gfcf diet

160 replies, Page 2

Mommydear 2011-11-23 13:08:42

 

 Hi Everyone,

 

My daughter has speeach delay and atension disorders. She has been adviced a gluten-free diet. Was researching online and I came across this website.

 

http://glutenfreebangalore.blogspot.com/

 

This will be helpful for mothers in Bangalore.

Mommydear

 

VL 2011-11-23 17:09:45

 

Hi NJ,

  Reg supplements, when i see iherb site, there are host of company offering very many supplements, which really left me confused on what to choose..

Also you had mentioned above that you are using Calcium and vitamin from Kirkman lab and multivitamin from Thorne's. How did you narrow down.

I mainly need for a 3-1/2 yr old a good multi vitamin (which will satify most of the minerals/vitamins in required quantity)  and Calcium supplement.

I came across this multivitamin from Kirkman, want to know if this is good.

http://www.ourkidsasd.com/products/130%7CChildren's%20Chewable%20Multi%20Vitamin%20and%20Mineral-Kirkman%20Labs

This site states this "This product is sweetened with dextrose and sucralose and flavored with a delicious natural mango/peach flavor". Also they claim that No preservative/colouring.

What is your comment on above?

When i chek for calcium in iherb, i see many dosage of calcium like 250 IU etc with other combination so want to know for the age of 3.6 and girl child which will be the best composition and from which lab. I will prefer a liquid, chewable or a powder. If it is powder, can it be mixed with water

Also, at home i dont have a very encouraging support for going in for diet implementation. Like most MILs, mine also opposes whatever i do. I am being questioned on all the authenticity. She is a person with school of thought that a child needs to be feel fed, and feel fed according to her is the kid's tummy should be filled to maximum no matter what goes in is nutritious or good for the kid. According to her a kid is healthy only if it is chubby n fat. And she is the authority at home and nobody will say a word against her. So as i am raising all these things, it is causing friction and she always thinks that the youger generation doesnt know anything  that is specifically fir DILs only.

She says first you find out all the details, give me a printout with what is the alternate food and medicines which will compensate for the diet etc.. Even if i make it very clear she will never agree and when i start implenting also she will keep on cribbing and eat up my head saying that because we stopped all these, she is loosing weight, not very healthy, dull etc etc. As i am working full time i am dependent on her for taking care of the kid. 

 

jyothi10 2011-11-27 01:46:19

 

Hi NJ AND VL,

I agree with VL, rgdng iherb, lots of products, flavoured, unflavoured, some coloured and some are not. Same goes with regards to implementation. No support.  I need atleast two person to adminster any supplement, sweet or otherwise.   Me being the firsrt person, the second, my mom or dad / husband , they feel that these supplements are too hot in potency and will create an imbalance. She may experience loose stools, stomach ache etc. . That is why have no choice but start with very low dosage.

i have narrowed down few supplements, dosages are quite high.  Is better to start off with 1/4 teaspoon and then to increase the dosage. Most of them are capsules, I do not know, if I am right, but  I make a decotion in water and then adminster. Sometimes, I cut the capsule into Half.

Supplements : Thorne reasearch children basic nutrients  (dosage will try at a lesser qty and vitamin a is quite high)

or  instead of the above Kirkman's Super Nu thera (which has calcium and mag nesium plus mutlivitamins) unflavoured. hypoallergenic

I can also trycalcium / magnesium glycinate from kirkman's lab.

Kirkman's grape extract as antioxidant

Coenzyme Q10 for boosting immune system hypoallergenic 25 mg.  Kirkman's again.

I am a great fan of pre and probiotics  so, Culturelle and pro bio gold (this more similar to bifilac in india but the potency is huge).  Can this be used for yeast ??

Colostrum gold ie bovine colostrum. Here i used Lactrum from tablet india which has high element of sucrose. Again immunity.

5 HTP OR GABA (AMINO ACID) - I DO NOT IF I SHOULD USE THIS OR NOT BUT AMINOACID HELPED ME IN MY PREGNANCY TO SLEEP AND MY DAUGHTER ALSO GAINED WT. ALTERNATIVELY, I CAN ALSO TRY GLYCINE (ITS PRODUCT GLASS IS AMINO ACID AND IS GOOD IN DETOX).

Omega Fatty Acids - I a m going to try Nordiac Naturals gummies. It is a low dosage.   If taken well, i will source a higher dosage locally from Nutripower which represents Nordiac Naturals in India.   (i am also looking out for fish oils derived from fermented fish,  it much better than other fish oils). Plus plant  based oils too,  pls advise.  I read that omega fatty acids in high dosage increases speech and acts as neurotransmitter.

Phenol assist (KIRKMAN LABS- As tomatoes and apples, nuts have phenol and I have not been successful in weaning the fruits and tomatoes. Plus I give my daughter almond milk so phenol assist.

Folinic Acid with b12 (kirkman lab) which a good replacement of folic acid.

Any iron tonic to be given, pls advise. As of now I am using dextorange.

In addition, homeopathy from my homepath.  For the first, after taking homeopathy pills regularly for a week, my daughter has not seen a pediatric.  Her cold is under control. I also have her home based solutions, like green tea, turmeric water, ginger, kadi shakar (sugar molasses, very low dosage with turmeric powder). 

Also have started, sunova brahmi and spirulina.  She has not taken these capsules, as I remove the capsule cover and mix the  powder with stevia (herbal supplement for sugar) and give her. She has thrown most of it.

Pls advise, if these are good supplements or this itself is biomed. As I am reading a lot of stuff, where in a layperson with decent medical knowledge is also not enough.  I will also contact Forum for autism and see their view points.  Please recommend any good supplements apart from  the above, which has shown good signs. Or if there side effects which I do not know, pls advise. Diet is the most important factor, once diet is implemented successful supplements will also work well. but implementation and choosing the right diet is another story... also combination of supplements have also to be right.

 


VL 2011-12-08 10:55:49

 

Jyothi / NJ

 I am still struck with choosing the supplements (Vitamins/calcium) etc.

Jyothi, Have u narrowed the dosage and brand. How are you procuring them? can you pls give me the website..

My kid is actually 3.7 yrs now, she speaks little better than before atleast for her needs but still  i feel that her attentiveness and listening skills needs to improve so that she can speak better. What i mean is she still has inattentiveness when we speak generally things.

