Wednesday, April 30, 2014

TB prevalence in China dramatically reduced since 1990 - Can India follow?

China’s tuberculosis (TB) control policies are being credited for leading to a marked reduction in the prevalence of the disease in the country by over a half in the past 20 years.
A recently published study, involving a 20-year-long analysis of China’s national survey data, has indicated a drop in TB prevalence from 170 to 59 per 100,000 people. [Lancet 2014.]
The fall follows a scale-up of the directly observed treatment short-course (DOTS) strategy from half the population when it was first introduced in the 1990s, to the entire country after 2000.
“One of the key global TB targets set by the Stop TB Partnership aims to reduce tuberculosis prevalence by 50 percent between 1990 and 2015. This study in China is the first to show the feasibility of achieving such a target, and China achieved this 5 years earlier than the target date,” said Dr. Yu Wang, study leader, Chinese Center for Disease Control and Prevention, based in Beijing, China. “Huge improvements in TB treatment, driven by a major shift in treatment from hospitals to local public health centers implementing the DOTS strategy, were largely responsible for this success.”
China is one of the largest contributors to the global TB pandemic, with 1 million new cases each year, accounting for 11 percent of all new cases globally. In the 1990s, the country began addressing this issue, launching the internationally recommended DOTS strategy in 13 provinces containing half the population. 
Two national surveys on the prevalence of TB were conducted in 1990, and in 2000, when the program was rolled out across the country. Over that decade, it was found that the number of TB cases was reduced by about 30 percent in the areas where the DOTS program was implemented. Nationally however, the number of cases dropped by just 19 percent.
Most recently, a survey of TB prevalence was conducted in 2010 to explore the impact, if any, of the introduction of the DOTS program nationwide. Around 253,000 individuals aged 15 years and above took part in the survey and the results showed a drop of 57 percent, with 70 percent of the total reduction in smear-positive prevalence (78 of 111 cases per 100,000 population) taking place after 2000. Of these, 87 percent were cases already diagnosed with TB prior to the survey, with the number of cases treated using the DOTS strategy increasing from 15 percent in 2000, to 66 percent in 2010. These cases also contributed to a reduction in the percentage of treatment default (from 43 percent to 22 percent; p<0 .0001="" 31="" 84="" and="" cases="" from="" p="" percent="" retreatment="" to="">
“The DOTS program has been much more effective in reducing the prevalence of tuberculosis in known cases than in new cases,” wrote the study authors.
In an accompanying editorial, Dr. Giovanni Battista Migliori, director, WHO Collaborating Center for Tuberculosis and Lung Diseases in Italy, and Dr. Giovanni Sotgiu, University of Sassari-Research in Italy, said these data are important for the global TB control and elimination agenda. “[T]he new tuberculosis targets likely to be considered by the 2014 World Health Assembly include a 50 percent reduction in tuberculosis between 2015 and 2025.
“The results from China show the feasibility of achieving such a target by aggressively scaling up the basic programmatic elements of tuberculosis control both within and outside the public 
Source (requires free registration)

Tuesday, April 29, 2014

How to chose infant formula for the baby - what does Dr Sears (USA) have to say?

