My Story: 3.7 Recently Diagnosed. Need Recommendation!!!

17 replies, Page 1

yeshewill 2017-01-22 06:30:38

 

My Son had a late diagnosis. We as parents overlooked all the red signs. Partly because our kid had normal growth until the age of 2 years. He could repeat 5-6 words sometimes in a single go. Could climb stairs on his own and get his nickers up. Was hyperactive but listened to commands.No repetetive behaviors. Absolutely normal. 
Red Flags: He used to walk on his toes, made less eye contact, used to spin his bicycles wheel, sideways rocking while watching songs and a bad sleeping pattern.

But over the next year his speech regressed, eye contact became minimal, motoring skills regressed as well. He stopped taking commands and started to like his own company. But still he would speak few words here and there.

We thought that may be pre-school would take care of his behavior issues.
Even his pediatrician said the same and said that the child seemed perfectly alright.
But sadly, it was not to be. 
We started his therapies last December. Its been about two months now.
He is just doing SI - 5 days a week for half an hour. And Speech twice a week.
Ever since we have noticed changes, that certain things have started  to come back.

He has started to cycle slowly. His climbing and coming down of stairs has come back. we reduced his milk intake. Since then his sleeping patterns have almost normalized. He is mingling socially and doesnt cry anymore in front of strangers. Still hyperactive but concentration has improved by 10-15%.
Interesting;y during therapy sessions, he takes all commands almost instantly. But does not do the same at home. As if he is playing games with us. He listens to his mother more than any one else.
We havent taken any MEDICINE yet. within 2 months of daignosis and limited therapy time, with gods grace we have seen improvement, even if its little.
My questions:
What should be the minimum therapy time in a week, considering his age?
Should we start homeopathy treatment?
We are based near Ahmedabad. Heard of Dr Patel and Dr Ranga Sai. Whom should we go for? What is average per annum cost roughly?
Considering his symptoms, I personally believe my child has moderate autism. He is not violent, shows empathy and responds to hugs. I do not believe in following a GCFC diet. Somehow I feel, us Indians, have genes that shouldnt be impacted by GC.  Any suggestions on this are welcome..
I am new to this community. Would require your guidance to go through this journey.
My son has a shine in his eyes that very few people have. And I know by Gods grace he will beat this....







 


123saj 2017-01-25 06:41:32

 

Hello yeshewill,

your kid really looks progressing. But, Sorry I didn't get what SI means?, you said he takes for 5 days a week. 

Thank you.
 

PriyankaW 2017-01-26 17:06:37

 

Hi, I think by SI they are referring to sensory integration. Please look for ABA therapy and early intervention will help your child a lot and you will be able to develop his skills at a faster pace, if provided the right ABA intervention which will take care of his skill development in all areas. Medication so far has no research behind it to support its effectiveness. I would suggest you to not consider it! You can look up for ABA (Applied behavior Analysis) online and will get a lot of relevant details and this science has a lot of research to support the effectiveness of the intervention. I am personally working with kids in the age group of 2-16 years and have been applying the science for 9 years now and have seen how effective it is! Speaking from experience! Thank you
 

123saj 2017-01-27 00:14:27

 

Thank you so much PriyankaW. Appreciate your reply. 
 


yeshewill 2017-02-07 17:53:31

 

Thanks PriyankaW
We havent started the ABA yet. Infact we are struggling to find something substantial in Vadodara.
I know Disha Autism centre is there. But really confused as how to proceed. Its been 3 months of SI and some speech therapy.
But the centre where he is going, is sort of reducing the therapy sessions. They have now reduced it to just twice a week.
I know thats not enough.

 

GilBaki 2017-03-01 11:26:54

 

I have a child with the same condition when he was three years old but hes 6 yrs now... we live in US ... and GFCF diet is not only for US kids it also applies to indian kids... im from south india... we had lot of issues with his behavior and later we found out that dairy (cheese, whole milk ) etc is the major reason for his aggressive behavior... we stopped dairy but not gluten since we are not sure wat other foods we can try to eliminate gluten... there's lot of changes after that .. so u can try that and changes sometimes reflects soon sometimes it takes a long time... 
 
About therapy SI twice a week is definitely not enough... look for ABA its really effective... and here doctors advice ABA for 20 hrs a week ... but not sure about the cost there... u can c for insurance that covers ABA... let me know if theres any i'll also have that into account... might use when we come back... also theres another therapy called DIR FLOORTIME... u can chk http://www.icdl.com/DIR/6-developmental-milestones - read the 6 milestones and try at home it works .... since its difficult to find therapy in ur area u can try this alternative therapy until u find a good one. 


