Doctors don't know why my baby daughter isn't getting any bigger

[Cash_thatswhatiwant]

Meet Suraya Brown – the little girl who is baffling doctors by refusing to grow.

The brown-eyed youngster is now 14-months-old and should weigh at least 20lb. Yet she is still the size of a newborn baby, tipping the scales at just over 7lb and a mere 19in.

Suraya has been examined by a whole team of specialists including paediatricians, nutritionists, geneticists and hormone experts.

But doctors say they still have no idea why she won’t grow – describing her condition as a “real conundrum”.



Mum Atlanta Ruzman, 24, said yesterday that her daughter was like a real-life baby doll.

She said: “The doctors haven’t got a clue what is wrong with her.

“They’ve consulted international experts about her case but her condition seems to be a complete mystery.

“She cannot sit, talk or crawl and she has to be fed through a tube to keep her alive. But she just hasn’t been putting on any weight.

“She is way behind other youngsters of her age and when they mark her growth chart they have to plot her off the graph. She is a just like a real-life doll. In fact my other daughter has a doll that is bigger than her.”



Suraya was born four weeks early weighing 2.6lb. But specialists say nine out of 10 babies born at this stage will immediately start growing and put on weight.

In Suraya’s case she stayed at her birth weight for the first eight months and has only put on a small amount over the past six.

Experts at various hospitals in London have carried out all kinds of tests on Suraya to find out what could be wrong with her. These have included checks to see whether she is suffering from some form of dwarfism.

more

http://www.mirror.co.uk/news/top-stories/2009/02/01/doctors-don-t-know-why-my-baby-daughter-isn-t-getting-any-bigger-115875-21090438/

[Ian David]

1. You should read this article, and then contact the group this guy started...

DIY DNA: One Father's Attempt to Hack His Daughter's Genetic Code


Beatrice Rienhoff is sick. A flaw hidden deep within her genes has baffled the best doctors in the world. So her father is combing through her DNA, one nucleotide at a time.
Photo: Ye Rin Mok

"Do you want to see my flashlight?" Five-year-old Beatrice Rienhoff bounds into the foyer of her family's home, sporting a blond Prince Valiant haircut and a bashful smile. She plops down on the floor and starts unscrewing the top of her toy flashlight, eager to show off its innards. Her hazel eyes brim with curiosity. Beatrice looks like any other healthy preschooler until she leaps into her father's arms for a hug. As she does, her shorts push up a bit, exposing her legs. They are, as her dad calls them, "little bird legs," entirely lacking in visible muscle. There is no curve of calf or quadricep, just twiggy bones pressed against flesh. It's surprising that Beatrice can get around so fluidly on such gaunt limbs.

<snip>

One of Rienhoff's heroes is Borgny Egeland, a Norwegian mother of two mentally retarded children. In 1934, she contacted an Oslo doctor, Asbjörn Fölling, and informed him that her children's urine was emitting a powerfully musty odor. At Fölling's request, she collected urine samples from the children every other day for two months straight—more than 5 gallons in all. Fölling found that these samples contained high levels of phenylpyruvic acid, a substance that was subsequently found in the urine of many other patients suffering from retardation. It turned out that a genetic disorder was preventing these children from properly metabolizing phenylpyruvic acid, and the buildup causes brain damage. The discovery led to the most effective treatment for the disease (now called phenylketonuria)—a diet low in phenylalanine, which the body converts to phenylpyruvic acid. To Rienhoff, the story of PKU's discovery is a perfect example of how a concerned parent can press doctors to solve seemingly intractable problems. Countless afflicted children now live normal lives thanks to Egeland and Fölling's teamwork.

To encourage this kind of collaboration, Rienhoff created http://www.MyDaughtersDNA.org. The Web site, launched in October 2007, invites parents to post the clinical histories of their undiagnosed children. The hope is that geneticists will also frequent the site, to help identify rare disorders and use the case studies to further their own research.

One of the first people to post to the site was a Bulgarian man named Stefan Petkov, who wrote about his 12-year-old daughter. The girl had weak limbs and speech problems; she also lacked the ability to shed tears. Doctors in Bulgaria were stumped, and DNA tests done in both Belgian and Bulgarian laboratories didn't point to any known genetic conditions.

