For parent of an autistic child..

15 replies, Page 1

 Former member 2013-10-01 13:19:36

 

Dear All Parents of Autistic Kids

It’s a very tough job being a parent of an autistic kid.  

Many of us follow different diets, Biomed, ABA, RDI etc. and each and everyone has mix of bad and good experiences and every kid is so different.

I started this thread to share your experiences regarding diets, new treatments/drugs, different therapies, give suggestions to parents of just diagnosed kids and clarify their doubts, and keep yourself updated.

TIA


sanchia007 2013-10-03 19:23:01

 

Sometimes life becomes very tough to deal with day to day experiences and sometimes it is difficult to understand wheather the behavior is really for what reason but for the love of my child iam ready to take up on this forever
 

Violetlight 2013-10-03 20:25:57

 

Good day!

only very very basic info given below; 

For a new parents, www.autismspeaks.org will give a overall view on ASD. Especially their 100 day kit will give guidelines of how we should start the process. Ofcourse, you have to customize according to your place.

For speech, www.hannen.org will give a guidance. They advice based on your child's current communication level. Just you can take tips. But, their book "It takes two to talk" is a good resource. 

Sensory integration is the topic at least we should be aware. Your OT mostly will guide on this. 

Let it be any therapy , parents need to know what is happening. Please try your best to attend the therapy sessions - the maximum possible with your child. 

Forums like parentree, yahoo group - india developmental disabilities have so much suggestions , experiences from Indian parents. It's a huge moral support which we will get it here. Also, parents can get most of the  therapy centres information, doctors information from these forums. Be a regular reader to update yourself and to encourage fellow parents, when necessary.

Best wishes

 

 Former member 2013-10-04 11:49:24

 

ABA + biomed is always very effective.

If you don’t believe Biomed stop reading this post.

First of all parents are the primary healers for the autistic child.

Diet:

According to opioid-excess theory, autism is the result of a metabolic disorder. Peptides with opioid activity derived from dietary sources, in particular foods that contain gluten and casein, pass through an abnormally permeable intestinal membrane and enter the central nervous system (CNS) to exert an effect on neurotransmission, as well as producing other physiologically-based symptoms.  Gluten-free and Casein-free diet has helped many of the autistic.  Along with GFCF it has to be soy free (closely related to casein and gluten), sugar free (to avoid yeast growth) and corn free (omega6:omega3 is 46:1, it’s so high and chances of inflammations will be more).

Rotation and Variety in Diet, Specific Carbohydrate diet etc followed by so many parents.  Do lab test for food allergy panel and rule out the possible allergens.

 

Vitamins and minerals:

Vitamin and mineral deficiencies are common autistic kids. This is understandable as ASD are commonly associated with gastrointestinal problems and sensory issues. It is also possible that the underlying biology of autism may cause deficiencies in the digestion of certain foods, which could affect vitamin intake.  Multiple studies evaluated the role of Carnitine deficiency. Carnitine is a nutrient used by cells to process fats and produce energy.  Do the lab test for Carnitine levels.

 

Most of the ASD kids have deficiency in minerals and vitamins and some may have harmfully excessive levels of certain vitamins, minerals or other ingredients. minerals need to be balanced not too high and not too low.

Zinc: ASD kids have Zinc deficiency, and too much Zn causes yeast overgrowth, so this mineral to be tested every alternate month. 

Copper: is usually high in the autistic (excitotoxicity of the amino acid cysteine). Very low copper causes anemia. Supplements of molybdenum, manganese, zinc and vitamin C makes copper balanced. If kids copper is high then avoid foods with Cysteine (onions, Garlic etc). 

Selenium.  Need for more selenium (naturally removes heavy metals like Mercury) Selenium from biological sources is usually tolerated better (broccoli etc).  Caution: don’t give more selenium when Cu is more.

Calcium. Lack of calcium in ASD kids caused eye pain and they physically harm their own eyes (eye poking).  So they need enough calcium (they are already on dietary free so need even more). Caution: parents who are doing oral chelators (EDTA etc) have very poor absorption binds with most of the minerals and remove the heavy metals along with most useful minerals. So they need to give high amounts of calcium and other minerals.

Manganese. More of this causes learning problems. Less causes hypoglycemia.  Caution: If there is large intake of zinc, calcium, magnesium and vitamin B6, Mn needs to take more even if it is in range. 

