Kidney Disease

[SwanLake]

Hi All

Just messaging to let it all out - not a lot anyone can do.

DD who is 6 has numerous intolerances and a couple of months back started to have runny poo and blood in her poo. This then became double incontinence.

She was seen by our drs who sent her as an urgent case to the paeds at the local hospital who took some blood and we've since had the results back that she has also now developed an allergy - she goes back to hospital on 5th Dec to start the exclusion process to find out what it is. In the meantime she's been put on meds to try and assist with the double incontinence and has ended up back in pull ups.

Today I got a phone call from the school to advise she had started bleeding from her bottom again and could I take her back to the Dr. She has tonight seen the Dr who having spoken to her specialist have doubled her meds in the short term until the 5th Dec when she goes back and after testing her urine found it to contain blood and protein. Dr's are now concerned that she may also have some form of kidney disease so that also needs looking into.

They have allowed her home for tonight to be monitored until 5th Dec but if she deteriorates in the meantime then she is to go straight in. They have said as well they are looking at having to knock her out to put cameras in her to check for Chrons disease and IBD's. Feel so sorry for her as she is only 6 - wish I could take it all away for her. She however is taking it all in her stride and is still smiling xx

Swan xx

[Rubybubbles]

She's a tough cookie my lovely. Sorry to hear its getting worse poor mite give her a huge hug from me x

Hopefully they will get answers soon

[SwanLake]

She's a tough cookie my lovely. Sorry to hear its getting worse poor mite give her a huge hug from me x

Hopefully they will get answers soon

It just seems like if its not one thing with her, its another. She misses you lots!! Hopefully we'll get some answers soon. Doesn't help his lordship being away as well at present and baby trying to come early xx

[SYLVIA]

How awful for her, and you. She sounds like a very strong young lady. Hugs to you all

[sing-low]

Oh no! What a dreadful situation for you all. I hate it when there's anything wrong with my kids - would far rather I had to go through stuff like that, than them. :group hug:

[loocyloo]

Big hugs.

Thinking of you

Xxx

[Essbops]

So so sorry to hear, I hope she picks up soon xx

[smurfette]

Hugs for uou both xx

[angeldelight]

So sorry to hear that

My grandson had the same sort of problems and recently spent two weeks in hospital

He's only got one kidney so it was a stressful time

He has just turned 5

So I understand a little of what your going through its horrible and upsetting

Hope she is ok and things improve for her

Keep us posted

Hugs to you all

Angel xxx

[shortstuff]

Just wanted to send hugs and let you know we are all here to read when you vent x

As parents we would all rather it was us that was going through it. Stay strong x it will all come good in the end im sure x

it sounds like your little lady is a tough one who can fight whatever is thrown at her n with a parent like you by her side im sure youll all be ok x

[sarah707]

Oh I am so sorry for your daughter and you and your family must be under so much stress :(

Sending love and prayers xx

[clareelizabeth1]

Hugs for you and your DD. Sounds like she is being really brave. Hope you get answers soon.

[MessybutHappy]

Big hugs, I hope they quickly work out what's going on and can help her, it sounds like your handling this on your own, so I hope you have practical local support too? Make sure you take care of yourself!

[SwanLake]

Thanks all - the update is she is still no better. Still constantly wetting herself, but not being aware of it, going through 3 pairs (at least) of pull ups a night, with waking to go to the toilet as well and so far today we are on clothing set number 4. She is totally unaware she is having accidents and her teacher (who didn't really believe what was happening) after seeing her have accidents everyday last week more than once and have her in tears cos she was 'bleeding' from her bottom finally believes there is something really wrong. She is not drinking anymore than usual so have no idea where all this extra urine is coming from. She's given another urine sample which is still showing blood and our Dr has spoken to the consultant at the hospital who is happy to wait until the 5th see her - I'm just hoping we might move forward after the 5th.

Because she is so unaware she is not bothered and all her little friends have been really good about taking her to a teacher to get changed if she's had an accident and not making fun of her - which was a big worry for me.

Thankfully her dad is home on Friday evening after 3 weeks away (typical military life) so there will be a bit of support there. I know part of it is probably the fact we are only a few weeks off having a baby and she has already asked the question of if we will still love her when the baby gets here - she has been included in helping sort things for the baby etc so she doesn't feel excluded but that aside, that cannot make her urine have blood in it.

xx

[Tulip]

Gosh you have got a lot to deal with and what a huge worry, sending hugs x
What super little friends she has got!

[hectors house]

How worrying for you trying to reasure your daughter, being pregnant, carry on working and being made to wait until the 5th, surely the consultants must realise how distressing this is for you all. A friends daughter is currently being tested for Crohn's disease (she is 17) and on lots of pain killers for another condition, they fear though that the symptoms she has now that they blamed on pain killer side effects may actually be kidney failure caused by the Crohns not being diagnosed quickly enough.

[SwanLake]

How worrying for you trying to reasure your daughter, being pregnant, carry on working and being made to wait until the 5th, surely the consultants must realise how distressing this is for you all. A friends daughter is currently being tested for Crohn's disease (she is 17) and on lots of pain killers for another condition, they fear though that the symptoms she has now that they blamed on pain killer side effects may actually be kidney failure caused by the Crohns not being diagnosed quickly enough.

Chrons disease is a real possibility with our little girl - IBD's do run in my family so I wouldn't be surprised but the hospital are in no rush although they have said that both this and coealic disease are strong contenders for what could be wrong. Because we can't get the same consultant until the 5th and he knows all her history they are happy to wait, unless she gets really ill. In herself she is fine - if you exclude all the accidents, to look at her you would not say anything was wrong. However she has only put on less than 4 kg's in 3 years. She weighed 17.6kgs when she was 3.5 and now she is 6.5 she weighs 21 kgs and is like a string bean - she eats all the time though! I've only got a few more weeks of work during the day of my little ones and then a few weeks of after schoolies only for a couple of days a week and then some time off for the baby. I really want to change what my daughter eats and follow a strict chrons type or coealic type diet but the hospital have asked us not to as it would give false readings on any tests they want to do from the 5th onwards so until then its all going to keep happening. Our Dr has been really great and is seeing our daughter within minutes of me calling to keep an eye on her, but we all know how consultants can be. Thankfully in just over a week she is being seen. I hope you're friends daughter is ok, it must be a very worrying time for them all. xx

[SwanLake]

Well back to the Dr's this morning with DD as something was not right - urine sample given, more blood in it. Fax sent straight to her consultant. Her glands are up in various places now as well yet the urine they sent before came back negative for infection by bugs as nothing grew on it (or as the Dr said, it did grow a little bit but not enough to be a conclusive answer). Dr has said she may continue how she is or she may start to go downhill now - its a case of keep an eye on her. Can't say if her glands up are related or not as we have no idea what is wrong with her. Yet again she seems well in herself and wanted to go to school. We have sent her but have seen the head who knows what is going on and she is to come straight home should there be any concern. Roll on 5th Dec. x

[cupcakencookie]

What an awful situation to be in. I do hope you get the answers you need on the 5th Dec and that your little girl is soon better. Will be thinking of you xx

[Maza]

Oh bless you. I wish I could give you a big hug. Sending you lots of love and strength. Roll on the 5th. xxx

[smurfette]

Hugs to you hope she is bit better today and 5th comes quickly and you get some answers xx

[Maza]

Hope all went well on the 5th. xxx