More:
http://www.wired.com/medtech/genetics/magazine/17-02/ff_diygenetics?currentPage=all

[jwirr]

2. She obviously grew inside the womb. I also wonder about the feeding

tube - inside the vein? Pumping food directly into the blood? My daughter has a feeding tube inserted into her stomach cavity and the food goes into her digestive system not her blood.

[MADem]

3. How very unusual.

This is odd, too: Doctors will investigate a theory that her body has become resistant to its own growth hormones.

[jwirr]

4. When the tube is used on a temporary basis they do it through the

nose but when it is probably going to be long term it is inserted through the wall of the abdomen and a catheter used to put the liquid food in. Less painful and easier for home care givers to do.

[MADem]

6. I saw that the article said that....I had never heard of it.

I think they've ruled out the mother being mean to the kid. It just seems so odd. Maybe the poor little kid will be like Tom Thumb of circus fame....

[sandnsea]

5. Only to 2.5 pounds

She was only 4 weeks early, she should have weighed a lot more than that. Sounds like a problem from the getgo. Sorry about your daughter too.

[jwirr]

9. My daughter is happy and healthy in many ways. She is old enough

that she has been a part of the learning process for the medical world. We tried a drug to relax her leg muscles and it did not work BUT it was one of those serendipity things - it did work to relax her stomach muscles and now doctors everywhere are using it. All of us have our callings. She just is leading the way for people like her. Thank you for caring.

As to hearing about it, that does not surprise me. Do you remember the case in Wisconsin where the girl died at the age of 15 weighing 15 pounds? They arrested the mother who was also developmentally disabled. Many of us who's children were in the same boat until a wonderful doctor told us about the tubes called down to that county and told them to arrest their social worker (I am one) and the doctor who did not insert the tube. Up until recently these children have just slowly and painfully starved to death. They could not keep food down. My daughter was 50 pounds at the age of 35 when we finally found this new device. She has gained weight and even gotten taller. When they test her vitals the GP always laughs and says I wish I could put my other patients on tubes.

[kestrel91316]

8. That is a legitimate way of providing nutrition. It's called, in medical terms,

total parenteral nutrition, or TPN. It'll get around any gastrointestinal absorption issues. I wouldn't second-guess the doctors on that. She wouldn't be getting it if she didn't seriously need it.

[jwirr]

10. I was not objecting to the doctors method - merely saying that there

are other ways and doubting that they ever put it directly into the blood. Do they?

[Ilsa]

12. It's a special IV solution, and yes, it is given to patients with various

illnesses. It isn't the same as nutrition through a feeding tube. The supplement given through a feeding tube cannot be given through an IV (not meaning to insult intelligence, but some poorly trained healthcare workers have killed patients that way).

Yesterday, a MSNBC reporter erroneously said that doctors were giving one of the octuplets donated breast milk through an IV. Totally wrong. It would have been given through a feeding tube.

[kestrel91316]

13. TPN is directly into the blood. Specially formulated products are needed

to do that.

Parenteral = by needle injection

[jwirr]

16. Thank both of you - I learn something new on DU everyday.

[SoCalDem]

7. She's not "refusing" to grow.. she has proportional dwarfism

There was just recently, a documentary about some of these people, all grown up.. One was a woman 26, I think, who was all of 35 inches tall, but perfectly proportioned..

[underseasurveyor]

11. That's known as primordial dwarfism

[McCamy Taylor]

14. Article says they did genetic testing and ruled out dwarfism, presumably primordial dwarfism too.

You have to assume that they have tested her own growth hormone level and found it normal. When they say they fed her through her "veins" I am guessing that they tried total parenteral nurtrition---bypassing her intestinal tract to see if her problem was an inability to absorb nutrients---and they found that this did not help. That is why they are now assuming that she has an antibody to growth hormone.

They need to take her serum and create a test in which they use growth hormone from another person and see if her serum inactivates that growth hormone. And then use her tissue and see if anything in her tissue inactivates human growth hormone. If it does, then maybe if they give her immune suppressive agents, she might grow. She could have something similar to a lupus antibody---that is when a person develops an antibody to their own blood's clotting factor that keeps their blood or someone else's blood from clotting normally. Or. maybe they could do electrophoresis on her blood and remove the offending protein if there was one so that her body could use her own growth hormone.