Also offlate, she beats me/pinches me mostly all the time without reason also. If i raise my voice to make her understand when she does some mischieve she immediately hits me..  She is always upto some mischief at home.

Another major thing that i want to reduce is her repetitive/stimming behaviour. Her repetitive behaviour are like these

1. She has the habit of taking atleast one of her toy when she starts to school. Earlier she use to do this at bedtime or whenever we are going out also. But for last couple of weeks she is not doing that at the bed time or going outside . she had left the habit of taking toy when going to school for more than a week or so but suddenly since this week she has started

2. Also she keeps asking repeated question like how an elephant/lion etc makes sound (mostly animals but in that also she will repeat elephant most). If she starts asking some new questions then she will keep on asking same kind of them at regular intervals

3. Other habit that she has is, she will climb the sofa from behind and but her head down first and will push her whole body (like crawling and then get down the sofa) This is something that she keeps repeating

4. Any vessal/ Bucket / Mug that she takes she will put on her head and say "Cap"

5. Still she uses her name instead of I / ME most of the time. when i say how should you say? then she corrects only at that instance

So mainly i want to implement diet to see that if it will help in improving the attentiveness and reduce the stimming..

NJ,requiring your inputs as you had really done many things and had gone long way.  In my earlier post i had details on the confusion of how to choose the supplement and it procurement

Also any idea if we have any ABA therapist in chennai who does a decent job.

Only thing i am doing as of now is OT (individual / group), ST and sometimes i get a special educator to keep her engaged

Also i had ordered from Zero-G range Atta (shorgum/millet based) and porridge and a product called Seed-o-life (seeds of sunflower/ flax seed/ Sesame seed / pumpkin seed.

She is a fruit lover, she eats apple/bananas/all type of nuts /dates/figs/raisins. Will we see good effect only if we remove all these also? OR will eliminating milk / gluten product alone will help?

 

 

 

manessvijay 2011-12-11 07:58:10

 

hi jyothi,

my kid turned 7 on 6th of this month. he has cooled down to a near normal level, uses his intellligence and gets his work done with a lot of patience and perseverence, still he is very active, always on the move, enjoying his moments and doing something new has become his routine.somebody always has to be watchful, but , from a distance and with a much relaxed state of mind than his previous years but yet non-verbal.                         

what i want to stress, though it is simple but impossible to implement in the present environment is an autistic child needs atleast 2 persons to take care of on a long term basis, just to gain and revive his confidence. also the other person needs to rest and concentrate and manage his other activities as well.

nutrition is equally important but a bonding of relation with the child is essential. what others who are not involved directly or indirectly with an autistic child don't realise that by involving themselves with such an alien species, normal people or neurotypicals don't realise that these children carry a solution along with their destructive mindboggling stubburn approach. if you fall back and search your history, you will definitely realise they played a concrete role in guiding your path and saving you from tricky situations. your understanding of laws of nature or approach to life gets a qualitative shift whilst dealing with these kids. 

yes, as parents/caretakers we have to dissolve our relations with society in order to fullly understand, interpret, implement togive a direction to their overwheming energetic activities.

 

NJ 2011-12-11 13:22:32

 

VL,

Regarding diet, from my experience the only way to check if it works or not is to go cold turkey right away on all allergens, else you will always have doubts regarding whether or not the negative behaviors that still exist is because the diet is not working. So remove the following main allergens from 6 months--- If it works , you will see that most of the behaviors are greatly minimized or even become non existant. 

Casein(even avoid butter, whey and ghee for sometime as some children may react to trace amounts of casein also)

Gluten

Corn 

Soy

Apples

Bananas

Citric fruits

Cocoa/Chocolate

Eggs

Peanuts

At minimum 4 months strictly avoid the above main and common allergens.

My son was mainly on idlies, mung curry, fish and lentils for protein, I did not restrict his vegetables, but gave him limited and rotated it because many veggies have high phenolic content and he has phenol issues. For fruits he was on muskmelon, papaya, guava, pears and pomegranate (juice), I have also given him tender coconut during summer. Snacks was chickpea, mung and rice flour based snacks, but again give very limited , because the sugar and oil content are high on such snacks(or most of the snacks for that matter).   

After 4 months into the diet, introduce a multivitamin for immunity. Some children do not tolerate some of the vitamins and minerals in the multivitamin, So sometimes children may behave negatively when multivitamin is introduced. Thats why I am saying to wait for 4 months before starting any supplement. Gluten takes 2-4 months to exit from the system while the other allergens takes a maximum of 3 days. In case your child is very picky about the taste you can try kirkmans chewable multivitamin and mineral wafer(xylitol version). I have used this vitamin initially with success to build my sons immunity. You may also want to add calcium, vitamin D and magnesium supplement, unless the child is calcium toxic.

If you are using individual vitamin method(instead of multivitamin) then you can start from the time you start the diet itself. If its anxiety , some children have had success with high B6 + little magnesium, sometimes a b50 complex, For recurrant flu and chest infections Vit C + Zinc does well , I also use tulsi +ginger tea from fabindia during those times. Some use Olive leaf extract, lysine drops etc to tackle flu with success. Implementing an yeast protocol is also very important as most of these children are very prone to yeast. Yeast is not restricted to the intestines. It can occur anywhere in the body, even the brain. The main symptoms of yeast is spaciness, extreme hyperactiveness, random talk. GSE, biotin, candidase are some of the supps used. I use GSE for my son. For speech try fish oils with EPA to DHA ratio of 2:1. For picky eaters fish oils now comes with flavors. Some flavors give allergic reactions-- For instance my son was allergic to orange flavor , but was ok with lemon flavor. You can also add Acetyl l carnitine to the fish oil supplement to further improve speech. Some people have had success using DMG for speech.  If your child had frequent antibiotics courses you may want to add a high potent probiotic for 3 to 6 months. I use d- lactate free custom probiotics for my son 

After 6 months into the diet, you can introduce the food one at a time, to see which one the child is ok with. Wait for 3 days to inroduce any new food since reactions to foods can occur upto 3 days as many foods give delayed onset allergic reaction. Another option is that you can rotate the foods so that allergens if any does not bring down the system. By rotation, every allergen food to be given once in 4 days. That means banana can be given twice a week, apple twice a week etc,, with 4 days inbetween. At this time you can also optionally add enzymes to the foods. It has helped some children.

