when it's not nappy rash...

=(
Spock has had what I thought was a bad nappy rash. She has had it for a while, since the start of the year possible a few weeks before... I honestly thought it was just nappy rash, but I guess being a first time mum I realise I don't actually know what nappy rash looks like. So I probably did leave it a little longer than I should have...but that wouldn't have made a difference anyway.

So the first thing I did was use moo goo cream, using mcn I couldn't use anything too harsh. (I did use a bit of bepathenan though.)
i then did the right thing and went to the dr, but all she did was put Spock on oral antibiotics, which made her bum so much worse cause she was doing shocking poos. I lost my faith then in the gp and turned more seriously to my other mcn mums in person and here on bb. I managed to pick up some liners which meant I could really attack this rash. So I tried zinc cream (2 different brands), zinc powder, neither made any difference at all. so went to the chemist who gave me anti fungal cream. tried that, once again didn't make a difference at all. the rash remained exactly the same. So I went back to the chemist who actually looked at it this time and said, yep, deff not fungal, and recommended I go back to the doctor. So I bit the bullet and went back to the dr, she was the same one, I told her everything I had tried and she said, it is just macerated skin not healing, and prescribed me some 'special' nappy rash cream, she also agreed it wasn't fungal. and explained to use this ointment, and zinc cream on top. I went back to the chemist who had to order it in, so I returned the next day. the pharmacist (who is awesome), came and spoke to me in a very serious manner. He asked me if the dr knew what I had tried before etc.. I said yes, he went, well this is what she prescribed you... and it was the exact same anti fungal I had tried earlier just with zinc cream mixed in!!! The pharmacist looked lost as to what to do and explained he isn't allowed to do what he is going to do, but gave me some antibiotic ointment to try (because it was prescription only). I thanked him insanely for helping me out when the dr was once again useless!!
but it didn't do anything either!! nothing was making any difference =(. it didn't seem to be bothering her at all though, but it does bleed.
So I showed it to her MACH nurse when she came to give Spock her 12 month check last week. she looked concerned. and recommended a gp 2 towns away who had done extra study in skin conditions.
So today we went and saw him. (and it wasn't just extra study, he actually had a bachelor of dermatology). he had a look at her and was also concerned...
he said he has never seen anything like that, that he isn't sure, he said it doesn't fit into categories such as eczema, siriosis, etc... (listed about 5 things). he said the closest thing is warts. and even then he doesn't think it is, that is just the only thing it MIGHT be. He said in an adult it is the type of skin lesion you would get a biopsy of. But her being a 12 month old, that isn't something they would normally put her through....he then said IF it is warts, the normal treatment for that is burning them off! once again something you don't do to a 12mth old, esp. of her labia.
=*(
He has given me a referral for a dermatologist (which is good) so I rang up to make an appointment when we got home. the gp said try and get in this month cause he is worried about it. So I talk to the receptionist who says, if it is classed as 'urgent' the gp has to make the appointment. and they are fully booked out, so i said, well can I make a normal appointment and hopefully get one sooner when the gp contacts them. but she wouldn't make me an appointment! she just kept saying, fully booked. she did mention august, but still wouldn't make me an appointment for then because it was 'too far in advance'!!
so i called the gp back and spoke to that receptionist to pass a message to the gp to tell him i couldn't get an appointment hoping he could do something from his end.. but im not confident the message will be passed on because she even said, 'if i remember' =(

I'm going to try again tomorrow (even the dermatologist, cause that was bull****). but yea, feeling very failed mummy here and down...

How frustrating for you!! Hope you can get an appointment

Does your gp practice have an email address, or can you fax it? Or take in a note addressed to him/her?

It is really hard to think something might be up with our little ones, especially if things aren't bothering them.

I know easier said than done, but don't beat yourself up.. I am sure a lot of Mum's have missed things.. I didn't realise my DD had pneumonia just before she turned 3. DH took her to the dr cause she spiked a temp 2 days in a row with no apparent reason, and the fact it was a long weekend so thought we better take her then, rather than emergency after hrs dr over the weekend. Felt pretty low as well..

poor baby. just wondering if you have tried using disposables for awhile?

