We went to NJ to visit the PA at Dr.N's office, our first Dan! visit. It was strange. It is about 6 hours from our house and with two kids and two jobs it was hard to organise and travel by car. Well, we made it.
Friday, our plan was to leave by 7.30 pm so that we would have been in NJ by 2.00 am.I even booked tickets to a hotel but about half way through S started screaming and we had to take the nearest exit to check in to holiday inn in a small place called Gibson PA.
We slept well and woke up refreshed and started on ward on our journey to meet the PA at Dr.N's office.
The office itself was in a pink building and it was dirty and small . The play room where we needed to leave big sister D was in a sorry state with none of the toys working,books torn.
The bathroom was extremely dirty.
Now, I dont know about other dans. but when you call for a new pt appt with Dr.N,the first thing they do , is take your credit card info so that they dont lose if you no show for the appt.Fair enough.
Then they give you a password and you are supposed to log in to their website using this, download some forms and get them with you for the first appt.
The paper work per the office takes at least ten hours... yes, you heard right, TEN hours.
Well of course I did it meticulously, the questions were tooo detailed, too nonsense...
when we walked in and handed in the papers, he told us that he will reveiw them later and that he will start So mB12.. WHAT?
opened his file cabinet and showed us the needle ...and showed us how to do ti.
NO other reccomendations .. he asked us ifwehad any questions.
My husband had few , he is innocent,his question was,...why do kids get this- autism.
Naive..right?
the answer... there are many causes... why dont I show you how to give the shot?
He was in a rush to leave I guess..
we were not satisfied.
Anyway, we did not go there to socialise but to get the b12shots and now we have a plan.
We will report back to them by phone in six weeks.
The funniest part is the physical exam that he did.....whom was he trying to fool?
What does a DAn doctor get by examing the lungs, ears, heart....
The whole thing about the zillion paperwork tob e done is all hype, and so is the physical exam part.
I only hope the mb12 helps.
Sunday, March 29, 2009
Tuesday, March 17, 2009
physical therapy evaluation
S had a physical therapy evaluation. He qualified for services!! I am hoping that S would stop qualifying for everything like this.
Anyway.Main issues of concern
1.Does not jump. down from a height or in the same place.
2.Does not throw or kick a ball.
3.Can use a ride on toy and scoot with both feet only when motivated.
4.Some low tone in upper body.
5.Prefers to use right hand more and need to coordinate use of both hands.
6.Push and pull heavy objects.
7.toe walks a lot these days.
8.As a result of toe walking , his calf muscles are getting bigger. That may result in some problems in feet but none detected yet.
They are going to come once a week.
S has access to a trampoline at day care, with spring coming up and more outdoor time, I think he will thrive.
Anyway.Main issues of concern
1.Does not jump. down from a height or in the same place.
2.Does not throw or kick a ball.
3.Can use a ride on toy and scoot with both feet only when motivated.
4.Some low tone in upper body.
5.Prefers to use right hand more and need to coordinate use of both hands.
6.Push and pull heavy objects.
7.toe walks a lot these days.
8.As a result of toe walking , his calf muscles are getting bigger. That may result in some problems in feet but none detected yet.
They are going to come once a week.
S has access to a trampoline at day care, with spring coming up and more outdoor time, I think he will thrive.
sleeping
We are trying to figure out what is the number of hours of sleep that S needs for "optimum performance".
Last week,one day, S slept for a totally unknown reason 11 hours at night and maybe 1 hour nap in the afternoon.
His speech therapist commented that " this is a differerent child and we want this kid, I dont know what you did to him".
Last night was 8 hours, which considering his track record, is still pretty good.
We do co sleep and for some reason, he liked the material of my blouse, it was like a t shirt type thing, and he kept touching it. He woke up at 5.15 am.
I was trying to get him back to sleep till 6.30 am , futile.
Then it stuck me, that i could use that am time for floortime instead of after work, when S is winding down.
Maybe me trying to do floortime and getting him all excited is preventing a good night's sleep.
So here is the plan,
When S wakes up early like 5.30 am, try for no more than 10 min to get him back to sleep, if he does not , use that time to play for 20-30 min which is great.
That will also probably get us all in the habit of eating a healthy breakfast instead of just milk and I will be on time for work.
In the evening, starting about 6.00 pm, I am going to dim the lights, soothing tones, massages, rocking so ultimately he can be ready for bed around 8.30-9.00 pm.
I am still going to use this quiet time for a different kind of floortime.
Last week,one day, S slept for a totally unknown reason 11 hours at night and maybe 1 hour nap in the afternoon.
His speech therapist commented that " this is a differerent child and we want this kid, I dont know what you did to him".
Last night was 8 hours, which considering his track record, is still pretty good.