The diet will be a life changing experience and will be tough to go through initially and biomed does take a lot of money. But hang on,,,,,,,, many children have benefitted tremendously from it.

Homeopathy is another area that you can consider and is lesser expensive. But getting a good homeopath is tricky. Go by reference... The homeopath should have treated children with autistic symptoms with success and you should be able to see that the autistic child who has been treated by that homeopath is normal or near to normal in behavior and speech. Also if the homeopath is a kind that does not believe in food allergies and food intolerances and he/she does not believe that food intolerances does not manifest in ways apart from loose stools/rhinitis then you need to look for another one.

I do not know of an ABA therapist in chennai. I heard that the director of "we can" in Neelankarai is trained in this. But I honestly think you can do ABA yourself instead of lugging her to therapists. I heard many people use this book with success "Behavioral intervention for young children with Autism" by Catherine maurice. You can purchase this book and use the methods in this book. Read the reviews for this book on Amazon- http://www.amazon.com/Behavioral-Intervention-Young-Children-Autism/product-reviews/0890796831/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

 

NJ 2011-12-11 13:25:58

 

manessvijay,

Your son is blessed to have such a caring and patient mother like you. Its so nice that you both are comfortable with each other. I sincerely hope that someday he would make you proud and all your efforts not go in vain. My heart goes out to you... Sincere and Best wishes

 


VL 2011-12-11 16:44:47

 

Hi NJ,

 Thanks for your reply..

I think i will try to start with GF first as it takes long for Gluten to leave the body.. In that direction, i had ordered & got Zero-G Atta which is Shorghum & Millet based however in the ingredient I see that i has Edible gum (E414), is it of any concern. When i googled, i understand that it is a natural edible gum

http://en.wikipedia.org/wiki/Gum_arabic

I had also got a Porridge mix which contains flax seeds, pumpkin seeds, shorgum grain etc. so wanted to try. Again  the challange will be she may not like the salty version and for sweet version i may use jagerry/honey for sweetness a bit but again need to check if it will work without milk..

I had got a product called Seed-o-life which is seeds of Pumpkin, Flax seed, Sesame seed, Sunflower seed which they say can be added with any food. only instruction that is see is "do not store the pounded seeds, as the Omega 3 properties of Flax-seeds will be destroyed by storage"

I will go by your suggestion for starting the supplements perhaps after couple of months.

I too checked on kirkman's multivitamin/mineral wafers and was kind of zeroing on it. I need recommendation on good calcium / Vit D3 supplement ( I though making her stand in early morning sun for 15 mins also a good option for Vit D)

Two weeks back also during the rainy day she was sick with Fever / cold / cough and had asusual a dosage of paracetomol/ antibiotic. But even after a week it was same with weather being bad i started wiping down and we made some homemade power to treat.

d-lactace and custom probiotics are brand of probiotic or type o probiotic? Again are you getting all these from iherb.

In i herb i see only "Kirkman Labs, Children's Chewable Multi-Vitamin/Mineral Wafers, Mango/Peach Flavor, 120 Chewable Wafers" I dont see the xylitol version

Will one wafer a day do fine.. Also i wish to know which is the best time of the day to give vitamins (in the day or night). similarly for probiotic and supplements.

Reg Homeopathy, do you have any references or experience yourself.

The main issue with my kid i see is that she isnt getting the interactive speech that other kids of her age have/ some stimming behaviour and adamancy. But she is good in few other things which goes unnoticed because of this

I came across website of Restore, which is organic shop in Adyar, when i was looking at some details, they had mentioned that though Jowar is called Cholam they are very differet from corn (yellow kernel). In one of our earlier post we were discussing this so wanted to give with info.

http://restore.org.in/Organic-Food-Products/65/24

4. Jowar (Great millet, Sorghum)jowar-small


Hindi – Jowar, Jowari, Jundri; Telugu – Jonna, Jonnalu;
Kannada – Jola; Malayalam - Cholam

Cholam is believed to have been brought to India about 1,000 years ago. The name ‘Cholam’ is usually mistaken for maize, the yellow corn. The millet ‘Cholam’ grains are white in colour, and the size of pepper. They are one of the most drought-resistant crops known

I am planning get their Millet/flour products and try and they are organic perhaps can replace the Zero-G atta that i brought.

Again, how to identify the presence of yeast. Is it again by blood test.

Reg Phenol food i came across details on gfcfdiet website, but that has left me bit confusion as her their defintion. They have categorised as Low, Moderate, High Moderate etc. http://www.gfcfdiet.com/SalicylatesGFCFfood.htm

 

 

 

VL 2011-12-11 16:47:46

 

NJ,

 One question in forgot to add in my post is, what is the procedure for ordering in iherb. There also do we need to create a paypal account or something like Akhil foods.

How are their service, in terms of tamper proof/ promptness etc

 

NJ 2011-12-11 23:21:12

 

For calcium, I use kirkmans calcium glycinate. It contains a little vit D3 also.

I had purchased the kirkmans kids multivitamin earlier from Akhil health foods. You can inquire with iherb if they would be stocking this product. They keep adding new products regularly and in case they find this one in demand they may stock it also in future.

I started with 1 wafer and continued it for 2 months. But I could keep the cold and cough consistently at bay only after I increased the dose to the recommended = i.e 2 wafers per day. I gave the kirkmans multi during day time. 1 with breakfast and the other with lunch. I give Probiotic , calcium and magnesium in the night.

I had been to a homeopath recommended by a pharmacist who I go to some time back. My son was having sleep issues at the time and I thought I would try homeopathy for that especially since I got recommendations on homeopathy from a lot of westerners. I took the medicines(even though it was unlabeled since I was desperate) diligently for 1 month, but his situation did not improve, even after I increased dosage as per his instruction. Then finally I gave up and modified the diet a bit to avoid oily food and have fish or mung sprouts with idly for dinner and reintroduced buffered magnesium in the evening. He started sleeping soundly again. Another thing I am not comfortable with the big homeopathic clinics is that they try to sell you packages, and say if you take so much you will get discount etc and its hard to convince them that you want to see if it will work out for you first before you buy a package from them. Even the junior docs are all like marketing professionals. I dont think such was the case with ayurvedic clinics. They appear more service minded. In any case I dont think any of the homeopaths here have treated autism spectrum symptoms with success. I have not yet seen evidence of that. They also dont understand food allergies and follow protocol. I have heard G therapy from Pune helping some of them. Its a combination of Siddha and Homeopathy. But I have not read enough data to get convinced that it helped in leaps and bounds and not painfully slow progress.

