Today's question is about treatments!
What are the best things about your child's current medications?
What are the worst things about their current medications?
What other care or treatment are they receiving, apart from medication?
Share your experiences and interact with other members in the comments below!
The best things about my sons medications is that it is helping him stay in remission and off the steroids!
The steroids were the worst part about the medication because, it would make him gain a lot out weight, eat a lot, not sleep, hyper and acting out! Being on that medication was the hardest!
As of right now we are not receiving any other treatment besides the medicines!
My son takes 6 medications and supplements. He handles them well and has learned to swallow pills. The worst part of the medications was the taste for him and causing stomach upset. He takes his medicine with little problems now that they are pill form. He suffers from constipation as well due to the high amount of iron that he takes. He also recieves iron infusions at his doctors visits.
Nest thing- they are finally bringing her protein down after trying for 3 yrs
Worst thing- her remembering to take it and being able to swallow the pills. (The worst Back When she was on high dose prednisone, was her Vision got so blurry, that she could not see. She has no other treatments, just monthly lab/urine.
What are the best things about your child's current medications?
The best thing about my son's current treatment is that it works! He is currently on 40mg of Prednisone a day which we started 10 days ago when he relapsed and he is already back down to trace amounts of protein. We will begin tapering him off tomorrow.
What are the worst things about their current medications?
I don't really have any bad things to say about his current medications. Luckily he has not had any side effects really. Not that I can see, anyway. Some minor stomach discomfort and he is a little more emotional than he already was.
What other care or treatment are they receiving, apart from medication?
Other than the Prednisone, when he is relapsing we do a low sodium diet. We try to stay between 1200 and 1500 a day.
My son is only on a high blood pressure medication right now. The best thing about that is it is controlling his hypertension for the most part. The worst thing is, he's only 2 and has to take this medication daily. He is also anemic so he should be taking iron supplements daily but it makes his stomach hurt so bad so we give that every few days. As far as non-medication treatment, just a low sodium diet.
Right now my son is only on lisinipril (bp med). It makes him tired, but it keeps his blood pressure right where his nephrologist wants it to be. He was previously on a prednisone treatment for 7 months which was really rough - he had all the bad side effects and he hated being on it - he's a teenager and put on 27 pounds and got the acne that comes along with it, and the mood swings. He's off it now, but his protein spillage keeps getting higher and higher and I'm just waiting for him to be put back on it as it did help. No other care or treatment right now, but he is going to get his tonsils taken out in November as we've read alot about that helping with IGA - either slowing down the progression of the disease, or helping to stop him getting sick so often and having flares.
The best thing about my son's current medications would have to be that he only has to take a few post-transplant!!! Pre-transplant, there were 10+. Current medications ... Prograf (liquid suspension that our compounding pharmacist can flavor ... flavor of the month is watermelon and my son loves it, haha); chewable aspirin 3x week to prevent blood clots; and then "normal" stuff that has nothing to do with transplant! Probiotic, multivitamin, claritin. Those of you post-transplant will notice that he's not on CellCept or steroids. Our transplant center is steroid-free (unless a short dose is needed). Son dropped CellCept as part of regimen 4 years ago (transplanted 5 yrs 4 months ago) b/c when taking it, he was too immunosuppressed and it caused his EBV level to sky-rocket. Stable ever since removing it and kidney still thriving.
Worst thing about medication is just having to deal with it, in general, but then again our son sees me taking medications, too, so he just knows it to be part of his routine. Dealing with insurance to approve medications can be annoying as all get-out, but it has gotten easier over time.
Treatment aside from medication ... he's been going to counseling since 3.5 years old (7 years old now). He was going weekly for about 3 years and just recently started going every other week. Being able to identify his feelings and learning to properly express them has been very important. A lot of times, the child's mental health falls by the wayside when we get busy managing the medications and kidney health. Cannot say enough good things about counseling for these kiddos (and caregivers!).
Best thing - he's alive, his transplanted kidney is very happy.
Worst thing? Some have to be refrigerated, some cannot be refrigerated. Makes clinic days or other times we are away from home somewhat challenging, as we can't keep all his meds together. We give meds at 9, 9:30, 10:30, 2, 7, and 9. That's a lot of med times. Plus a subq infusion weekly. It's still better than dialysis, though. 
Non medication treatment? Double voiding every 2 hours, daily BPs, a few dietary guidelines, fluid minimum (easy since he still has his gtube), OT to help build in those skills he didn't develop while he was young because his body only had energy for the basics of living.
