I have talked with a classical homeopath and we are seriously considering going this route with Noah's treatment, before we pursue the biomedical treatment (supplements, chelation etc.).

The classical homeopath has been certified in CEASE therapy and she would be combining both classical and CEASE in treatment. At this point, with everything that has gone on, I want to make sure I am not doing anything that will cause him further harm or distress. We are praying that God will direct us to the best treatment for Noah. Like every other parent of a child with autism, we have a ton of different options as far as treatment goes---and we have to make really difficult decisions. All I know for sure is that I want Noah to function the best he possibly can... I want for Noah to have good health... to be able to live life without a ton of medications/supplements. I would love if he could eat normal foods again... if he could sleep through the night and tolerate bath time and social gatherings. I cannot wait for the day where he is able to talk like other children his age....

I am praying for God's direction as we move forward. I know that He will make it clear to us the path we should choose.

Waiting Game and CEASE Therapy

So, I am feeling a little better today. These last few days have been hard. I have allowed myself to cry and talk about it and now I am back on the saddle.

Here are the treatments/interventions we are doing with Noah currently:

1) 1 hour of OT/week through Early Intervention- this will be increasing to 2 hours per week in the near future

2) GFCFSF diet

3) Cod Liver Oil

4) Probiotic

5) Constant interaction/redirection by my mother (she watches Noah while I work) and myself and my husband. Our OT has schooled us in doing "drills" with Noah on various toys/activities. We have been doing this for the last two months and we have seen a positive change in him. He has gone from fixating on balls, wheels and electronic buttons most of the day to playing with age appropriate toys with and without our involvement. We still monitor his play because he will quickly begin to fixate on parts of the toy and not use them as intended. We are also trying to implement some of the principles of ABA. Reinforcers and breaking down of tasks. Prompts. This seems to also be helping even though I know he needs intensive ABA for treatment.

We have found an online program for ABA therapy that is user friendly. It is called Rethink Autism. We will use this program until we receive ABA therapy in the home.

6) Epsom salt baths

7) Gymboree play groups 2-3xs per week for socialization.

Here are the treatments/interventions/resources we are waiting for:

1) The EDCD Medicaid waiver- I am praying that this will be our answer to cover some of the enormous costs of his treatment, which as of right now insurance is not covering.

2) Speech Therapy- we are on a waiting list for a spot to open up. I have no clue how long this will take.

3) ABA therapy in home- we are on 2 waiting lists and were told that there is a 4 to 6 month waiting list to begin these services as well.

4) We are waiting to see DAN! Doctor Mary Megson at the end of February. I am very excited to have this meeting and to gain an understanding of some of Noah's medical conditions.

5) I plan to add a multivitamin to Noah's regimen soon as well as enzymes. I am trying to implement everything in stages so it isn't too hard on him and so that I can see what is working and what is not.

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So as we wait we are trying to stay busy. Continue to learn and read about treatments. Try to implement  some of the techniques on our own. Budget our money and save as much as possible.

I have also started reading about CEASE therapy and I am excited about what this treatment may offer Noah in his recovery.

I'm having a hard time...

There are days when I feel okay and ready to do what is needed to help Noah.

These last few days... not so much. Grief, sadness, fear and regrets creep up on me and I feel paralyzed.

I have a hard time seeing the regression and difficulties Noah has with learning. We go over the same words and activities every day... over and over and over and over... and some days he gets it, other days he acts like he forgets. He struggles to spit out words... it is painful to watch it. There are days when he zones out and I feel like he leaves us. I don't know how to take him out of this fog he is in.

I want so badly to give him the therapy he needs, the hours he needs.... but I am hindered by finances and no insurance coverage for this therapy. I don't know how we are going to afford this... I really don't. His diet alone is costing a fortune. I leave the grocery store with just a few bags and it is almost $100 a trip. The DAN! doctor consultation visit is almost $700!

It is a fight just to get him help- waiting lists everywhere (for ABA and speech therapy)... 4-6 months of waiting! That is too long when early intervention is key. Then, while you are waiting, no one is willing to train you to do the therapy yourselves. You have to read books and try to figure it out.

And then there is support--- as soon as my friends and family found out about my situation with Noah, many disappeared.... I have never felt so alone in my life. I don't really understand why... maybe they just don't know what to say to me or they think I am too busy to be bothered. It is very hurtful. My sisters... my brother---- where are they? Why haven't they just called to check on me?

A few nights ago I looked at all of Noah's pics since his birth. I noticed that he went from a smiling, interactive, happy child to a child that rarely makes sustained eye contact, zones out and will no longer smile at the camera. The change occurred from 9 months to 12 months.  What occurred during this time??? Shots at 9 months and then 3 ear infections with 4 rounds of antibiotics....

So, I am now struggling with regrets and with self blame. Should I have not received the flu vaccine while pregnant? Should I have not had as many ultrasounds? Should I have limited Noah's TV time? Should I have allowed him to be around more children early in life? Should I have not allowed vaccines? Should I have questioned the overuse of antibiotics? Should I have picked up on these changes in Noah and intervened sooner? Would this have changed the course of this disorder and prevented it?  I don't really know how not to blame myself for this--- I was supposed to protect him and make sure he was doing okay and I failed.

I know that I will have better days and that I will look back at this time (and this journal entry) and feel differently.... I just don't know how this is going to pan out. I really don't. I want to trust that God is going to handle it... that He is going to provide.... but I don't feel it right now. I don't know why this would happen... especially to little Noah. He is the sweetest little boy and he deserves the best in life.