I don't know dmb, because he wasn't my normal gp. when I ring again tomorrow I will ask.
it wouldn't make a difference hoti because its not and infection itms. I did ask the dr that.

:( :hug: hun. So not your fault. What a hopeless doctor, and I cant believe the response from the dermatologists receptionist! I hope tomorrow brings you more luck.

ok, I called the gp back, receptionist said there is another dermatologist who works in the same building and gave me his name to see if he was avaliable, if not then we would have to search for one in another town an hour away...
so I called back the dermatologist, and talked to a different chick (yay!) who did comfirm thst yes she was booked til aug (other dude was booked til oct!) and wasn't taking any after then, but can pit me on the waiting list! so started taking Spocks details, including her dob when she said oh she is so young, I said yep. then she asked what the problem was 'is it just bad skin?'. I said 'she has a lesion on her labia no one has been able to identify'. the reception then goes oh...hang on a minute im just going to check something for you, I was then on hold for a mini and the amazing really nice receptioist came back and said, we have an appointment tomorrow afternoon at 4pm!!! I am so so thankful!
I googled images of genital warts and skin lesions and normal nappy rashes and everthing last night and nothing was even close.
I was so upset last night after realising how serious it is and being stuck and not able to get it checked out. I am so glad that chick was working today and helped me out.

I would seriously swap to disposables. The urine on her skin could be making it worse. Ds couldn't tolerate MCN at all and dd did have some terrible reactions to certain ones.

I would lather her bum in Sudocreme as a barrier and put her in disposables until you can get into the dr. Even better, try just no nappy at all, and try some elimination communication.

You poor thing. It's so stressful when your angel isn't well. Good luck.

I just wanted to add, maybe get some baby biotics or similar for her. Even if it's warts (which doesnt sound likely) or fungal, its an immune related thing. A boost to her immune system may be additional help to whatever is diagnosed/treated. The only thing that cleared up my bubba's stubborn nappy rash was Daktozin which is a combo of zinc and anti-fungal - and it worked fast. Coconut oil is good as well, but more a preventative now that you need a treatment too. Good luck, must be worrying for you x

Really glad you got an appointment tomorrow!! You did heaps to sort it out and get her seen to, so don't beat yourself up :hug: I hope they can sort it out ASAP for her.

Awesome news on the appointment, I hope you get an answer tomorrow.

Oh my god, what an odyssey! Good luck with your appointment tomorrow - I hope that the outcome is workable and positive. :hug:

Oh poor darling little Spock! And poor you - don't beat yourself up, you weren't to know! Do you remember my ordeal with DD's mouth? I was slathering her lips/mouth in a cream only to find out that she was allergic to it :( We all have these moments.

And you know what - you showed that to us, her rash, and none of us thought it looked serious enough to warrant an emergency trip to the dermatologist. :hug:

I hope the appointment goes well tomorrow - keep us posted.

(I was going to type this last night, but I ended up in bed with a fever...so I hope I do remember it all..)

But we saw the dermatologist yesterday afternoon. We sat down (and by we I mean I did...Spock was running around and climbing on everything and pulling out specimen tubs and sunscreen samples...and everything else she could get her hands on) and I went through the story with chick derma (as she will be refered as), she then said, lets have a look (and later told me she already had an idea in her head what it would be). so I caught Spock and put her on the bed and showed her. and she paused and goes "oh, so not what I thought it was, hmmm" she then calls in the other derma (known as dude derma =P) and they both have a look, throw a few ideas around, looke in some text books, ask some questions etc... chick derma took photos.
They think it might be something called Granuloma Gluteale Infantum. But that is caused by steroids (mainly topical), and Spock has never had steroids, so they were a bit stumped...and when checking up the treatment, it was 'stop the steroids and it will clear up'. so they weren't sure. They took some swabs to see if there was an underlying infection that was maybe too deep for the treatment I had tried.
so game plan is, for me to use a different brand of anti fungal cream. dude derma told me to change to disposables, chick derma said it wouldn't make a difference, because I did have Spock nappy free over summer, so really if it was the nappies we should have seen some change. and if it was an allergy to the nappies or washing etc... it would be more spread.) but dude derma said just try, that way we know for sure there isn't reinfection etc... so I agreed to buy ONE box, and no more =P (it sounds really crazy and stupid but this has gotten me the most upset...) chick derma will also send photos to peadiatric dermatologists in Sydney and Melbourne. and I am to call back in a week. by then she will know if someone else has an idea, we will have the result from the swab, and see if there is any change with the different brand cream.
after all that the next step is a biopsy =( and she told me to start thinking if we can do it with just a local anethestic, or put her under a GA =*(. my poor girl.
The only good thing is that they are sure it isn't immune. because she is such a happy healthy active thriving thing. they were amazed she only turned 1 last week and was running and climbing etc... they said if it was an immune thing she would be sick.
They gave me information on GGI, the photos don't look anything like it... and all the information says that there have only been 30 cases reported worldwide! this is my first time on the computer so i haven't had a chance to look into it more.