 

Asdhelp2 2017-03-03 21:05:42

 

How to go casein free diet how cn i replace milk plz giv suggestions
 

spmom 2017-03-03 21:35:56

 

Asdhelp2, I have a 3 yrs old boy with ASD and we live in Bangalore. He was diagnosed at age 2 yrs and I will write my experience if it can help you. Diet - most doctors and parents disagree with casein free gluten free diet. In America most parents follow this diet for autistic kids. The reason behind it is most kids with autism have problems with digestion of essential vitamins due to what we call leaky gut syndrome. In order to heal their digestive system and also to avoid absorption of unwanted toxins we avoid most common allergy causing foods like milk, milk products, gluten and any foods the child is allergic to. If your child has problems like frequent loose stools, constipation, colics or not digesting food well then its justified to follow this diet. You can also get allergy tests done to find out what foods your child is allergic to. Alternatives to milk are - ragi milk, rice milk, camel milk, coconut milk. Almond milk can be given but it contains too much oxalates which is not good for autism. It is best to supplement with calcium drops if you stop milk and milk products. But take a paeditrician's prescription to avoid overdosing. You can check your child's blood for levels of vitamin d and vitamin b12 and iron if you want to give him supplements to correct his deficiencies. Remember milk exclusion means excluding milk in all forms - butter, ghee, chocolates and biscuits made with any of these. This is about casein free diet. If you need to know about gluten free diet or about supplements or anything else do write here and i will try to answer.
 


Asdhelp2 2017-03-04 09:10:06

 

Thank you so much fr sharing your experience..if my child has no gut issues n no obvious allergy to any specific food am i still suppose to follow the gfcf diet..altho i hv tried to eliminate gluten from his diet eliminating casein seems difficult to me specially cause he drinks a lot of milk n even in the nyt he wakes up once or twice to hav milk..which milk did u use for ur child among these alternatives n where can i find it in bangalore..sorry for so many questions at a time..jus desperate fr ryt guidance
 

spmom 2017-03-04 14:10:04

 

If you have stepped into the route of diet then you have to follow it completely. Remember if your child is on a gluten free or casein free diet you cannot let him have foods with milk or gluten once in a while or by accidents. because if he does then he might develop stomachaches or diarrhoea if he has them occasionally. so the diet has to be very very strict. you cannot use soya milk as an alternative yo milk. I used coconut milk and ragi milk prepared at home with supplements. you will not find these in shops. the cooking coconut milk you find in shops is not good to use as alternative as it contains preservatives. corn cannot be used as alternative to gluten. when he is gluten free don't use potato chips or popcorn as alternates for snacks. kids who have sensitivities to milk or gluten tend to crave for these foods.because it gives them a opiod like effect and makes them self stimulate. if your child doesn't have any gut issues I would start with an allergy testing. if you decide to follow gfcf you better follow soya free, corn free, potato free, sugar free diet. I.e don't use overuse these products to compensate GFCF. you can add good amount of vegetables and coconut oil into his food to make it healthy and nutritious.
 

spmom 2017-03-04 14:13:36

 

Americans use turmeric, garlic and coconut oil in the form of capsules to treat their kids with autism. We can use these useful herbs everyday in our diets and avoid all the side effects of supplements.
 

yeshewill 2017-03-04 19:09:00

 

Update:-
The therapies are still going slowly. He is now going at one more place for a full set of SI/ABA/Speech etc. So now Therapy time has increased to about 10+ Hrs in a week.
Recently we found that his Hb levels had come down to 7. Did all the tests. Nothing found. No apparent reasons. He doesnt look like he is anemic. He is quite active. But lately he was falling sick a lot(cough/cold/fever). 
His diet is extremely robust.
Once again I would say, I dont believe in GFCF diet. We have just reduced his milk intake and sleep has never been better since. He sleeps sound and gets up only once and doesnt crave for milk anymore.
Some studies tell that Autism and Low Iron Levels are related. The doc said, If his Hb levels improve, he may be able to make a decent recovery.
The progress, I must say is bit disappointing. 
Few Positives:
His behavior is lot more certain now.
He really likes to go out and doesnt like staying in home too much.
No more crying in front of strangers.
Follow 50% instructions in therapy sessions. But doesnt quite does the same while at home.
Therapists & Docs say he is doing fine. I doubt that.
His appetite is a lot better and diverse now.
Some of the repetitive behaviors are slowly going away.

Downers:
Speech.. No apparent improvement.
Eye Contact hasnt improved much.
Still needs to be fed and force fed sometimes.
Potty Training


 

yeshewill 2017-03-04 19:13:39

 

GilBaki
Hows ur kid now? I mean whats the progress like.
 

