[Samurai]

My wife's comments continue in Italics

Physical Symptoms in Autism

Many physical symptoms are also present along with behavior issues. Somehow pediatricians never take them seriously. I took a long time to catch on to it as being a symptom of Autism and needing more specific treatment, in spite of repeatedly seeking help from pediatricians.

Weak Immune system : Recurrent cough and cold, running nose every single day.
Chronic constipation: This was so bad, bowel movement used to be once in three days. The only advice I got was to increase fibre and water in the diet. Didn’t help. Some children may have chronic diarrhea instead.

Poor digestion: My son was eating well, still he was always at the lower end of the growth chart.

Gastro interstinal (GI) issues are the most common symptoms. In addition some kids could have allergies, visual problems like lazy eye, sleep disturbances etc. Only recently I’ve come to know that getting a metabolic profile would help my son. This can be done at Metabolic Medicine dept, Apollo hospital on Bannerghatta Road.

Ayurveda

I had taken the help of my ayurvedic doctor (he is very good) for my son’s low immunity and GI issues. The tonics really helped, bowel movements became regular, immunity also improved with colds becoming less frequent. And as his overall health improved I found him more responsive.

I won’t hesitate to use Ayurvedic treatment again as and when required. However even the ayurvedic doc agrees that it is not a replacement for therapy and should be seen as supplementary only.

[vivekiny2k]

I know most of us have reputed ayurvedic doctors in mind, But I will still warn against quacks. I know a case where a so called doctor kept giving a medicine for three months that had already been stopped by the allopathic doctor since it was not recommended for long term use. The medicine was disguised in form of a powder I think.

[Rehaan]

Mr. & Mrs. Samurai - Excellent thread.

Reading this taught me more than reading any article / wiki page on the subject (not that I'd ever make it through the whole write-up anywhere else!).

Hope that this thread is seen by those who do need it.

cya
R

[janitha]

Thanks Samurai for starting the thread which will definitely be of great use to many parents. (Autism, MR, CP etc. etc.) Our daughter had delayed milestones and being apprehensive, sought clarifications from lot of pediatricians we had met and all of them had a stock reply that such variations are common and she will be alright after few years. It was when she was 3+, (2001) that a Government pediatrician in a remote place where I was working suggested us to show her to a psychologist and psychiatrist. They confirmed mental retardation and suggested hearing test which was found normal. Soon got transfer to Palakkad where speech therapy was started.

Then obtained transfer to Thissur due to better facilities there. There she was under the care of a team of Psychiatrist, Psychologist and Speech Therapist who were all from the same Medical college. The Psychiatrist said that there is no treatment for MR and suggested we may try Ayurveda. Fortunately could get an appointment with the venerated Vaidyamdam Cheriya Narayanan Namboodiri of Thrithala who said he will start treating but the result rests with the will of God. After three years of treatment there was vast improvement and she began speaking sentences with 3-4 words. Later got transferred to my native District Kollam and continued visiting him every six months. But a severe pneumonia resulted in getting her admitted to medical college at Trivandrum and the doctors compelled us to stop all ayurvedic medicines saying that it might have contained heavy metals which reduced her immunity. But many other reputed doctors said that it is not at all likely in case of medicines of Vaidyamdom and asked us to get them tested. At that time tried several times to get appointment of Vaidyamadam but he was not doing consultations due to age related problems.

After stopping the medicines she has regressed a lot and nowadays hardly speaks, though all the while speech therapy was being continued. When told about this, the neurologist who is being consulted now asked us to get some tests like Open MRI, EEG etc. but they all returned positive results. Now she is attending a special school. The principal is a sister who is really concerned and dedicated and has a doctorate in MR but facilities like those available in Bangalore can only be dreamed of here. She has had allergy, cold and wheezing from the very beginning but nowadays it is rare. Also few years back, a pediatrician relative of ours asked to do tests for thyroid and finding that she has hypothyroidism, prescribed Eltroxin which will have to be continued for ever.