[underseasurveyor]

18. Yea. I was just letting SoCal know what the name is

of the type of dwarfism she had mentioned.

But thanks for the added info/edu :hi:

[McCamy Taylor]

19. Oops. I meant plasmaphoresis to filter her blood. I need a nap.

:crazy:

[McCamy Taylor]

15. Monsanto makes BOVINE GROWTH HORMONE among other crap.

Here is what I wonder. If the baby is presumed to be allergic to its own natural growth hormone, this is not normal. Someone needs to do a study and see if there are other kids who may be developing weird allergies or reactions to their own body hormones and see if these may be cross reactions triggered by the presence of these synthetic hormones being fed to dairy cows thanks to the modern day Borgias at Monsanto who poison more food than all the Renaissance villains put together.

Here is a link.

http://www.ejnet.org/bgh/nogood.html

Just a thought. Buy organic milk.

[HiFructosePronSyrup]

17. Oh sweet jesus.

[McCamy Taylor]

20. I know. The stuff they stick in our food, it's a wonder we all don't just explode.

[McCamy Taylor]

21. Here are some randomn links about hormones and their effects on humans. Not necessarily related to

this child (I am not convinced that they have ruled out the usual causes of dwarfism or things like maternal antibodies to components of the child's blood or tissue which might linger for 8 months or longer---for instance what if her first pregnancy sensitized her and the second pregnancy experienced the impact), more to get people thinking about what it means to adulterate our food.

Here is some more food for thought. In the old days, before they had such a thing as human insulin for diabetics, women had to use pork or beef insulin, even when pregnant. Since this stuff was not natural, they developed antibodies to it, and sometimes the combination of animal insulin/antibodies to animal insulin would cross over to the fetus, which would be born with evidence of fetal diabetes (high sugars) such as macrosomia (big body) even if the mother had perfect blood sugar control. This was presumed to be due to the presence of the maternal animal insulin/antibodies to animal insulin. I.e. those antibodies could cross react to the infant’s insulin and give the baby a temporary case of diabetes. Link here to abstract from NEJM

http://content.nejm.org/cgi/content/abstract/323/5/309

While this study did not detect a difference in maternal antibodies to the group using animal insulin and human insulin, it found a significant difference in the size (too large) of babies born to mothers receiving the animal insulin. My question is this---could these mothers have had antibodies to C-Peptide? Anyone know? C-Peptide is another way to measure pancreatic islet cell function. It is a byproduct of insulin synthesis. If you are not making insulin, you do not make C-Peptide.

http://www.ncbi.nlm.nih.gov/pubmed/1442986

Here is another link about infants born to women who used animal insulin. Note that long ago, women used almost natural (and therefore highly allergenic) animal insulin. Then they began purifying it. Then they switched to human from cloning. Note that after 8 months the babies stopped showing signs of antibody type reactions.

http://www.springerlink.com/content/kltp256wk1512337/

So, could the baby they think is showing antibody type reactions to human growth hormone be responding to something she was exposed to in utero or from breast milk and did she begin to gain weight slowly after eight months because those antibodies finally began to clear?

DES was used as a “growth hormone” in the beef and poultry industry way back when. And we all know what DES can do.

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

And here is what really worries me. They compared people who used pure manufactured human growth hormone with extracted growth hormone and found that the less pure product was capable of generating an immune response.

http://www.ncbi.nlm.nih.gov/pubmed/8351954?dopt=Abstract

While all animals have somewhat different types of growth hormones, there are similarities in certain parts of the molecules, and I believe that in the digestive system it is broken down to these constituent parts, any one of which the body could react to and form antibodies to. I have read about “enhanced” Bovine Growth Hormone. Is this being given to cows? I have read about antibodies to growth hormone being used to increase the production of growth hormone in animals (presumably because their bodies try to make more to meet their own needs). Do some of the antibodies get harvested if the collection process is poor? Are these antibodies coded for on plasmid vectors that could get loose and splice themselves onto some other virus?

This is all one great big Eeks as far as I am concerned. People were not supposed to be drinking milk anyway. And then we give them hormones, and then we modify the hormones in a lab to increase the profit margin.

How many steps are there where something can go wrong?