Light!!!!

Finally! There may be light at the end of the tunnel. After 10 days in GOSH Fox's haemangioma is, I'd say, 90% better! The wounds are minimal and much cleaner. All it took was a simple anti-biotic cream and a dressing that would allow the junk to come away from his skin!

After saying I was a bit apprehensive of them using any kind of wet dressing, Prof Harper said they were going to use Mepitel, but to ''bare with'' them. I trusted them as the whole team seem very much used to and aware of what should be being done for him.

I've mentioned Maxitrol in two previous entries on here.....turns out it its possibly a very bad idea, due to the strong steroid in the cream so, thats probably a bad idea to ask for that! Trial and error!

The first day we were there Fox had another heart scan and a dressing change, where he again screamed and cried. Next day he had an abdominal scan, This showed he also had two small haemangiomas on his liver. This shouldn't cause any problems. Hes also just taking a simple oral anti-biotic again for a few weeks.

His dressing now consists of: Polyfax cream on Mepitel, then one wet and one dry sheet of Sorbsan, gauzes and bandage. Simple, but the most effective dressing hes ever had on. Within in one change (3 days) the difference of all the wounds/ulceration was amazing. Its clean and neat and whats even more amazing, after all these dressing changes (at least two a week since Oct 08) HE DOESN'T CRY ONE BIT!! HES NOT IN EXTREME PAIN!!! He also only needs paracetamol for this now (not even that really!).

There is no doubt in my mind, we should of asked to go to GOSH in December/January. He wouldn't of gone through all the pain and, I believe, he would never of had a skin graft.

So, hes home again now and we're changing his dressing Monday, Wednesday and Friday and hes returning for review on July 13th.

Professor Harper, Dr Syed, Jane Linward and the rest of the team at GOSH are the best at their jobs in this country, if you're experiencing all the difficulties we have had with Fox, try your best, take all the right routes (GP, asking your current consultant and The BSG) and hopefully your child will get the help they need so badly.

Hes no longer on constant pain killers and we can now look forward to Fox swimming at Centre Parcs next April!!! We were really beginning to think it was too much to hope for, but now we think its possible :o)

Maxitrol Eye Ointment

We went to AH today for his usual dressing change and just wanted to mention that any child who's haemangioma is just beginning to ulcerate may really benefit from this cream. It cannot be used for more than around 4 weeks at a time (with breaks) but if it helps stop the ulceration getting worse, mentioning it may be worth a try to help dry out and heal the affected area. As you can see in the pictures, the first is very 'raw' and 6 days later the edges are beginning to dry (black crusted areas). Fox is also using Acticoat at the moment to keep infection at bay but I don't think this is necessary to help it dry out, Maxitrol (http://xpil.medicines.org.uk/viewpil.aspx?docid=8858) has worked well alone before. Obviously we now worry about whats next when he has to stop the ointment again??? GOSH on Monday. We've also raised £285 so far for the BSG. Thank you to everyone who has given so generously :o) its great.