maggie sugar need help

my friend (mellisa) just had her baby 10 days ago and found out today that he is allergic to the protein in her breastmilk.... im not sure as to what the symptoms were that led the doctor to saying this but i was wondering if you knew if mellisa would change her diet or what could help????? she is completely broken up about this and her son wont even take a bottle from her the father has to feed him and he's not going to be home all the time so any help would be nice

 

tell her not to listen to the doctor who has had absolutely no education on human lactation, and get to a lactation consultant ASAP! In the meantime, if she's online, point her in the direction of www.kellymom.com

 

Is there a chapter of La Leche League in her area? They should be able to help.

Best of luck to Maggie and her wee hatchling.

 

yeah i told her to call our local la leche league and to ask them for their help since this doctor seems to have no education on breastfeeding and what not.

 

ITs a disorder called Fragile X and she needs to listen to that DR. it causes mental retardation if the child is allowed to consume protein

 

It's also very very very very rare, to the point that most doctors would not ever see a case of it.

Most doctors are notoriously uneducated about human lactation. She should see an IBCLC as soon as possible, get with her local LLL, and ditch the idiot doctor. If he doesn't know about human lactation, what else does he not know about.

 

http://www.fragilex.org/html/home.shtml

 

Every baby that is born is tested for it... and I would rather be on the safe side while other tests are done instead of causeing mentalretardation....


It is also not as rare as you think.

 

Fragile X has nothing to do with lactation it as a genetic disorder

 

I don't know exactly what the doctor told her, or what symptoms or tests led him to his diagnosis, bu what it sounds like to me is that baby is allergic to the dairy protein that is coming through her milk from the cow milk mama consumes. I've heard dozens of moms tell me their doctors told them not to nurse when it was a dairy protein allergy, when all they really needed to do was an elimination diet. Either way, a second opinion from someone who knows about these things is definitely in order. LLL is not who I would call, unless it is just a milk allergy. She needs to see an IBCLC board certified lactation consultant, bringing copies of the baby's medical records would help greatly.


edit to add link
http://www.kellymom.com/babyconcerns/food-sensitivity.html

 

Let me guess...the Dr is male & never breastfed a baby

what did mother's do before bottles were ever invented?

 

SKITTLECHICK................

thank oyu for the information i will make sure to pass it on to mellisa.......... i dont want her to make her kid mentaly challenged by nursing him....... do you think the la leche league would know about this disorder???????? she is still going to get a second opinion but until she knows for sure she is not going to nurse him............ again thank you for this valuable info

 

No problem, I have seen what can happen to kids whit fargile X if it goes intreated. If that is what is wrong her baby will have a very different meal plan for the rest of its life. I hope for her sake and the babies that is not what is wrong.

 

Fragile X is a genetic disorder, it has nothing to do with breastfeeding. It is more similar to Down's Syndrome or even intersexualism than "allergy" prone conditions.

She needs to talk to a BOARD CERTIFIED Lactation Consultant about this. Babies cannot be "allergic" to human protiens, or they would be allergic to themselves and not live through the first trimester of pregnancy.

None of my kids were, I know that. A genotype is very expensive and they are only done if a genetic disorder is suspected. "Be on the safe side" randomly feeding a child formula, when there is NO PROOF that they have any reason to NEED to do so is FAR from being "safe." "Being on the safe side" is breastfeeding until one has absolute proof that human milk is a danger. And that is basically unheardof, with the exception of galactocemia.

I don't think something like Fragile X could be diagnosed over the internet, especially since you need a genotype test to determine if the child has it. PLEASE, she needs to see a competent doctor, not some quack who assumes the "proteins" in human milk will harm a baby. Babies need SOME protein to grow, human milk has the lowest amount of protein of any milk of any animal (as humans grow so slowly and are supposed to nurse for many years to get enough milk for optimal development.)

Don't just assume your freind's child has this illness, he needs to see a doctor who specializes in Genetic Disorders at a large Teaching University Hospital. Please. Some idiot at a community hospital who is playing "Dr House" isn't a good doctor. She needs GOOD medical care. WHERE did you get information taht this child has this condition? When was the genotype done? WHAT will they feed the baby? As most formulea have more protien than human milk?

If it is NOT "Fragile X" or even if it is, human milk is STILL the best choice. She needs to change doctors and talk to some professionals in genetics and diagnostics and lactation.

A LOT more needs to be done before she takes away the best thing she can be doing for her baby.