Choosing Formula

Be sure to choose a DHA-enriched formula. Most, if not all of the US formula companies will offer AA/DHA-enriched formulas. For information about the brain-building benefits of DHA, try Dr. Sears’ Go Fish DHA soft gels.
When it comes to infant formula, parents need to know a few simple facts:
There are some subtle differences among the major brands of infant formulas which may affect how your baby tolerates one formula over another. Reading the labels may leave you feeling like you need a Ph.D in biochemistry to make an intelligent decision. We want to help you with an analysis of the big three nutrients: proteins, fats, and carbohydrates. The vitamins and minerals in all formulas are similar, since these are governed by strict regulations, however, the nutritional fine points of the fats, carbohydrates, and proteins differ from one brand to another, as the marketing departments of each company are very willing to point out, especially to pediatricians.
Standard formulas are those that are tolerated by most infants. Infants with special digestive needs require special formulas. Here are some guidelines on how standard formulas differ and how to match the formula to your baby’s needs.
Comparing proteins. In looking at the protein content of the big three brands (Similac , Enfamil, and Carnation), you will notice the main difference is in the whey/casein ratio. In recent years there seems to be a whey war going on among formula makers, and each company has its own semi-scientific rationale as to why their product is best. Carnation contains 100 percent whey, claiming that the cow’s milk casein used in other brands, unlike the casein in human milk, forms difficult-to-digest curds that contribute to constipation. As an added perk, Carnation predigests the whey, breaking the protein up into smaller particles which are supposed to be easier for a baby to digest.
Enfamil promotes a 60/40 whey-to-casein ratio similar to human milk. Actually, a 70/30 whey/casein ratio is more typical of human milk, and the whey content of some human milk can be as high as 80 percent. Similac has always claimed that casein was the best protein, and for many years Similac formulas were 82 percent casein and 18 percent whey. In recent years, Similac has “improved” on this, and now boasts 48 percent whey and 52 percent casein. How much of this is science, how much is market pressure, and how many other factors are involved is hard to say. A consumer might conclude that Similac isn’t sure about the optimal protein composition and seems to be going along with the whey crowd, but not as far as Carnation. Similac backs up their protein choice with studies showing the amino acid profile in the blood of Similac-fed infants is similar to the amino acid profile in the blood of breastfed infants. Unlike the manufacturers of Carnation and Enfamil who claim their formulas are most like human milk “on paper,” Ross, the maker of Similac, has departed from this way of thinking and formulates their protein based on what actually gets into baby’s blood, not what is listed on the can. This approach seems to have more scientific merit. Until this whey war is settled, let your baby’s own digestion system be the guide.
Comparing fats. The label tells you that the fat in all artificial baby milks comes from vegetable oils. There is no acceptable alternative source, though long ago some infant formulas were made with lard. The five types of vegetable oils that are used are palm olein (not to be confused with saturated palm or palm kernel oil), soy, coconut, safflower, and sunflower. The different blends of these oils all have percentages of saturated, monounsaturated, and polyunsaturated fatty acids similar to breastmilk, though some rely more on one oil than another. Sunflower oil, for example, is extremely high in monounsaturates, whereas safflower is high in polyunsaturates. Formula companies claim that regardless of the source of the fat, as long as the final blend yields a fatty acid profile similar to human milk it’s okay for babies. Enfamil has even published a study showing that their product has a fatty acid profile similar to that of breastmilk. Actually, comparing the fat profile of human milk with the fat blends of formulas is more difficult than it seems because the fat content of human milk changes with the age of the baby and from feeding to feeding. The fat blend of formulas tries to match an “average” fat profile for human milk (whatever that means).
Of all the nutrients in formulas, the fatty acid profile is the most concerning. While formula fat does contain the two essential omega acids, linoleic and linolenic, it does not have any DHA , the fatty acid vital for brain development. Up until recently, researchers believed that infants could make DHA from these essential fatty acids as adults do, but recent studies have shown that formula-fed infants don’t have the same high DHA levels that breastfed infants do. Babies may need a supply of DHA ready-made. This biochemical infant quirk has caused a lot of controversy among formula manufacturers as to whether or not to add DHA. As it stands now, the DHA precursors, linoleic and linolenic acids, are there, but they are not as biochemically active as they are in breastmilk. In Europe, additional DHA fatty acids are added to artificial baby milks, and some nutritionists believe that without added DHA, American babies are currently fed formulas that have a fatty acid deficiency. Many researchers attribute the intellectual advantages of breastfeeding that are showing up in new studies to DHA. For the most updated information on DHA in infant formulas, see
Another problem with the current fat blends is they don’t contain any cholesterol . On the surface this may sound like a nutriperk, yet we are once again tampering with Mother Nature. Human milk is sort of a medium-cholesterol diet, like all animal milks. The absence of cholesterol is another reason for concern in artificial baby milks.
Carbohydrate comparisons. Similac and Enfamil are practically the same in carbohydrate content, both containing only lactose. Carnation, on the other hand, contains 70 percent lactose and 30 percent malto-dextrin, a table-sugar- like carbohydrate that is, according to the manufacturers, necessary to balance the biochemical properties of the whey.
Let baby be the judge. With current knowledge, it’s impossible to rate one formula higher than another, and they’re all likely to change with time. While the three main brands seem to be nutritionally similar, it all comes down to which formula works better in your baby’s intestines.
Iron-fortified formulas. You will notice at the store that both Enfamil and Similac produce iron-fortified formulas and formulas that are lower in iron. In our opinion, and that of the Committee on Nutrition of the American Academy of Pediatrics, low-iron formulas have no place in infant nutrition. Carnation does not make a low iron formula, but only one formulation that contains the recommended amount of iron similar to that in the other two formulas.
Comment: In India, we are now getting a lot of 'new' infant formulas including Similac that were previously not available. This article though talking about predominantly US brands, does help understand what the companies claim. I would finally say that the best and probably the most helpful line is the one that says "Let Baby be the judge". If you have to use formula ( & I personally strongly discourage its use in children below 6 months age), try one, and if it leads to a constipated gassy unhappy rash prone baby - try a different one after talking to your pediatrician, using this article as a guide.

