Help What Is NF-KB E M Nemo

First please know you and your son are in my prayers. Second, I don't have any advice to offer on you son's illness but I do have some advice on the dry skin/bathing issue...please don't give him a bath everyday. It is just too dry here and daily bathing is really drying your son's skin out. Try to give him a bath every other day or even every 3 days. Use Aveeno oatmeal bath in the water and when he gets out slather him with a really thick body lotion like Lucerin. My kids had trouble with extremely dry skin when we moved here and that is what we did under doctor's advice and it worked. At least you could ease his suffering from the painful skin while you figured out what else is going on with him.

Renee,

I don't have any advice or any clue what this illness is. I just wanted to send you and your son TONS of energy for strength and peace as you move through this ordeal, which I'm sure is scary to you both. Just stay determined and do whatever you need to advocate for you son. Don't be afraid to try alternative healings along the way. A good Naturopathic Dr., allergist, acupuncturist, medical intuitive, could help you find some answers...use the best of both western and eastern/alternative medicine to help your son heal and getter stonger. Make sure you communicate clearly with all Dr's who he is seeing and what medicine he is taking.
Do your homework on everything. Stay strong, stay determined, embrace your journey with your son, Pray and have faith, and remember to take good care of yourself as well.

I'm sure your son is in many peoples prayers to get stonger and healthier every day.

In light and peace,
A.
mom of 4, Birth and Parenting mentor
www.birthingfromwithin.com

Hi,

I don't know if this is the same thing as your son, but you may want to look at this Web site: http://www.andy.org.mx/

There are other kids with NEMO, click on their names to read about them and the illness, and there seems to be a link to a NEMO support group. You have to become a member somehow.

They talk about a bone marrow transplant and maybe one of his older siblings will be match if that's what he needs. Like I said, I'm no expert, I just read a little bit right now just from Googling.

I hope this helps.

Here is a good description of what your son might have found through some research: (Here is a great website for you: http://helpgiovanniguglielmo.org/aboutus.aspx)

NEMO is the name of a gene that regulates functions of the immune system.
NEMO is like a "master switch" that is found on the cell of the human body and regulates signals between the cell membrane and the cell nucleus. NEMO is expressed in almost all tissue cells. If NEMO is not present life is not possible. NEMO stands for Nuclear Factor Kappa B Essential Modulator.
Nuclear Factor Kappa B or NFKB is the name of the protein that is used for communication between the membrane and the nucleus. NEMO is known to be the pathway of skin, skeleton, blood vessel and other vital signals. For example, the EDA gene is known to dictate properties of the "ectoderm" or last layer of the skin. The EDA gene uses the NEMO pathway to the nucleus to make the "ectoderm" properties present.

What is ECTODERMAL DYSPLASIA? (This is probably what is causing the skin irritation)

The ectoderm is the outer layer of the skin, sweat glands, hair, teeth and nails. Ectodermal dysplasia (ED) is a heritable disorder that affects the ectoderm, the outer layer of tissue in a developing baby. The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. During embryonic development, these and/or other parts of the baby’s body, including the lens of the eye, parts of the inner ear, the fingers and toes, or nerves, among others, may fail to develop normally.

It looks like Boston Childrens Hospital has the leading experts on this disease that was only discovered in 2007. It sounds serious, but it also looks like you have options of bone marrow, cord blood, and different medicines.

Goodluck. You are in my prayers. Please let me know if I can help in anyway.

How terrifying this must be for you and your family. There is a part of that thinks go across the country and have him tested for everything under the sun. I had a little boy in my preschool class a while back that had similar issues and they finally discovered that the culprit was SEVERE allergies - food and environmental. The eczema this poor kid had was outrageous. We were putting tons of aquafor on this kid throughout the day to keep his skin hydrated. It helped him so it was worth it.

My 2 year old son has had some significant health problems and the thing that made a difference for him was homeopathic treatment. Antibiotics had destroyed his digestive system (at least 8-9 rounds in l8 months). We have been rebuilding his digestive system using homeopathic supplements and we changed his diet. He's doing much better under the homeopathic care. He wasn't walking or sleeping well when we first saw the homeopathic doctor in May. Now he walks, sleeps pretty well, and is generally a happier person.

I don't know anything about the conditions you mentioned or if they can be treated homeopathically. My advice is to find out what the condition he has is and what you can do about it AND seek out some homeopathic help to assist his system in dealing with all of those antibiotics. While the antibiotics are getting rid of serious illness, they are not building his immune system and can actually be weakening his immune system. A good homeopathic doctor can help with that part at least.

Good luck and God Bless. You and your family are in my prayers.

Hi Renee -

You might try some natural herbs, externally - like Chamomile, Calendula and Red Clover - to relieve the itching and scabbing (if these aren't on the list of things he is allergic to). You can buy the herbs dry and use them in his bath water, in a muslim bag. You might also try some Flower Essences to help balance his body on an emotional level. Sometimes, using the FE will help relieve the exema. I hesitate to make any suggestions without knowing exactly what he is allergic to and what medications he is currently taking.