 

Fragile X can be tested with a blood test because it is an allergy to amino acids in protein. If a baby with Fragile X is breast fed it will cause mental retardation. ANy kind of milk breast milk cows milk, soy milk and formula will cause mental retardation of a short period of time. There is a special "gruel" that people and babies with fragile X have to eat. It has protein in it but does not contain the 3 amino acids that Fragile X people react to. It is not compared to downs syndrome. In the case of Fragile X I would rather be safe and go by what the Dr. says.... and I did not try and diagnose over the internet she asked for information and being told that a baby is allergic to protein is what Fragile X is sometime liked to. Because Fragile X is an in ability to breakdown the 3 major amino acids any kind of food including potato's contain the 3 amino acids the diet of people with fragile X is very strict and really really bad tasting.


I'm sorry Maggie but with Fragile X breast milk is not the best thing for a baby. It can be really bad for the baby.

 

According to what I am reading from the OP the doctor hassn't diagnosed anything near fragile X, that seems to be the diagnosis you are making.

And if every baby that is born is tested for it, like claimed, then the diagnosis would have been made and wouldn't need to be made over a message board. There would be no need to insinuate that it is fragile X if baby's already had the test.

Also, the link you gave about fragile X doesn't say anything about an allergy to a protein in milk, but rather that a person with fragile x doesn't make a certian protein (FMRP) and that the absence of this protein causes the characteristics of fragile x syndrome (like the mental retardation). Breastfeeding or protein in breastmilk has nothing to do with it, and this info I've sourced from the website you provided. http://www.fragilex.org/html/cause.htm


In fact, after over 30 minutes googling on the topic I could find no information linking fragile X and breastfeeding in any way, or fragile X and milk protein allergy. Also, I could find nothing about how breastfeeding a child with fragile X causes further mental retardation.


Basically, no where can I find any information to confirm any of this:

Like I said before, mental retardation due to fragile X seems to be caused by an inherited lack of a protein that the body develops, not anything to do with consuming protein.


There is no reason not to get a second opinion from a specialist before deciding to cease breastfeeding. I would certainly not let her freak out over a fragile x diagnosis from someone on a message board. That one seems to be coming way out of left-field.

Not that I am trying to harp on anyone, just I would hate for a mother to stop breastfeeding due to some misinterpreted scary information. Especially since according to the OP this mother is broken up about the thought of not being able to breastfeed.

 

She said the DR. called it an alergy to protein. The mental retardation is not caused by the lack of protein it is caused from the bodies in ability to breakdown the amino acids causing them to become poisions in the body. I am not going to argue about what fragile X is or isn't. I am not going to argue over breasting feeding or not becasue that is pointless. Because I think that breast feeding is the best thing for most babies. Also I did not diagnose. So think what you will..... and take the imformation I gave because regardless of the facts you will believe what you want any way.

 

Alexis wasn't tested for Fragile X.
My pediatrician knew Alexis was allergic to the dairy I had in my system by the symptoms I described. He told me to switch to soy products. Tell Melissa to try that out, fairy. It may help. I couldn't stand the taste of soy milk/products and switched Alexis to the bottle. I really wish I would've tried a bit harder to change my diet now.

 

My daughter wasn't tested for Fragile X.

Most doctors will say "milk protein allergy" and say "baby's allergic to your breastmilk" because most doctors are ignorant of breastfeeding. I wouldn't get all up in arms about a rare genetic condition.

 

OKAY NONE of the mamas who actually HAVE children have had kids tested for this rare illness, there is NO evidence (besides some moron at a community hospital who had NOT done a genotype, but assumes the baby is "allergic" to human milk, which is an impossiblity) that the baby has it. There is NO REASON for this womyn not to give her baby what the human child needs most, if possible. Jeez.

Fallen, PLEASE, if your freind has ANY doubts, CONTIUNE breastfeeding and see a genetic specialist. ONLY a doctor, who will do the correct tests (test which are NOT part of the regular newborn screening) can diagnose it. And even if he does, there are NO definitive links to breastfeeding and brain damage in this illness. Like I said before:

"Protein Allergy" does NOT natually translate into "Fragile X." I have seen THOUSANDS of babies over the years who have cow milk, goat milk, soy, wheat and other protein allergies, NONE Of them have had Fragile X. Thinking that is like seeing a large hoof print and thinking it is a dinosaur, instead of a horse. There is simply NO reason for this womyn to wean her baby, as the proper tests were NOT part of the normal newborn screening, there was NO genotype done, and the doctor was NOT educated in lactation. Only 10 Medical Schools in the US have lactation classes, and in none of these is it required. Most doctors know LITTLE about breastfeeding, but many LOVE to blame any problem, from a hangnail to crib death on it.