The good thing is my daughter learned to swallow pills. The meds she is on now are to prevent damage to her kidneys and reduce the amount of protein spilling from her kidneys. She is on two by meds (although she doesn’t have high blood) so that has been challenging in itself because her blood pressure would go too low and she would get really bad headaches. The Neph has adjusted the meds so I think we are at the right dose for her body. Her renal function is normal and her albumin levels and creatin levels are almost back to normal. My main concern is she is still spilling protein and she is still swollen. The doctor gave her a diuretic but I don’t see that it’s helping much. We are maintaining a low sodium diet which she was hoping was temporary and is struggling now after 3 1/2 months. Being on the diuretic I am careful that she eats high potassium foods so she won’t get the side the pains/ cramps from the diuretic. It’s just so much work and she being 12, she is not always cooperative with daily urine sample. You would think that every morning she would remember she has to pee in a cup, but it doesn’t happen every day...ugh! The challenges of this and a almost teen can be overwhelming for me.
What are the best things about your child's current medications?
They help keep her transplanted kidney and liver accepted by her body, and her body stays in balance. Her main immunosuppressant is prograf. She was steroid-free after transplant but had a mild rejection that necessitated a steroid pulse. She has been on a low dose of steroids ever since. She was also on cellcept at the time of transplant but she then developed BK and EBV (two viruses that can damage a kidney) so she was taken off of it. We discovered through an Ambulatory Blood Pressure Monitoring (ABPM) study that she had night time hypertension so she is also on amlodipine to keep hypertension in check.
What are the worst things about their current medications?
She has to take them every 12 hours. She also waits to eat one hour beforehand and one hour afterwards so that they will be absorbed in the same way each time (on an empty stomach). Our whole family waits to eat during those times so she is not alone but it's sometimes tricky to figure out meal times. Thankfully, she does not have many side effects from her medications.
What other care or treatment are they receiving, apart from medication?
We try to follow a low sodium diet and she drinks 4 liters of water each day to keep her transplanted kidney healthy.
The WORST: weight gain, lethargy, mood swings..some treatments didnt work so some side effects were burning sensation, sweating and even crying.
The BEST: I guess knowing that that the WORST is no longer happening.
I think the worst pre-transplant will always be any injections (epogen and growth hormones daily for our 1 y/o daughter at the time) and IRON. Ugh, although it was so important the iron was the worst. Taking it by mouth made her vomit, taking it by NG tube usually made her vomit and if any stayed down she’d get terribly constipated. She eventually began getting bi-weekly iron infusions via IV which ended up being the best option for her.
I’d say the best treatment for us has been transplant! Being born w/ ESRD, medications and treatments have always been a “bridge” to get our daughter by until she was a big enough size for transplant. Since transplant, we’ve reduced her meds from 26 individual doses per day down to 2. She gets cellcept & rapamune and although both have potential for some side effects (as most meds do) her levels are monitored closely by monthly lab draws and are adjusted accordingly as needed. So grateful for science and these meds being available for transplant recipients.
The worst part is the steroid side effects...And also all of the unknowns with other treatments. We have tried Cytoxan, and it didn’t work. Rituximab is our go to drug. It keeps my son in remission for long periods of time, however the long term effects are unknown. It’s scary to continue giving this medicine not knowing what the future holds, but there are just no easy choices. All of the choices we have seems bad. We just have to choose the one we feel most comfortable with. Somehow, I feel more comfortable with rituximab than with the anti rejection drugs.
Best thing about my son's medications is that they are mostly controlling his hypertension and anemia. The worst part is that the iron supplement upsets his stomach so much that it's difficult for him to sleep at times. Braxton gets labs and an ultrasound a few times a year and is on a low sodium diet as best as we can. With Dents Disease, there is a chance for him to develop Rickets as well so we have to make sure he gets his daily amount of calcium, but not to exceed that too much bc of the chance of him getting a kidney stone bc of all the calcium. So it is kind of tricky but we're learning new things every day.
We've been on steroids since diagnosed 3 months ago, started to taper once and relapsed. The best thing is hopefully it will eventually put him into remission. The worst is the mood swings, they are horrific. 4 year old temper tantrums on steroids are no joke. On top of the steroids, he is also on blood pressure meds, zantac, vitamin d, and diuretics as needed. The lasix did nothing for his swelling, but this last relapse we added Metolazone which was amazing. He lots 10 pounds of water weight in a few days and he didn't have to be hospitalized for albumin infusions.
The best thing is that she responds quickly to steroids. After 3 days of treatment, her protein levels usually come down. I hope that this will always work for her, but there's no way of knowing what will happen as she ages. The worst part are the side effects. The rage, personality changes, swelling, constipation, lethargy, thirst, increased urination, it's just terrible.
This is the only treatment we are receiving at the moment and I wonder if there's something better out there.
We currently are not on any medication. We truely didn't like giving blood pressure medication to our infant-3 years old. After that we were suprised when we were told that we no longer needed to give it to her, and that we would just continue to watch.
