Tuesday, January 29, 2013

Creating a Timeline and Vaccines

I have been completing initial paperwork for our upcoming CEASE therapy consultation. They ask a lot of detailed questions on these forms and they want to know what vaccines were given and the responses he had to those vaccines. I had a hard time remembering everything Noah has received so I ordered his entire medical record. I created a timeline detailing vaccines and sicknesses/symptoms over the course of the last 20 months.

What the timeline revealed sickened me completely. I have always questioned what exactly caused Noah's autism but was never 100% sure that vaccines were the culprit. He did not have a severe reaction to any vaccine he was given....However, after viewing the timeline it is hard to think that they did not have a direct impact on his current condition.

The timeline showed that in a 9 month period he received 14 vaccinations. At about 6 months he broke out in eczema. After receiving all of the vaccines, including the flu shot he became sick over and over and over with recurrent ear infections (4 to be exact) and he was treated then with 5 rounds of antibiotics. Looking back at pictures, we feel certain that things began to go downhill at this point (9 to 12 months- immediately after these vaccines were given). He stopped smiling at the camera, started zoning out, not giving good eye contact.... it was gradual enough that we didn't even see it... didn't even connect it to anything. The timeline has revealed some connection. It may not be the only reason but I think it is a huge factor.

So much heartache... so many regrets. Wish I could turn back the hands of time. If only I had known.... You trust that your doctor is doing the right thing- I can't trust anymore. I will be forever paranoid... I will question everything.

~~~Lord, Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference~~~

Wednesday, January 23, 2013

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.

Watching Home Videos

I watched a home video of Noah last night, 6 months ago, when he was 15 months old. This was around the time we suspected a problem but we weren't 100% sure.  I was shocked to see his behavior in this video. He was watching a TV show- In about 4 minutes of video I saw him flap his hands, walk on his tip toes, shake his head, have facial tics and was very unsteady on his feet. How did we not see this?

Now, I am nervous to watch earlier videos. What if the symptoms were always there? I would blame myself for not picking up on the signs/symptoms and not intervening sooner.

I think that reviewing home videos can be a good tool to help parents figure out when the changes occurred with their child. I just don't know if I am ready yet to review those earlier videos. It will hurt my heart too much.

Thursday, January 17, 2013

God Answers Prayers

I have had some wonderful news lately and I know without a shadow of a doubt that God is answering our prayers.

ABA therapy- we were on a waiting list that was 4 to 6 months long. I have been sooo upset at the wait time so I asked for a meeting with the director to see if she may be able to train us/provide advice of what we should do in the meantime. I met with her this past Monday. She is a BCBA and she spent a lot of time with me discussing Noah. At the end of our meeting she not only offered to train me and my family (for free!) to do ABA while we waited but she also bumped us up on the waiting list. We were told we only have to wait 4 weeks now, but I was just informed today it can start in 2 weeks!!!! This is a huge answer to prayer.

Financial Coverage- this has been one of the most stressful aspects for us- how are we going to afford the enormous costs of this therapy/treatment for Noah??? I was told last year that my child's insurance did not cover any ABA therapy. That we would have to foot the entire bill.... so that meant we could only afford the bare minimum..... so fast forward to today--- the counseling agency told me that many insurances are starting to cover this therapy and to check into it. I called not thinking much of this- and I was told that there is now an AUTISM BENEFIT to his insurance!!!!! What????!!!! I couldn't believe my ears! I still don't know what exactly this means but it is a good sign whatever it is. Any help is more than nothing. This is also a huge answer to prayer.

In the worst of times, God is still there. It may not feel like it, but then things like this happen and you just know that He has been there through it all. THIS was the hand of God. I know without a DOUBT in my mind that God has been with us through the tears, the heartache, the fear... He has heard my desperate pleas for help and He has answered.

My heart is full of thankfulness. This has given me a much needed boost and hope that good days are ahead. That things will get better. Thank you Lord.

Friday, January 11, 2013

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.


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.

Thursday, January 10, 2013

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

Monday, January 7, 2013

Noah's Pediatrician visit and an update

Today we took Noah to visit a new pediatrician. He was highly recommended by our OT and he specializes in autism. His son is also autistic.

The visit did not go as I had planned. While the doctor was very nice and willing to talk to us in length about Noah he dismissed some of the concerns I was having.  I have noticed a rash on and off since Noah went on probiotics. He chalked it up to a heat rash.... I don't agree. We talked about possible problems with yeast and the doctor said that a lot of information "out there" in books/internet isn't true.

He says that intensive ABA therapy for at least 20-25 hours a week is the only proven treatment for autism. He says vaccines do not cause autism. He told me that I didn't need to keep Noah on a probiotic long term and that other biomedical interventions are not shown to be effective ways of treating autism.
He checked Noah's ears and said they looked okay. That was basically it.... So, I am not sure we will see him going forward.

In other more exciting news, we have scheduled an appointment for Noah to see a well known DAN! doctor in Richmond. Dr. Mary Megson. I am very excited that she is willing to see him. He will see her on February 26th. I think she will do a more comprehensive exam and testing so we can rule out underlying medical conditions/concerns.

Noah has been doing fairly well. He is playing with age appropriate toys now. We still have to monitor him so that he won't fixate on certain parts of the toy (pressing one button). He is trying to use more words. Some of the words we are hearing often are: eat, dada, eieio, row row, close, cold, bye, baby (he is trying to say a lot of words but it is hard to understand what he is saying most of the time). He is signing "more", "milk" and "eat" and using the goodbye gesture. Eye contact is still sporadic. We are really working on this and providing reinforcements when he gives good eye contact. We are withholding items and stopping in the midst of his favorite songs/activities so he has to try to say the word or part of the word to get what he wants. This seems to be helping him. He is starting to understanding the importance of communicating in some way to get what he wants. He is doing well in Gymboree too. He is not crying any longer and will play in the gym. He is also sitting on the mat during the activities and observing the other children.

We are still on the waiting list for ABA therapy, speech therapy and the Medicaid waiver application is still processing. In the meantime, we are researching and reading and trying to conduct some of our own therapy with Noah.