igm nephropathy

i have a 2yr old with igm nephropathy and am trying to find any one who has had this for some yrs and what is their health status or what have they being told would happen to their health

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Hi,
This may sound rather odd, but I have never spoken with someone who had IgM, or a child with IgM, so I am happy to make a connection and I hope that I can provide some encouragement and an ear if needed. :-) It seems like this rare disease sometimes has made me feel quite alone, I don't know if you feel that way but I have.
My son has had this illness for 8 years now. It has been a very long haul, his disease has been relentless, as he has had many relapses. He has tried many immune suppressive medications which have all failed. We have had some pretty discouraging times.
Until recently we stopped doing the immune suppressive drugs, and we are doing Low Dose Allergy Therapy, and acupuncture, as well as some herbs, but we are finally having some great success! So we are thrilled about his improvement over the past 6 months!! (Although he is still on Prednisone, because that is the only thing that has worked. But we are slowly tapering him off of the Prednisone and he is at a much lower dose than he has been on for years. We hope that the treatments that he is doing will continue to work.
My son has had 2 biopsies one at the onset of the illness, the other was 2 years ago. The latter biopsy showed no scarring, his kidneys were perfect! Which gave me a lot of encouragement, that I believe that he can grow out of this illness, because that is what doctors say that sometimes this illness can go away at puberty! But if not at puberty, I think it is still possible to get well.
As far as what we are being told will happen with my sons health...The truth is that nobody can answer this question, nobody knows!!! There is no known cause or cure for this illness as far as Western medicine goes. They do not have the answers about curing it. But there are alternative ways, ways which most people may not think about, because if you live in America, you are conditioned to believe in Western medicine and doctors, more so than alternative medicine. I am not against Western medicine, I believe that there is a time and place for many different types of healing. I do believe that you have to really think about what you are doing when pursuing care. For instance if you go to a surgeon--they will prescribe surgery--that is their training! If you go to an herbalist--they will prescribe herbs, acupuncturist--of course acupuncture, you get the idea!! Each discipline I believe is valuable for various problems. I think you just have to learn about your particular illness--be willing to do the research, then investigate various ways of handling the challenge, and I believe you always need to be searching for answers. Then the most important part is being willing to try new things if you are not having success, or if you do not feel right about what your doctors are proposing, We moms have gut feelings about what is right or good for our children, and that is one thing that I have learned over my 28 year career, as a mom, is that we need to follow our gut feelings!!
Hope this helps a little. Hang in there!

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My son was diagnosed when he was 3,he is now 5..what treatments are they using to help your son?

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We have tried many immunospressive drugs, all have failed, but Prednisone.

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My son was diagnosed via biopsy at U of M in Michigan a year ago.. I noticed bilateral edema of the lower extremities and knew something was really wrong.. he was in the hospital for a long time, several doctors wanted to do studies/case reports/presentations/pictures, etc.. he was a trooper about it.. he was 15 then!! Rare to be diagnosed later in life.. NO studies for treatment here though?? NKF told me he should be seeing a heme doc.. MY heme/oncology doc said no.. I dont know. I have contacted Finland, Germany and places here in the US. Nothing. He was signed up for one clinical study, but not a trial, and nothing came of that because he was the only one in all 5 study sites in the US signed up!! Prednisone worked, but that is a bandaid not a cure. He is now a little heavier and it is very rough on the body (Prednisone) the meds, urine dipping, BP monitoring, exclusion of ALL salt and possibility of another relapse (he had one) make life difficult for a 16 year old.. but they DO adapt and manage, more so I am certain if they grow up that way and do not know any different? I am trying to start a petition to take to the NKF to put money toward research, since I was told "it is too rare to spend $$ on) If enough of us yell out loud for our childrens future, maybe it will atleast get as much attention as the pink ribbons? Just because our children are only a few, doesnt mean they matter less!!!!!
By the way, I have never talked with ANYone who had a child with IgM.. I felt so isolated, as does he.. this is an amazing find, and I am truly sorry you guys are going through this as well!!!!