[sbraj]

janitha, sad to hear that you had to stop the ayurvedic treatment. Did you try any other ayurvedic hospital subsequently?

If you need any help in getting admission to Arya Vaidya Sala, Kottakkal, please PM me. I know some local folks there in Kottakkal town. I would be able to speed you through the (usually long) waiting list.

Samurai, I have PMed you on this. Let me know if any help is needed.

[Samurai]

Originally Posted by dkcrpl

a) Education.

No issues with his intellectual ability but school are not keen on accepting him in main-stream.

Until there is a law disallowing schools from refusing admission to such special care students, they will continue to do it.

Originally Posted by dkcrpl

The friends of my sons, like to play with his brother rather than him and he gets a feeling of being left out. Also as he is growing he is able to understand the differentiation. (one of the complaints of my other son is that his brother is very slow and he cant play with him)

He also is bit hesitant in going in social gatherings as he feels he is bit different from others.

Right now my son is too young for this, but eventually we have deal with this as he grows up.

Originally Posted by dkcrpl

It is worst here. Since we have to rely on therapists for whole life, they treat them like commodities (Exceptions are there). Since you have no alternatives you have to play to their tune.

I think you should keep looking for dedicated therapists who are committed to the profession, they are hard to find.

Originally Posted by sbraj

School should be such that teachers are understanding enough to appreciate the efforts put by the kid.

Kid should not be subject to ridicule etc.

The dog-eat-dog competition nurturing schools may not be the right choice.

Yes, such school exists, you have to keep looking for them. Always get feedback from parents of special needs children who attend there, this is very important.

Originally Posted by ntomer

Our NGO also work in rural areas and unsurprisingly awareness about such issues is very low there. We have many cases of autism, where right care and attitude can do wonders, but it is not forthcoming :-(

Good to know about your NGO's work. There is hardly any resources for treatment outside of major cities.

Originally Posted by rajesh1868

Even from a very young age, even before he started his school, he started to read very well. He was taught by his grand parents. But what concerns us is his difficulty in speaking. Also he never attempts a conversation. Whatever he has spoken are more of statements and reading something aloud.
As directed by school, he is about to be shown to some speech therapists.
Just wondering if this also comes under autism.

If he can read very well, I doubt it is Autism at all. See what the speech therapists say.

Originally Posted by vivekiny2k

I know most of us have reputed ayurvedic doctors in mind, But I will still warn against quacks. I know a case where a so called doctor kept giving a medicine for three months that had already been stopped by the allopathic doctor since it was not recommended for long term use. The medicine was disguised in form of a powder I think.

Vivek, when it comes to Autism, there are very few Ayurvedic doctos who can deal with it. If somebody says they can cure 100 ailments including Autism, it is time to run from there.

Originally Posted by Rehaan

Reading this taught me more than reading any article / wiki page on the subject (not that I'd ever make it through the whole write-up anywhere else!).

Thanks Rehaan, as you know we have been dealing with for more than a year and we thought it would be helpful to share our experiences.

Originally Posted by janitha

Our daughter had delayed milestones and being apprehensive, sought clarifications from lot of pediatricians we had met and all of them had a stock reply that such variations are common and she will be alright after few years.

Apparently this is true even in USA, some how pediatricians are very reluctant to diagnose or even suggest autism as a possibility.

Originally Posted by janitha

After stopping the medicines she has regressed a lot and nowadays hardly speaks, though all the while speech therapy was being continued. When told about this, the neurologist who is being consulted now asked us to get some tests like Open MRI, EEG etc. but they all returned positive results. Now she is attending a special school. The principal is a sister who is really concerned and dedicated and has a doctorate in MR but facilities like those available in Bangalore can only be dreamed of here. She has had allergy, cold and wheezing from the very beginning but nowadays it is rare. Also few years back, a pediatrician relative of ours asked to do tests for thyroid and finding that she has hypothyroidism, prescribed Eltroxin which will have to be continued for ever.