Restore is in Adyar. I think you will be able to find organic shops in your place also instead of having to come all the way to Adyar?. Check with Just dial-- they may have some numbers..

Hyperactivity is a common symptom of yeast, Here are other symptoms - http://www.danasview.net/yeast.htm

From the salicilate list, just avoid the fruits and artificials that I mentioned in earlier post since these are the fruits that we tend to give every day and more often. Many of the foods are very nutritious and its not healthy to remove each and everything, So you can rotate the others. You can try adding "no fenol" enzyme if she really has phenol issues.

I purchase through iherb using credit card- they accept visa or master card. The site is very user friendly and you will understand how to shop with it very easily. the stuff gets delivered within 2 to 7 days. Be sure the click on first time international customers button-- i almost missed it... I think you will get some extra discounts.

 

VL 2011-12-12 10:15:54

 

Thanks NJ for your reply..

The Kirkman Multivitamin wafer again says Natural peach/Mango flavour. Again some websites cautions on the Natural flavours also. I saw the one in tacanow website also http://www.tacanow.org/family-resources/phenols-salicylates-additives/

Anyway, let me start with something. I will go with iherb.

How to exactly find out if there are Phenol issues?

When i read thr' Dana's website on yeast growth, i see couple of them matching with my kid, they are specifically Climbing on the sofa and coming with her head down, going in circles for few mins, this going in circles has been there with her since she was over 2 yrs itself. Initially we thought it was her way of playing.

Does this also means that Yeast is there in Brain... Sometimes as we read and come to know of many things, it really leaves me baffled.

Her speech is improving on a regular basis however she needs to catch up a lot on talking which needs to reply by thinking like remembering the context based on which we are asking question on things that happpend during the day.. I feel she needs improvement in concentration and attention more and also need to listen to talks going around her to improve.

She is yet to develop interactive conversational skill I feel.. She will perhaps answer a series of 3 to 4 questions on things that she knows but if we ask her based on the day's happening then she will be struck.. She keeps on talking random things ie the things that she knows/ incidences that she remembers etc even without context.. Is this a concern?

How is your Son on the interactive speech front?

As you had mentioned that Fish oil improves speech  (again it is a challange convincing at home being Vegetarians), i saw in iherb that Carlsons has Kids but i guess it says kids about 4 yrs and less that that need to check with physician. So i still need to check which one to use

Reg Organic shop. I dont have any near my place.  Need to see if coming to Adyar once a week will work.

 

 

NJ 2011-12-18 23:51:20

 

VL, If the kid is allergic to that particular food, then its better to avoid any flavor derived from that food. For instance some children are allergic to vanilla, so its better to avoid vanilla flavor, and likewise chocolate. So if your child is intolerant to peach or mango, then avoid the flavor. Some children can handle trace amounts of allergens. So you have to try to find out. Overall I found that my son never fell sick with cold/cough even once during the 2 per day 6 month course of kirkmans kids chewables. I wanted to rotate the multi, thats why I tried thorne this time. I would rate the result I got from kirkmans better than the thorne I am using currently. I think its the 15 mg of zinc in kirkmans which worked well for my son. Thorne contains a lesser concentration of zinc.

 If your kid has phenol issues, then see if the hyperactivity and aggression is tremendously improved on days where you are not giving high phenolic foods. Then introduce a high phenol food like red apple or dates and see if the aggression , hyperactivity is returning. Initially you will get baffled by all the information you read on biomed. It would even scare you to read accounts by some of the parents. But in about time, you would come to know that most would not apply to you and filter out information that you do not need.

I personally feel your daughter is doing fine for most part. As with many children who have speech issues there would be social difficulties as other children would find it harder to understand her and she would find it harder to understand others. Just continue to keep asking a lot of questions and answer it for her if she does not give the right answer, Redirect her to the right answer if she does not tell the correct answer. Talk , talk and talk. Talk slowly in simple sentences, all the happenings of the day, what did you do during the day and ask what did others do during the day, give some answer if she does not answer and ask the question again. Read a lot of picture books and ask a lot of questions based on the story. The questions should be asked on every page, as and when every page is explained. On the parallel work on building her immunity, so that the periods of regression would lessen.

My son says many things what he does in school. But i need to be specific in asking like for instance- did miss like your new dress? what did she say on seeing your new dress? what did you and your friend do in class? did you share your pumpkin seeds with your friends? what did they say about your new snack? etc. Else if I ask him what did you do in class today, he would say the same thing- building blocks, playing with friends, coloring.

 

jyothi10 2011-12-30 21:14:05

 

Hi VL and NJ,

I had ordered a couple of supplements from iherb.  One being chewable wafers multivitamin from kirkman and one non flavoured ones from throne's.  I also ordered calcium and magnesium glycinate and probiotics from culturelle probiotic. Plus baby dha from nordiac naturuals, elderberry for kids (my father and elder daughter will take it) and DMG from food science. I received them today evening. I seen fermented fish oils  but will order them later.    I have also ordered a couple of gluten free products from sunira foods, organic vegetables and fruits from jiyo organic  they also have supplements too...

VL, with regards to dosage, I have started with half teaspoon, to see if there are side effects.  Except DMG which is liquid the others are in capsule form, so I will mix a quarter or half of the contents along with ragi, or smashed fruits. I am still trying.. U can try fish oils from Nutripower.. there is a lady called  Mrs. Jaya Gupta who is the chief representative of nutripower and she send nordiac naturals products from India itself.   Since, your daughter is also talking.. I would also recommend that you talk a lot with her.. do not go for the dmg as I have taken it for my daughter speech..she is still in the two, three words stage and regresses everytime she has infection.  She is also on homeopathy.

I had asked a couple of friends to check the credentials of gluten free food..but nobody likes them as they are die hard wheat and rice fans.. some of them are from bombay and would prefer if I buy jowar grains, grind them and make rotis instead of buying gluten free flours.   I also found Jowar and Bajra snacks.  they are from rajasthan and most malls have it.. I will giv e u then names later in the next thread.. I loved the taste.. they are spicy.. u can add a dash of lemon and it tastes like bhel.