Low-cost IVF expands global access to infertility care

The recent development of low-cost in vitro fertilization (IVF) programs may expand access to infertility treatment not only in resource-poor countries, but also in the developed world.
One innovative program, developed at the University of Colorado Boulder (UC-Boulder), US, reduces the cost of IVF to just around USD 250 per cycle.
“The researchers made this possible by simplifying the entire procedure of IVF, using generic fertility drugs and basic laboratory equipment that can fit inside a shoebox,” explained Professor Gab Kovacs of Monash IVF and Monash University, Melbourne, Australia. Kovacs was speaking during the 19th World Congress on Controversies in Obstetrics, Gynecology & Infertility (COGI) held recently in Macau.
Using two test tubes and inexpensive chemicals, the UC-Boulder researchers developed a low-cost embryo culture method that can generate conditions very similar to what others are generating with a USD 60,000 incubator.
“In the first test tube, citric acid and sodium bicarbonate are used to prepare a solution containing carbon dioxide, which creates the ideal conditions for fertilization,” he explained. “This is then piped into the second test tube, where oocytes and sperms are injected by syringe without disturbing the air environment inside the tube. Any resulting embryo is examined under a microscope before transfer.”
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Importantly, the ongoing pregnancy rate was 30.4 percent – similar to rates achieved in conventional IVF programs. According to the researchers, this means infertility care may now be universally accessible.
In June 2013, Australia’s largest infertility treatment provider launched low-cost IVF clinics in low-income suburbs of Sydney, Melbourne and Brisbane, providing IVF treatment with minimal stimulation and monitoring. This was followed by another treatment provider, who launched a low-intervention IVF service with electronic interface with patients.
“While the success rates may be lower with these models, they offer affordable IVF services to patients who would otherwise have struggled to access the full service,” said Kovacs.
Source (requires free registration)

Saturday, April 26, 2014

WHO: World Immunization Week: 24-30 April 2014

World Immunization Week celebrated in the last week of April (24-30) - aims to promote one of the world’s most powerful tools for health the use of vaccines to protect people of all ages against disease.

The theme for 2014 is “Are you up-to-date?”.
Protection throughout life
Immunization is widely recognized as one of the most successful and cost-effective health interventions ever introduced. It prevents between 2 and 3 million deaths every year and now protects children not only against diseases for which vaccines have been available for many years, such as diphtheria, tetanus, polio and measles, but also against diseases such as pneumonia and rotavirus diarrhoea, two of the biggest killers of children under 5. Furthermore, adolescents and adults can now be protected against life-threatening diseases such as influenza, meningitis, and cancers (cervical and liver cancers), thanks to new and sophisticated vaccines.
Despite this success, 1 in 5 children are still missing out. In 2012 an estimated 22.6 million infants were not reached with routine immunization services. More than half of these children live in just 3 countries: India, Indonesia and Nigeria. Inadequate supply of vaccines, lack of access to health workers, and insufficient political and financial support account for a large proportion of people who start but don’t finish national immunization schedules. A lack of knowledge about vaccination, on the other hand, is one of the key reasons why adults consciously choose not to get vaccinated themselves or to vaccinate their children.
Are you up-to-date?
This year’s World Immunization Week campaign seeks to address the knowledge gap which can prevent people from getting vaccinated. 
Specific goals are for people around the world to:
  • know what vaccines are available to protect against disease;
  • be motivated to check the vaccination status of themselves and their families; and
  • get the vaccines they need from their local health practitioner.
Increasing public understanding of the benefits of vaccination is a key objective of the  Global Vaccine Action Plan (GVAP), which provides the framework for immunization efforts across the world and was endorsed by the World Health Assembly in 2012. The Plan aims to improve health by extending by 2020 and beyond the full benefits of immunization to all people, regardless of where they are born, who they are, or where they live.

Use of mobile and internet technologies are encouraged as an alternative to or in addition to poster campaigns and events such as public information sessions and media workshops.

Friday, April 25, 2014

Is polyethylene glycol safe and effective for chronic constipation in children?

Chronic constipation is a frequently encountered problem in the paediatric wards and clinics. Your usual line of management has been to prescribe adequate doses of regular lactulose and use sodium picosulphate as a second line laxative or as add on treatment. Recently, you have become aware of a new drug—polyethylene glycol (PEG). As you have not prescribed this drug earlier, you want to appraise the evidence before using it in your clinical practice.