Sorry to hear about the regression, that is very painful aspect for the parents to see. Have you researched other ayurvedic options?

Originally Posted by sbraj

Samurai, I have PMed you on this. Let me know if any help is needed.

Yes, I got it, thanks. However, we have taken the homeopathy option for now along with with speech and occupational therapy. Right now we are planning to stick with the current treatment methods.

[tsk1979]

Wasn't there a supreme court judgement forbidding schools from discriminating against special needs students. There is a law, its just not enforced.

[Samurai]

Originally Posted by tsk1979

Wasn't there a supreme court judgement forbidding schools from discriminating against special needs students. There is a law, its just not enforced.

How would enforcing work ? Taking care of special children is not easy. When a school refuses a special child, they are making it clear they do not want the additional headache. If we wave the order and get our child into one such school, will he benefit from it? The child is not even verbal, can we put him in their care day after day knowing he is not wanted there?

It hurts but we’d rather they refuse if they can’t do much for the child. Fortunately there are other schools who sincerely believe in inclusion.

[Samurai]

My wife's comments continue in Italics.

Homeopathy

Homeopathy offers immense hope for autistic children. I wouldn’t have believed it if I hadn’t seen a child in my son’s class making dramatic improvement in a very short time. Some of the leading therapists also recommend homeopathy as they have seen similar progress in children after starting homeopathic treatment.

Before deciding on medicating the child for long term, I needed to know about side effects. The doctors and a chemist I spoke to assured me that homeopathy is the only medicine that has no side effects and very safe for continuous use. Then with some help I found a very good homeopath in Bangalore and started treatment. Hopefully should know if it’s working in a while.

Btw, the other child I mentioned is taking medicines from Dr. Vikas Sharma in Chandigarh ( Homeopathy at DrHomeo.com ), through online consultation. He is considered the best for autism treatment. I am way too paranoid for my own good, so ruled out distance treatment.

Diet and Supplements

My son is on B-Complex, vitamin C, probiotiocs and cod liver oil supplements. I’ve also been advised to go on GFCF diet (gluten free, casein free). Removing casein was easy, my son never liked any dairy products to start with. Gluten however is a nightmare, it means no wheat, no sooji, no oats, no corn and no to even more stuff ( www.gfcfdiet.com ). Until now I’ve only reduced gluten.

The biggest problem is taking cakes and biscuits away from kids. I’ve heard there is a place in Bangalore selling GFCF snacks, don’t have the details. But there is an online store Sunira Foods and they deliver anywhere in India. As my son’s doc is pushing for it, I have to give it a try.

[sbraj]

Homeopathy medicines are different for different body types. Many times it boils down to the skill of the doctor in identifying the patient's body type correctly. This is crucial. Otherwise medicines may not be effective.

[rajesh1868]

Originally Posted by Samurai

If he can read very well, I doubt it is Autism at all. See what the speech therapists say.

Thanks for your input Samurai. Will be meeting therapists this weekend

[Samurai]

Let's forget about treatment options for a moment. What about us the parents, do we stop living life? Are we doomed to misery for the rest of our lives?

Not necessarily. Yes, you may have alter some things in your life or life-style, but you don't have to stop living or enjoying life. Long time members may remember that my wife and I used to have a very active life. Trekking the Himalayas or offroading in distant jungles or long family trips were regular part of our lives. In fact, we did the 1700Kms long trip on the CJ340 Jeep to Munnar offroad event and back soon after the initial diagnosis of Autism. We even took the baby to Munnar in a second vehicle with my parents, and he thoroughly enjoyed the trip. Yes, we were still in denial at that time about his condition.

