The following was written by Millie's Mum, Amanda.  Many thanks to Amanda for her permission to publish Millie's story.

At the moment Millie 3 1/2 attends a pre-school nursery at the school in which she will attend full time in September.  When we first found out about the condition we were given a print out from the New Zealand Dermatology Website and were told to carry on with everyday life as it just affects the skin, she was 12 months old.

 

 I had always found Millie harder work than my son Harrison who is 20 months older.  She cried a lot more always had very loose stools and would be sick nearly every day.   When she was able to start talking she would tell me constantly that she had a poorly tummy but I felt completely hopeless as there was nothing I could do to make her feel better.  When I received all of the information from Irene I was very grateful but felt like I had completely underestimated the condition and then convinced myself that she had systemic masto.  We had a tryptase test done which is ok and since Millie reached the age of 3 her symptoms have virtually disappeared. All except the spots!

 

Millie isn't  bothered by the spots at all.  About 2 months ago she had just had a bath and stood on the toilet seat to be able to look in the mirror whilst she brushed her teeth, she rubbed her tummy and said 'mummy look at the spots on my tummy'   I told her they were kisses from the angels and she just carried on brushing her teeth.  All of our friends children have grown up seeing Millie and have never mentioned the spots.  I know it will be harder when she has to starts getting undressed for PE in September but I would ask the school if I could go in and talk to the children if they started to ask questions.   I keep my fingers crossed that they will start to fade as she gets older as I don't want her to have to go through endless name calling.

 

The teachers asked me questions when she first started pre school  and I gave them a print out on the condition and they have been very good about it. Millie doesn't have an epi pen but I am going to request that she has one as a precaution, I would never forgive myself if she had an Anaphylaxic shock and I didn't listen to advice from people, although Dr Gratton from Guys said he didn't think she needed  to have one.

 

When Millie was a baby she would often have a temperature and I would give her Nurofen for children, I found she would cry a lot more so I haven't given it to her since she was 18 months.  I also used to put teething liquid (abesol) on her gums, since learning about the condition I checked the content of the liquid and found it contained alcohol.  I cant be sure but I think these 2 things possibly contributed to her tummy aches.  I also found clarytin a better alternative to piriton as clarytin lasts for 24 hours compared to piriton which is only allowed to be given in very small quantities twice a day as it can make them drowsy.  The effects only last a short time. I would give the Piriton to her at bed time and then again in the night just so we could all get a good nights sleep but then she would suffer in the day. I felt very guilty about giving it to her at bedtime (it felt as though I was drugging her just to be able to get some sleep).

 

Millie has a very healthy diet and we don't restrict her to the foods she can eat.  She saw an allergist in July who tested her for the most common allergens and although her level was marginally higher than normal we were told to keep an eye on any foods that may cause a reaction and to record them for when we see her next July.

 

At the moment Millie isn't on any medication and seems to be thriving.  I hope this information is beneficial to you, you will probably hear different stories from other parents as this condition seems to affect everyone differently, I know Kathy  and Caron Billings children have a much harder time of it.  I noticed at the meeting that some of the children have hundreds of tiny spots and the other children had bigger spots and less of them.  Why? I'm sure nobody knows.