and you know what really has me down and depressed...her pants keep falling down cause there is no cute fluffy bum to hold them up =**(

Holy cow, thats one bizarre case hey. If anything, you should feel PROUD of your efforts - you have done a superhuman effort trying to get to the bottom of this. Where I live there are a significant number of commission homes and some days I just feel sad seeing and hearing what I do. Gosh, if only every one of those children had a mummy like you, I might like living here. Give yourself a huge pat on the back mummy. You'll get to the bottom of it and she knows you love her to death. Go easy on yourself, okay? x

My friend is going through something very similar at the moment with her dd although she's slightly further along the road to answers hopefully.
It started as what she thought was nappy rash also but it got so much worse, eventually turning into huge deep welts and lumps. She tried all the things you've tried also, been to about 5 doctors, 2 pediatricians and now a dermatologist. Basically they think possibly herpes virus or warts that has also gone on to become infected. She was admitted to hospital to access hospital only prescribed anti biotics and antivirals. It didn't seem to clear very quickly but that and using sposies for the time being has healed them over finally.

If you want to pm me I can send you her email address if you like? She's lovely and will be more than happy to help with suggestions and give more detail on her journey.

=*****(
currently in tears.... I was looking forward to today so much, today was the day I would get to talk to the dermatologist again and discuss our next step. I had so much hope in the phone call...and it was a load of ****!
so she asked how it was on my end. I have been doing disposibles (yuck - sorry but i do really hate them...) for the week with a specific brand of thrush cream. and haven't seen any difference. I told her this and she goes, ok, so our next step is to send the photos on, I go, I thought you already did that, she goes no because we thought we had a diagnosis so wanted to see if that was right or not. (while im thinking, well you don't know what it is, the only thing for me to do was use a different brand of what i was already doing). and she was saying bye, and i interrupted her and said, did the swab come back, and she goes yea that didn't tell us anything, I go 'so its not thrush' and she goes, well even though I put ?canddia on the fourm they didn't test for it.' I'm like...right... she didn't seem bothered by it and said she will get back to me when she hears from the photos. I go 'so what am i meant to do?' she goes, just keep doing what you are doing.

and that was it. nothing, was a waste of a week, where she didn't do anything. I'm so upset and angry. it's like no one cares my girl has this thing on her vagina! =( I don't know what to do next. all I have atm is to hopefully expect a phone call 'at some point' (could be tomorrow could be in another 6 months could be never) and that is it.

=*(

I've just read through the post. TT40 that is really terrible treatment. I can understand how your upset. You want answers, help and things to be better for your baby. Can you keep the pressure on them and keep calling them so you get the phone call earlier? Big hugs

How awful and frustrating for you! I agree with Rosey, be a pest until you get some answers!