I am praying for the Lord to give me peace in this storm

Little Victories- Merry Christmas!

I have been trying to find replacements of Noah's favorites food with gluten and casein free items. This is much harder than I anticipated but we are making some progress.

I purchased gluten free oatmeal (glutenfreeda from amazon.com) and snicker doodle cookies (Life is Good brand) and Noah loves them!!!! Victory! He also likes the GFCF pudding (Zen brand) I found as well as the GF chicken nuggets. I am going to continue switching out foods until we completely eliminate gluten and casein from his diet.

In other news, we are starting to see a few breakthroughs over the last few weeks with his behavior. He appears to be much more engaged with us than he used to be. He practices giving good eye contact with me (it is so funny because he is making a concerted effort to do this, like he is being timed) and he is enjoying typical toys. He still stims on car and truck wheels but not to the extent he used to. He is starting to say "Bye" and use the gesture. This is HUGE! He has never done this consistently. Now we are working on using it in the correct context. We are also working on saying "Hi" with the gesture. As far as socialization, he is handling Gymboree classes better. He doesn't cry the entire time we are there (yay!) and he is tolerating some of the activities they do on the mat.

I am so thankful to the Lord for these encouraging developments.

Merry Christmas!

My To Do List

Here are the areas I am working on now to help Noah:

1) Find a ABA consultant/therapist who will be willing to do some basic training with me and my family while we wait for therapy to start (4 month wait)

2) Find a DAN! doctor who will let us pay privately or who will take our insurance (our local DAN! doc will not take our insurance or allow us to pay privately)

3) Read/Research as much as possible on treatment strategies until we find someone to train us

4) Find a multi vitamin that Noah will take

5) Completely eliminate casein from his diet- then Gluten

6) Work on structure- with his daily routine, with our home

7) Start giving Noah fish oil and probiotic

8) Continue to have him attend Gymboree play groups 2-3x/week

9) Rule out other medical issues- metal poisoning, deficiencies, possible seizures

10) Apply for Medicaid waiver

Grief, Self Care and Trusting God

Every since we suspected our son of having autism, I have struggled with waves of grief and severe depression. I know that grief is a part of the process in coming to terms with this. I know that I must allow myself time to grieve and process these feelings I am having. I also know that I somehow have to take care of myself so I can care for my son. If I can't take care of myself I will be of no use to him. 

So, I am allowing myself time to cry. I am talking about my feelings to close friends and family. I reached out to my doctor for antidepressant. I started this blog to help me process what I am going through- an outlet of sorts. I plan to attend a support group in the near future. I am trying to take one day at a time. I am praying ALOT.

I am a Christian. And this event has greatly tested my faith. I have questioned God. I have been angry at Him- Why me? Why Noah???? I don't feel strong enough to carry this load. I know that He will not give me more than I can bear.... but I feel like I can't manage it.

I have to remember these things in my darkest hours: God created Noah for a reason. He is perfect and beautiful in His eyes. Noah has a purpose. This autism diagnosis isn't a surprise to God- it is a surprise to me. God gave Noah to me to care for and I am the right person for the job. He will help me and my family. He will bring us resources and people to help. He will take care of us because He loves us.

So, that is where I am at right now.

We just received a diagnosis for our son Noah

This is my first entry.  I am starting this blog for a few reasons.... to help me process my feelings related to this journey. To document my son's progress and recovery. To meet others that are going through this situation as well.

My 19 month old son Noah was diagnosed with autism spectrum disorder on December 11th, 2012. We have been concerned for quite some time. Last week the doctor confirmed our worst fear. Looking back, I had a gut feeling something wasn't quite right. As time went on I could see the differences between him and other children his age. His cousin, who is two months older, was always very interactive/social. When they spent time together I could see a huge difference in their behaviors. I tried to dismiss my feelings- telling myself that Noah had his own personality and quirks.

Here are some of the behaviors we noticed early on:

9-12 months- lack of eye contact. more interest in objects than people. loved spinning items. closing/opening doors. started daydreaming a lot/"zoning out". paid a lot of attention to details on toys (textures, specific parts). would often stare at lights, fans. shaking his head left to right (like he was saying no)-he would do this at bedtime but we were assured that this was normal.

When Noah was 15 months old,  my mother happened to mention that she was concerned that he wasn't making eye contact with her and that this wasn't normal for a child this age. I immediately went online to do a search on google- up popped all of this information on autism. He had many of the red flag symptoms...

We immediately went to the pediatrician who made a referral to a developmental pediatrician. We were put on a 4 month waiting list and then referred to the early intervention program. He has been receiving one hour of occupational therapy since that time.

Some of the behaviors we see now at 19 months:

eye contact is sporadic
doesn't respond to his name often
stimming behaviors: shaking his head left to right, pacing, hand flapping when excited, spinning wheels, walking on toes from time to time
high anxiety around other children/social groups
does not point or wave
food aversions
delayed speech- says a few words but not purposeful words (doesn't say mama or dada or baba)
zones out

So what is next??? I am trying desperately to get him additional therapy and services. I thought it would be easier now with a diagnosis but I was dead wrong. I am running into brick walls. Waiting lists for 4 to 6 months. Financial limits, no insurance coverage for ABA. No parental training while we wait.

It is just so frustrating---- It is hard enough to receive this diagnosis, and it is made even worse when you can't get him the help he needs. I have purchased books, videos and will educate myself and family until I find training and help. I will keep calling and seeking help. I will keep trying for him. I don't have another choice.