It took 6 more months before we finally accepted the situation and my wife re-located to Bangalore along with the kid for regular treatment. After that my offroading trips became very limited, and my wife stopped entirely. Since I am not in a transferable job, relocating to Bangalore was not an easy task for me. Besides, it was middle of the academic year for my older son in Manipal. So I stayed in Manipal with our older son and wife in Bangalore in my brother's house with our younger son. It was hard to live like this with each one of us missing the other two members of the family. We could meet only during therapy holidays.

As we realised that the therapy may be required for another year or two, we decided to bring some sanity to our family life by renting a home close to the therapy center and move the older kid to a school around the same place. I made arrangements at work such that I can work from my Bangalore home half the time and remaining time in Manipal. This means I have to travel back-and-forth between Bangalore and Manipal 2-3 times a month. This will be very hectic and expensive (second home + travel), but brings some sanity to our family life. The fund we had set aside for Thar is now fully diverted to this cause.

It is important to lead normal life with all the bells and whistles, especially when you have to cope with a special child. Normalcy at home itself will be therapeutic to the child instead of sad and miserable faces at home all the time. This is not a disaster, it is just an altered state of being. There are rich families, poor families, healthy families, unhealthy families, families with tragedies, families with little hope, etc, etc. We just happen to be in the spectrum somewhere. As long we learn to cope with our particular problem and deal with it to the best of our abilities, we should be able to live our lives with hope towards the future.

Relatives and friends often treat us with long faces and unhealthy amount of tch tch thrown our way. It is strange to find ourselves more cheerful than them. We are not drowning ourselves in sorrow, we just wish others don't try to drown us either.

[Samurai]

Originally Posted by ntomer

Our NGO also work in rural areas and unsurprisingly awareness about such issues is very low there. We have many cases of autism, where right care and attitude can do wonders, but it is not forthcoming :-(

My wife's comments continue in italics.

We too were in a small town, so I can relate to this. Getting the child in the hands of good therapists is essential. However due to non availability of facilities, financial constraints, social embarrassment etc many children are kept at home. Even in Bangalore some families give up on therapy due to the cost and inconvenience of daily commute.

For underprivileged children maybe I can list out some activities that can be done with everyday things found in and around the house, so that the cost of buying materials is eliminated. Let me know if it would help.

Still it requires some dedication from the parent/s to learn and do the activities consistently with the child.

[ntomer]

Originally Posted by Samurai

My wife's comments continue in italics.

We too were in a small town, so I can relate to this. Getting the child in the hands of good therapists is essential. However due to non availability of facilities, financial constraints, social embarrassment etc many children are kept at home. Even in Bangalore some families give up on therapy due to the cost and inconvenience of daily commute.

For underprivileged children maybe I can list out some activities that can be done with everyday things found in and around the house, so that the cost of buying materials is eliminated. Let me know if it would help.

Still it requires some dedication from the parent/s to learn and do the activities consistently with the child.

Thanks Mrs. Samurai.

Will it be possible for you to talk to my colleague - Dr. Sachin Srivastava - national co-ordination of TISA (Welcome to The Indian Stammering Association). I'll PM you him number.

Regards

Nitin

[Samurai]

My wife's comments continue in italics.

Found THE place to buy educational aids and toys for kids. It's an NGO in Indiranagar, they have everything I ever wanted under one roof! Reasonable prices as well. I never knew about this place while I made umpteen trips to sappire toys, crossword etc. So for the rest of you, here it is:


Sutradhar Educational Resource Centre

Phone: (080) 25215191 , (080) 25288545
Address: 59/1, 3rd Cross, 10th A Main, Indira Nagar 2nd Stage, Bangalore- 560038, Karnataka
Landmark: It is in the lane opp Wills Lifestyle - the lane which connects Indiranagar 100 Ft Road & Indiranagar Double Road.
Website: http://sutradhar.com/index.php

What I loved the most was their story picture cards. It is easy for my son to understand, and maybe soon we can get him to show the next step, or arrange it in sequence etc.

Their stuff is great for all kids, btw.