Alexander's kidneys

As some of you know when i had an ultrasound at 36 weeks they found a small problem with Alexander's kidneys. When he was born they did not review it until he was a month old when he went for his first ultrasound which showed "dilataion if the right ureter with a possiblity of a duplex collecting system".
So after a chat with the paediatrician they said they would then do a MCU scan so poor Alexander had to go through that which showed he had no blockage in his bladder so that was good news.

Had Alex's kidney ultrasound yesterday and it was not good news. His kidneys have got bigger which means some of his urine is back washing into his kidneys. Not sure how much bigger they have got as we did not get all of the results we are waiting for them to call today or next week to let us know.
We only got to talk to a junior Dr so she did not know much about it at all. Have to wait now until 6th October to talk to a paediatrician to see what happens next. The Dr said yesterday Alex will have another ultrasound in 3months also she said it could heal ok on it's own if not they don't like to do anything until they are 4years old. Alex is now back on antibitics so he does not get a bladder infection.

I have so many questions to ask but have to wait to find out. He doesn't seem to be unwell with it all and is growing really well.

Michelle... it's really hard waiting for information, isn't it? Don't be afraid to call the Doctor back if you have further questions. Sometimes we don't hear everything they're saying at the time ](*,)

Perhaps write a list of questions so you can have them in front of you when they call today/tomorrow?

It's great that Alex is such a happy and well little boy. :D

aww Michelle thats so hard! I think Misty has a great idea, write things down so when you talk with them you are prepared. *hugs*

Big hugs Michelle. Glad to hear Alex is doing so well despite the kidney problem though. Let us know how things go when they call you back.

Thinking of you.

Michelle just letting you know that I have you, Alex and your family in my thoughts during this waiting period.

I can tell you that unless something is critically wrong with the kidneys they wont opperate until 4 or 5. With a most childhood kidney conditions the little ones will grow out of them before school age. Most do not cause any discomfort to the kids unless they get a bladder infection.

Alex will be fine. If you need to chat please pm me, I have kidney disease which I have lived with for the past 10 years. I know this is not the same as what you are going through but please remember if the doctors are taking their time getting back to you this is a GOOD thing, as it means they are not overly worried about Alex's condition. While this doesn't help easy your uncertainty or concern at all it is infact a good sign.

Sending you hugs Michelle, hope that all Alex's tests come back fine & you get good news from the Dr when you go to see them.

Michelle, does Alex have renal reflux? I have been through this with Emma and although it was a long time ago I have had to do checks with my other two as well.

In the 12 months Emma had renal reflux she had 4 MCU scans and 5 kidney ultrasounds. She was on low dose antibiotics for 12 months also. Emma wasn't diagnosed until she was 9 months old and had 2 urinary tract infections in 3 weeks. So much fun, NOT!!! After the second diagnosis we were asked alsorts of questions pertaining to possible sexual abuse because it is one of the signs they look for in very small children. Anyway once we got them off our case about that we finally were sent for the ultrasound and MCU. Emma had a grade 2 reflux on the right and grade one reflux on the left. She had her final ultrasound the same time I went for my 18 week scan while pregnant with Jack. So the day we found out she had out grown it, I found out I was having a boy!!!!

Good luck and if you have any questions feel free to ask away.

Cheers

Thanks everyone for you hugs.

Kerry - I may just take you up on that chat if i don't get to find out more soon.

Kelly - Thank you for telling me Emma's story it is nice to hear from someone that has been through the same thing. Not sure at this stage what they are calling Alexander's condition as we have not spoke to a paeditrcian since his first ultrasound back in June and because the MCU scan came back normal they did not want to see us after that scan.

Got a call from the hospital yesterday we do need to keep our appt next month and talk to the Dr he is away on holidays until next month that's why the long wait. They did want to cancel Alex's appt Thursday but they got us in on the ward as it needed to be checked. I got his kidneys sizes from both scans June scan left kidney 5.0 right kidney 5.2 Thursdays scan left kidney 6.0 right kidney 5.9. Not sure how much a babies kidney grows anyway.

