It has been a very trying week for the Dauer's and the teachers. The first week they tried to have her stay in the regular classroom most of the time. It seems to be going pretty well, but with all the extra activities you can tell it is over stimulating for Sydney. I guess Sydney has decided when she is done, and she says "See Ya!!" to the teacher and tries to leave the classroom. She has hit, bit at, and spit towards the teachers and hiding under the tables and refusing to come out. She has escaped the classroom twice, they now understand what we mean by, she is a very fast runner. The only reason the Special Ed teacher caught her the second time is because Sydney looked back while running and didn't realize the floor sloped up. So she tripped. God was taking the teachers side at that point. They have called us twice, about an hour early, to say Sydney is just done for the day. Can you come pick her up? Well, no we can't and she needs to work through it or in our terms, suck it up. I did feel a little bad when I picked her up one day and she had been whimper/crying for an hour before I'd gotten there. Until, we had only walked 3 feet away from the teacher and it stopped. She was super happy and all excited to skip with me back to the car. The Special Ed. teacher called that night about issues and I explained how this is just manipulation on Sydney's part. Especially since there wasn't any tears that I saw of.
Yesterday, Jim figured out why the special ed teacher is having problems. She talks way to nice and tries to explain to Sydney, why. It's just to many words to Sydney to take all in. Yes, I have some fears right now that they are frustrated and may be getting exhausted dealing with her.
Positive note is that she is getting to have recess and lunch with her regular classroom classmates. These are excellent times for social interaction. They are also using her regular classroom as a reward for good behavior. I'm thankful that she loves to go to her regular classroom.
Friday, September 28, 2012
Wednesday, September 26, 2012
Tuesday, September 18, 2012
September 10th, 2012 Dr. Goldberg Teleconference Notes
9/10/12
Teleconference Notes with Dr. Goldberg.
Give Zyrtec at night, not in the morning.
Concerned about HHV-6 labs being the same.
Keep the sugar & carbs down at night.
9/14/12 start to increase Lexapro, 3/4 pill every other day, then 1/2 pill every other day.
2 1/2 to 3 weeks Dr. Goldberg will start a low dose of Tenex(?)
August 23rd, 2012 Weekly Update
The sheet pretty much explains what is going on.
September 18th, 2012
Josh, from Sydney's Autism Center, came to see if he could help in the transition to a regular classroom.
These are the text messages between him and I during his 10am to 1pm shift.
Josh: Sydney is doing really well today. She's been in her Regular Education class since I've been here and I've been here since 10.
Me: So with Ms Lotz?
Josh: Yep. She just finished lunch and sat almost the entire time. She only got slightly restless about 4 minutes before they stood up to leave.
Josh: Writing is next so we'll see how this goes. lol
Me: Awesome. Thanks for the reports.
Me: How is her interaction with the other kids? And how are they with her?
Josh: She's pretty quiet still and getting used to everything and everyone. And when she gets a little distracted, her peers are great at helping her remember what needs to be done and she'll follow through with whatever the task is. At recess, she has been running around with one of her classmates she sits by in class and is taking the lead in we're to go on the playground sometimes as well. She will sometimes go off on her own to go do or play with something, but I noticed that she will rejoin her friend from class to keep playing. And I have only seen her flap/clap her hands once on the playground today.
Josh: *where
Josh: They were just reading a book and she was getting preoccupied with putting her arms through the head hole and wearing her shirt like a halter top. Lol! But she would put it back on correctly and attend to the book again.
Me: So that sounds like a typical 5 year old.
Josh: Exactly. I watched her do handwriting from outside the room. She write her name for Mrs. Lotz. She tried playing a game with Mrs. Lotz after that in order to not write anymore. But Mrs. Lotz followed through and had her write the necessary amount to complete the task. Sydney complied very well. :)
Me: Freakn awesome.
Josh: She was left alone and started shaving the crayon with her nails so I signed for her to stop from outside the room. And she instantly stopped and put the crayon down. It was pretty funny.
Me: Really it just sounds like typical stuff.
Josh: It is. I only intervened that time bc she was starting to chew on the crayon too.
Me: I wonder if they are gluten free?
