I am so overwhelmed with emotions right now. We got A’s lab results back, and as the doctor began going over them with me, I actually broke down and cried from the mixture of emotions.
I am angry at the modern medical doctors and pediatricians of our past who refused to listen to me. I am angry at A’s birthmom for taking the drugs that potentially caused his issues (though I am very grateful that she made the choice to give birth and place him with us, where he could receive the care he needed). I am angry that not a single doctor would even order the simple bloodwork that could have allowed us to help him almost 3 years ago when I started voicing concern. I am angry that due their downright negligence, we have all suffered for the last 3 years, fighting his constant thirst, urination, putrid smells, confusion, cognitive issues, and more.
I feel terrible that I have limited his fluid intake for so long, when he was truly dehydrated and thirsty. I fell badly for being upset about his constant urinating issues. I feel guilty for being so repulsed by his body odor. I feel badly for disciplining him so frequently for what I thought was disobedience, hyperactivity, lack of focus, etc. I am also a bit concerned as to whether we will be able to solve the problem with simple supplements and naturopathic remedies. Even our doc isn’t sure at this point.
At the same time, I am so incredibly blessed to FINALLY have a doctor that is working with us and listening to my concerns. I am relieved to know it wasn’t my imagination telling me something was wrong for the last 3 years. I am thankful to FINALLY have more of an idea what is wrong with my child. Most of all, I am thankful to have a plan of action, and to know that it, hopefully, isn’t too severe of a problem.
OK, now that all that is off my chest, here’s the deal…. To summarize, A’s liver is working fine. His kidneys, on the other hand, are not. Without further, more in-depth, diagnostics, we don’t know the exact problem with his kidneys. Based on the current results, however, we do know that it is NOT kidney failure per-say in the traditional sense, but, for some reason, his kidneys are failing to filter properly or in correct proportions. Here’s the cause and effect, to the best of our knowledge right now….
- His sodium was surprisingly very low, which is off-balancing his NA+K cellular pumps, which is preventing his tissues from retaining the fluid they should, which in turn causes him to urinate frequently.
- Since his cells can’t hold fluid well, he is in a constant state of dehydration, and therefore thirsty (which legitimately explains his drinking fetish over the last 2 years).
- His chlorine levels are on the high side for some unknown reason. Vegetables are about the only known source of Cl we get. Because his kidneys aren’t filtering it out properly, the toxin is being expelled somewhat through his urine, but also via his breath and his sweat, causing his terrible, ammonia-like, body odor.
- His amino acids and several other levels are very high, meaning his blood acids are very high. Because they are not being filtered out properly, it may be causing his body to essentially experience “hot flashes” to cause him to sweat out the toxins.
- The high acid levels of his blood may also be responsible for his decrease in cognitive function, with the symptoms we have been fighting such as confusion, cognitive delays, and the “just not getting it.” At his levels, it could very easily be affecting his brain.
- He had low iron levels in his blood. We don’t know at this point if this is just a low iron level or if there is another cause for this such as a low copper level (which directly relates to the function and stability of iron in the blood/body).
OK, so now, thanks to one doctor ordering one simple blood test, we have essentially explained every symptom I have complained about to doctors for so long. Did I mention how upset I am about this whole thing?!
Anyway, it is possible that this issue is drug-related, being that the birthmom’s drug use permanently damaged his kidneys. That is a worst-case scenario, and I am going to hope against that one. If this is the case, we will have to get a referral to a nephrologist (kidney specialist) to deal more in-depth with the problem. Unfortunately, our naturapath doc has found that when he jumps to refer for a similiar issue, the nephrologist will put the child on pedialyte to increase the salt and some minerals. Obviously, such high-sugar, artificial supplements are the last thing we want right now. Let’s just say I have lost a lot of faith in modern medical doctors.
So, before we go that route, we are going to attempt basic supplementation. A will be allowed free-choice water in a sports bottle that will allow me to measure his intake. This will also, hopefully, prevent him from seeking fluid from other sources which would prevent accurate measuring. Then, we are going to add extra sea salt to all his food. Finally, we are adding a new supplement to his day. In addition to the fish-oil he already takes, he is going to began a regimine of a natural, across-the-board, mineral supplement that derives from plants, which allow it be more absorbable and digestible to the body. Whatever A needs, he will be able to absorb, and anything else will likely just be expelled. He will get low doses at first, divided into multiple times throughout the day, in hopes of preventing any kind of shock to his system. Then, we will increase as needed, based on the results we observe. He will have a weekly urine test that help us gauge the acidity of the urine.