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Sorry your son is having such a challenge, teen years are hard enough without IgM.
If you don't mind my asking.....How far apart were the relapses? Do you feel any certain thing brought it on? Like was he sick already? or traveling? What are his meds now and the dosages?
I am just trying to get a feel for where he is at. And I also want to encourage you both to look for other answers to bring about better health.
As we both know doctors do not know the cause or cure.
It is frustrating to me, when they act like they know what they are doing, kind of an ego thing going on!

I also wondered if you knew about the Nephcure Foundation?
www.nephcure.org
You might be able to team up with them, we are currently trying to help them.



I don't know if you are interested in emailing me, or if your son wants to email or talk to my son to share or if he has any questions.
As I stated we have never met anyone with this same condition. We did get an email one time from someone in foreign country, but the communication barrier was there, their English was limited.

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If you would like to email me directly, you may do so at:
angieallred@hotmail.com

My son just turned 12, he is a lot more mature for his age. I think being as sick as he has been,made him grow up so much faster!
He has been home schooled, I don't really think public school would have worked, he was sick all the time,
before we started to use alternative medicine, he was relapsing every 6 weeks!!!
We have a large family, so he used to dealing with all ages.
He is sweet with his younger brothers, and he likes being with older people too.
In fact his best friends are also his big brothers friends ages 25 and 30!!
One likes fishing a lot, so they are fishing buddies, and both like to play video games with my son now and then.
My son is a deep thinker, very bright, always planing.
Feel free to email us if you like. I can share more info.
If your son gets on YouTube he might already be familiar with my son.
Hang in there! It can be tough, but we must press forward---always forward!!! :-)

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My daughter is going to be 3 and they have her on cellcept we did round of prednisone but only the 1st round helped and 2nd round was no good. What medication does yours take and what do the dr say? I guess what scares me is just so much medicine at such a young age am scared of what will effects will be in long term. How was your baby diagnose with igm?

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My son has had 2 biopsys one at the onset of his illness (so basically when he was 3)
The other was when he was almost 10, which I requested, since his illness had been relentless and I had this fear that his disease had changed into something way worse---like FSGS or some disease where he would eventually need a kidney transplant. Surprisingly enough the second biopsy showed no scaring!!! His kidneys were perfect!!!

As far as current Medications right now he is on Prednisone and lysinopril.
He is receiving acupuncture weekly, low dose allergy treatment every 8 weeks, he is taking Protandim, and other herbs.
I am done with immunosupressive drugs---none of them worked and my son got sicker on them!!! I would never recommend Rutuximab!!!!! This is purely experimental!!! I gave into the doctor on this one... I regretted it for the whole year after the treatment, and I still regret that I did that treatment even today! It takes one whole year to get the body back to where it was, in terms of the blood--before the treatment. Not too good!! Plus there is not a long term record of side effects.