Sulfates. Sources are Epsom Salt baths, zinc sulfate and other minerals in the sulfate form. If baths are difficult apply creams.

Making magnesium Sulfate (Epsom Salt) Cream â€" Take a table spoon of Epsom Salt dissolve in one table spoon of warm water and mix with four teaspoons of coconut oil to create a skin cream. 

Magnesium is one of the most important supplement. Good source Epsom salt baths or cream. Use oral Mg if there is constipation. This lowers blood pressure, calming effect, and solves sleep issues.

Too much or too little Iodine is not good. It is necessary for the formation of thyroid hormone and keep pathogens under control. Low iodine not tolerated if the person has elevated antigens to thyroid. Some kids are allergic to iodine. Exposure to chlorine, bromine and fluoride will deplete iodine.

Avoid Chlorine and fluorine

Vitamins

Folic acid.  Folic acid supplements should be balanced with B12. Active form of folic is called folinic acid. Folic acid is works against arsenic poisoning. 

B12.  Most of the ASD kids have intestinal problems creates lack of B12. Subcutaneous is better way to administer (MB12 shots).  Nasal sprays are also good. Methylcobalamin (MB12) supports the healthy functioning of the brain and nervous system. Cyanocobalamin contains cyanide and is therefore not the best form of B12. It does cost less, and therefore it is most common form of B12 on the market. 

MB12 shots along with folinic acid avoid an imbalance between the two. 

DMG and TMG. (Dimethylglycine and Trimethylglycine.) These improve methylation in the body. Most of the studies proved methylation improves language in ASD kids. Some kids tolerate DMG but not TMG. It needs to be balanced with folinic acid and vitamin B12.

B6 and coenzyme B6 are proven to be one of the most important supplements for the ASD. A mixture of the two forms is often effective. More parasite/yeast growth causes impairment in active coenzymeB6. Coenzyme B6 will interfere with the PST enzyme, which is often weak in ASD kids. Alone B6 is not at all effective.

Caution:

1. Coenzyme B6 should be given in the morning. Otherwise, first couple of weeks it might interfere with sleep.

2. Try folinic acid and B12 first and more magnesium before attempting the B6.

This is just beginning; I covered here about diet, allergies, Minerals and Vitamins.

Do good read about these things. 

I will cover about EFA, Gut problems and digestive problems, aminoacids, melatonin, Chelation, HbOT, and Namenda in later posts. 

 


Violetlight 2013-10-04 13:11:28

 

@JoVV
Good day!

Just would like to appreciate your in-depth reading and effort to help other parents who sail in the same boat.

My gratitude and tons of thanks personally as I am in the beginning of learning about all these topics. Great guidance. Best and heart felt wishes to your DS.

I take this opportunity to thank all the parents on this blog who provide knowledge , experience , guidance and moral support.

thanks
 

Chukki1 2013-10-04 23:21:50

 

JoVV,

Thankyou so much for such a detailed informative post.I am sure it's going to help a lot of parents here.thanks on behalf of all of them too.

Please keep the good work going.May god less ur xs and all our kids


 

Chukki1 2013-10-04 23:22:28

 

Sorry for the typo error, ds and not xs
 

 Former member 2013-10-05 00:16:35

 

Thanks Violetlight and Chukki1..
You guys too share your ideas..
 


 Former member 2013-10-08 11:28:08

 

This is about EFA ......... 

Essential Fatty Acids (EFA)

Kid brain requires more of this but they cannot synthesize.  Mother’s milk is a very good source for EFA where formula milk does not have.  

Two major categories of Essential Fatty Acids (EFA) are Omega-3 family and Omega-6 family.

Omega-3 group of three A-linolenic Acid (ALA), Eicosapentaenoic Acid  (EPA), and Docosahexaenoic Acid (DHA).  Source of ALA is from Plants (eg. Flax seeds, hemp etc).  EPA and DHA is from marine sources (Salmon, Sardine and Etc..)

Omega -6 fatty acids are Linoleic acid (LA), Gamma-linolenic acid (GLA), Dihomo-gamma-linolenic acid (DGLA), Arachidonic acid (AA).

We need to balance omega-6 and omega-3 via diet and supplements.  Omega 6 to omega 3 ratios must be 1:1 to 1:4.  There is risk of inflammations and other effects if omega6 to 3 is more than 4:1.