NJ.. I was charged Rs. 3444 as customs duty from DHL.. how much are u charged and do you know any agent who handles your consignment as and when u order.

thanks

 

 

 

 

NJ 2011-12-30 22:08:18

 

Jyothi,

custom is usually 1500-1600 max per shipment  and total shipment costs for me a total of about 5000 -6000 Rs. Customs is usually about 30% of the cost of the products. How much was the total cost of your shipment -excluding the custom duties?

 

jyothi10 2011-12-31 00:46:52

 

Hi NJ,

Okay, then I have given details with regards to supplements.  The shipment was booked by my husband who has a hsbc cc and they charge a 3% upfront charge on foreign exchange transactions.  He was billed 9000

 He ordered goat milk powder, toothpaste etc and the total bill came up $165.33 (exculding customs duties) and dhl charged Rs. 3444.33 as custom duties, cess  and tax,  total wt was 8 pounds. iherb had showed the true invoice of $165.33.  Has DHL charged us extra...

 

NJ 2011-12-31 09:55:06

 

Jyothi,

DHL would have given an invoice of the shipment delivery. What is the breakup in that. i.eThe total break up that adds upto 3444.

i.e custom duties(i think its broken into 3 different types- I'm in my moms place now, so dont have the details of my invoice to check). dhl handling charges etc.

 

jyothi10 2012-01-06 00:27:54

 

 Hi Nj,

sorry for the delay in reply, i took was at my mothe's place.  yes the custom duties is broken down in 3 different types, the custom duties amount comes to 2700 and the balance cess on customs.  I used to work for a indenting company who deals with customs and freight forwarding cos, dhl has billed me 60% of the invoice and the actuals should be 30% only, usually the customs forward the original billing copy which is billed to dhl, the customer service guys are not parting with the original invoice.  I have to approach a freight forwarder of dhl otherwise they will charge me 60% for further shipments.  During this weekend, I will visit dhl's main office in mumbai, i am meeting my friend, so will go to their office. I do not have the invoice now, its with a freight forwarder friend of mine.. will give u the details.  Did u face any problems with dhl, otherwise, service was good, all the supplements were well packed and of the latest lot.

do you have any information about akhil health food mumbai branch.  If they have supplements in stock, i can save on the shipping cost. 

My daughter is not digesting the fish oil well, what can be added to it.  What are your thoughts about high dosage of vitamin b6 and magnesium  + P5P.   I am sure, she has bacteria and yeast in her system (she is talking in random and her stools are foul smelling), will yeast aid be good or gse + biotin is a good combo.  Can digestive enzymes help in reducing yeast. .  Cultrelle is too mild, u right customs probiotics is quiet potent and better.   I am giving her kirkman's children multivitamin, she is okay with it had problems initially but i reduced the dosage.  I also bought goat's milk.. but was told my mom that its hot in potency, does it contain casein like milk.  My daughter has a high anion gap 23.7, her bicaronate ie electrolytes are not normal bicarbonate is 18, how can the ph balance of the body be maintained.  Just a though, I am avoiding sugar and trying alternatives like dates and stevia but what about rice, doesn't  it convert into gulcose in the system and ultimately stimulate the yeast.  I bought bajra today instead of jowar, is it okay in gfcf diet..please advise

 

jyothi10 2012-01-06 01:35:58

 

 i forgot to add, i visited a pediatric neurologist and nephrologist.  the neurologist recommended therapy as usual the current diagnosis of her's is autistic features. Isnt the same >> nephrologist asked me to give her espon + sodium bicarbonate baths.  how can the ph can be maintained by supplements and diet ??

 

VL 2012-01-06 10:55:29

 

Hi Jyothi/NJ,   

Wish you a Happy New Year.  

Jyothi, good to know that you had started on various Bio-med treatment and supplements pretty fast.. unlike me.. i had been thinking of these for close to a year but still didnt start implementing due circumstance at home (read as non-cooperation). Just around New Year my husband  told me why dont you start on GFCF and try.. (earlier he was also not convinced)

We had actually gone on 5-6 days vacation to Hyd and there most of our friend had kids in age diff of 8 mons to 1 yr compared to my daughter..  My husband was how they were speaking/behaving etc.. so i guess he realised a point in what i was trying to do and thus came his concurrence. Still as i work full time i am heavily dependent on my MIL

Today i made puris out of Jowar/Ragi mix which i procured from Zero G brand and made the dough in hot water as mentioned by them. But i felt that it did not fluff and they were more of coarse type with might give a muddy feeling perhaps because of Ragi.. If we buy jowar and grind will it be better? Is Bajra better than Jowar in terms of texture? have u used Jowar  or Bajra?

NJ, you had already provided the details on the Supplements. To start with i want to go for the Multivitamin and Calcium one..I can easily not give her milk but she sometimes has curd rice. But the challenge is some trace of casein she will ingest as she has cavities, as a preventive measure we need to use a Tooth Mousse which contains milk protein.. so will it defeat CF?

Also i will be in need of some reference for snacks like Biscuits/Wafers and likes which can be given to these kids. Sunaira you had mentioned had changed the formula so is there any other vendor..

 Now, here is the exact current situation.. she is certainly progressing much better in speech front and i feel that steady improvement is there and she is able to question by thinking if we prompt or give clue to her...Also communicate her needs better. But when she doesnt find something that she wants or something has broken or water has spilled on her (just an e.g) she starts like bit whining sound and then asks for that.. I guess this is more of an anxiety behavior

She speaks in a very loud tone, this almost sound like yelling at time.. also behaviour wise there is a change. She goes to Day care after school from 12.30 to 5.30-6. Yesterday i went to pick her up, there were 2 other kids, she was sitting quitely with other kids when i entered, just 2 mins after i entered she started pushing and pulling another boys head, perhaps she wanted to play with him but was bit violent at the same time.. When i asked the care taker is she like this always, her immediate answer is NO, i guess she is excited seeing you so she is doing this. She said that but with that particular boy she keeps doing such things often.

