The medicines did seem to help Ben, and the penicilin v that he is on now i think probably does help.  Luckily he has no problem taking medicine as he is so used to it.  I actually think it must be really tasty, as he always asks for it at breakfast and bedtime when he has it, and i have caught him just in time taking a swig from the bottle out of the fridge in the middle of the day.  Said he was thirsty.  Have had to put it on a higher shelf.  I do worry if it is sugary, and affect on teeth, but dentist said his teeth are fine.  Also wanted to say when it comes to wrapping them in cotton wool that is just so normal i think in the circumstance. when Ben was first out of hosp after his bone marrow, i would screen everyone before they set foot in the house as to if they had been coughing or if they had been near infections.  People who knew, understood, but those who didnt probably thought i was nuts.  I worried alot about what bugs my dd would bring back from pre school.  The pre school were very good and let me know if there was outbreaks of anything like alot of vomiting and diarhea, and we could make the decision whether to send dd. 

Hi Anita, huge hug to you and Ben, it must of been so traumatic for you all and im so pleased to hear that he is in good health now, im so glad for this original post because although all the situations from all the posters are so different its good to talk to people who are going through long term situations, its great to know that we can all talk about these things and maybe swap advice and give each other some support.

Nij, My brother was on longterm antibiots (probably  late 1970's)and his second set of teeth were grey, he had them capped eventually at about 21.)  I panicked like mad about that with ds beacuse of that but I took him to the dentist who assured me that he would be fine and although his teeth could go discoloured (more yellowey) whilst he was taking the antibiots it was more superficial these days and they can be cleaned and that it doesnt affect their next set of teeth which long term antibiots did in the 'old' days, I hope that is true its not something I have looked into yet  (i.e trawled through the internet lol) but at the moment the words of the dentist are a comfort.

Hi, i just thought i`d post as i feel i`ve been through something similar.  My ds was born with a condition called s.c.i.d, which basically means he was missing near enough all the cells that make an immune system.  s.c.i.d is one of the most severe immune deficiencies, and only affects about 1 in 100,000.  Our local hospital let us down BIG TIME.  He was admitted 7 times in his 1st year with pretty serious infections like pneumonias.  We asked several times if it was an immune problem and told no.  Was only when at 1 year, he was fighting for his life and transferred to another hospital that he was diagnosed.  He had to live in a bubble (special air filtered room)  We had to scrub up and wear an apron before entering the room.  Anyway he is  now in top health.  He had a bone marrow transplant last year, without which he wouldnt be here now, and has made a great recovery.  But as soon as he has the slightest cough i am thinking the worst.  I was wondering if your dd has been put on any prventitive medicines as she is more at risk of infections.  Ben was on alot of these.  I think they were called profolactive  drugs.  Ben was taking medicines called septrin and aciclovir, and others with names i`ve forgotten.  He also had regular i.v infusions of immunoglobulins, but maybe they are just for very severe cases.  All Ben has now that he`s "cured" is daily penicilin v, which he`ll have for life.  I wondered if your dd was having anything like that.  Sorry for such a long post.  Just wanted to say i do know exactly what you feel about worrying about them catching bugs and colds etc, and i am sure i do tend to be very over protective of Ben when it comes to other people around me having colds etc, but i think thats normal for us in the circumstances,.

Hi again, just wanted to prepare you for something, if your dd is on longterm antibiotics she may become amune to them, ds has become amune to three including flufloxacillion and penicillin, the good thing is that they change them and after a while they can then go back onto the ones they became amune to.  If she seems to be getting unwell whilst taking them then ask your doctor to check if she may of become amune to them.  Its a lot easier with ds because it is a wound they can swab it but you might want to chat to your gp about how they will know if your dd has become amune xxxx

Jo

I've just read this and wanted to send you huge hugs. I'm not in the same situation but I do have a son who has been diagnosed with O.D.D. and is now on medication so I do have some understanding of how heartbreaking it can to be to have a child with a "problem". I hope the drugs they can give your daughter help her and now you have a diagnosis you and the doctors know what is being dealt with and knowledge is always power. Lots of love xxxxxxxxxxxx

Only just read your post, just wanted to send you lots of hugs, if you ever need support were all here to listen.  Its obviously good that you have found out whats wrong but also its daunting isnt it thinking about the future but like fancypantz said after a while it will become the norm.  My cousin has just found out her ds 3yrs and her dh both have a hereditary lung condition, they both had cold and it led to pneumonia they went for tests, and are now in a similar position as you - any slight cold in the future can become worse and they must  have a course of antibiotics everytime. She also found out that her ds has a heart problem, they thought it was a hole but apparently its a heart mumur thank goodness.  It does makes things hard work but I guess you have to learn to live with it.  Good luck hun and I wish you all the best for your dds futurexxx

Just wanted to send you big hugs and let you know  we are thinking about you. If we can be any help let us know.

HUGE hugs to you hon, im not in the same situation as you but I can sympathise with how you are feeling right now.

My son suffered full thickness scalp burns almost two years ago, they still have not healed but we have to think about going down the route of skin grafts which means large areas of no hair growth and scarring to his head, he is such a beautiful boy and the thought of him having to contend with a future like that fills me with a kind of sadness I cannot even begin to express because its so longterm, but having said that he is still here and I always think well, it could of been worse. 

So I can sympathise with your feelings when you said is this is how it is for the rest of her life, I can only imagine that as time goes on it becomes so normal to them that it in turns becomes a way of life for you and that you just live with it so it becomes easier somehow.

So sorry, im not much help but if you ever want to IM me if your feeling like a chat then please do xxx

JO

Sending you both a hug

Helen x