Michelle, so sorry to hear you got bad news, poor little Alex. It's so hard waiting isn't it? That's all we seemed to do when Jonah was in hospital, it sucks that they can't do things quicker. Please know that I will be thinking of you and Alex and waiting for your updates.

Take care :hug:

HUgs to you Michelle, the waiting is hard, esp when you are unsure how things are supposed to be normally. Sounds like this isn't something uncommon, so hopefully things are on the good side for Alex.

cheers michelle

We are finally seeing the paediatrician on Thursday so hopefully we will know more.

Good luck on Thursday Michelle, I`ll be thinking of you and [-o< that all is ok with Alex

Thinking of you for Thursday Michelle, hope you get good news.

Goodluck for Thursday Michelle...

Thanks everyone for the goodluck.

I now just have to remember what i need to ask and take a form in for the Dr to fill out.

Good luck for Thursday, will be thinking of you and waiting for the news :D

Good luck Michelle, hope the news is good!

Cheers michelle

Best wishes to you for tomorrow Michelle.

Here are some tips:

1. sit down tonight with DH and write a list of all the things you want to ask the doctors and put it straight into you purse/nappy bag so you can't forget it.

2. If the doctor doesn't answer you question so that you understand him/her ask it again.. If you need to say "I don't understand what you mean" (it is part of a doctors job to educate their patients so that they can make informed decisions and give informed consent. Some really bad looser doctors will make you feel silly if you can't understand their answers... don't be afraid to remind them you have not spent x amount of years at med school, a lot of these terms and words are new to you and might as well be in another language and that you just NEED (not want) to understand).

3. Don't leave without answers you understand.

I have learnt the hard way what happens when you walk out of a specialist not really understanding or knowing and can only imagine how much worse it would be to walk out not knowing when it involves the health of your child.

Again all the best for tomorrow and positive vibes galore for you, Dh and Alex.

Good luck for tomorrow, Michelle.

Good luck for tomorrow Michelle.

Hope it goes well today, Michelle. Good luck!

Popped in with the hope of an update... just remember that everything has a positive even if we can't always see it at the time, not that you will have a problem. Remember we are all here for you if you need.

We are now home after waiting ages to be seen.

We have some good news Alexander's kidneys are ok it's the tubes coming from the kidneys that have the problem but it's only mild which could be normal for him. He doesn't need another ultrasound until he is 12months old. He can also come off his antibiotics i just have to watch that he doesn't get an urine infection as soon as i think he has he needs his urine tested so they can find out what kind of infection it is and they can keep a note of how many times he gets the infection. Fingers crossed he doesn't get an urine infection.

Yay Michelle, that must be a big relief for you... :)

That must be such a relief for you guys :D

Great news Michelle, here's hoping the UTI's stay away.

I am so happy for you and your family Michelle.

Tip for the UTI prevention... keep the fluids up, especially water and Cranberry juice is brilliant too. Especially if the poor little dear does happen to get a uti but it is also a good preventor.

That is good news Michelle, here's hoping it stays that way.

That's great Michelle, wonderful news. O:)

Woo Hoo Michelle that really is great news!

It is great to know Alex is ok and only has a small problem just hope ot doesn't get worse.

Fletch - I have to watch that Alex doesn't get a fever, smelly urine, has trouble going to toilet, stops feeding well and is just very unwell.

It's going to be hard to workout if he has a UTI or not but i always have to get his urine tested just to be safe that it's not one.
Really don't know how i am going to get him to wee in a jar.

Thanks for that Jillian i remember them putting one on Kimberley when she was in hospital.
I will get some today when we are out just in case.

Just a quick update Alex had a kidney ultrasound a few weeks ago which went okay he still has a problem with one of his kidneys but as long as he has no urine infections things will be okay. Not sure when they will want us to go back for another but i am just so pleased that he hasn't got worse over the last few months.

That's so great to hear. Hope things continue to be good :D

Michelle good to see Alex is going well. Hooray for his results!

Great news Michelle!

Alex is booked in to see a new peaditrican on 27th April to see what follow up they want to do. Also to talk about his lactose.