Dear worriedfordaughter, What supplement is your daughter on. And my next ? would be being dxed this young does your daughter have the heridity type of RTA. I started this group for this purpose there are so many out there with this seeking answers.

Hi there. Which type of rta does your daughter have. My daughters have rta type 4. Also what treatment is she on.

I have RTA not my daughter my daughter and sons were tested for it. I have a combo of type 2 and 3. Right now I am on Pottasium Citrate but the dosages change all the time with my bloodwork. I also have been on sodium but that was making my sodium too high.

HI Everyone!! I haven't seen any recent posts but I am new to this forum. I am 30 years old and have RTA type 1 and have had it since my late teens. It has been a painful road but I am hoping to soon get some relief soon. I am in the process of looking for a surgeon in the NYC region to take out my hundreds and hundreds of stones from each kidney just to hit the restart button. I am looking forward to a normal life for as long as it may last. Don't know if it will last long or not. . . . that is my recommendation for all who suffer from stones from the RTA. I will let you know how it all works out. I also have pain in my bones I am guessing from the Osteopenia. FUN FUN! It is never a dull moment. I am currently in excrutiating pain from a kidney infection!! The infections never stop for me. Does anyone else have the same issues?

I forgot to say I am happy to find you all. It has been a hard road for me and I am sure for all of you, it is nice to know that I am not alone and that other people know what I am going through. Most doctors and people dont' know what this disease is and it is frustrating because I can see that they think I am over exaggerating the pain. It is hard to live a normal life with this. But like NancyBu says I try to use humor as well to keep positive . . . although it does seem hard on certain days. My family and boss are great. My poor husband . . . I can see he is getting sick of it. Oh well. Tata for now!

Hi, I have RTA 4. I take flourinef 0.1 mg daily. I have high potassium and with diet and flourinef have managed to maintain potassium below 5.8 for awhile. Now is 4.7 as of last week. My problem is weak legs during exercise, and generally weaker during my gym workouts. Any suggestions for safe energizer? I tire more easily Anyone relate?

I can relate because when I was able to finally gain a strength and get the go to return to exercising I started out slow. I have always exercised. I am am Army veteram and a Registered nurse, so I had a pretty good idea about what "too much" was and when I was being unsafe. my work outs would go well and I would always cool down and stretch very carefully and never had any problems, other then some slight expected soreness. All of a suddenn, there were a few mornings where I would get up and my legs were so weak that I had to hold on to the walls to use them. I figured perhaps it was a calcium or potassium issue. After several hours, I never gained strength in them. I went to the clinic, had labs drawn, and the only thing was that my bicarb was low as usual and I was dehydrated. I was given IV fluids and told to rest. This is not unusual though. My vitamin D came back extremely low and that can also keep you from absorbing the circulating calcium in the blood. See, the blood calcium level is good or high, but it's not getting into the muscle or bone because the there is no active form of vitamin D (Calcitriol) to get it there, if you have renal disease (like I do). I have to take Calcitriol 2x day . My legs were like totally unusable. I had to ride in a wheelchair until my muscles regained calcium and strength. At the same time I was put on OSCAL. So, I hope this answers your question. Keep exercising though. Just talk to your Dr. about OSCAL because we have the problem with stones. it all depends on your lab work. I absolutely cannot stand this disease. It has made my life miserable. It's almost ruined my marriage if 15 years. I don't know if people believe me sometimes. My bones have hurt for so many years and I had no idea why. At least now I know why. Take care.

