So our 3 week break from CEASE has turned into a 2 month break. Life happens and it has impacted our CEASE plans. From work changes to sicknesses, to a sprained neck last week I have not had the energy to commit to CEASE. Thankfully, I am feeling much better and I am gearing up to start the DTaP clearing with Noah next week. We have all of the remedies and we are starting back his vitamin C this week. I will keep everyone posted on how our first week back goes.
Today was an amazing day! We all took the day off today and went to Richmond VA to see a well known DAN! doctor. Before our doctor's appointment I decided I wanted to try and schedule a haircut for Noah at a children's salon in Richmond I had heard great things about. I was prepared for possible issues with the haircut because he has had such a problem with sensory issues around his head. He hates washing his hair, brushing his hair and has freaked out when I have tried to cut his hair. Well today he did AMAZING. No issues AT ALL! I was stunned! He sat in a little red jeep, watching a Barney video and eating cookies and could have cared less that his hair was getting cut! I am so thrilled about this!!!! And he looks like a clean cut little man.
Then we went to the DAN! doctor appt. The reason I wanted Noah to meet with this doctor was so that testing could be done. Don't get me wrong, I am very pleased with CEASE and homeopathy but I would love to know what is going on internally in Noah's body--- does he have bad bacteria and yeast in his gut? Don't know... does he have high levels of metal in his body? no clue.... is he allergic to any foods? Or deficient in vitamins and minerals? So, that is my main reasoning. Once I learn what is going on I hope that homeopathy will continue to address some of these issues. One thing the DAN! doctor said during our 2 hour meeting floored me and was so encouraging- She said "I believe you guys are going to pull him out of this." She feels that recovery is a great possibility for Noah. She said he will only "get better and better" with the proper interventions. So that was so good to hear. I already felt it in my heart but having confirmation was so encouraging.
So that is a quick update on how things have been. I am nervous about the next clearing but very excited to see what is in store for Noah. He is just blossoming right now and I know with more time and healing we will see great things.
Showing posts with label DAN doctor. Show all posts
Showing posts with label DAN doctor. Show all posts
Tuesday, October 1, 2013
Friday, February 1, 2013
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.
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.
_____________________________________
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.
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.
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.
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.
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