Hello all! It's been awhile since i've been in here, but I thought I would ask a question and maybe get some thoughts. My (now) 5 year old son was diagnosed at 2 with mild/moderate Crohn's. He was on Apriso for awhile, but due to insurance, we switched to balsalazide 3x a day and he also takes 2 prevacid a day for reflux/burping issues. Since 5-asa's can rarely cause kidney issues, his GI does a yearly urinalysis to monitor kidney funciton. Fast forward to September of last year...urinalysis shows +1 protein in urine. I made an appt with his pediatrician and we talked about something called orthostatic proteinuria (common in children and benign) but after a 1st morning urinalysis, my son still had trace protein on a dipstick and +1 on same sample but sent to outside lab so this was ruled out. Pediatrician ordered kidney ultrasound and that was normal. Some labs done in mid October were pretty normal. Dr. ordered a spot protein/creatinine ratio and that was elevated, but not enough to be concerning. Recheck of protein in December and there was none (although pediatrician did not send this out and only did dipstick in office and other tests he had done previously had all been sent out) but +1 ketones in urine. He said we didn't feel like we had to follow up anymore and would recheck at his next well check (this October). In mid April of this year, my son woke up whining telling me he was thirsty and was cold and clammy and told me his heart was beating fast and hard and he didn't like that feeling. This made me think sugar and I took a reading on my husband's monitor (type 2 diabetic) and my son's sugar was down at 56. Emailed pediatrician and he got us in. By the time we had seen the Dr, my son had vomited 3 times. Did urine and labs...urine had +3 ketones and +1 protein. Pediatrican was concerned with urine results as he said this is not the results he would expect of someone who had only vomited 3 times. Labs leaned toward dehydration but son had been eating and drinking normally the previous day. Sugar was 62 in office and 60 on a basic metabolic panel and a1c was normal. After 1 meal, his sugar spiked to 216. However, the pediatrician told me to monitor sugar for the next few days and we never had another off reading. My son complained of having this feeling again a few weekends ago, but didn't tell me before he had eaten so I wasn't able to comfirm low sugar, but he said he felt the same as the other time. Recently saw the GI and he wants endocrinology and nephrology consulted to rule anything in or out. We will see them this week. I brought up the medication thing having an issue on the kidneys and he said while they can cause issues, he would first think sugar would cause damage over medicine. Not sure what to think, other than the protein in the urine has been going on for 8 months now and the low sugar came out of nowhere. I'm getting nowhere with google and i'm still thinking his meds may have something to do with the protein, but GI doesn't want to entertain that theory yet. Anyone have any similar experience with either low sugar from a non diabetic or protein in the urine...how were they treated and what were the causes? Thanks to anyone who can help!
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It's been awhile...
- Thread starter amor1218
- Start date
crohnsinct
Well-known member
I am going to preface this with "Do as I say, not as I do".
Stay off the internet. Don't try to solve this on your own. Let the experts who went to school to study this stuff and who are in the business and see hundreds of patients do their thing. If something was wrong with your car or you were doing some home construction would you try to take down the wall or replace the motor before you went to a professional? I know as parents we want to research things and be prepared but sometimes internet searches return nothing or the worst and then we get all confused and worried etc. I do, however, think it is a fine idea to toss the questions out on the forum. You just never know when someone else may have had the same experience and can give us advice or some good questions to ask at the appointment. Sometimes it just helps to know we aren't alone.
As I read your post, I was thinking time to get a nephrologist and/or endocrinologist on board. Too many different and weird things going on. In my totally non medical opinion and experience, if medicine is causing the issue, it doesn't usually come and go. It hits and it continues to get worse and more pronounced but just like everything, I think that is a generalization so I think it could still be a possibility.
Poor little guy. I am impressed with his ability to articulate his symptoms but so sorry that he is having to go through this.
Glad you got a quick appointment. Specialists can leave you waiting months and that is excruciating. Also glad you got both on board at the same time. I hate it when you first have to go through weeks with one for them to say, "nothing wrong in this department" and then have to start all over with the next one. Good luck this week. Keep us posted!
Stay off the internet. Don't try to solve this on your own. Let the experts who went to school to study this stuff and who are in the business and see hundreds of patients do their thing. If something was wrong with your car or you were doing some home construction would you try to take down the wall or replace the motor before you went to a professional? I know as parents we want to research things and be prepared but sometimes internet searches return nothing or the worst and then we get all confused and worried etc. I do, however, think it is a fine idea to toss the questions out on the forum. You just never know when someone else may have had the same experience and can give us advice or some good questions to ask at the appointment. Sometimes it just helps to know we aren't alone.
As I read your post, I was thinking time to get a nephrologist and/or endocrinologist on board. Too many different and weird things going on. In my totally non medical opinion and experience, if medicine is causing the issue, it doesn't usually come and go. It hits and it continues to get worse and more pronounced but just like everything, I think that is a generalization so I think it could still be a possibility.
Poor little guy. I am impressed with his ability to articulate his symptoms but so sorry that he is having to go through this.
Glad you got a quick appointment. Specialists can leave you waiting months and that is excruciating. Also glad you got both on board at the same time. I hate it when you first have to go through weeks with one for them to say, "nothing wrong in this department" and then have to start all over with the next one. Good luck this week. Keep us posted!
Thank you for your kind words! It's so hard to stay off the internet lol. I just try to prepare myself for the what it could/might be, trying to find anything helpful. He woke up yesterday saying he felt weird. I asked him if it was like that day, since we have told him over and over, if he ever feels like that again, he has to let us know right away. He said a little. Took his sugar and it was 67. Not as low, but he usually runs in the upper 80s-low 90s fasting, so it makes sense why he was starting to feel weird. Gave him some pancakes and syrup and he was fine. But that meal spiked his sugar to almost 200 again. Ugh. Wednesday can't come soon enough!