Yes chronic illnesses are a BIG concern and so are all of the medications.
You can go crazy worrying about all of the unknowns!!
My best words of wisdom from what I have learned is to
1. Learn all you can about your child's illness. 2. Don't be afraid to ask questions, get second opinions, and most important to make your own decisions about what you want to do for treatment. 3. Be willing to look for answers...pharmacy drugs seek to cover symptoms, not cure the patient. There are other ways of handling sickness---seeking to heal the body ---unfortunately Most people in America have bought into the idea of Western medicine and that is all they will consider doing. Yes Western medicine has it's time and place--but it can not cure IgM, it can only try to cover the symptoms!
4. If you don't already have a relationship with God, consider it. I have believed in God my whole life, but for quite a few years into my son's illness...I could not let go, (Let go, let God) I, like you, stressed about my little child being sick. (It is what good moms do! It is natural to want to protect your baby.) I worried about all of the unknown things that could happen with the illness itself...would he live a shorter life? Would he die? Would the medicines help more than they hurt? We didn't have side effects from the meds at first, but then once we started seeing some...I worried so much that there would be more! The treatments were not working out as planned...I didn't know what to do...I fell into despair from time to time, I kept trying to pull myself out and stay out...but the truth was that at that time I was not letting go and trusting God, I was hanging on saying "No, this is not ok with me! If my son dies or has a shorter life, or has pain and suffering, it is not alright!" I was not mad at God, but quite clearly I was not trusting Him completely. But as time went on I began to realize that my faith in God does not depend on outcomes!! I had to learn to let go.... to leave my heavy burdens at His feet and let Him carry them, and to lean on Him. To put my trust Him, and Him alone. I had put so much trust in so many other things--doctors, medications, hospitals, and science, but not Him. God is there. He cares for us. He answers our prayers, every single one of them! He longs to help us and I know as we turn to Him and ask, that He will help us. Facing lifes trials and challenges are possible with Christ who strengthens you and me! 5. Surround yourself with positive influences!!!--Good friends, uplifting music, beautiful messages from books, a church family, and caregivers who you feel are the best fit for your child. It is true we can not choose our challenges, but we can choose how we will respond to the trials we face! :-)
I hope this helps a little. I will be praying for you and your little one.

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PS I really wish I would have sought out other alternative care sooner in the illness, before he had some bad side effects from Prednisone, but I did not know what to do since I had grown up with Western medince only.
I really believe that the current treatment of the low dose allergy is helping my son, since he has shown great improvement over the past 6 months. The doctor that is doing the treatments has had huge success with this treatment with other autoimmune disorders. So at the present time I really feel like we are on the path to better health. :-) which is the best place to be!

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Thanks for your response,I actually got a call today form my daughter's reno dr and she came back positive with protein in her urine. We will be going this week coming up to leave another sample of urine and it comes back positive she will be starting a new immune suppress medication stronger than what she is on right now cellcept. I have heard of the medication you mention rituximab what side effects did your child have on this medication? Sometimes I think i am to over protective of my daughter due to her illness because one of my sister tell me your daughter looks ok, she doesnt look sick she plays and has so muh energy maybe more than a child who is not sick. Does your child stay sick all the time or once in a while thier sick and it just complicates her illness?

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What is the difference between IGA Nephropathy and IGM Nephropathy? Or is it the same?

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IGA, from my understanding, is caused by inflammation (from infection).. IgM is an autoimmune condition in which the body "attacks" the kidneys (loosely explained)......a biopsy will confirm! IgM is pretty rare, my son was treated through
UofM..and so many medical students approached him for consent to present his case. (most people are diagnosed as young children, not at 15 yrs old). I wonder-- did anyone else here with an IgM child deal with high birth weight, low blood sugar and jaundice at birth (in the baby) and Uterine prolapse due to adhesions from the placenta? Oh.. and by the way- my son (Jordan) has been in remission for almost a year now- and he is not medicated at this time!!! He has not been able to lose the weight gained from the prednisone treatment, which is hard for him, because now his ankles always look slightly swollen, and he has had to get an entirely new wardrobe.. I have always given him love and confidence.. and he will be 17 this Feb, so thankfully.. he is taking it all in stride ;-) He wanted to be a policeman, but... he was hit by a car in May and experienced a tib/fib break that required a titanium rod with pins and screws :-( We have watched for any signs of relapse after this, but thankfully, none!!!! To all of you with young children: know that IgM is scary, and it changes your entire lifestyle (the family) but you can do it! and every day that goes by during remission is a blessed day! I have recipes to make a lot of stuff if anyone wants some! (butter, salsa, ketchup, etc) so you can make anything with almost NO salt!! He is yelling at me right now to let him make lunch.. and I want to.. haha.. my email is brencot74@gmail.com.. I check it daily :-)

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