Needless to say, we are hoping for the best. The best would include an overall improvement in his kidney function, which would, in turn, be observed through an improvement in his cognitive function and reduced confusion, a decrease in his urinary output and fluid intake, an improvement in his body odor, an eventual decrease in his salt requirements, and, hopefully an overall improvement in future lab blood tests.
Thus, we embark on the next level of this journey to help A get healthy. I truly look forward to seeing the results of this!

October 17, 2011 at 12:51 am
Sounds like you are being an awesome dad and taking care of A. Don’t beat yourself up about the past. What matters is now, and he is getting help.
I’m sure you’ve looked into this, but I’m wondering about the chlorine level in your water supply. If he is drinking a lot more, it could be a source. I know when I checked the level in our public supply it was very high. That’s why we have to double filter the water.
Good luck with everything! I hope thing start to turn around for you!
October 17, 2011 at 12:56 am
After reading your profile, I should have said awesome dad AND mom!
October 17, 2011 at 1:35 am
We have been using chlorine and floride-removing filters on our water for years, and only recently did we stop after moving to a mountainous area with well water. Our water here tested clean for any common chemicals, so we opted to drink it pure for the mineral content. Otherwise, chlorine is very limited in our diet and lifestyle, which is why we have no reason for this issue. Perhaps we’ll figure it out one day.
October 17, 2011 at 7:42 am
Wow. Prayers of comfort and guidance in a difficult situation, to say the least, and of rejoicing and thanks for the victories won also!
October 18, 2011 at 12:45 am
Welcome to the wonderful world of medicine….. I completely understand where you are- btdt.
I will say, that if you go for kidney, the kidney clinic at UCH is one of the best in the country- and they are *competent.* I am not usually impressed with doctors, but they are good- and they WILL sit and listen (they did for me, and I was an emergency get in right now type of a deal) Or at least they were two years ago….
My suggestion would be (which you already know) to document everything. Get a referral to UCH Kidney Clinic. I, personally, would not bother with the run around. Hopefully they will be willing to work with your naturapath and then make sure you have all the testing UCH wants done ahead of time and that you have an actual copy of the records to take with you, in the event that they don’t all make it there for some reason…
Good luck~! You are getting answers- you will get there!
October 18, 2011 at 8:08 pm
D and S: I am soo sorry that you are experiencing these medical problems in your children that could have possibly been prevented by their biological moms. A wise woman once told me during a pity party I was having when you were diagnosed with your medical situation and your father was shipped overseas for a year that God had chosen me to be your mom as he knew that I could handle it. I truely believe that God selected you two to be their parents because he knew that you could handle it and you could make a difference in their lives – as you are doing. Could you imagine the life N and A would have if they had NOT been placed into your home. Their life – in the normal low income, minority home that they were born into – would probably have consisted of high carb, processed, high fat diets and very little medical care. They have been on an excellent diet and lifestyle since their birth so they are WAY ahead of the game – even before their diagnosis. I am sooo very proud of what you are doing with your kids! I love you! MOM
October 18, 2011 at 8:28 pm
Thank you for kind words, and I agree completely that God has allowed them to be where they need to be. Having met, and in some cases, really getting to know the birthmoms, it is true that A, in particular would likely have never received the care he needed. We may never understand why He thinks we were the parents for these particular children, but we will always feel blessed that He is giving us the opportunity, and allowing us to be blessed through the journey these children are traveling.
October 19, 2011 at 5:00 am
So glad to hear you are making progress with A’s new doctor! What a great smile:))) He looks like a happy little guy!
October 19, 2011 at 2:11 pm
Way to go, Mom, to fight for your little guy! So much of the time it feels like we have to diagnose ourselves first, and then fight for treatment in these cases. I can hear your tears and frustration in your post. Even in this, you can trust God’s timing, even though we don’t always understand it.
December 15, 2011 at 3:08 pm
[...] It has been a couple months since I updated on A’s situation, but our investigation, and the stress involved, certainly hasn’t stopped. You may want to catch up by reading past posts regarding our beginning, his drinking fetish, naturopathic treatment, and a first step toward healing. [...]