Ruokavalio / Diet
Pyörii ympyrää ja lukee ja tutkii ja aina palaa samaan asiaan: Ruokavalio.
Round and round in circles, reading and researching, always come back to one thing: the diet.
Two articles well worth reading below:
This is from a post on facebook, I have the permission to quote one mother´s comments here, she wants to help and give an option to the hard drugs. I think she is brilliant and spot on!
Her original Nephrologist said that there was a doctor at C.H.O.P. with a crazy idea that food allergies was the cause but that wasn't feasible. Well, when they started talking about chemo drugs and kidney biopsies we ran not walked to the crazy doctor with the food allergy idea. He put her on a hypoallergenic diet and to make a long story short, after the process of elimination we discovered that she was relapsing after eating certain foods and also when she came in contact with cats. She is now 25 years old and has only had one relapse about 10 years ago which cleared up with a round of prednizone.
Foods today are genetically modified, chemically preserved and full of mold. All these are factors in the poor health of our kids. In our daughters case we found that she would relapse after eating corn, soy, eggs, milk and when she was around cats. If I were you guys I would remove these few things first and see what happens. Buy Organic, GMO Free, free range, grass fed, antibiotic and hormone free and finally BPA is in plastic bottles and can linings. This is an artificial estrogen that will harm you and especially your kids.
It won't be easy, especially if your kids are older, but worth it because the biopsies, chemo drugs and steroids are far worse than having to say no to corn and drinks sweetened with high fructose corn syrup.
I'll say also that our daughter has outgrown all her allergies, she eats anything she wants and recently has even acquired a cat. They say if your child is diagnosed young they will outgrow the NS when they reach puberty. If they are diagnosed after puberty they will probably have it for life, but I say until the foods are removed from their diet. Our daughter was a chronic relapser because she was still eating the food that was allergic to. When the steroid was reduced or removed she would just start spilling again. It was a vicious cycle for a while.
First, I would like to change the word allergy to intolerance. We were not able to do the akin allergy test because by the time we got to the allergist the rash was gone and she was already in a relapse. The nephrologist did say that scratch tests are inconclusive for NS because they can't scratch the kidney. I would say that if the blood test shows a bunch of allergies you son is probably allergic. I would most definitely try a hypo allergenic diet.
You certainly may quote me. Everything I share here is from personal experience. I know the heartache and simply want to give you all an option to strong medicine. Sometime I think the doctors just like the promise of your return visits so they can continue to treat the symptoms rather than treating the root cause. My daughter almost died from a 6 week solu-medrol treatment NOT the nephrotic syndrome.
The diet we used was very strict in the beginning. She only ate lamb and potato and rice based items. No Dairy, No Eggs, No Cheese, No Soy or Legumes, No Citrus, Tomatoes or Strawberries, No Corn whatsoever including High Fructose Corn Syrup. We used olive oil instead of butter. Rice Dream for milk and Rice bread. She could have those maple sugar candies and the honey and sesame candies for a treat. Sometime she had lamb, potatoes and string beans for breakfast.
This is the beginning of the diet we used, my earlier suggestion was what we found was causing our daughter to spill protein. Corn is genetically modified however you look at it. We never eat corn or high fructose corn syrup even now or soy, both are highly intolerable. No Legumes ie peanuts, soy beans, lima beans, peas.Because doctors are taught in medical school how to treat the symptom NOT the root cause. You need to do homework then when your child is protein free go back to the doctor and tell him what worked. Look for information on the "Rotation Diet". This is pretty similar to the hypo allergenic diet that we used. It eliminates high allergy causing foods and then re introduces one at a time while you observe reactions. Like I said earlier, for our daughter, corn eggs legumes dairy and cats were the biggest culprits.
Relating to allergy tests, I remember the nephrologist telling us that 'scratch' allergy tests on the skin are only conclusive on allergies that effect the skin and it was impossible to do a scratch test on the kidneys.
The long term effects of steroids and chemo drugs are devastating. I would think a change in diet would be the healthier choice. You can always reintroduce the foods he likes after discovering the ones that he can't tollerate. Eggs, Corn, Legumes, Dairy were our daughters bad foods. We removed them and she remained in remission. It was a no brainer for us. She just wasn't going to eat those foods.
I question the doctor that says NS has nothing to do with the food the child eats but then says they don't know what causes NS. Best case scenario will be put the child on the hypoallergenic diet and when you wean your child off steroids they remain in a remission. Doctors ONLY know how to throw drugs at the symptoms. YOU the parent can control what your child eats. It comes down to time and motivation. I was motivated by my little girls swollen eyes and belly and I didn't quite trust the doctors to have my childs best interest at heart when they didn't want to listen to me when I mentioned food allergies. My daughter was MY child and I was going to do what I thought was going to make her well so I changed her diet and her NS resolved.
I sometimes think doctors are intimidated and afraid the mom is going to learn more that he knows and he'll lose a patient.