MORE IMMUNOS- MORE POO!!

A crazy week for us of ups and downs. Firstly, Harry... Harry had a specialist appointment on Tuesday in Dunedin and we have made the decision to put him on immuno suppressants also. We have come to the point in this journey where we feel like we are no longer coping as a family. Actually we have felt like this for some time but we wanted so much to get Harry through this without drugs but I just can't watch Harry in pain any longer. He screams every day at us saying "Take my skin off" and "My skin hurts". I feel like we are torturing him! Enough is enough. We have hung on for eight long months and we have seen healing, very slow healing but not enough to continue this way.
Last weekend I turned our bedroom upside down trying to find steroid cream in desperation to ease Harry's pain.  I did find some and used it. I honestly thought I would never touch topical steriods ever again. I guess this proves how desperate we are! Unbelievably Harry slept all night, the first time in eight months...actually the first time ever! To me this proves how addicted his wee body is to topical steroids. He had the fix his wee body was craving. He is on antibiotics now before going on the immnos in a couple of weeks. After a day of being on them we have seen a huge improvement -  Harry is a changed wee boy..momentarily at least. He's sleeping, playing, laughing, he didn't wear socks the other day all afternoon and tonight he didn't have his sleeves on for a little while and there was no scratching! He has had a couple of itch sessions throughout the day that are short lived. Harry pulled up his sleeve tonight and said "My arms white". He's also said "I feel good now".
I do feel defeated and have moments of doubt in what we are doing, swapping one drug for another but I need to think of all of us in this decision. Ultimately I want my baby to be comfortable and happy again.

Oscar had his last lot of antibiotics last Sunday and on Wednesday he woke up with diarrhoea and vomiting again.  Thursday was much the same. The doctors are running more blood tests and stool samples. Far out, the amount of poo we have been dealing with the last few weeks! There's a couple of things the doctor and paediatrician from Dunedin are looking into so hopefully we will know more next week. Oscar is happy enough at this stage thankfully and his bowel motions seemed fine today but he has a sore stomach again tonight.  It will be interesting to see how he feels over the next couple of days. Fingers crossed his body is just trying to get back to normal after being on antibiotics.
A tiring week emotionally but thankfully with Harry sleeping better this week I feel like I have been able to cope with it all without feeling too frazzled!

Clear skin after a day of antibiotics