Again when we were on vacation, behaviourly she was not very best, she was throwing tantrum while eating (read as not co-operating to eat). She was going and taking other kids pencils/crayons/toys etc and refused to give it to them. When we go to someones house she will have few of her crayons only but when she comes out of the house she might have couple of their pencils/eraser/some small toy etc.. Even those kids when persuaded by their parents will let her take it but when i ask my daughter to give it she will not. Actually till she turned  3 she used to give others what they ask and never will be adament, but last 6 months she never listens/budges for such request.

Another incident, 2 days back we had a visitor and he was there for close to 1 hr, during that time she was yelling with some random things to the extent that we were completed disturbed in our conversation and literally i had to take her to another room and keep there for 10 mins. That time i tried telling her politely that someone had come and they are discussion but still she was laughing and didnt want to listen so i tried to make angry face and even signed that i will beat her but that too didnt help. She doesnt listen and act according when we try to discipline her.

Any suggestion on how to handle this will also help?

I try to use polite way by explaining her, then i try scolding and light beating but once 3-4 days back i beat her very harshly and she starting crying a lot. 

In OT center she is quite and does what is told. However i need to check in school how she is. I might have open day for 2nd term sometime within atleast a week.

So far in school, they had not told any behavioural issue. They use to highlight only on speech, attentiveness, going to her imaginary world. They are happy with her in academic front to a finer extent.

 


NJ 2012-01-07 00:26:08

 

jyothi,

I'm sorry to hear about your issue with DHL. My experience with them has so far been good, except that once my hemp supplement was stopped by the customs and it took nearly 3 weeks to clear, else everything was ok. I was billed exact 30% of the product cost as total customs duties. But they charged a little amount-around 300 as handling charge. DHL has a customer care number. I think its different for different cities. This is a 24 hour support I think. You can call them and ask them on the charge. tell them the original invoice amount and the duty you have been charged and let them figure it out for you. For me they always gave me the original invoice and the customs receipt. you can tell this issue to customer care and ask why this is happening. If there is any disprecancy, you can also report it to iherb and see what they have to say about this. 

I dont know about the akhil health foundation mumbai, but my gut feel is that they would anyway add the shipping charge , but possibly since they are buying in bulk, it may be cheaper. You can inquire with them , as I have no contact with them. Their response to my emails were very delayed and I couple of times had to send them reminders and report to kirkmans, so I stopped buying from them. 

How much is the dosage of fish oil you are giving your daughter now, and which brand? You can try reducing the dosage for a month and then work it up. Some children have problem digesting fats and possibly that could be an issue. My son had this problem initially with Evening primrose oil, but now he is ok with EPO. For bacteria issue you can try the deworming option first- I used natures answer's black walnut and worm wood extract (the minimum dosage of 26 drops). This also helps with the yeast. I never had success with Biotin. Somehow I am never able to get the magnesium to Biotin ratio right.Biotin is said to use magnesium and so If we supplement Biotin, we have to increase the magnesium to prevent constipation- as Biotin uses magnesium. I am having success with just GSE though for yeast control. Typical dosage for my son now is 5 drops twice a day. GSE is cheap also. Start off slow and increase the dose. That means start with 1 drop and increase as per required. But the issue is GSE is hard to take as its very pungent, But this is not an issue with my son as he has desensitised himself to the taste in medicines. Goats milk contain casein. But its different from the casein in cows milk and some children do well on it. If you have already seen an improvement in stopping cows milk, then you can add goats milk and see if the behaviors are back. High B6 with little magnesium helps with anxiety and meltdowns with some kids. I think this combo is there in the food science DMG that you have already purchased. Dates is high in sugar. Yes too much  rice based diet does tend to increase yeast. I give idlies with lentils curry for dinner and bobs redmill gluten free oats for breakfast. He has rice in the afternoon. I have not given Bajra for my son, But I read up on the internet, it looks to be gfcf.  

To maintain ph balance, the diet has to be rich in raw veggies and fruits - http://thepaleodiet.com/nutritional-tools/acid-base-balance. Why did you check the ph balance? Did a doctor asked you to take it? If so what for?

 

 

 

 

NJ 2012-01-07 01:01:58

 

Hi VL,

Wish you a happy new year to you too. I think for a start eliminate all sugar and high sugar fruits. restrict it to not more than 2.5 gms per day per day. Eliminate all artificials colors, flavors and junk food(like burger, sandwich etc). Try this for 3 months. If you are trying the GFCF then it needs to be followed 100% for sometime since some children have problems even with trace amounts of casein ingested. So if your daughters tooth mousse has casein, then it may not show the correct result because some children react to trace amounts also. Some people start with Feingold diet and then move on to GFCF if required. Similarly you could try start with feingold diet(http://en.wikipedia.org/wiki/Feingold_diet) which means avoid all artificials and high phenolic content foods. Also avoid sugar and high sugar fruits/foods. This may help reduce yeast naturally and control hyperactivity. This means you may have to stop complan, bournvita etc as these are high on artificials. If you went cold turkey on the feingold diet with sugar free diet, you would notice a difference within 3 days to a week regarding yeasty behaviors. Since you have problem implementing GFCF, you may try Feingold + sugar free diet first to see if it helps.

I never tried anything apart from sunira. Once I gave orgran biscuits, but what I realised was that it was so high in sugar that his hyperactivity increased immediately after ingesting it. So I stopped processed foods. For about 3 months I was actually avoiding to give snacks since he only wanted sugar based snacks like caju sweets, laddoos etc. To school I send only fruits for snacks at morning. Some parents I have seen send boiled vegetables or tiffin items like idly, poha, rava kichdi etc. Now during evening I give him snacks like mixture, sev, pakoda, maa laddu(twice a week), murukku, adhirasam, nendran/karpooravalli/hill banana,paruppu vada,  soup, soondal etc--Just keep giving one different item every day. 

These children may need to be prepared well in advance. Since you daughter appears to have some understanding abilities, let her know in advance that a visitor is coming and what is expected of her. Keep reminding her from time to time of how she is expected to behave with the vistor before the visit. I had to do this with my son, even now at times he gets in the face, if the visit is sudden or if I forgot to prepare him for the event. Similarly when you go to a house also , prepare her for that visit. Tell her what is expected of her in their house- i.e she should not take their toys home, she can play with them there, but she should keep it in their house when she leaves. First see if it works by explaining to the child in advance.  

