Totally Fed Up & Feeling Down

ZLS23 · Nov 25, 2011 2:43PM

Well, another wasted trip to the doctors about Jazmine's birthmark!! He just said try another week of antibiotics. She has been on them, orally, for 3 weeks now!! No one seems to want to do anything about it! She is 16w tomorrow and I'm really not happy giving her drugs at this age and for so long!!

I understand that our doctor is not a specialist in birthmarks, and we are STILL awaiting a letter to see a specialist/dermatologist, but it just takes forever! We have tried chasing it up, but just get told "we are in the system and will hear soon!"

We found out how much it would be to go private, at least ??200, and that's just for a consultation!! We just don't have that sort of money.

We keep getting different views on it. When we were admitted to hospital with her a few weeks back, one doc said it will go by age 3, one said by age 5, doc today said by age 1!! So nobody really knows!! All anyone keeps saying is that it is quite big!! Yeah we know!!!!!!!! We see it every day!!!!!

Its getting to the stage where she is touching it (its on the top of her head), it still weeps at night and dries out throughout the day. We have been advised to keep it dry, which we are doing. I can't keep putting hats on her and every picture I take I cut the top of her head off as I hate seeing it.

I appreciate that we are probably more bothered by it than she is, but if there is an option to lazer it or have it removed, that's what we want to do.

I'm nearly in tears typing this as I'm so fed up with it all, all the waiting around and when I look at her, it just saddens me to see that she has this big lump on her head, which is scabby, smells and looks awful.

We have now had to take the head support thing out of her car seat as it rubs on the top of her head!!

Why is nothing ever straightforward!!!???

Zxx

PS sorry for the rant ...

Emz1108 · Nov 3, 2011 2:53PM

Don't apologise for the rant- we all rant over things and most of them much more minor than your issue... I can imagine its awful for you and the waiting for an appt seems wrong in one so young. A bit of advice I would give is that I have recently had quite serious health problems myself and was told the NHS wait for a specialist would be 3 months which my OH and I (and my Mum!) felt was too long, I get on really well with my dr and have known him a long time he advised me that I could always go for just the initial consultation private (I acknowledge ??200 is alot but it does jump the queue) and then once you have had the appt you can request to be put back into their care on the NHS. The joy of it is that if they deem it serious enough they will have no problem doing this, my specialist assumed this is what I would be doing and had no issue as I was self funding and he acknowledged the severity of the situation. I am now schedualed for regular appts with the same consultant at the same regularity that I would be privately. It is worth considering if you do not feel you are getting anywhere.

I really am sorry to hear its so tough for you... one good thing for your little Jaz is that as its on the top of her head wont her hair growing cover it? I think you need to take action into your own hands esp with the whole antibiotics thing. If you want any advice on how to go about it you can always message me, big virtual hug coming at you and Jazzie XXX

roo85 · Nov 4, 2011 4:09PM

hi, so sorry you are feeling so blue. I wish I had some useful words of wisdom but I have no advice. Sorry. I just didn't want to read and not comment, I hope you have lots of family and friends support. Keep hounding the Dr's as she is your precious little angel and you are only doing what any caring mummy would do.

All I can say is (and this isn't probably useful) that my DD had a strawberry neevus (no idea how to spell that but it is a kind of birth mark) on her leg which was very red and bumpy and grew bigger and bigger up until she turned about 9 months then it got smaller and smalller, and lighter until now it is a tiny scar tissue type birth mark, barely noticable.

Hopefully your little girls one will get smaller/lighter and sort itself out as she gets older, and her hair will cover it so int he future it won't even be noticable.

Hopefully you'll get to see a specialist dermatologist soon. Big cyber hugs xxxxx

ZLS23 · Nov 5, 2011 7:02AM

Thanks for your kind words and advice ladies, means a lot.

On a happier note, for the last 2 nights Jazzie has slept straight through and missed out the 2am feed! Yay. So she's gone from 7.45pm to 6am. Soooo happy, long may it continue and I hope I haven't spoken too soon!!

Zxx

roo85 · Nov 5, 2011 3:40PM

hey, glad you're feeling more positive. Hope it all gets sorted soon and you get more reassurance from your dr.

wow to the sleeping! Finley is now on formula and he is so much mroe settled with it. He eats regularly and is starting to sleep longer and longer each night. He now only wakes once at about 2-3am for a feed and sleeps till morning (6pm - 6am). I am hoping he'll drop that middle of the night feed soon enough, maybe when he starts weaning - only a month or so to go! amazing!

xx

piggypops · Nov 5, 2011 4:23PM

yay on the sleeping through! you lucky mummy!

mb78 · Nov 10, 2011 8:16AM

Hi

I'm sorry to read you have been having such a tough time with your little one, it's good you have somewhere like this to have a little rant! We are good listeners (well readers!)

How is she getting on now? Have you managed to get to see the dermatologist?

Excellent news about her sleeping through the night tho - she is such a cutie I loved your picture of her with the Christmas hat on - can't wait for this Christmas!!!! I know they won't know much about it at this age but still soooo exciting and not long now!

ZLS23 · Nov 10, 2011 10:07AM

Hi mb78

Thanks for your kind words.

We saw the specialist/dermatologist yesterday. We now have some ointment to apply directly to it twice a day. We have finished the antibiotics and we are going back in 2w to see him again and there will be other consultants/specialists in on the meeting. We will then all discuss the options available to us.

I finally feel we are getting somewhere!!

Love Z xx

mb78 · Nov 11, 2011 4:27AM

I'm so pleased things are moving on for you. I hope you manage to sort it out for little Jazmine! x

Emz1108 · Nov 11, 2011 9:21AM

So pleased things are improving- sounds to me like you deserve some good fortune- big virtual hugs to you and little Jazmine X

MissusG · Nov 19, 2011 3:08PM

Hey Z!

Glad to have found that you're feeling more positive at the end of this thread.

How is the topical treatment working? Hope it's getting better.

Hugs to you and Jazzie.

xx

ZLS23 · Nov 23, 2011 11:58AM

Hi all

We go back to hospital tomorrow re Jazmine's birthmark.

The ointment seems to be working in that the scab has fallen off and although it is unsightly still, it does look "healthy" (if a birthmark can look healthy!).

I have a funny feeling because it pretty much looks ok and I don't think its infected anymore, they are going to leave well alone!!

Maybe I should have kept the scab and stuck it back on!

Zxx

ZLS23 · Nov 25, 2011 2:43PM

Just a quick update, we have now been referred to Great Ormond Street with Jazmine, should get an appt come through for early next year. They are specialists there so will be good to get a second opinion.

Zx

Totally Fed Up & Feeling Down

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