Chronic constipation in children is a common gastrointestinal disorder encountered in general paediatric clinics and forms a substantial part of the paediatric gastroenterologist’s workload. The majority of constipated children have functional constipation and despite laxative use, success is modest. Management options include a combination of healthy eating aimed at increasing fibre and fluid intake, regular toileting, reinforcement with appropriate rewards, and laxative therapy. Combining laxative use with behavioural therapy has been shown to be better than laxative use alone.12 A high level of motivation and perseverance are necessary for these measures to be successful, and hence a continued search for a better laxative in terms of efficacy, safety, and compliance continues.
High dose PEG with electrolytes has been available for intestinal lavage preceding radiological and surgical procedures in children for some time. The electrolytes are added to prevent their loss through the faeces due to the large volume of the lavage, but this gives the lavage solution an unpleasant salty taste. A low dose version, such as PEG 3350, is available with electrolytes (in the UK and Netherlands) or without electrolytes (in the USA); it has been in commercial use only in the last few years and is used in much smaller volumes. It has been classed as an iso-osmotic laxative and acts by opposing absorption of water from faecal material in the large bowel and thus retaining water in the faeces, which is different from the laxatives such as lactulose which draw fluid from the body into the bowel lumen due to its high osmotic load.13PEG is physiologically inert and is not absorbed or metabolised in the gut, giving it an unlimited “ceiling of action”.13
From the available evidence it is clear that PEG is effective for both disimpaction and maintenance in children of all age groups with chronic constipation. The compliance with PEG treatment is high. In the controlled studies,1–4 PEG has been shown to be more effective than a placebo and lactulose, and at least as effective as milk of magnesia, with a much higher compliance than any of the others. It seems safe with or without added electrolytes. Only one of the above studies actually assessed the serum electrolyte levels post-treatment; abnormal levels were not found.10 Literature search did not reveal any case reports of adverse effects to the use of low dose PEG 3350 with or without electrolytes.
There are still some unresolved questions such as the issue of adding electrolytes, the most effective molecular weight of PEG (PEG 3350 v PEG 4000), and the safety profile of the drug in all age groups. The drug appears promising, and though its use at present is mainly in those with inadequate response to other laxatives, it is increasingly being used as first line treatment.
Comment: In India we have had Laxopeg (PEG 3350 without electrolytes) and Ezlax (Macrogol 4000) available for some time now. Since my daughter has functional constipation, I have been using these for a long time now. Now Dr Reddy's has come with a formulation (MuOUT - PEG 3350 with electrolytes), and I was trying to figure out which is the better formulation.
Here is what I feel. 
  • Ezlax is cheaper - Rs 13 v/s Rs 28 for Laxopeg - prices of MuOUT would be around Rs 16 as per the company rep
  • Laxopeg claims direct import of raw material from DOW chemicals USA, leading to better product
  • Both Ezlax and Laxopeg are generally well tolerated - Ezlax appears like Fanta (orange drink) while Laxopeg becomes a clear colourless & odourless solution
  • Adding electrolytes does not appear to be clinically indicated in managing chronic constipation - since there is no significant electrolyte loss. It possibly makes sense in the surgical or disimpaction procedures where high doses are needed in adults mostly
  • Adding electrolytes can possibly lead to electrolyte imbalance
  • Adding electrolytes can possibly lead to salty taste, reducing compliance


  • Low dose PEG is effective, both in the short and long term management of constipation in children.
  • Low dose PEG with or without added electrolytes is safe in the treatment of constipation in children.
  • More studies are needed to determine the most safe and effective form of PEG in children.

Wednesday, April 23, 2014

Is this a measles vaccine side-effect?

Question: About 4 days before measles vaccine administered to my 9 months old twin daughters. From yesterday they suffering 101 fever with mild stomach upset and pain.they not able to eat and feed as they vomit after that. Whether this is due to measles vaccination if yes then how long this problem persist.

Answer: The measles vaccine occasionally causes side effects in kids who don't have underlying health problems. The most common reactions are fever 6-12 days after vaccination (in about 5%-15% of kids vaccinated) and a measles-like rash, which isn't contagious and fades on its own (in about about 5% of vaccinated kids).
What you are describing is likely due to a viral infection, and should improve over the next few days,
Dr Gaurav Gupta

Tuesday, April 22, 2014

How can I limit my preschooler's ( 3 to 4 year old child's ) video-game playing time?