So recommended dosage of omega -3 is around 40mg/kg and omega -6 is 4 times less than omega -3

Body converts ALA to EPA and DHA. DHA is mainly for growth and cognitive functions and EPA is for regulating inflammations.   Our kids mostly have DHA (omega-3) deficiency. GLA (omega-6) is for Nerve, brain, immune system development.

The source of most commercially available omega-3 or omega-6 or fish oils is from marine fish.  There is a chance that these oils contains little amount heavy metals like mercury.  So buy from companies which have certificate of purity with 0% heavy metals.  Otherwise oils from marine algae are free of heavy metals.  Our body (especially males) has very low conversion rate of ALA to DHA or EPA. So alone ALA does not help. 

Precisely this is about Essential Fatty Acids. If you guys have any doubts google it or ask me.

I will cover and Gut and digestive problems in my next post.. 

Thanks .. and god bless our kids.. 

Joshi Vasa

 

YPVS 2013-10-15 11:54:40

 

Hi All,

Can you please let me know how to send a message to a particular person in this forum? Thanks in advance...


Regards
Sindhu
 

 Former member 2013-10-15 14:37:35

 

Go to account on top..

Click Inbox

Click Compose

Type the Nick name of person whom you want to send the message

Send it..

 

aline 2013-10-16 09:25:12

 

what are the commercial forms available? 

I am giving brainwise to my son. But I have heard children's DHA from nordic naturals is better.

Anyone giving that?

Regards
Aline
 

YPVS 2013-10-16 11:46:52

 

thanks a ton JOVV.
 

 Former member 2013-10-16 12:06:06

 

@aline.. 
Nordic Naturals is the best.. The Mumbai distributor of Nordic is not importing this.. but they are going start soon (possibly by this month end)
I talked with brainwise technical person also. They showed me the purity certificates and formulations.. the only problem syrups used in it are not good at all. 
So shift to nordic its better..  

 

 Former member 2013-10-17 16:43:38

 

Gut and Digestive Problems and Probiotics:

These are quite common in ASD kids.

Normal body has different enzymes to digest different (like Carbohydrates, Proteins and Fats Etc.,) large molecules to small molecules. ASD kids have either less activity of these enzymes or in low levels and some kids have chronic constipation and diarrhea.

Digestive enzymes- With very small amount of mercury or pesticides can deactivate the digestive enzyme DPP4 (Digests casein and other hard proteins). Proteases are for proteins, Lipases for lipds/fats and carbohydrasaes for carbohydrates. 

Pain, Gas and Discomfort or some allergies after eating certain products are due to lack of that particular enzyme.

Testing: Endoscopy/tissue biopsy for GI problems or stool analysis

Caution: children should not be put on digestive enzymes until after they have started the GF/CF (gluten-free, casein-free) diet. Otherwise, the addition of these digestive enzymes may raise levels of opiods.

Bile is produced by liver, goes to the gallbladder and then stored there until needed. When food from the stomach enters the small intestine, the gallbladder empties the bile into the intestines. At the same time, the pancreas delivers enzymes and bicarbonates to the small intestines. If for any reason, there isn't enough bile and lipase (a pancreatic enzyme), then the absorption of fat and fat-soluable vitamins is impaired. The stool will be light-colored.

Probiotics alter the flora of the intestines. They don't overwhelm the existing intestinal bacteria but they change the environment. Each kid’s reaction to a probiotic is so different. Examples: Acidophilus may increase D-lactic acid too much in one person, but in another, the acidophilus may replace some harmful bacteria. 

The body has an immune response to probiotics. To get better immune response by probiotics is to rub some of the probiotics into the gums. (Do this after the teeth have been cleaned.)

Another way is start and stop method. It takes 2 to 4 weeks for the body to set up an immune reaction to the probiotics. After introducing the body to the probiotics, stay on them for 2 to 4 weeks. Then take a break for a similar amount of time.

Or

Change type of probiotic every 2 to 3 weeks.

Commercial Digestive enzymes:

DPP-IV-II with Isogest by Kirkman or TriEnza with DPP IV Activity by Houston Enzymes. There are so many commercially available enzymes based on requirement.

Correct me if there is any addition or suggestion.. 

Thanks and Regards

Joshi Vasa

 

Raj192012 2017-11-27 17:50:34

 

Hi Vasa,

Thanks for the information. really it helps a lot for the parents like me. You have posted this information before four years. Can you send updated info? what are the current trends or medicines in the market. What should we do regarding autism?

Thanks in advance. 
 

 

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