Edited to add: Just got back from the apointment with the specialist. Update in the combox, please check it out!!!
My son has been taking his prescribed foul tasting iron syrup for his anaemia for about 6 weeks or so now, maybe longer. Anyway, because it’s so horrid he has to have a drink straight away to take the awful taste away. (i tasted it myself and it tastes like blood, okay if you’re a vampire, but not so great if you ain’t).
I grabbed him one of those bacterial besieged drinks from the fridge that he likes so much and gave it to him.
He took a sip and said ‘Did you shake it Mum?’
‘Nope’, i said, ‘do you want me to drink it for you a well?’
So he shook it….while it was in his mouth, the lid already off.
Why’d they have to be so complicated?
Anyway. I haven’t wanted to write more here until i knew more to tell. But the last few weeks have been a whirl of appointments and telephone conversations.
We went to the hospital in July. The Dr we saw thought that Wonderboy had no need of the more investigative blood tests that our GP had requested and was umming and arring about whether or not to bother having them done. Wonderboys Dad was with me and he did a lot of talking, a lot about his health problems (!!!) and i asked what could be wrong with our son then and why was he anaemic etc?
I asked what the blood tests could show, he scratched his chin, turned to and fro in his chair and then conceded to the further tests…..but shook his head as though having further blood tests would be an inconvenience.
He admitted he didn’t know much about blood….said he would arrange an appointment with a blood specialist as blood wasn’t his field (what the hell did we see him for then?!!!!)…and said our son probably could do with seeing the ENT specialist about the frequent and heavy nosebleeds.
He didn’t explain when this would take place so i said I ‘and do we wait now in the waiting area until we are called?’
‘oh goodness no! ‘ he said, ‘ you’ll get a letter through the post!’
‘So what do we do now?’
(i asked about the bone marrow drilling and he said he thought our doctor had put scary thoughts in our head for no good reason)
”well i don’t know, i don’t deal with that, ask the girls what to do on your way out (he meant the nurses)’.
He was nice enough, but you could tell he was one of those intellectual types that really wouldn’t know an ironing board if he saw one. (I once heard that the late Queen Mother once remarked with curiosity on an object she saw when visiting the servants quarters below stairs…’it’s an ironing board ma’am’ was the reply.)
I’m not a royalist.
Anyway, so the Dr gave us the blood papers to go and get the bloods done and the nurse we gave them to called another nurse over to look at the blood request and shook her head slightly and said ‘mmm, we don’t usually test for this’.
I hadn’t a clue what ‘this’ was.
Hadn’t been told.
So Wonderboy had the blood test, it was all a bit confusing, because his notes hadn’t arrived at the hospital as the night before i had been on the phone begging for an appointment before we went on holiday that Saturday….and after speaking to loads of secretarys who told me ‘tough’ basically, i finally got through to a really nice one who arranged for us to get an emergency appointment for the following morning (Friday)
Anyway i’m getting sidetracked…..the nurses told me to ring up the specialists secretary the next week for the results.
Well we were on holiday in Wales and on the Wednesday i phoned and phoned and no one would give me any info.
After about 6 hours i got a call back saying that Wonderboy would have to see a blood specialist because the beta thalassemia gene had unexpectedly shown up in his blood. Of course, i didn’t have internet access so i couldn’t look it up, but a real time friend had suggested a while back that it might be thalassemia. I just didn’t know what the beta bit meant or anything.
When we got home an appointment had been sent through for October.
2 months away!
How the hell could Wonderboy go back to school and have more absences, no diagnosis, no treatment etc. So i ran my phone bill up sky high phoning the hospital, and eventually i got them to reduce the time to August.
Hassling people pays off. So do it people!
The apointment is today actually.
This is hopefully when we find out if it is a recessive gene or an active gene, or if it’s one version of the gene or another.
From what i have read there can be minor beta thalassemia or major beta thalassemia….the latter being far more serious. From what i have read, all indications show that if he does have it, it is the minor beta thalassemia that he has, as he also has aneamia and that seems to be one of the main symptoms of beta thalessemia minor.
In other Wonderboy news…
Last week he had one nostril of his nose caurterized to stop the nosebleeds he so frequently has and the day after, the other nostril bled like crazy so i don’t know if that will need doing next.
Please then, could i ask your prayers for Wonderboy today?
We’d really appreciate it, thank you.
Also i would beg prayers for my darling daughter, Wondergirl and all teens who are awaiting the results of all their high school GCSE exams.
Thursday is RESULTS day.
Her results will determine if she gets a place at college and she is understandably anxious about this. Another blog buddy’s daughter is also awaiting her results, so please keep Barbara’s daughter in your prayers too, if you would be so kind.
And don’t forget to check the post below for a teensy weensy (truly it is teensy) giveaway i got going on 🙂
God Bless you!
p.s. I will write about the outcome of Wonderboy’s appointment today in the combox of this post so please keep a check on it if you are interested in learning more about what’s going on with him.