hello. my name is shahista bakhrani. my first daughter was born in 1992 mombasa, kenya and was diagnosed with kidney problems. later we learnt that it was rta. she passed away at 1 1/2 years old due to very little medical treatment available in mombasa or in the capitol, nairobi. the doctor didn't even know that sodium resonium was available to bind to henna's excess potassium to excrete it since that was her main problem (and also low sodium and acidosis, but that could have been easily corrected with sodium bicarb and sodium chloride supplements) instead the doctor inserted a capd peritoneal dialysis which made everything much worse. we went to see doctors in india and england. they mentioned that it could be hereditary.
at that time, i remember my father, who had already passed away, mentioning to me before i got married that when i was very young that i was not expected to survive since i was wasting away. we lived in a small village in uganda at that time. they went to the doctors but their medication never worked. that's what my mom later told me. when i asked my mom, what did you give me to make me healthy, she couldn't remember. of course, it had been twenty years earlier, so i couldn't blame her. but all along, i felt that i was the one who had passed the condition onto henna.
my second daughter was born healthy, all praise to GOD.
my third daughter was born in 2007 again in mombasa. she too was not gaining weight. we left kenya and moved to dubai. we went to the hospital and she was diagnosed at 4 months as rta type 4 where she retains potassium and excretes sodium. as she was acidotic and i knew that honey make the body alkaline, i started giving her lots and lots of honey, and all praise to GOD, she was not acidotic anymore. as a matter of fact, her blood was on the alkaline side. i also gave her milk thistle and chlorella to maintain a healthy blood pH and acid/base ratio. the Na bicarb was stopped but she was still on vit d, florinef, sodium (Na) resonium, and sodium chloride and amlodipine for high blood pressure and also magnesium. aisha was going for the finger prick capillary blood gas tests twice a week to check for her electrolytes and acid base.
the magnesium prescribed to aisha was mg oxide which when i researched it was the worst type of mg to give to mg deficient people. a better type was mg orotate which i ordered on my own from usa and started giving it to her.
mg is known as a miracle cure. before the mg orotate, aisha was not gaining any weight and her sodium chloride levels kept decreasing which meant supplementation dosage was increasing but she was still not acidotic. after my own initiative of giving her mg orotate, aisha started gaining weight and her sodium levels were stable. however, i was still ignorant about the elemental level of mg required for a baby her age. so were the doctors. the german consultant pediatric nephrologist was ignorant and was not even willing to understand what i was trying to tell him. he told me to give to aisha 150mg 3 times daily whereas i was giving 250mg 2x daily. when i did as he prescribed, again aisha's sodium levels went down. but when i did as before, her sodium stabilized. mg orotate is only absorbed by the body at a 6-7 percentage. toddlers require 80mg elemental mg daily. so even at 500mg of mg daily, aisha still was not receiving her required elemental dosage. she was only getting half. GOD forgive me, i only found this out later.
then aisha had to have cochlear implant done as she has 80% sensorineural deafness. the cat scan along with the sedatives and anasthesia did their damage then. her sodium levels dropped, her calcium, hemoglobin dropped. i had to increase the dosages of everything.
all this time, i have been praying for a cure for aisha. for GOD has said that for every disease which I have created, I have also created a cure. my husband and i have been searching for a cure for the past 3 years.
one day my husband's colleage brought home his guru. this man asked us to describe aisha's condition and then said that her condition will be cured if you give her the juice of a banana tree trunk mixed with laban (or activia or yoghurt). half a cup of the juice mixed with half a cup of laban twice daily. i was so afraid since i knew that bananas have a very high potassium content and so does laban. so i didn't start right away. then i remembered to ask my mother. she stays in usa, again, i live in dubai. i said, mum, do you remember when i was a baby and not expected to live.
she said yes
mum, do you remember what you gave me to get me better
she said no
mum, did you give me the juice of a banana tree trunk
she said yes and she remembered that it was the juice of the banana tree trunk which cured me way back when i was a baby nearly 40 years ago in a small village in the jungles of africa.
i had hired no nurse so i was taking care of aisha for 16 hours a day while my husband, (bless him, oh God), took care of her during the night as her requirement was 9 mL nacl every 90 minutes along with the other medication. it took one hour to feed aisha, four feeds a day along with half an hour to give her 150mL of water 4 times daily and then she would get continuous night feeding via gastrostomy.
God forgive me, i entrusted my maid to make the juice. i forgot to add the laban and when i went to do aisha's blood test, calcium levels were dangerously low but sodium levels were higher and potassium lower. so, out of fear of harming aisha, i was too afraid to do the banana tree juice again. but my husband encouraged me
and i started her only on 20 mL with 20 mL of laban.
God forgive me, i entrusted my maid with such a precious medicine. she didn't clean the hand blender well and the fibers of the banana tree trunk were wrapped around the base and this is how she was making the juice. i had such high hopes that now aisha would be cured. after three weeks of juicing and aisha not getting any better, i had some intuition and went to check on the condition of the hand blender and that is what i discovered. old banana tree trunk fibers and the attached bacteria being mixed with the juice. i stopped giving her the juice because of the diarrhea.
then i started her on parley and carrot juice and that has helped some. i also give her dr. christopher's kidney medicine ordered online.
aisha is still not cured, but i won't give up hope.
i am 100% convinced that if we had known that aisha had rta which is exactly what i had, even though i was not diagnosed with it by a doctor, when she was four months old and had known about the banana tree juice, and given it then, she would be cured by now.
i pray that all of you get better, and i pray that aisha becomes healed also.

Hi,
I am so glad to find this group! Uggg...having a disease no one understands is SO hard! I have had Distal RTA for 5 years and have horrible kidney stones too :o( I was hospitalized last March with a blockage and I NEVER WANT THAT TO HAPPEN AGAIN. I take Potassium Citrate and if I take it like i'm "right" it does help. I was also diagnosed with Variable immune deficiency. I only have half the immune system I should but at least it's the good half??? :) I try really, really hard to live a "normal" life. My 13 year old son asks me how I do it...the answer is...I have too! Doesn't mean it's easy though. It took me 3 doctors before I found one that understood my disease and just didn't shrug me off. I drive 300 miles to my kidney doctor. I love him and he saved me :) I am just so glad to find people who relate and understand me.