We do co sleep and for some reason, he liked the material of my blouse, it was like a t shirt type thing, and he kept touching it. He woke up at 5.15 am.
I was trying to get him back to sleep till 6.30 am , futile.
Then it stuck me, that i could use that am time for floortime instead of after work, when S is winding down.
Maybe me trying to do floortime and getting him all excited is preventing a good night's sleep.
So here is the plan,
When S wakes up early like 5.30 am, try for no more than 10 min to get him back to sleep, if he does not , use that time to play for 20-30 min which is great.
That will also probably get us all in the habit of eating a healthy breakfast instead of just milk and I will be on time for work.
In the evening, starting about 6.00 pm, I am going to dim the lights, soothing tones, massages, rocking so ultimately he can be ready for bed around 8.30-9.00 pm.
I am still going to use this quiet time for a different kind of floortime.
Sunday, March 15, 2009
Busy weekend
It is late now but I still want to write because I just finished one round of crying.
In many ways, I am relieved, I havent cried in a while. Unfortunately, I have to cry privately.My DH cannot stand it.
The reason I am writing is that I want to celebrate the many things we accomplished this weekend. and to analyse, what happened a few hours ago for me to have a complete meltdown??
Well, first of all, Friday was nice, dad gave S a great foot massage and he was down sleeping in half hour. we woke up the next morning, and had a mini argument. Well... it was about going outside for breakfast, We usually go to the nearby coffee shop and I wondered if we should try something new, and as usual, my husband did not want to. And as usual , I was not saying or suggesting this for myself.. it is always for S and him to have some new exposure.
Anyway, I got tired just convincing everybody to get out for breakfast, both kids had milk and then later had cereal, lunch was ready, D was taken for dance lessons and I put s down in his play pen for his nap on time.
He screamed bloody murder .. tried hard to get out and finally fell asleep on time.
I had two patients in the hospital and quickly went and completed my rounds and notes and got back before he woke up.
Then we all went to the childrens museum.This is the second time we have gone and mainly inspite of my fatigue and lethargy, I pushed myself for the kids.
Sanjay is slowly getting used to the carousel, the toy train, the other things, the crowds, the people( whom he does not notice), .... but he will.
I have been to this museum when D was little then, stopped.
there were a lot of interesting things written all over the museum which caught my eye.
" Play is the earliest form of learning"
"Play begins with anticipation" Ready set ... go.
I dont remember the others, but boy.. I never thought of play in that sense ... but S does not know how to play?
We got back and on the way bought pizza and the kids had a ball !!!
Sunday morning, we did go for breakfast to the coffee shop .. I loved it. I like to get an early start on my weekends , that gives me the most mileage. I hate to wake up late and drag my feet ( which is what I usually do).
Got back, did more play, and had lunch, nap and finished work at the hospital.
Then got back, played some more and went outside, the temp in 40-50s and played.. then went to petsmart. D wanted to see kitties and wants one desparately, ... NO thanks.
I also hope that S would take some interest in the birds, fish at petsmart,
No luck there.
it will come.
It has to come.
we came back, played more outside and came inside and then nothing. just chilled. meaning kids watched tv and S stimmed. Fine... big deal.Sometimes we all need to.
My mil called me, usually she is my strength and inspiration. She makes me feel good. She did make me feel better but she asked me what the doctors felt about S and I told her that autism is a incurable disorder. She was shocked and so was I !
I said it.
Autism is a incurable disease.
I could not stand it. I immediately started telling her about the various success stories of kids who are doing well/recovered?? around me...
I kept getting sucked into this mode and finally cried.why me, why S, please God help me... mode.
I am better now.
In many ways, I am relieved, I havent cried in a while. Unfortunately, I have to cry privately.My DH cannot stand it.
The reason I am writing is that I want to celebrate the many things we accomplished this weekend. and to analyse, what happened a few hours ago for me to have a complete meltdown??
Well, first of all, Friday was nice, dad gave S a great foot massage and he was down sleeping in half hour. we woke up the next morning, and had a mini argument. Well... it was about going outside for breakfast, We usually go to the nearby coffee shop and I wondered if we should try something new, and as usual, my husband did not want to. And as usual , I was not saying or suggesting this for myself.. it is always for S and him to have some new exposure.
Anyway, I got tired just convincing everybody to get out for breakfast, both kids had milk and then later had cereal, lunch was ready, D was taken for dance lessons and I put s down in his play pen for his nap on time.
He screamed bloody murder .. tried hard to get out and finally fell asleep on time.
I had two patients in the hospital and quickly went and completed my rounds and notes and got back before he woke up.
Then we all went to the childrens museum.This is the second time we have gone and mainly inspite of my fatigue and lethargy, I pushed myself for the kids.