Douglas Gentile
developmental psychologist
Some experts think children under the age of 3 shouldn't even be playing computer or video games, that they're better off playing with more hands-on and less abstract toys, such as building blocks. But if your preschooler has already acquired the video game habit (maybe through an older sibling), now is the time to start setting limits. First, you have to assess how much he's playing and then consider the other things he does with his free time. Most child development experts recommend that children's "total screen time" — which includes watching television and videos, surfing the Internet (for older kids), and playing computer or video games — be limited to one or two hours a day. If your child is playing a favorite game for, say, 45 minutes a day and watching one program on television,and getting some physical play time in each day, then I wouldn't be overly concerned about curtailing the game-playing. On the other hand, if he's glued to the joy stick for hours on end, he's playing too much. Here are some suggestions for keeping video-game playing time in check:

Set a time limit before the game begins. For instance, if you want your child to play for only 30 minutes, tell him that's the limit and set the kitchen timer. When the timer goes off, so does the game, no questions asked. When he balks or tries to negotiate more time, calmly restate the time limit. If he refuses to stop playing, give the game console a "time-out." Unplug the game and put it away in a designated time-out place for as long as you feel is appropriate.

Have a solution for the "But I'm in the middle of a game!" protest. Almost every game has a "save game" function, so your child can pause mid-game without losing any points, clues, weapons, etc. You may have to help your child figure out how this function works.

When "time's up," suggest a few alternative activities, such as helping you cook, reading a book with you, or doing an art project. This should help ease him away from the game.

Require that any chores, such as putting away toys, be completed before playing games or, for that matter, before watching television or videos.

Don't put the computer or video-game console in your child's room where he can play unsupervised.


Comment: This is a big problem in Indian children since now with the changing lifestyle many couples are both working, and there is easy access to all kinds of devices to play video games. Peer pressure (believe it or not) also leads to increased tendency to play games, since other children going to playway or day care are playing games. Parents need to get more involved with the kids, and give them alternatives to do, since just telling them NOT to play games is not likely to work. Kids at this age need to be kept busy, and alternate activities are essential to reduce 'screen time'

Friday, April 18, 2014

Status of Pentaxim shortage - when is it likely to become available in India ?

There have been a lot of queries about the lack of availability of Pentaxim (or any other acellular pertussis vaccine) in India for the last few months.
The good news is that as per the company representatives, the next batch has landed in India and gone for mandatory testing (to Central Research Institute, Kasauli) prior to sale in the Indian market.
The bad news is that it will still take at least till april 2014 end to reach the market, and the initial supply will be very limited. It is likely that another batch will become available somewhere in mid May which will lead to streamlined supply of the vaccine. As stated earlier, I continue to suggest that unless your child had a bad reaction to a previous DTwP (seizures, unexplained crying for many hours continuously, huge swelling etc.) I would recommend going ahead with the normal DTwP at present for the primary immunization (less than 6 months age). For kids getting a booster at 1.5 years, it is a matter of personal choice, and waiting for a couple of weeks may be appropriate if the parents want to take the acellular less painful DTaP vaccine. 
Please remember, the painless vaccine is ONLY better in terms of lesser local side-effects, it is NOT more effective. If anything, recent research suggests that the earlier DTwP may be in fact more effective in preventing pertussis (whooping cough = kaali khaansi).

Tuesday, April 15, 2014

AAP recommends screening teenagers for alcohol & substance abuse using CRAFFT - just takes a minute ....

Screening for the use of alcohol and other drugs should also be initiated at age 11 years. The AAP recommends the CRAFFT screening tool to identify at-risk children and adolescents. This tool includes 6 questions:
  • Have you ever ridden in a Car with anyone (including yourself) who had been using alcohol or other drugs?
  • Do you ever use alcohol or other drugs to Relax, feel better about yourself, or fit in?
  • Do you use alcohol or other drugs when you are Alone?
  • Do you ever Forget things you did while using alcohol or other drugs?
  • Do your Family or Friends tell you that you should cut down your use of alcohol or other drugs?
  • Have you ever gotten into Trouble while using alcohol or other drugs?
A score of 2 positive responses or more on the CRAFFT instrument indicates possible problem substance use, and there is a steady increase in this risk with higher scores above 2.

Source (requires free registration)

Tuesday, April 08, 2014

FDA Clamps Down on Indian Drug Makers

While visiting India from February 10 to 18, 2014, FDA Commissioner Margaret Hamburg, MD, announced plans to increase regulation of pharmaceutical manufacturers in the country amid concerns about the safety of medications they produce. The number of FDA inspectors stationed in India, which is the second-largest supplier of generic medications to the United States, will increase from 12 to 19.

“We need the same level of oversight whether it is within our borders or outside,” Dr. Hamburg said, according to theWall Street Journal.