 

jyothi10 2012-01-07 18:51:44

 

 Hello Nj,

Seasons greetings to you.  Its okay,, my experience with dhl was never good, I was working for seven years, dealing in and out with these guys.  I will address this to their complaint cell.   Thanks for the bacteria info,  I used to use zentel earlier, stopped.    I also have started oma water that is ajwain water which we get in karnataka for deworming.  I will check on with worm wood extract.  In your earlier msg, u did mention about mito cocktail and l-acetyl carnitine.   I give her baby dha from nordiac natural's now.  I give her one ml, it is not flavoured.  the epo is about 328 and dha 480, very low, now for digesting the fish oil , how much ratio of carnitine should i mix (as most of the brands have 500 to 1000 mg).  Also abt mito cocktail, its a bix mix of cq10, vitamin bs and minerals.. any idea for a two year old with wt 10 kgs.  Can I just start with l-carnitine first..

I give fish oil directly and she pukes it out.. I do not know if I mentioned, I also bought nature's way calcium syrup and elderberry syrup. Elderberry is very good, my cold disappeared,  I am giving to my daughter now.  Since she has oro motor issues, she spits out most of the supplements, now I mix it in either muskmelon juice or ragi or tender coconut nut/dates/almond shake.   I give her the multivitamin mixed in the ragi and also the calcium syrup mixed with juice. Probiotics, I give directly with water.  Is this okay as I have read that some food hamper the absorption of supplements.  I have yet to start with dmg.. so will go for the dmg  next week  (u right abt the high b6 and mag in it). Let me see how it works.  I tried buffered mg gylcinate with her, she still has sleep issues.  U are also right abt the magnesium and biotin, when I was little, too much magnesium that is milk of magnesia got me on loose stools. and too little and with calcium, constipation.  So I am trying the syrup now.  Yes gse has a very strong taste.. I have yet to order it.   But the core issue is diet.. somehow I feel she eating too much of rice..my jowar mix got over and i gave her wheat rotis.. I have to keep everything in stock.  With christmas,, everything went haywire... Isnt dates a natural source of sugar.. what abt stevia then.. I tried ragi with salt.. my dd did not take it. I need to add something sweet. But I am off cows milk totally.. In anothe15 days, I will get camel's milk powder from my relatives from the gulf.   Is it good.. I will try goat and camel's milk alternatively.  I have seen improvement as far as cold is concerned.. speech is more or less the same..she talks in random and is hyperactive (yeast/sugar).   But need to tackle bacteria..

PH balance is bcos of the high anion gap and it is 23.7 that is why doc had told me to put eno in her bathing water.  Rice is acidic in nature.. so need to combat it with alkaline foods.  Even when the electrolytes are not in sync, there can be autistic behaviours.. so trying to tackle to this too.. thanks for the link.

 

jyothi10 2012-01-07 19:00:04

 

 greetings to you too VJ,

I will directly come to jowar and ragi,, they should not fluff.. it should be grain and muddy.  Please make jowar puris on a non tick pan.  When u break it, it should be like biscuit. U can check gujrati/marathi cookery websites.

We take jowar/ragi from the local store, abt a kilo for my daughter, was the grains, expose them to sunlight and then grind them.  These grains do not have gluten and this is why they are not elastic, it readymade attas strech, they have some mix, maybe corn or wheat.

good to know that your husband has realised the situation to some extent. My husband know everything and acts as if its nothing. Still says everything is normal. 

Keep trying hard.. I have come across doast in chennai,  u can take your family members there.. evern if your daughter's issues are behavioural and not chronic.. knowledge from people who deal with developmental issues get more digested..Its much better rather than we trying to make our family members understand.

 

 

 

 

VL 2012-01-10 16:33:50

 

Hi NJ/Jyothi,

  I came across in one of the healthfood website (http://www.wellnessqed.com/autism.php)   giving recommendation on the supplements as below. Is it right info, however it says to be given under medical supervision. Is it safe to go with this to start with. I understand that there is Trial and Error in both diet elimination and the supplements.

Does Age of the child matter for the dosage. My kid is 3.9 yrs currently, will below doasge be good for start

Supplementation of the diet with vitamin and mineral therapy [ To be given under medical guidance and supervision]. Below is a list of supplements and dosages that are recommended:

 

  • Calcium: 300 mg twice a day. This can be done in two doses, or once at bedtime to facilitate sleep
  • Magnesium: 50 mg twice a day.
Vitamin C: 50 mg twice a day.Vitamin B5: (Pantothenic Acid) 500 mg twice a day.Vitamin B6: 100 mg twice a day1 multiple vitamin daily.DMG: 125 mg twice a day.Pycnogenol: 50 mg twice a day.Gaba: 75 mg twice a day

 

 

jyothi10 2012-01-11 22:11:54

 

 Dear VL,

I have gone through this earlier but I have managed to give  my daughter only  the multivitamin and calcium/mag liquid.  Most of these supplements come in capsules and my daughter cannot swallow a capusule, I am battling with homeopathetic pills, I  either dissolve the tablet or pour the capsule contents in her ragi mix or juice,, with this too, she can reconize the change in taste and at times refuses to take it.

It also depends on how strict you diet is,, I have eliminated milk and milk products but since christmas, she has eaten sweets.. now she she bacterial infections and has loose stools and fever, maybe bcos of the multivitamin she does not have cold but her stomach is in a bad shape.. so giving her herbal  medicines now..

It also depends on body weight,  pleas start one at a time.. Probiotics and enzymes are also important. these things also need to be adminstered.  The above supplements are high dosages, if one wants to start for the fist time.  Please start the multivtamin first.. I have not added enzymes, maybe i should have.. at times, children are not able process the vitamins too, it too much of a load on the liver.   If you have a pediatric who is open to bio medical, you can consult first.  

U often mention that your daughter talks in that case  get your daughter to swallow the pills but pls reduce the dosages first, all the vitamins/minerals are hot in potency and too much can cause loose stools,, maybe now my daughter is battling loose bcos of the bacterial infection and also the heat generated in the body due to vitamins/minerals.  Also, you have mentioned DMG, which was suggested to me for speech.. I do not if it is necessary in your daughter's case..

I have to do one more round of ordering of enzymes and other stuff..At times if one supplement does not work you have add other supplements to make it work.  