Sanjay is slowly getting used to the carousel, the toy train, the other things, the crowds, the people( whom he does not notice), .... but he will.
I have been to this museum when D was little then, stopped.
there were a lot of interesting things written all over the museum which caught my eye.
" Play is the earliest form of learning"
"Play begins with anticipation" Ready set ... go.
I dont remember the others, but boy.. I never thought of play in that sense ... but S does not know how to play?
We got back and on the way bought pizza and the kids had a ball !!!
Sunday morning, we did go for breakfast to the coffee shop .. I loved it. I like to get an early start on my weekends , that gives me the most mileage. I hate to wake up late and drag my feet ( which is what I usually do).
Got back, did more play, and had lunch, nap and finished work at the hospital.
Then got back, played some more and went outside, the temp in 40-50s and played.. then went to petsmart. D wanted to see kitties and wants one desparately, ... NO thanks.
I also hope that S would take some interest in the birds, fish at petsmart,
No luck there.
it will come.
It has to come.
we came back, played more outside and came inside and then nothing. just chilled. meaning kids watched tv and S stimmed. Fine... big deal.Sometimes we all need to.
My mil called me, usually she is my strength and inspiration. She makes me feel good. She did make me feel better but she asked me what the doctors felt about S and I told her that autism is a incurable disorder. She was shocked and so was I !
I said it.
Autism is a incurable disease.
I could not stand it. I immediately started telling her about the various success stories of kids who are doing well/recovered?? around me...
I kept getting sucked into this mode and finally cried.why me, why S, please God help me... mode.
I am better now.
Thursday, March 12, 2009
calender
we started S on half teaspoon of flax seed starting 3/10/09.
next we are going to start on 3/24
Nordic Naturals Pro Omega liquid, ½ teaspoon
once a day alternating with Nordic Naturals Artic Cod Liver Oil, 1
teaspoon daily.
We got to see dan doc on 3/28 and probably start Vit 12 a week later.
next plan depending on how that goes.
We will not make any plans for DMG/tmg or probiotic etc until we see how vit b12 goes.
concurrently attempts to sleep better and wean away casein by may.
Starting end may/June start gltueein free .
On 3/17 one week of flax Iwill report what changes we are seeing.
next we are going to start on 3/24
Nordic Naturals Pro Omega liquid, ½ teaspoon
once a day alternating with Nordic Naturals Artic Cod Liver Oil, 1
teaspoon daily.
We got to see dan doc on 3/28 and probably start Vit 12 a week later.
next plan depending on how that goes.
We will not make any plans for DMG/tmg or probiotic etc until we see how vit b12 goes.
concurrently attempts to sleep better and wean away casein by may.
Starting end may/June start gltueein free .
On 3/17 one week of flax Iwill report what changes we are seeing.
Wednesday, March 11, 2009
Doctor visit contd
We had other questions too.
1.Cilantro: she did not know much.
2.Is there any natural remedy for increasing speech? alternative and she seemed to like the idea of DMG and TMG.. I dont know much about them but these discussions are in the parking lot.
I am planning to go ahead with the diet changes, we are already trying to get rid fo casein and it is hard since S is such a big milk drinker and does not like eggs and where and how should I give him protein?
Almond milk is kind of pathetic.
So plan... this weekend, I am going to try the coconut milk, and coconut milk yogurt and try increasing the substitution.
And I am planning to meet her again in June.
Meanwhile we have another appt set up for Dr.N dan in New Jersey mainly to get started on vit B12 shots.
We have about 10 hours .. yes 10 hours worth of paper work prior to the appt.
I am excited about them.
This naturopathic doc seemes to think, Vit B12 shots are only trial and error, very individulaised.
Oh, and another thing, she told us that she does not like to call everything "yeast" and so does not blindly prescribe diflucan. Instead she likes the testing. she gave us a stool test kit and after we get results from that , she may decide if that is needed.
About the food , she explained that there are two types of reactions,
Immediate hypersensitivity reactions aka allergic reactions which mount IgE antibodies
Delayed hypersensitivities are those which auties might have, which cause slow reactions, irritability etc and not neccasairty the allergic reaction per se. We measure these by Ig G.
Now , the strange part is that she said that even if S is not having hypersensititiy to anything, she would still reccommend the stopping of milk and glutein for about 4-6 months as a test and then reintroduce a few months later.
1.Cilantro: she did not know much.
2.Is there any natural remedy for increasing speech? alternative and she seemed to like the idea of DMG and TMG.. I dont know much about them but these discussions are in the parking lot.
I am planning to go ahead with the diet changes, we are already trying to get rid fo casein and it is hard since S is such a big milk drinker and does not like eggs and where and how should I give him protein?