Josh: If they are crayons crayons, they are gluten free.
Me: OMG. funny
These are the text messages between him and I during his 10am to 1pm shift.
Josh: Sydney is doing really well today. She's been in her Regular Education class since I've been here and I've been here since 10.
Me: So with Ms Lotz?
Josh: Yep. She just finished lunch and sat almost the entire time. She only got slightly restless about 4 minutes before they stood up to leave.
Josh: Writing is next so we'll see how this goes. lol
Me: Awesome. Thanks for the reports.
Me: How is her interaction with the other kids? And how are they with her?
Josh: She's pretty quiet still and getting used to everything and everyone. And when she gets a little distracted, her peers are great at helping her remember what needs to be done and she'll follow through with whatever the task is. At recess, she has been running around with one of her classmates she sits by in class and is taking the lead in we're to go on the playground sometimes as well. She will sometimes go off on her own to go do or play with something, but I noticed that she will rejoin her friend from class to keep playing. And I have only seen her flap/clap her hands once on the playground today.
Josh: *where
Josh: They were just reading a book and she was getting preoccupied with putting her arms through the head hole and wearing her shirt like a halter top. Lol! But she would put it back on correctly and attend to the book again.
Me: So that sounds like a typical 5 year old.
Josh: Exactly. I watched her do handwriting from outside the room. She write her name for Mrs. Lotz. She tried playing a game with Mrs. Lotz after that in order to not write anymore. But Mrs. Lotz followed through and had her write the necessary amount to complete the task. Sydney complied very well. :)
Me: Freakn awesome.
Josh: She was left alone and started shaving the crayon with her nails so I signed for her to stop from outside the room. And she instantly stopped and put the crayon down. It was pretty funny.
Me: Really it just sounds like typical stuff.
Josh: It is. I only intervened that time bc she was starting to chew on the crayon too.
Me: I wonder if they are gluten free?
Josh: If they are crayons crayons, they are gluten free.
Me: OMG. funny
August 17th, 2012 Dr. Goldberg Teleconference Notes
8/17/2012
Question for Dr. Goldberg
- Come back in a year and do another spec scan? Depends on how she is doing and how much our insurance pays or that we can afford. I told him that we defiately want to have a scan done.
- Why a spec scan over a PET scan?
- Shots, DTAP #4 & #5 and PCV #4? Wait at least a month, then spread them out at least a month apart.
- Foods? Have submitted several and haven’t heard back yet. No Soy, Eggs, Mushrooms, grains and nuts. Use Goat Milk. No organic evaporated cane syrup, evaporated cane juice, coconut butter, no cookies, sorghum flour.
- Effects of Lexapro? How long should it take to adjust? What results should we see from this? Look for sharpness in the eyes and more alert.
- How often are we going to check on the HHV-6? Every 2 months
Things to look for:
Sharpness in the eyes. Alert/Tired?
Work on:
Work on CD Rom List at home. Start at a toddler. Example- Blue, lets see what is blue in the house. Mininuim 20 minutes to 30 minutes of compliance.
Start Public school, after 2 weeks of school, pull class aside and explain Sydney’s virus and how it has affected her.
Food Allergy Test: Redo the test again in 6 to 8 months. Which would be Jan - March 2013.
August 15th, 2012 Weekly Update
August 10th, 2012 Weekly Update
Also, we noticed a lot of holding her hands over her ears. She never complained but seemed to need to do this. The teachers noticed if they pressed on her head it seemed to give her relief.
August 3rd, 2012 Weekly Report
July 27, 2012 Weekly Report
We are required to send weekly reports to Dr. Goldberg. Which actually is a great way to keep track of Sydney's progress.
Monday, September 17, 2012
Having our first appointment with Dr. Goldberg
I owe everything to a coworker of mine. They brought to my attention Dr. Goldberg. After filling out paper work for hours and getting it sent off, we finally got a call. Our first appointment with Dr. Goldberg was July 19th, 2012. He had scheduled us for an appointment for a SPECT scan on July 17th, 2012.
