Wonderboy update and prayers please…

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.

Boys!

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.

At 2.30pm.

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.

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30 Responses to Wonderboy update and prayers please…

  1. SabrinaT says:

    Sending prayers! LOTS OF THEM! I hope you get the information you need.

  2. Seeker says:

    Just wishing you and Wonderboy all the best. Will say a prayeer for you.

    By the way, have you seen this link: – http://www.webmd.com/a-to-z-guides/thalassemia-topic-overview ?

  3. Owen says:

    Brotherly love and prayers…

  4. Suzanne says:

    My rosary prayers are with you and your children and esp. the ones who need them most! 🙂

  5. Hector says:

    My prayers are with your family!

  6. ukok says:

    The best possible outcome!! Wonderboy has thalassemia trait, wish means he won’t ever get the full blown disease!

    The specialist described the people who had it as living in, or coming from (or their family coming from) ‘the spice trail’. He said, anywhere Marco Polo went is exactly the regions that have the disease.

    Anyone in Southern Italy, Greece, Cyprus and i think he even said Tiawan or somewhere like that.

    It could be a very big problem when Wonderboy chooses to marry as he must not have children with another Thalassemia carrier as the children have a horrid life of constant blood transfusions and terrible sickness, but other than that, everything is going to be okay!

    I can’t tell you how relieved i am! His Dad was with us and because it’s 99.99% certain that the faulty gene comes from him (he’s an italian, decended from Southern Italy) he will have to have a test to see if he is a carrier too, then his other son (used to be my stepson-yup it’s complicated) will have to be tested and his little daughter.

    It’s just the best, the very best outcome.

    Now i’m going to have a cuppa tea!

    Thanks so so so so much for your prayers an encouragement

  7. dawn says:

    What a wonderful outcome. I just stumbled on your blog doing a search for St. Martha’s novena and ended up here after reading all about your cult experience, conversion to Catholicism, etc.

    I’m also a convert. : )

    Just wanted to say hello and wish you and your son the best. i will pray for his continued recovery.

  8. Suzanne says:

    Oh, Deb, so happy. Now we just pray he doesn’t fall in love before he knows if someone has this problem. Let’s not fret over that today…besides..Wonderboy will pray for his future anyway, won’t he? Gosh … praise GOD! 🙂 Whew!

  9. Janet says:

    Great news! Does the trait explain the symptoms he’s been having? Is there anything special he needs to do/watch for?

    Continued prayers.

    Janet

  10. Sarah says:

    Fan-bloody-tastic! Thank you, God!!

  11. Mimi says:

    Continued prayers, and my hope is for the mild form!

  12. Barbara says:

    I am soo pleased.. thanks for the information link cos I thought that it was the same as sycle cell anaemia and now I know that is different…..

    Thanks for the prayer call for Siân’s results on Thursday…. the big day looms.

    Blessings and Thanksgivings

    Bxxx

  13. Renee says:

    Great news! Bet you sleep well tonight, eh?

  14. Rachel says:

    I am glad Wonderboy is okay. I have nominated you for an award. Come to my blog to see.

  15. Rosemary says:

    Yay! Yay! Yay! Thanks be to God! What a relief! I am so happy for you!!!! I’ve been in a few of these situations of waiting to see specialists for my kids and I can just feel your relief and joy. Blessed be God!!!!

  16. Sally says:

    Praise God for good news. Peace be with you 🙂

  17. “ask the girls” how very patronising and sexist.

    but I digress …really glad that you have a diagnosis and that it IS good news.

    May I ask what happens now? I mean in order to get Wonderboy back to health and back on track – more specifically to stop the nose-bleeds or the anemia or the absenses from school.

    Did the consultant talk about changed diet, changed routines, medication or does he just keep drinking the bats’ blood and hope for the best?

  18. Antonia says:

    heya! Thanks for sharing! That is certainly a HUGE relief to hear!
    God Bless
    xxxx

  19. SabrinaT says:

    GREAT NEWS!! Just have each girl you think he might be serious with submit a blood test? Think that will work!

  20. ukok says:

    Lorna and Janet….Wonderboy is not going to have even iron medicine anymore. The specialist said that even if he gave Wonderboy an iron pole to eat it wouldn’t increase his iron level and the iron syrup won’t provide the iron he needs either. Wonderboy is chuffed about that as you can imagine!

    I mentioned about the headaches, the hair loss etc and he seems to think these will clear up eventually and that no further treatment may be necessary.

    I think we’ll have to see how he gets on when he’s back at school in a couple of weeks because if he starts feeling unwell i’ll have to take him back to the doctor i suppose, but i think for the most part it is just something he/we will have to accept.

    He may feel generally unwell for some of the time, for all of his life, i suppose.

    Sabrina, yep, your right, that is exactly what we have to do. I had a wee talk last night with him about how because of our religious beliefs we would strive to remain chaste until marriage, but that it is incredibly important for health reasons that he remains chaste and that when he meets someone and realises ‘she is the one’, she must then have a blood test.

    I just wish there was some little pin prick test i could give his future girlfriends and then maybe when they come to meet me for the first time we could have tea and biscuits and one of those embarrassing introductory talks and then out of nowhere i would just prick her finger or something.

    She’d say “what was that”

    and i’d say “what dear, i didn’t hear anything, did you hear an noise?” and feign complete innocence!

  21. Phil says:

    Love and prayers, as ever!!!

    Px

  22. Mac McLernon says:

    Fabulous news. Having a proper diagnosis is half the battle… at least it stops the “oh, it’s all your imagination” stuff from “officialdom!”

    Prayers for Wondergirl’s results too!

  23. Esther says:

    Thanks for the update on WB Deb.

  24. Tim J. says:

    I am *delighted* to read of Wonderboy’s diagnosis.

    God bless you all, and thanks for sharing this news!

  25. Cathy says:

    So grateful for the welcome news and that there is now a name for why he has been feeling poorly. Have been following the events and can hear how relieved you feeling. Thanks be to God!

  26. mum6kids says:

    Deb-that’s great news! You could get Wonderboy Floradix just to keep him ticking over.
    What about Wonder girl’s results? Hope she did well.
    I am glad you fought your battles-and sorry you had to! It can get very wearing very quickly.
    God bless you and yours

  27. Valerie says:

    The waiting and not knowing is so difficult to go through – I am so glad that you received a diagnosis and it was not the “bad” one! But, I will still keep him in my prayers, and your daughter, too, as she awaits test results of a different kind.

    Sorry I’ve been out of the loop – most of the summer, I think – but I’m starting to pick back up again and will write a couple of blog entries in the next day or two. Thanks for all of YOUR prayers during my difficult time, my friend. God bless.

  28. Penny says:

    >>>”…and then maybe when they come to meet me for the first time we could have tea and biscuits and one of those embarrassing introductory talks and then out of nowhere i would just prick her finger or something.”

    I do so love you, Deb. You make me laugh even when I’m worrying to death about you. But this week is a time for celebrating what with Wonderboy and Wondergirl. Your friends rejoice with you!

  29. I’m glad he is going to be OK and won’t need that foul medicine anymore. Great news! Continuing the prayers.

  30. Pia says:

    This is great news, so glad that everything has turned out for the best. If I’d known his dad was Italian, I’d have guessed right off that this was his problem…but then again, even if you have a clue about something, you still have to go through clueless doctors, who would feel offended if a patient were to suggest something!

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