Almond milk is kind of pathetic.
So plan... this weekend, I am going to try the coconut milk, and coconut milk yogurt and try increasing the substitution.
And I am planning to meet her again in June.
Meanwhile we have another appt set up for Dr.N dan in New Jersey mainly to get started on vit B12 shots.
We have about 10 hours .. yes 10 hours worth of paper work prior to the appt.
I am excited about them.
This naturopathic doc seemes to think, Vit B12 shots are only trial and error, very individulaised.
Oh, and another thing, she told us that she does not like to call everything "yeast" and so does not blindly prescribe diflucan. Instead she likes the testing. she gave us a stool test kit and after we get results from that , she may decide if that is needed.
About the food , she explained that there are two types of reactions,
Immediate hypersensitivity reactions aka allergic reactions which mount IgE antibodies
Delayed hypersensitivities are those which auties might have, which cause slow reactions, irritability etc and not neccasairty the allergic reaction per se. We measure these by Ig G.
Now , the strange part is that she said that even if S is not having hypersensititiy to anything, she would still reccommend the stopping of milk and glutein for about 4-6 months as a test and then reintroduce a few months later.
meeting with doctor
We got to know about this doctor through many people. Apparently she has a good reputation here.
She is board certified in pediatrics and decided to get certified in integrative medicine and got some training under Andrew Weil. I have never heard of him but checked him out online.
And she has been doing this for about two years. Per her, she does not do any shots, chelation etc and follows the dan principles and practices evidence based medicine about herbs, nutrition and natural ways of healing.
She met with DH and me and got some basic background.. regarding our family and S.
and we expressed our concerns.
1.Autism and not improving much despite a lot of therapy.
2.Eye contact remains poor
3.lack of sleep- most important right now.
4.constipation.
Take home points from her.
1.She has seen a lot of kids improve on gfcf and wants us to try it, gradually. She was really pushy about this. That disappointed my husband who feels that it is going to be really hard for S.
2.Super Nu thera: hold off for now. it made my son a little hyper. reason: it has about 10,000 times the requirement of vit B6 and that can make people hyper and the syrup is made with artificial sweetner base.
we decided to introduce multivitamin later.
3.Coromega: ok per her, and she gave us a suggestion of a concentrated omega 3 on line, which I will post later.
cod liver oil: postponed for now.
4.sleep: melatonin start very low dose , and can try valerian root, all over the counter,.
can try baths with epsom salt.constipation may also affect his sleep.
5.for constipation : suggested flax seed meal: in a powder format in yogurt.
Again ,she stressed that she expects us to get rid of all the casein and glutein in a few months.
talked to us about coconut milk yogurt, and coconut milk etc.
right now we are giving him about half of almond milk which is poor in protein etc and so she had some more suggestions too about protein supplementation.
She is going to put down all the reccommendations/discussion in a letter and mail it to us and I will post again about it.
total cost $150.
It is satisfying for me to spend money on these things, I feel I am doing something.
I am going to try out the above and post again.
She is board certified in pediatrics and decided to get certified in integrative medicine and got some training under Andrew Weil. I have never heard of him but checked him out online.
And she has been doing this for about two years. Per her, she does not do any shots, chelation etc and follows the dan principles and practices evidence based medicine about herbs, nutrition and natural ways of healing.
She met with DH and me and got some basic background.. regarding our family and S.
and we expressed our concerns.
1.Autism and not improving much despite a lot of therapy.
2.Eye contact remains poor
3.lack of sleep- most important right now.
4.constipation.
Take home points from her.
1.She has seen a lot of kids improve on gfcf and wants us to try it, gradually. She was really pushy about this. That disappointed my husband who feels that it is going to be really hard for S.
2.Super Nu thera: hold off for now. it made my son a little hyper. reason: it has about 10,000 times the requirement of vit B6 and that can make people hyper and the syrup is made with artificial sweetner base.
we decided to introduce multivitamin later.
3.Coromega: ok per her, and she gave us a suggestion of a concentrated omega 3 on line, which I will post later.
cod liver oil: postponed for now.
4.sleep: melatonin start very low dose , and can try valerian root, all over the counter,.
can try baths with epsom salt.constipation may also affect his sleep.
5.for constipation : suggested flax seed meal: in a powder format in yogurt.
Again ,she stressed that she expects us to get rid of all the casein and glutein in a few months.
talked to us about coconut milk yogurt, and coconut milk etc.
right now we are giving him about half of almond milk which is poor in protein etc and so she had some more suggestions too about protein supplementation.
She is going to put down all the reccommendations/discussion in a letter and mail it to us and I will post again about it.
total cost $150.
It is satisfying for me to spend money on these things, I feel I am doing something.
I am going to try out the above and post again.
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