That is crap! I hope they pick up their game. What was the point of the photos if they thought they had a diagnosis? Sounds like an oops we forgot thing to me :wall:

Hug. :hug:
Sadly, that is the kind of medical care I have come to expect.
I would ask if maybe it might be dietary/ allergy related. I say this because all my kids have allergies an intolerances (we are still on waiting lists for the specialists to find out what for specifically) and they present with skin rashes that are completely untreatable. Chantelle currently has it on her cheeks, but also gets it as a nappy rash too. But it isn't a real nappy rash, it is when whatever she is reacting to is touching her skin on the way out. We have no idea what is causing it. We do know it is from some kind of allergy / intolerance though. And because my kids seem to react to 'basic' foods, an each of them different foods trying an elimination diet for them is all but impossible (ir, Nate cannt have more then a tiny bit of dairy, only certain types of bread, only one peice of fruit a day, etc; whereas Angel can eat all of that stuff but cannt have cheap tomato sauce (only Heinz in small quantities) and no other sauces - we believe her problem is a specific preservative, but no idea which one).

One thing we find with Chantelles nappy rash is that it is usually best to avoid the anti fungal creams and zinc and barrier creams, and just use savlon antisceptic (to prevent infection of the sores) until her body has a chance to sort itself out. Don't use the other types of anticeptic cream though, they sting.

thanks girls. I think I will ring them to keep them on it.
thanks Misty, I thought allergy but not food. and yea im going to stop everything now cream wise. none of them were doing anything anyway.

the other thing I thought of is maybe it is a bite... but no idea how you work that out

also my dad said maybe if they aren't stressed it might mean everything is ok...

Hopefully your dad is right :)

Oh wow, that is not cool :( Sounds like a bit of runaround. Does it seem to bother her, when she's nappy-free?

Does the idea of something in her wee burning the area sound plausible? Both mine have had bad skin reactions on their bottoms when I eat certain foods and breastfeed. For ds it was thrush when I ate wheat or sugar and dd it was any amount of chili which would cause acid poos. They were in the bum cheeks though and obviously related to poo. Just thinking if it could be something in her wee? Do you take any medications or vitamins and breastfeed?

I'm sorry you haven't received the treatment you and your dd deserve.

thing is how would we narrow it down? cause it has been there for so long, not improved, not gotten significantly worse either, how would I even start to work out what food? cause it would be something we have all the time

How frustrating. And disappointing.

I don't honestly think its's food - it wouldn't be so localised and long term. Hope you're able to ditch the sposies!

already got a friend who has a girl a day older than Spock who I'm giving the rest of the box to =)

Has there been a blood test done? That could point out any allergies or underlying infections? Poor bubba.

no no blood test... I thought that and a biopsy was where we were headed next. because I thought the last week would be everything non invasive getting done first eg showing phoyos to other specilists and swab results etc... because we did both agree we want to do everything possible to avoid invasive things like biopsy etc. . but in saying that if thst is what neefs to happen to get answers....we will do it

As much as a blood test freaks you out and isn't pleasant it's over pretty quickly and at least you could have some answers. A regular gp could arrange that. My dd2 had a blood test at 12 months and one at 4 years. The older she was the worse her response was . :-(

yea. im not sure where to go to from here. but might take her back to gp next week. does anyone know what tests to ask for?

The gp will know. I think ours was a full blood count and a RAST which is an allergy test. There was probably something else too but can't remember.

TT40, what an ordeal for you both! Good on you for persevering. It's not easy, I know. If you don't get any joy from the dermatologists, you could consider asking your GP for a referral to a paediatric immunologist, as they will have a raft of different experience and might have new avenues to explore.

I agree, if the dermo's aren't doing it for you, I'd get ref to a paed. Even if you have to wait, it'd feel better to be working towards *something*. So sorry for you and your girl. What a stressful time. Glad it doesn't make her uncomfortable though. That's a positive.

so I had a voice mail from the dermatologist from last night!! (my phone was out of action for 24hrs due to an intimate encounter with the bathtub...)
so all she she was she is touching base re Spocks rash. and she will just send me the scripts and information in the mail.
no idea what but sounds promising!!

FX for you. :)

Sounds positive!

thpught I would update.
so they think it is just really bad nsppy rash... a thing called jaquards erosive diaper disorder. which the derm said is a more severe form of gii (what they originally thought).
she has given me steroid cream to try.
Spock has started playing with it and jer vagina. I don't know if it is just her normsl exploring her body or it is bothering her.
What age did your girls start discovering their vaginas?