Blessings,

M. M. Ernsberger, HHP
Certified Herbalist

Dear Renee; I am friends with a couple in Texas who have two little girls with immune disorders and other complications. One has Down Syndrome and the other was premature and weighed a lille more than two pounds at birth. They spent a whole lot of time at the Texas Children's Hospital in Houston and still have checkups there. They seem to know what to do there for immune disorders. If you want further details, please send me an e-mail.

Renee,

I didn't have a son with allergies as bad as your child, but please please check out www.naet.com! You can naturally and non-invasively ELIMINATE his allergies and his health would probably come back pretty quickly!!!

Good luck,
L.

First of all, you and your family are in my thoughts and prayers. As far as this illness, I searched on "Google" and "Webmd.com" to get some information. From what I could understand throught the medical jargon, this is very serious and on a cellular level. One of the advice responses used the same "plain English" definitions I was going to use, so I won't waste your time. I'm sorry that my best advice follows, but I know if it were my child, I would puruse it the following way:

Make the doctor(s) write down what they suspect it is, explain it in plain English until you understand, and make suggestions on the best course(s) of action, specialists, etc. Demand that your doctor(s) give you a place to begin your research. If they need time to get a place, give them some time, but stay on them for the information. In the meantime, begin searching the internet for any and all information you can find that MAY be relevant to your child's condition. You will begin to understand medical jargon in time, but until such time, print out two copies of the article(s) and information. Take your information to the doctor(s) and give them a copy. If they don't have time to read it and explain it in plain English right then, ask them when they can give you the explanation as you will be continuing to search and need to know which direction(s) to continue in. If the doctor(s) are not appreciative of your efforts, research a new doctor or team of doctors. Let these medical professionals know that you will be part of the team helping your child, so they had best be prepared to help you in your quest. Most importantly, you are your child's best hope. There are health care professional out there who will work together with parents for the best interest of the child. Unfortunately, it can take something close to a miracle to find them, and in a case like this, it is vital.

Most of all, remember to seek support for yourself. We all tend to give everything we've got to our kids and forget to take care of ourselves, mentally, emotionally, AND physically. If you have nothing left to give, who's going to be there for your child? The best advice I ever received was: "In the event of an emergency, put your oxygen mask on before helping your child." When asked why, the flight attendant responded, "If you pass out due to lack of oxygen, you can't very well put your child's mask on at all. Can you?" It's hard BUT required.

Good luck to you and yours. If you need someone to just listen, you know where to find me. I am more than happy to help in anyway I can.

Hugs!
T.

Hi Renee!
This may be a dumb suggestion but here goes....Have you ever seen the tv show The Doctors? They always have people on the show who have written in asking for help with medical problems they have been unable to find answers for elsewhere. Maybe you could send them an email?? You can go to the website thedoctorstv.com
Good luck & God Bless. I hope you find some help for you son.

Hi Renee, it sounds like your son has an immunlological problem, and although I know little about them, I would suggest writing or calling the hospital back east and ask if they have a parents support group. The parents that are actively going through this may be able to comfort you much more than what you are getting now. Prayers going your way and your sons way.
J.

First of all I wanted to say Bless you and your son. I also wanted to suggest you try posting on a webmd forum since this seems to be a very particular medical syndrome and you may find more people that can respond to your questions. Best wishes!

Dear Renee,

I do not know too much about it. A friend of mine has a son whose twin has Marfane's syndrome, but the son seems to be allergic to everything from food to dander to ...
I would suggest converting your home to non toxic cleaners and laundry detergent. My children's allergies (though not as drastic as your son's) have helped so much because of this one move I made. All cleaning products, all laundry detergent all soap and shampoos. We also went to a naturopath for my son and those medicines have helped along with his regular meds for his asthma.

Good luck, feel free to contact me about the household conversion.
C. W
www.MyHomeCottageBiz.com
###-###-####

Renee,
I am sorry that you and your son are going through this. Just a thought, but have you talked with anyone at the University of Arizona Medical Center to see if they know anything about what you are going through? I know a few people who have contacted them about uncommon issues and found excellent advice and care there. I hope that you find answers and resolution soon. God Bless you both.

Renee~
May God bless you, your son & your family during these trials.
Love,
~D.

Renee,

I have no clue about the syndrome. I wish I coudl help you there.
However the exema I can help with. I have a number of people who have relieved and eliminated problems with exema using Lotion Bars from Southwest Lifestyle. No perfume, no chemicals (anythign with propylene glycol, mineral oil, parabens, etc is going to make it WORSE. PERIOD). I had the worst skin in the world. Now even my 14 year old daughter comes up and runs her fingers on my hands and says "mom your hands look so healthy and young". Perfect strangers are sure i'm not old enouhg to have 8 kids and a grandchild.
I invite you to visit www.southwestlifestyle.com. Go to Body Care, Lotion Bars. My suggestion would be to start with the Unscented. The other alternative would be in the Special Care section for AntiBacterial cream. (Again...no junk) Safe to use on the whole body and very healing.
I would be delighted to talk with you in person about these. Feel free to message me here or call me at ###-###-####.
S.