We spent 3 1/2 hours in the office with Dr. Goldberg. He went over labs, SPECT scan and her whole history. Looking at the SPECT scan was a little overwhelming. But his words of "I know what is wrong with your daughter and I can help" can't be described to anyone that has not gone through this.
There is a virus in Sydney's brain that had caused the Autistic traits. Also, parts were over stimulated and others inactive. Dr. Goldberg felt that Sydney never was autistic.
One question I've always had was why hadn't anyone ever done a scan of Sydney's brain before. I had asked the neurologist when she was diagnosed but was told that was NOT necessary. Remember that was 3.5 years ago. Recently I'd been reading about psychological diagnosis, which is where Autism is lumped in with, could be seen in brain scans. Such as bipolar, depression, ADD, schizophrenics and such. So why has autism NOT been a part of these scans?
The virus is called Herpes 6 or the technical name HHV-6. We started her on Valtrex on July 21st, 2012. This would start what is called the dyeing off period. It lasts up to 3 1/2 weeks and makes them very cranky. On day 4, her older sister Zoe announced the medicine must be working.
We also were instructed to change her diet. We didn't know how much more restricted we could go. She already couldn't have soy, dairy, gluten, preservatives, dyes. Now they wanted to restrict any thing berry, tropical fruit, coconut, and we still aren't sure we understand the whole thing. So I take pictures of the ingredients label and email to the office for a ya or nay. They do try to explain. The reason for this is because of the over stimulated parts of her brain. We want to try and calm them down so she can concentrate. Dr. Goldberg was surprised that she has never had a seizure. Her frontal lope were very over stimulated.
We spent 3 1/2 hours in the office with Dr. Goldberg. He went over labs, SPECT scan and her whole history. Looking at the SPECT scan was a little overwhelming. But his words of "I know what is wrong with your daughter and I can help" can't be described to anyone that has not gone through this.
There is a virus in Sydney's brain that had caused the Autistic traits. Also, parts were over stimulated and others inactive. Dr. Goldberg felt that Sydney never was autistic.
One question I've always had was why hadn't anyone ever done a scan of Sydney's brain before. I had asked the neurologist when she was diagnosed but was told that was NOT necessary. Remember that was 3.5 years ago. Recently I'd been reading about psychological diagnosis, which is where Autism is lumped in with, could be seen in brain scans. Such as bipolar, depression, ADD, schizophrenics and such. So why has autism NOT been a part of these scans?
The virus is called Herpes 6 or the technical name HHV-6. We started her on Valtrex on July 21st, 2012. This would start what is called the dyeing off period. It lasts up to 3 1/2 weeks and makes them very cranky. On day 4, her older sister Zoe announced the medicine must be working.
We also were instructed to change her diet. We didn't know how much more restricted we could go. She already couldn't have soy, dairy, gluten, preservatives, dyes. Now they wanted to restrict any thing berry, tropical fruit, coconut, and we still aren't sure we understand the whole thing. So I take pictures of the ingredients label and email to the office for a ya or nay. They do try to explain. The reason for this is because of the over stimulated parts of her brain. We want to try and calm them down so she can concentrate. Dr. Goldberg was surprised that she has never had a seizure. Her frontal lope were very over stimulated.
Leading Up to the Official Diagnosis
The end of January of 2008, we noticed something had changed in our daughter. She wasn't aware of what was going on around her. Just in her own little world. If fact she didn't response to us either, her own parents. Jim and I sat down to discuss what we were witnessing. Within a month or so Jim brought up Autism to me. I researched it and no she didn't fit the key points of no affection or isolating herself or playing with spinning things. So it was dropped.
In July of 2008, I set up to have her hearing tested. Her first test was below average, but not low enough to say she had a "Problem". This was done in the office, in a box, that had a sound come out of the left or right side of it. The a little stuffed animal lite up on the side the sound was coming from. I didn't feel like it was accurate at all, since Sydney only looked that way when the light came on for the animal. I asked about doing a more accurate test for her age. Auditory Brainstem Response (ABR)
A test that uses electrodes (wires) attached with adhesive to the baby's scalp. While the baby sleeps, clicking sounds are made through tiny earphones in the baby's ears. The test measures the brain's activity in response to the sounds. As in EOAE, this test is painless and takes only a few minutes. The results, "Good news, her hearing is normal." But I just walked out of there even more confused. That made no sense for how she was acting. Now what?
