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Protein Leak - Help

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S

SeN10eL

New Member
Relationship to Diabetes
Parent of person with diabetes
My Son has had results back from a study he took late last year with rather shocking news that he has a protein leak.

My Son is 11 years old and has been a Type 1 Diabetic for two years in December. He has managed his Diabetes brilliantly from the start and was doing his own injections within a month of diagnosis. He can carb count well with most foods and is sensible with his diet. He is an avid trampolinist and is fit and healthy apart from the above. We are very proud of him.

Tom was asked in his check-up mid last year if he would be willing to to be involved in a study which after a talk he decided it would be helping others and would like to be part of it. over the next three months he had regular bloods and urine samples taken. In April this year we were told that Tom's urine tests had shown a protein leak and not a transient one. The doctors would like him to undertake another study aimed at pre-teen type 1 diabetics with Microalbuminuria (small leak) and the affect of ACE Inhibitors. Because of the nature of the regular testing and the fact that he may or may not be taking either a placebo or an ace inhibitor and the fact that ace inhibitors can cause side affects and taking into consideration he will be going secondary school in a week we decided with his input not to take part. I hope to god we chose right. More importantly if he had gone on the study we would never know the results or if the drugs he were on were real or not. I asked the question would Tom be treated now for this protein leak but the doctor literally dispelled it and was actually quite rash with us because we were not taking the study.

My question is this. Microalbuminuria can be fixed with Statins or ACE inhibitors, I have seen studies where only 2 in 10 Microalbuminuria sufferers turned to Proteinuria (which leads to end-stage kidney failure) if treated properly. how do I get treatment for Tom? Should this be a Diabetic Clinic thing or approach his GP?.

I have not slept properly for two weeks worrying about this and I need some advice or at least pointed in the right direction. The usual mass of information found on the internet is either too technical or not enough.

I really need some help.

Andy
 
I'm guessing a bit here, but I suspect that there isn't much research about how to treat children / young people with type 1 diabetes and microalbuminuria - studies on adults might not be applicable to younger people. So, it is worth discussing with GP and / or diabetes clinic doctors, but they may not want to recommend an untested treatment. They might need to refer your son to a paediatric nephrologist (doctor who specialises in children with kidney problems).
 
Hi Andy. Really sorry to hear about your worries. What a shock when your son's levels are so good. I wld definitely second the advice to get a referral to a paediatric nephrologist. Spotted you live in Bicester - we're in Buckingham so not a million miles away. My son is 15, diagnosed at 13, doing OK so far but a bit lax about testing these days ... Best wishes, Catherine
 
@Copepod. I am contacting his team today to verify if its a large or small leak, after talking to his mum who was in the last meeting with me we both cant correctly remember if which one it was and one is worlds away from the other. I will then contact his doctor and everyone else who has anything to do with his D control to get this treated.

Catherine. Wow 13.. I bet that was hard for him, At least Tom at 11 was still young enough for that level of acceptance to just get on with it which was a blessing all be it a rather sickening one. I am determined to get the doctors to treat this even if we have to sell the damn house to pay for it. If there is a chance that this can be fixed I will fix it.
It's like the world has been turned upside down again. I've not been able to talk to Tom about it properly yet I cant really talk about it without getting emotional I need to get my head straight and I'm in two minds as to tell him at all, I don't know whether it would have any benefit at all him knowing even though he is adamant that he wants to know everything. We decided last year, when we got a blood test result showing that he had low levels of thyroid hormones, not to tell him until we got the results back from the next one and the doctor just came out with it in front of him and he was really upset with me and his mum for not telling him straight away. Luckily that turned out to be transient and his thyroid is fine.

His mum bless her just trusts anything the doctors say. she is not one to question. she just gets on with the routine. She does not like to make a fuss where as I ask everything and need to know everything, i spend hours learning on the internet about every complication every technology, up and coming studies anything that would make Tom's quality of life better. My wife, Tom's step mum is a great support for me but now I am suffering from not sleeping, I am getting repetitive dreams that happen 3 or 4 times a night I cant remember the last time I slept for more than 2 hours in one go. I don't want to sound like this is about me because its not but my coping mechanism is taking a hammering. I'm not a nervous person and have never suffered from depression but Life is seriously tainted and its constantly in my thoughts... thank god i have a good boss.

Anyway enough ranting... I need to get on the phone... Oh and maybe do some work =O)

Take good care guys. I will update you.

Andy
 
Hi Andy found this link for you http://www.patient.co.uk/doctor/Microalbuminuria.htm
Now you say your son has plenty of exercise please do note the bit that says...
NB: false positive results can occur after heavy exercise or with urinary tract infection.

 
@Pumper_Sue
Awesome, Thank you. Another question for the doctors.
I am going to put this to his GP too and get him involved and force a re-test.
His original test was a sample every morning for three consecutive days at the start of each month for three months. The doctors confirmed to me that this was not under any circumstance a transient leak but reading up on this the 24 hour test is the most reliable so again. thank you
 
Hi Andy, there was an article in the news yesterday concerning kidney tests:

http://uk.reuters.com/article/2012/08/27/us-screening-kidney-idUKBRE87Q15920120827

Note where it says:

Melnikow and the rest of the Task Force said it's unclear how accurate blood and urine tests are at measuring kidney function and how often they come back with false positives - an irregular result for what really is a working kidney.
False positives typically lead to additional testing and can cause healthy people to worry unnecessarily, researchers said.
Click to expand...

