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Adam's problems started when a friend of mine noticed he had little purple dots all over the fleshy parts of his skin, he
was 4 months old at the time, the purple dots turned out to be the result of a low blood platelet count, but it took a while
for that to be worked out. He went for blood tests and while we were waiting for the results he was bitten by some mosquitos
and he had a really bad reaction to them, I was asked to bring him back to the local hospital in Vlaardingen to see the Peadiatrician,
she kept him in over night and the next day we were sent to the Sofia Childrens hospitalin Rotterdam, by this time he was
almost 8 months old.
We were told he either had leukemia or a virus, but that he would have to have a bone marrow biopsy done to confirm it.
It was a 50/50 chance of either. It turns out it was neither!
The next year was spent going back and forth to the hospital with lots of frustration and waiting for results. Nothing
came back from all the tests he had done. Then in March 2001 he had a strange patch come up on the side of his head, it was
a bit like a mole, i pointed it out to the Oncology doctor at the childrens hospital and was told nothing to worry about,
each month another patch would appear but nothing was done. Then he got them on his arms, mostly the tops of his arms, he
had two skin biopsy's done but again no diagnosis. By the end of 2001 we were still no wiser as to what was wrong with him,
and up until that time he had not been sick at all, he had another bone marrow biopsy done in November. Then in December he
got a really bad ear infection and we took him to the GP who gave him antibiotics, they didn't help and 10 days later we were
back at the Sofia and were given another set of antibiotics. His second birthday arrived and he was not to well, his face
was a bit swollen and his cheeks were red, I took him back to the GP and he was given Fungizone for the infection he had in
his mouth, i later learned that was due to a reaction from the antibiotics, two days later he couldn't drink or eat anything
and was rushed into hospital for the first time in 2002.The childrens hospital didnt know why he reacted to the Fungizone,
i had already stopped giving it to him as i had noticed it made it worse, he was kept in for 5 days and nothing came of why
it had happend. The next month he was back in hospital for yet another bone marrow biopsy and we had to return in March for
the results. In Febuary we were on vacation in England, Adams baby brother Luke was being Christened, while there Adam had
a really bad fall and banged his head, then hours later he started vomiting and he had diareah really bad, nothing stayed
down, naturally we thought he had concusion, he was addmitted to the local hospital in Ilford two days before the Christening.
He was allowed out on the day for two hours, mainly because I didn't think he was going to survive long, he was so sick and
so ill, eventually I made the hospital get in touch with the Sofia Hospital in Holland, as no one was taking much notice about
it being possibly Mastocytosis, I at the time didn't know much about it, but then the English hospital took a bit of notice
at last. He was in hospital for two weeks and it took another 6 weeks before he was himself again, he lost alot of weight
and his blood platelets were really low for a while.Then in June he got ill again, we took him to the GP who diagnosed him
as having asthma and gave him pulimicort and ventolin, he had yet another ear infection and his eyes were also really badly
infected. By chance the local Peadiatrician phoned me that day and could hear Adam's breathing over the phone, she told me
to bring him in straight away, he had pneumonia, they put him orale antibiotics and oxyegen and a spray and ear and eye drops,
he was really ill and unconsious most of the time, drifting in and out of sleep, the second day in hospital he was getting
worse, and that night the alarm went of on his heart monitor a couple of times, i really thought he was going to die again,
i realised at that point that i had to learn more about Mastocytosis. The next day they took him down for more ex-rays and
it was clear that even with the antibiotics it had spread to his other lung.He was put on a drip and given much stronger antibiotics.
He was in hospital for two weeks and then home for 3 days when he got a really high fever and complained about headaches and
pain, he was addmitted to hospital again for 3 days to observe him as he was still on antibiotics. Then i had pneumonia and
in the time i was resting at home i found the Mastokids website, (you will find a link at the bottom of every page) It was
a life saver. I was told what medication he should be on and i went and demanded it, and since then he has stabelised.
He won't get better,as so far there is no cure for it, we have to fight each battle as it comes. He has to have another
bone marrow biopsy and skin biopsy along with a hernia operation in the next few months. I will keep you up to date with how
things are going with him on this page.
This is Adam with his auntie Sue, she attends nearly all of his appointments at the childrens hospital and
remembers all the things that I seem to forget. She drove me and two of the kids to Germany for a mastocytosis childrens meeting
and will be attending the Dutch meeting at the end of March. She works full time and has a home to keep going and two children
of her own to take care of. I don't know what i would do without her helping me through all the things, So a big thank you
to auntie Sue...xxxx
Luke's story
Luke my youngest son has also been diagnosed with a form of Mastocytosis, his is called Cutaneous Mastocytosis, his main
symptoms are itching, from the day he was born he itched like mad, i was told to use different washing powders, different
soap, then no soap, it took months to find out that nothing i did changed his itching, i knew something was wrong, but everywhere
i asked they told me try this and try that, eventually they done some blood tests and that all came back fine, but Adams doctor
put him on the same medicine as Adam, his itching stopped after a few days, then as i was learning more about Adams illness
i tried the Dermographism test on Adam with no results and then i done it on luke and his name appeard on his back. His nappies
always had the same strange oder that Adams nappies had, so i think i really did know, we moved to England in September 2003
and saw a new doctor here, i showed him one small spot on Lukes tummy which i thought resembled the ones i had seen when looking
for information on Adam and he confirmed what i had thought all along. From what i have learnt on this form i am told it will
go when he reaches puberty, so we shall see.
Click here to go to Lukes page on Cutaneous Mastocytosis
Click here to see a picture of cutaneous mastocytosis
| January 2003 Adam with his nana |
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| Or should i say Bob with his nana....lol |
Adam likes going to the shops with his nana, he also likes to dress up. He got the Bob the builder outfit from his other nan
in England.
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