In the last few years, the FDA has banned the sale of drugs in the United States produced by some plants in India run by Ranbaxy Laboratories Ltd and Wockhardt Ltd due to shortcomings in manufacturing standards. A Ranbaxy plant was accused of faking test results and found to have laboratories in disrepair and a sample-preparation room overrun with flies. Ranbaxy pleaded guilty to a felony and paid a $500-million fine, the largest ever imposed on a generic drug maker.

Inspections of Indian facilities are being financed with some of the approximately $300 million in annual fees being collected from generic drug manufacturers based on the 2012 Generic Drug User Fee Act. According to Dr. Hamburg, the additional inspectors will speed up the approval of Indian pharmaceutical plants.
Published Online: Tuesday, March 11, 2014 

Monday, April 07, 2014

WHO vaccines and diseases page expanded and updated

Dear All,

We wish to inform you that the WHO IVB vaccines and diseases website has been comprehensively updated.

As of March 2014, there are 27 websites covering a list of core vaccine-preventable diseases, together with diseases which are the focus of major vaccine development efforts. Each of the 27 pages contains links to resources on the most recent WHO vaccine position papers, vaccine safety summaries, and guidelines for national regulatory authorities and vaccine manufacturers, lists of prequalified vaccines, disease burden estimation and surveillance where available. Links are provided to key WHO technical documents in each area, including vaccine introduction guidelines and guidance on post introduction safety and effectiveness/impact evaluations.  In areas with no internationally available vaccines details are provided on the global research portfolios and possible timelines (e.g. Hepatitis E, malaria and dengue).

In addition the page links to the website containing all WHO vaccine position papers, and the summary tables containing WHO recommended immunization schedules. is a definitive resource for globally relevant technical information on immunization and vaccines.

Please cascade this notification in your networks.

With kind regards,


Mrs Daniela Urfer Immunization, Vaccines & Biologicals (IVB) Department Family, Women's and Children's Health (FWC) Cluster World Health Organization
Room M121, Avenue Appia 20, CH-1211, Geneva 27
Tel: + 41 22  791 1595
Fax:+ 41 22  791 4860

Acellular DPT/ Painless DPT/ DTaP / Pentaxim shortage in India - How to complete vaccination schedule in your child?

With a lot of worried parents calling & writing to me regarding the shortage of Acellular DPT/ Painless DPT/ DTaP / Pentaxim , here is what I am recommending.....
For children completing the primary series (less than 6 months old), I am recommending using whatever vaccine is available - the DTwP brands like Pentavac, easyfive, qquinvaxem etc. to continue the vaccination, rather than wait and delay these vaccinations against serious illnesses.
For children coming at 1.5 years for booster doses, waiting for a few weeks is not that critical, PLUS the chances of local side-effects are also more. Hence I am giving the option to parents to decide if they want to wait, or take the DTwP combinations as mentioned above. 
Dr Gaurav Gupta

Friday, April 04, 2014

The Art of Parenting - You know the only people sure about the proper way to raise children? Those who've never had any!

I take no credit for the sentiment -- that would go to Dr. Bill Cosby, comedian and philosopher extraordinaire. I do know, however, that no truer words about parenting have ever been spoken.

There is no right way to raise your children. There is no hard and fast rule about what will work in your home, with your particular family, your child's unique personality, the circumstances you are in, the luck or challenges that come your way. All the money in the world can't fix a serious problem. No matter how little you have materially, you can raise an excellent human being if all else falls into place. Consistently teaching your values will usually result in your children having the same values... but not always. Because above and beyond everything else, our children come to us with inherent qualities that we cannot special order, request, or cross off a list as undesirable.

I never imagined a daughter who would forsake Barbie dolls and coloring books in favor of softball and singing -- though in retrospect, I'm so glad she did.

I never imagined a son who would be passionately invested in sports, playing them, studying them and watching them -- oh wait, I think I did.

You see? You never know. Not that these are monumental issues -- in fact, they aren't issues at all, just who my children are.

Remember when your children were little -- pre-school little -- and there was that one child in the classroom who would misbehave far more than the others? Remember how you were sort of smug, maybe a little judgey, thinking to yourself "my child would never do those things?"

Ok, maybe you didn't do that, but I did. A few times. Not a lot.

Well haha. You didn't know, did you. You had no idea what might happen, how your child might cause you grief, or disappoint you, or make you red-faced with anger. No, none of us knew, when our children were little, what the future would bring to us.

It can be tempting to look at others whose children give them sleepless nights and angst-filled days and think you'd know how to fix things. Don't. Because you don't know, can never know, what it's like to raise that particular person to adulthood. You can never comprehend the personality conflicts between a parent and child, a mother and son, a father and daughter.