I hope you can get some answers for your son, and put your worries to rest very soon 🙂
 
Hello Andy
Just wanted to sympathise over the sleeplessness and worry! My son also has another long term condition (lymphoedema) and when his diabetes diagnosis was made he had a benign tumour in his tibia that was growing very fast too, causing a lot of pain. We were frantic with worry but it did get better, and right now he is doing just fine. Neither my other half nor I slept properly for months but we have both developed coping strategies and live more for the moment I would say! When things are unclear it is most difficult, so I'm sure that when you have some answers things will improve, otherwise anxieties just build up and whizz around in your head, especially at 3am ... I have found listening to the world service (I use the radio on my phone) really helpful, the dulcet tones of the shipping forecast are just the job for filling your head with something else and sending you off!! Have also sent you a pm
Best wishes
Catherine
 
One of my friends started on ace inhibitors for proteinuria nearly 30 years ago. He says it is the only drug, apart from insulin, he has found free from side effects. Over the years the dose has been increased (lower target BPs) and the type changed as more modern versions came out. It is used for children and Great Ormond Street publish a fact sheet - http://www.gosh.nhs.uk/medical-conditions/medicines-information/ace-inhibitors/ What I would say in view of your son?s age he should be referred to a specialist to eliminate any other possible cause. At the end of the day your GP and even the diabetic consultant are only generalists in this area. Good luck ? Steven.
 
Thanks Steven - I will press this with his doctor, his mum and I have spoken in depth and we are now in agreement that we should act on this and get some specialist advice on the matter. Appointments have been made with his care team and with his GP. I will get this referred to a specialist one way or another.

Thanks again
 
Willsmum - Thank you, With a good support network of family and friends and the day to day grind of life I cope in the daylight. Its the nights when I am alone with my thoughts that bite. I will try the radio, that's a good idea. Thank you - will let you know

Andy
 
By chance I saw my friend when I went shopping yesterday. We had a coffee together and I told him about your post. He had a look on his smart phone and said there were a few things I could add. The first is that he was not diagnosed with proteinuria but with ?a torch of protein? in his urine that probably equates to microalbuminuria. He was given some additional advice that probably still applies today: -

i) Drink plenty of water to help keep levels of toxins, etc. in urine low,
ii) Eat normal portions of protein with main meals but do not overload your system with things like 16oz steaks, etc.
iii) Drink alcohol in moderation (he said this would equate to 2 ? 3 units per day now) and not daily. Obviously this does not apply at your son?s age but it will in six/seven years? time.

We talked about the ?touch of protein? and remembered back then Type II was often referred to as a ?touch of diabetes. This was despite seeing Type IIs with quite severe complications at the diabetic clinic.
 
Thanks Steven, Please Thank your friend for me.
I'm with your friend on this. I am sure it must be a small leak or I would assume there would be some treatment offered straight away if it was anything other. I know there are dietary constraints that would help manage this even though when I asked Dr Julie Edge his care team's doctor, she said, there was no proof diets made any difference, which I whole heartedly disbelieve because the US studies show low salt and, as your friend states, low protein constraints help stop the build-up of protein leaking into the urine. We have an appointment to see the doctor again, just his mum and I and have a list of questions we need answered already prepared, diet is on that list. I have had a talk with a private doctor from Southampton who also said the same and said that his dietitian show be able to help here.
Isn't it sad that we as parents have to resort to fact finding on forums and other sources to protect the health of our children instead of having proper useful information fed to us from our doctors.
I am so glad i joined this forum and i wish Tom's mum would do the same.

Andy
 
Good News

Guys, We have confirmed from the study nurse that Tom has only got a small Protein leak and just waiting to here back to what extent exactly, but its below the 300mg making it microalbuminuria... not really a "hurrah" here but its better than we were lead to believe.
Tom will now be monitored at regular intervals throughout the year and if the levels rise treatment regimes can be implemented.
We also have an appointment with the care team dietician to discuss best ways to reduce salt and protein in his diet. (thanks Steven)

Thanks to everyone for their invaluable information and support.
You guys have no idea how much you bolstered me and how much clarity and focus you brought to a seemingly unfathomable situation.
I will always be in your debt. I hope to be a regular contributor to an already excellent forum.

Bless you all.

Andy x
 
Hi Andy,
so pleased to hear your news and glad to hear you are feeling so much happier with that weight off your mind.
 
Really pleased you hear your news Andy, and hope subsequent tests show improvement. If memory serves I've had raised eyebrows over traces of protein in the past which no longer seem to be appearing after control tightened up quite a bit.
 
Hello Andy, glad the news is a bit more reassuring. Best wishes with further investigation too. Catherine
 
Hi Andy,

It sounds like you have some answers at last. Does your son have Annual Bloods done at Clinic as they should be testing urine at the same time? Have you joined CWD (childrenwithdiabetes) email list? It is an email list full of parents of children with Type 1 - we holiday together once a year and help and support each other - it might be worth joining as your son may want to make friends with other Type 1 's his age - I know my son (now 14) found it liberating to be on holiday and for once he was in the majority!🙂Bev
 
Thanks Mike, Catherine, Hobie

@Bev. Tom has annual bloods and now will have urine tests quarterly. I just had a quick peruse at CWD which looks interesting and will sign him up if hes ok with it. He is already via his care team going on trips and excursions with type 1 children of various ages but he didn't go the last time but I think that was a confidence thing. I encourage him to join in with these things as much as possible its all good as far as i can see.
Its his first day at secondary school Wednesday morning so lets see how that one goes. I'm a bit apprehensive but he seems ok with it so all good.

Speak soon guys

Andy
 
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