I called First Steps to ask for assistance with her speech. Before, when I had called for Zoe they wouldn't even do an evaluation. Now they were asking how soon could we set up an evaluation. In August of 2008, Sydney started speech therapy plus another therapy that was suppose to assist the speech therapy. During that time we were introduced to Signing Time, a form of sign language for young kids. Boy did Sydney take to that. She loved it. The best thing was we found if she could sign the word and visualize it, then she would try say it. Of course, this is over a 6 month time frame that we began to start using signing to try and say a word. One of the therapist asked if I'd ever heard of Autism. No, never. She just politely said that she couldn't offer anything else but I might want to do some research and had I ever heard of a sensory diet? No again. What do you eat on that? It's not that kind of diet, it physical.
September of 2008, my parents are over for dinner and my dad says they would like to talk to us. We send the kids in the other room and sit down to see what's up. My Dad asks if we have ever looked into Autism. Why yes I have, she loves affection. She is always wanting hugs. My parents point out that only from Jim and I. And we always give her full body, big hugs. I asked my dad if he had done his homework, which I knew was a silly question. Then why don't you print off what you've read to support your theory and show me what you mean. The next day I was at work and Jim at home. We didn't know that both of us were on the internet checking out what my dad had said. Well we called each other and asked if the other one had looked on line yet. Then dead silence. We both knew that we needed more help for our little girl.
Which by the way, this whole time our pediatrician would tell me not to worry. Sydney didn't talk because Zoe and her were 17 months apart. We've had 5 children between the two of us. We knew it was more than that. In fact, she never was any help and I ended up firing her and finding someone new. This doctor was in more denial about Autism then I was.
In October of 2008, First Steps also evaluated her for Occupational Therapy. We were told she should be on a sensory diet. I told them she was already on a gluten-casein free diet. LOL. No sensory meant something completely different. We had to brush her and do joint compression so many times a day. Then swing her, with a twirl. But look to see if she changes colors or her eyes move back and forth to fast. This means she has had enough or to much. Then the therapist wanted to use paint and play dough. Really??? The 2 least favorite things of mine to pick up in my house. But here we are playing with play dough. She put Sydney in a bag of ball pit balls and would shake her around. Sydney loved it so much, I found one a bought it. Funny thing was, both Zoe and Sydney would get into the bag and want to be thrown around together. It ended up becoming a favorite event with kids that came over.
Still Updating::::
We first got Sydney's diagnose of having Autism, in December 2008, just a few days before her birthday.
We also got on a list with Touchpoint to help families with Autistic kids and how to deal with compliance. Well, this process was not fun at all. We had to make her ask for something. She had never asked before, because of her 17 month older sister, who did the asking, Sydney just patiently reaped the benefits. The first tantrum we had lasted 3 hours. The hitting, screaming and throwing herself was horrible. We knew we had to stay strong and luckily I had to go to work. So poor Dad got to finish the tantrum, and won. Over the next couple of months the tantrums got fewer and fewer, plus not lasting as long either.
In July of 2008, I set up to have her hearing tested. Her first test was below average, but not low enough to say she had a "Problem". This was done in the office, in a box, that had a sound come out of the left or right side of it. The a little stuffed animal lite up on the side the sound was coming from. I didn't feel like it was accurate at all, since Sydney only looked that way when the light came on for the animal. I asked about doing a more accurate test for her age. Auditory Brainstem Response (ABR)
A test that uses electrodes (wires) attached with adhesive to the baby's scalp. While the baby sleeps, clicking sounds are made through tiny earphones in the baby's ears. The test measures the brain's activity in response to the sounds. As in EOAE, this test is painless and takes only a few minutes. The results, "Good news, her hearing is normal." But I just walked out of there even more confused. That made no sense for how she was acting. Now what?