I've never read a parenting how-to book. There are times when I need advice and guidance, but I can't imagine how a stranger could help me with my particular child. Instead I ask the people who know and love my children for their input, and my husband and I talk... and talk... and come up with our own solutions. That works for us. Usually. Sometimes there are problems that just need time, not intervention.

The one and only rule that I believe would apply to nearly any child is this:

Children learn what they live.

We can only do the best we can, with love and attention and words of wisdom shared and, hopefully, heard.

Ultimately, the one thing those who aren't parents can't understand about being a parent is this: the deep, heartbreaking and breathtaking love that changes you forever when your child is born. This is what makes parenting an art, not a science. This is what makes it a complicated, overwhelming, and fantastic experience. This love.

Blogger, Empty House, Full Mind. Co-founder,

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Comment: I have been invited to deliver a talk on the Art of Parenting in my daughter's school, and this wonderful post caught my eye. I believe that unconditional love ( & a little discipline from my wife :) goes a long way in helping my child become a healthy happy adult. In case you don't take my word for it, please get back after 15 years, to confirm if this worked ;)

Why I Got Electroconvulsive Therapy for My Autistic Son - How pop culture is holding back powerful medicine.

hen I tell people about the electroconvulsive therapy my autistic 15-year-old son Jonah has been getting for the past four years, the response has been ... surprise, certainly. Curiosity. Interest. No horror, no judgment. But that’s to be expected from those close to my family: They know we spent the better part of a decade struggling to manage Jonah’s aggressive and self-injurious behaviors. Countless therapies, behavior plans, medication trials, and even an almost yearlong hospitalization at one of the nation’s premier facilities failed to stop his frequent, intense, and unpredictable rages.
My friends, like most people, originally knew little about ECT beyond the brutal depiction in One Flew Over the Cuckoo’s Nest, but there was no arguing with the results they saw. The boy who broke a teacher’s nose when he was in kindergarten, who left us, his aides, and his teachers bruised, bitten, and scratched—that boy is now tubing with his brother and sisters, riding a tandem bike, and studying Hebrew. The boy who could only be taken out in the community by his father because he was the only one who could still physically manage Jonah’s rages, flew with just me and one of his sisters to Florida for a week at a dolphin therapy program. The transformation has been dramatic, conclusive, and celebrated by all who care about my family.
Now that my book Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children is being published, I’m expecting the reaction to be considerably less benign. In the years I’ve spent researching ECT—first when we decided to pursue it for Jonah and later as I wrote about our story and the experiences of other families—I’ve tried to figure out exactly why it’s so controversial. I’ve been unable to come up with a satisfying answer. The inaccurate but persistent portrayal of ECT in the media and pop culture as a sadistic, soul-crushing punishment obviously contributes.
Those preconceptions have been reinforced by accounts of some former patients who report losing years of memories following ECT. This is a terrifying prospect, which is doubtlessly why memory loss has been the focus of much research (PubMed lists more than 600 citations). It’s a muddy issue because psychiatric illness, the drugs prescribed to treat it, and ECT can all affect memory, but the findings from studies around the world have been remarkably consistent: If memory loss occurs, it is generally transient and confined to the time immediately surrounding the acute course of treatment. In other words, patients can expect cognitive side effects from ECT similar to those they might experience following other common medical interventions, such as chemotherapy, heart surgery, and anti-seizure regimens.
The response rate for ECT is unparalleled: Approximately 80 percent of patients withmajor depression, the most common illness for which ECT is indicated, are helped, compared with less than 30 percent whose symptoms remit after eight weeks ofantidepressants. Study the data, and it becomes clear why an estimated 100,000 Americans receive ECT every year to treat incapacitating conditions such as severemood disordersschizophreniacatatonianeuroleptic malignant syndrome, andParkinson’s disease.
What most concerned me and other parents I know who pursued this treatment for our children wasn’t the risk of getting ECT. The antipsychotics typically prescribed to kids like Jonah as a first-line treatment for dangerous behaviors come with truly scary and sometimes permanent side effects, including dystonia, tardive dyskinesia, and neuroleptic malignant syndrome. More than 200 kids have died from complications from taking antipsychotics, but not one child has died from ECT since its first use in the pediatric population in the 1940s. No, it was the risks of not getting ECT that kept us up at night: blindness and brain damage from self-inflicted blows to the head, significant injuries to family members and caregivers, physical and chemical restraint in residential placements.