Asdhelp2 2017-03-04 19:49:22

 

Spmom where does ur child go fr his therapy sessions?
 

spmom 2017-03-05 00:05:17

 

Asdhelp2- I don't want to mention where my son gets therapy just for my privacy. sorry. but I can tell you there are some places in North bangalore which have good reviews. Samvaad - ABA for 2 hrs and play therapy for an hr is 10k per month. you can also opt for 45 mins single sessions per day. Comm deall - have heard good things about their therapy. BMI - very expensive for 9 -2 school like sessions. Didn't hear good reviews about them. Cornerstone - 500 per session. haven't heard of any good or bad about them Yeshewill - if you don't believe in gfcf what was the reason for reducing your son's milk intake. milk and gluten are not common allergens in Indians is a myth. many Indians are sensitive to these food but go undiagnosed. they may have mild gut symptoms which are put down to something else. Just a thought - if reducing milk made things better for your son, may be stopping it may do something more...again just a thought. Kids who drink too much milk tend to have more chances of iron deficiency at that age. and definitely iron supplementation will make a lot of things better. .especially in terms of cognition. Just another thought - you can check his vitamin b12 levels (if noy already done) as it also causes anaemia and autistic symptoms. correction of deficiencies makes a huge improvement in autism. vitamin d deficiencies are also seen in these kids. These are my personal experiences. Its not advice, just my thoughts.
 

spmom 2017-03-05 00:11:32

 

Asdhelp2- I don't want to mention where my son gets therapy just for my privacy. sorry. but I can tell you there are some places in North bangalore which have good reviews. Samvaad - ABA for 2 hrs and play therapy for an hr is 10k per month. you can also opt for 45 mins single sessions per day. Comm deall - have heard good things about their therapy. BMI - very expensive for 9 -2 school like sessions. Didn't hear good reviews about them. Cornerstone - 500 per session. haven't heard of any good or bad about them Yeshewill - if you don't believe in gfcf what was the reason for reducing your son's milk intake. milk and gluten are not common allergens in Indians is a myth. many Indians are sensitive to these food but go undiagnosed. they may have mild gut symptoms which are put down to something else. Just a thought - if reducing milk made things better for your son, may be stopping it may do something more...again just a thought. Kids who drink too much milk tend to have more chances of iron deficiency at that age. and definitely iron supplementation will make a lot of things better. .especially in terms of cognition. Just another thought - you can check his vitamin b12 levels (if noy already done) as it also causes anaemia and autistic symptoms. correction of deficiencies makes a huge improvement in autism. vitamin d deficiencies are also seen in these kids. These are my personal experiences. Its not advice, just my thoughts.
 

spmom 2017-03-05 00:14:17

 

For those who are looking for evidence about diet and supplements ( these are vitamins not medications like anti psychotics) please visit the 'autism research institute' website or TACA to start off.
 

maitymanas 2017-03-14 18:14:45

 

My son Moulik (3.6 Yrs) has diagonosed mild to moderate autism by Dec’16 after a fever (Though paediatric neurologist & paediatrics says perfectly alright ). He can speak & recognize from A-Z or 1-10. Can recite Bengali/English poem. Can speak for his favourite food for taking (such as will take chowmin, will take pasta, will take sweet, orange etc.) but don’t say he is hungry. He plays with other children. He has toilet or potty habit (speak for those when he need & do in the right place). He sleeps about 9-10 hrs. everyday. He has eye contact & followed some commands. Eat his favourite food by his own hand. Do not call dad or mom (but in absence of father/mother/niece etc he say will got to father/mom/niece etc.). Do not response his name but many times he looks when he called. He is not so quiet or not so upset in nature. Can speak single sentence (ex. This is ball. We play with ball etc.) but can’t converse with others. Many times he speaks for toilet or potty when he sits for taking lunch, dinner. He is fond of going outside (when say we are going outside he immediately takes hand & say will go outside). He do not like draw with crayon but like to paint with brush (but if we push him for drawing he fill the picture properly). He repeats sentences sometimes [Ex. Uncle/Father has gone to office, niece is crying, It was Vivekananda/A.C. Roy statue, pointed to something he asks What is that (Though he  know the thing and after we ask he say that is...........)]. He cannot converse with others. He eats fruits, almonds etc.. Eat everything by chewing. Sometime he has got finger flapping (thumb, middle & index). He is not violent shows empathy & responds to hugs. He started bubbling, crawling & walking timely. But after starting speeching his speech regressed. But now it has improved a lot during last 3 months. He can climb or coming down from stairs. I have noticed these all. If there is any other query pl. ask me. We have not taken any medicine yet. We have started speech, behaviour & Occupation therapy for last 2 months. He very enjoys playing with occupational therapy & response every playing. We are eager to know the actual problem & the remedy. Please also suggest us whether the problem can be overcome? What treatment should start, where & to whom? What is average annum cost of the treatment? We live in Kolkata, West Bengal of India.

Yours faithfully

Manas Maity

 

 

 

 

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