I called First Steps to ask for assistance with her speech. Before, when I had called for Zoe they wouldn't even do an evaluation. Now they were asking how soon could we set up an evaluation. In August of 2008, Sydney started speech therapy plus another therapy that was suppose to assist the speech therapy. During that time we were introduced to Signing Time, a form of sign language for young kids. Boy did Sydney take to that. She loved it. The best thing was we found if she could sign the word and visualize it, then she would try say it. Of course, this is over a 6 month time frame that we began to start using signing to try and say a word. One of the therapist asked if I'd ever heard of Autism. No, never. She just politely said that she couldn't offer anything else but I might want to do some research and had I ever heard of a sensory diet? No again. What do you eat on that? It's not that kind of diet, it physical.
September of 2008, my parents are over for dinner and my dad says they would like to talk to us. We send the kids in the other room and sit down to see what's up. My Dad asks if we have ever looked into Autism. Why yes I have, she loves affection. She is always wanting hugs. My parents point out that only from Jim and I. And we always give her full body, big hugs. I asked my dad if he had done his homework, which I knew was a silly question. Then why don't you print off what you've read to support your theory and show me what you mean. The next day I was at work and Jim at home. We didn't know that both of us were on the internet checking out what my dad had said. Well we called each other and asked if the other one had looked on line yet. Then dead silence. We both knew that we needed more help for our little girl.
Which by the way, this whole time our pediatrician would tell me not to worry. Sydney didn't talk because Zoe and her were 17 months apart. We've had 5 children between the two of us. We knew it was more than that. In fact, she never was any help and I ended up firing her and finding someone new. This doctor was in more denial about Autism then I was.
In October of 2008, First Steps also evaluated her for Occupational Therapy. We were told she should be on a sensory diet. I told them she was already on a gluten-casein free diet. LOL. No sensory meant something completely different. We had to brush her and do joint compression so many times a day. Then swing her, with a twirl. But look to see if she changes colors or her eyes move back and forth to fast. This means she has had enough or to much. Then the therapist wanted to use paint and play dough. Really??? The 2 least favorite things of mine to pick up in my house. But here we are playing with play dough. She put Sydney in a bag of ball pit balls and would shake her around. Sydney loved it so much, I found one a bought it. Funny thing was, both Zoe and Sydney would get into the bag and want to be thrown around together. It ended up becoming a favorite event with kids that came over.
Still Updating::::
We first got Sydney's diagnose of having Autism, in December 2008, just a few days before her birthday.
We also got on a list with Touchpoint to help families with Autistic kids and how to deal with compliance. Well, this process was not fun at all. We had to make her ask for something. She had never asked before, because of her 17 month older sister, who did the asking, Sydney just patiently reaped the benefits. The first tantrum we had lasted 3 hours. The hitting, screaming and throwing herself was horrible. We knew we had to stay strong and luckily I had to go to work. So poor Dad got to finish the tantrum, and won. Over the next couple of months the tantrums got fewer and fewer, plus not lasting as long either.
September 17th, 2012 FIRST DAY!!
Sydney started her first day of public school today. We weren't sure if she really understood what was going to happen today, but when she saw all the kiddos she was so excited. As we walked into the school she insisted that she wear her backpack. You know all the other kids were, so she wanted to too. It was just so heavy with all the new school supplies. I had bought her a new backpack and lunch box last week so she would be familiar with them before hand. She had a very warm reception entering her classroom. A couple of little girls came over to show her where her seat was. It was awesome to see everyone excepting her, for her.
Jim picked her up from school and was told it was a good first day. She had only bolted out of a class once and only a few melt downs. The teachers were already being tested by her. To me, this is fabulous. Her regular teacher said that Sydney had had a lot of helpers today. She was exhausted by 230pm. It looks like we have a good team started at Ozark North Elementary.
Jim picked her up from school and was told it was a good first day. She had only bolted out of a class once and only a few melt downs. The teachers were already being tested by her. To me, this is fabulous. Her regular teacher said that Sydney had had a lot of helpers today. She was exhausted by 230pm. It looks like we have a good team started at Ozark North Elementary.
Saturday, September 15, 2012
I've been asked to start a blog so I can get the word out of what our family has gone through after our youngest daughter was diagnosis with Autism. If I can just help shorten one other families time dealing against this, it will be worth it. Please bear with me as I figure out what and how to blog.
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