“Without ECT, Brandon would be in an institution, or maybe not even alive,” said Kate, the mother of a 15-year-old son with nonverbal autism and a history of severely self-injurious behavior. I met Kate and Brandon after I had finished my book, so their story isn’t included in it—but I didn’t have room to include all the families with similar stories. Violent behaviors represent a huge problem in the autism community. A 2013 study in Research in Autism Spectrum Disorders found that more than half of autistic kids exhibit aggressive behavior.
When he was 11 years old, Brandon spent nine months at an inpatient unit that treats only children and adolescents with developmental disability and dangerous behaviors. Nothing else had stopped his constant self-injurious behavior, or SIB, which occurred at a rate of 100 blows to the head, bites to the arm, and violent pinches to the leg every hour. Not the special diets and supplements parents typically try first because they seem safe and easy, not the psychotropics that 64 percent of autistic children take, not countless medication trials. The only way Brandon’s doctors found to control the ceaseless SIB was to fit him with arm splints that physically prevented him from bending his arms and hitting himself in the head.
Nine months of intense treatment that targeted the SIB from both pharmacological and behavioral angles failed to reduce it enough to safely remove the splints. When he was discharged, Brandon still had them. Kate was devastated. “When he came home like that, I thought he would be in arm splints for the rest of his life,” she told me.
A few weeks later Kate heard about ECT from a client in an exercise class she was teaching who knew about Brandon’s situation. Three months after he started ECT, Brandon’s arm splints came off. Now, three years later, they are still off. Brandon’s rate of SIB dropped by 90 percent, and the residual behaviors are much less intense. There is no head banging, no more pinching. “We patched all the holes in the walls, and he hasn’t made another one since,” Kate said.
The decrease in SIB was accompanied by an increase in academic performance—which reflects the consistent finding in the literature that patients with severe psychiatric illness have improved cognitive functions following ECT. Brandon is learning to read and do basic math. And even more importantly, his communication has improved. “Before ECT, he had 50 signs,” Kate said. “Now, his signs have quadrupled and he strings them together.” She dismissed a common misperception about ECT: “Brandon isn’t a zombie, exactly the opposite. He’s more alert and happy. He’s finally come back to life.”
The optimist in me hopes that those who lobby to ban ECT just don’t know there are kids out there like Brandon, Jonah, the profoundly ill adolescents in my book, and so many others whose quality of life depends on regular access to ECT. They don’t realize that autistic individuals frequently suffer co-morbid conditions that can cause intense rages over which they have no control, such as bipolar disorder (with which Jonah was diagnosed when he was 9) and catatonia.
Critics of ECT may have never met anyone like Julia, an autistic woman who blinded herself when she was 7 years old from ceaseless punches to the head. This was an especially devastating injury because Julia is nonverbal, so with her loss of sight she lost all functional communication.
Now 27, Julia has been getting ECT for almost two years, and the SIB her parents desperately tried to stop for a quarter of a century is largely gone. Instead of being confined to her home because she couldn’t be safely managed in the community, she is able to enjoy her favorite activities, like nature walks, outdoor concerts, and swimming.
Julia’s parents don’t spend too much time wondering how their daughter’s life might have turned out differently if they had found ECT earlier—20 years ago, the dramatic effects ECT can have in kids like Julia had yet to be featured in the psychiatric literature. Now ECT is getting serious attention as a treatment for children with developmental delay and dangerous behaviors. There are numerous published casereports from hospitals around the world, and Neera Ghaziuddin and Garry Walter’s 2013 academic text Electroconvulsive Therapy in Children and Adolescents includes chapters on the treatment of autistic catatonia and self-injury with ECT. In January, Ricki Robinson, a developmental pediatrician and professor of pediatrics at the University of Southern California, recommended ECT as a treatment for severe cases of autistic catatonia in a guest post on the Autism Speaks blog, which is about as mainstream as it gets in the autism community. Last month, a Virginia television station featured an autistic 25-year-old man who is receiving ECT for extreme SIB.
As awareness increases, however, the ethical debate over the use of ECT in this population is likely to intensify—even if for us, the parents of children whose lives have been transformed, there is nothing to debate. Ethics don’t exist in a vacuum; any discussion of the ethics of giving ECT must be compared to the ethics of withholding an evidence-based treatment from those who are likely to benefit from it, forcing families to live with the constant threat of significant injury to their children or to others, and condemning kids with an already limited future to life on a locked ward. Without a doubt, it would be better if yoga and fish oil could control the underlying neurological impairments that drive these aggressive and self-injurious behaviors, but they can’t. And these profoundly challenged, complex kids deserve every weapon in the medical arsenal that can help them.