From where are you going to order supplements, iherb or ourkidsasd...

http://www.kartzinelhealth.com/ and http://brainchildnutritionals.com/.  these two companies offer  spectrum starter kits.  One of the parents in my therapy centre had bought a number of items from both of them, the child is verbal.. I do not know much she gives or what is the combination but it has worked.  She also goes to a dietician who is a M.D and maybe consulting doctors in the US, as the family frequently travels to US.  But she too started one at and time and started the diet first.  I do not discuss much with her as expect for me all  parents, work along with the therapist.. I am made to sit outside but I have gatherered how I could from them. The child in particular goes to an international school.

 

 

 

 Former member 2012-01-12 09:58:14

 

 hi i was just reading thru this thread...lots of info thanks so much.:) my 2yr 5 month old daughter has issues with casein, we only recently found this...she was not growing, she's only 9.9 kg and height also very less...she doesnt speak very well either...

our diet at home is basically gluten free..mostly rice, veggies and non veg..so glten's out...but i cant seem to find a replacement for casein... i know ghee n buttermilk is casein free...i dont give her any milk or paneer or cheese...she reacts very badly...she gets very white and frequent motions then.. 

i was wondering if there is any casin free milk powder available in india? ive asked in all medical shops, but none of them seem to have it..ive heard of darfree, but i guess its not available in india.. 

its just that when my elder daughter drinks milk ( i have to hide and give her) but incase the little one sees it, she literally begs me to give her.. it just breaks my heart...so if anyone knows any casein free milk powder or any other milk substitute...pls let me know...

ill be shifting to blore soon..so any stores there will be great or else any links from where i can order on the net..thanks so much...

jyothi 

 

 

VL 2012-01-12 17:30:46

 

Jyothi,

 I take your point on the dosage.. I still havent ordered anything yet (I have always been slow on this process) as i wanted to streamline the completely with diet chart and supplement.To start with i will want to go with Multivitamin / Calcium with vit D and Mag. I am looking at Kirkman's perhaps. I see that ourkidsasd website looks better, do you have any idea on their payment and delivery process for international client? I have now have kind of put in GF diet now, giving her jowar/Ragi puris (not turing out great though) No wheat chappathis/puri. Not giving her biscuits also. As NJ had suggested may want to start multivitamins bit later once the diet is streamlined. But may start with Calcium supp.I want to create a Daywise diet chart on what needs to be give at what time as I am not at home in weekday and also she goes to Day care. Actually i am totally at wits when coming to finding out if she has Phenol issues / Yeast / Bacterial infection etc. I havent come across any significant  stomach related problems with my kid like Constipation or diahera (though there has been very sporiadic incidences of loose motions once a while) But sometime she might not pass motion for 2 days may be like once a month or so.. In Dec end we had gone on vacation to Hyd, there alone she was getting mild fever so had to administer Crocin syrup as a precaution. So i am still at cross roads for enzymes and probiotic selection.I guess i can go with fish oil as it improved speech. I was some product - NourishLife speak in ourkidsasd, but looks bit expensive. It says it needs to adminstered with high fat food or snacks so just thinking Main issue i see with my kid is that she isnt very glued to general environmental happenning and i feel that either she forgets what is happening throughout the day in school/daycare or she isnt interested in sharing when i ask her. Is doesnt seem to go to past, think and answer. Otherwise for things that she wants she communicates, asks few questions (again she will repeat same ones mostly)She speaks little of 2 combination sentences, still for her age there is no attempt of multiple sentence speech and interactive speech which needs imprompt thinking.  What Ragi dishes do you give your daughter?I too want to consult a good dietician or Nutritionist who has experience in this field. I need to look out in chennai. If you know anyone here pls let me know How do you see the improvement in your kid with Therapy and diet now? May be too early  
 

jyothi10 2012-01-12 23:58:36

 

 Hi VJ,

My mom used to have such students, they used to come for maths to her.  She first used to start with story books or comics to get them interested and then start her subject.   Whatever time you get start reading and make her sit besides you.  about 20 years ago my mom used to get students belonging to joint families who were ignored either bcos of some problem in the house or they were slow.. I remember she used to go into their world to get something out from them  (out an hr, half an hr used to be question and answer session, she used to gather all slow students in a group and discuss whatever they liked, then start with maths).  Now she gets agitated with my child...  

Yes, u can look at enzymes and probiotics, they are on the expensive side,, pls try http://www.enzymedica.com/or you can just order bifilac from here in India,, it comes in granules.

I make porridge out of ragi .  For one tablespoon of ragi, 2 almonds and date plup (steamed and ground to a pulp).   I am going to change this too and try ragi with a little fruit like muskmelon or custard apple.  No puris or chapatis, though you can try ragi laddoos, pls substitute gur instead of sugar.  I am not very sure about the receipe, try in on google.   Sorry, do not know any one is chennai,, u can try apollo hospital.. I only noticed that cold reduced..still have to see other changes.  Mine is a different story.

Hello Jyothi

You can try goat's milk, I think it is available in bangalore, it woynt cause that much of an allery as cows, atleast in my case it hasn't.

http://www.bangaloremirror.com/index.aspx?page=article&sectid=10&contentid=201109022011090221452962be090ee3

 

 

NJ 2012-01-13 04:45:09

 

Jyothi,

Since your daughter is having loose stools, stop all the supplements and streamline the dlet for 3 months. Ragi caused digestion problems for my kid. and the palm sugar which the nutritionist told me to add to ragi to sweeten it, caused yeast. And ragi does not sweeten unless a lot of palm sugar is added to it. Ragi was the only food that my son did not get used to drinking inspite of forcefeeding him for 6 months. I finally stopped. How much ragi are you giving and how many times per day. Give your daughter only mung bean curry and idly in the night for sometime. Its easy to digest and try to finish dinner by 8 pm. What are the list of food stuffs that she is currently on now? Dates are high in sugar and phenols. Stevia is a natural sweetener, with a low glycemic value, so will not increase yeast. one scoop of stevia goes a long way, but some will find the taste a little getting used to. For a week , give only idlies and mung dal for meals, see if the sleep gets better, then expand the diet from there on one by one so that you will know what food is causing the issue.  After a week on this you can also try the multivit and see if that is a problem. Apart from food allergens,  high phenolic foods, yeast, worms, too oily food in the night can cause sleep disturbances.

 

 

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