hereditary spherocytosis

[Tusky]

hello - I was wondering whether there is anyone else out there who has this condition and has children with it - my son has inherited it from me,is 4 years old and takes 5mls folic acid a day.
I had my spleen removed at the age of 6 (my brother had his out 'as a precaution' at age 13) and my mother when she was 18. Both my mum and I were very ill before the operation,but perefectly fine afterwards.

[Robinw]

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[Tusky]

thanks Robinw- I'll check it out. Our problem isn't really a problem as such,but I was curious to know about anyone else with it.

[Adelante]

Hi Tusky
I know you posted this message ages ago, but I hope you're still there! My son (7) has the condition, which he got from his dad. The consultant is thinking of doing a spleenoctomy soon. My partner had his spleen out at the age of 6 and now has the constitution of an ox. he's very gung-ho about the prospect, but I'm not so sure!
I'd love to hear about your experiences.
Adelante

[muminpink]

Hi

new to this site and saw your message - I would be interested in being in touch with you as I have two children 5 and 1 whom both have this condition and apart from family members don't know anybody else with this. (it has come from my husband and his side of the family)
My husband had his spleen out at the age of 9 but so far there has been no talk of either of mine having their's removed,
thanks and looking forward to hearing from you

[mummysgirl]

hi out there it was good to read all your messages on hereditary spherocytosis as my daughte was born with it 10 months ago and the very strange fact is that it has not ever been in our families!Apparently she started it herself,we were told at first that she would grow out of it within months but she has now had 10 transfusions and we fear that this is set for life.she has 2ml of folic acid a day and a high fibre diet.its the haemoglobin blood tests that bring tears to my eyes every time.she is constantly pale and slightly jaundiced but is a happy soul most of the time.any memories of this condition you may have from when your children were young would be most grateful.

[binker]

hi - I posted the original message as Tusky -my son is now 8 and fine and healthy - he's on 5mg folic acid a day. Interestingly we've recently moved and the doctor here has a nurse who is responsible for his splenectomy patients - there are quite a few of us,though mostly through accidents - about 3 with spherocytosis. He has encouraged me to have the HIB and meningococcal jabs (same as babies) and am meant to have a pneumococcal injection and a flu jab too. Adelante,why do they want to take your son's spleen out ? I thought they prefer to leave it as long as possible -is he very anaemic ? I can remember feeling very ill and as weak as anything before my operation - I had to bew carried up and down stairs and just lay on the floor - it was horrible. Sorry this is a bit of a rushed posting,but I wanted to reply and say that I'm here still !

[mummysgirl]

Hi there again!Just want to say thankyou to you BINKER for giving me hope that my daughter could live a healthy normal life the doctors are still hopeful that a spleenectomy will not ever be needed and the little one seems to be doing better and going longer without a transfusion as she gets bigger although we still need to keep an eye on her when she picks up colds etc as her hb levels drop quite quickly.You mentioned flu jabs,do you think i should ask my daughters doctor if she should have one?So glad your son is doing fine!

[binker]

hi mummysgirl - ask your doctor - some kids were being done (ones with cystic fibrosis mainly) when I went on Saturday for mine. Hope your daughter continues to keep well - my son is fine -I would say,touch wood, a lot healthier than many of his classmates ! I hate it when he has blood tests and can understand how you must feel.
I had one transfusion as a child which was very traumatic as I was very frightened,and I used to have some totally foul tasting iron medicine which was like tin spoons.

[mummysgirl]

Hello Binker-thanks for the advice yet again my daughters doctor said she did not need a flu jab which was great.Her blood tests are getting a lot quicker now as she is big enough for them to take it straight from her arm instead of the awful finger and foot pricks they used to do which made her scream.But transfusions now are hard work as at nearly a year she is very hard to keep occupied for 4 hours!There is one good thing that has come out of all this though and that is all the friends we have made!I really appreciate your info as it was hard at first because no one else in the family has Spherocitosis.I hope you are all well!

[binker]

mummysgirl -am glad to hear that the blood tests are becoming less stressful (though never nice) - but do sympathise about transfusions...hope your daughter continues to do well

[mummysgirl]

hi there hope everyone out there doing well and binker and family also.i have a question to put to you.My daughter got ill with a nasty cold on her birthday and was taken into hospital as her h/b dropped very low so she had a transfusion.this is not the first time this has happened as with any virus she easily picks up we have to keep a close eye on her but this time it turns out that her white blood cells have started to break down too and she will need another blood test soon to see if they have picked themselves up again.Her doctor says it is due to the virus she caught but has anyone ever heard of this before?She is still very poorly with the chill but the transfusion has made her rosy again even if only for a couple of months again!

[binker]

sorry mummysgirl - haven't come across that before - am also sorry that your daughter has been poorly - hope she is much better now. I am just very lucky that ds isn't affected by his spherocytosis. I can't remember picking up viruses or infections especially as a child - I used to faint from time to time due to anaemia (in fact I'm still given to fainting every so often,for no good reason !)
Keep warm and cosy in this chilly weather !

[willandsamsmum]

Hi, I've been lurking on Mumsnet for a few weeks but this is my first message.

I have HS and had my spleen removed when i was 13. Both my sisters have it also and had their spleens removed at 5 and 7. My two year old son has it but is being monitored regularly at the moment and is on folic acid. He has bouts of anaemia where he is very pale and slightly yellow but is fine most of the time.

We all developed the symptoms at different stages of our lives and in varying degrees of severity. One of my sisters was transfused at 6 weeks and used to go to sleep in the weirdest places due to the anaemia and the other one missed so much infant school due to jaundice and anaemia that she was kept back a year to catch up. I was diagnosed a lot later than either of them and was very jaundice right before diagnosis. My spleen was huge when they removed it. I've always been told that the only way to stop the recurrent symptoms of HS is a splenectomy.

mummysgirl - I hope your daughter has recovered now. My son was recommended to have the flu jab. I'm suprised that your doctor didn't think it necessary.

Binker - do you have to take antibiotics every day? I was told my my doctor recently that the health guidelines say antibiotics every day with a course of stronger ones to be kept at home incase you pick up a serious infection. Not the news I wanted.

[binker]

hi and welcome willandsamsmum !
I don't take antibiotics and don't seem to pick up colds etc very often..am quite pleased that I wasn't put on them when my spleen was removed as I guess it helped build up my immunity.
I remember feeling very poorly just before my spleen was taken out (at 6 and a half) - so weak and weedy that I'd lie on the floor and had to be carried upstairs..it was wretched. If your son has it,then hope he is like my ds and perfectly fine.My brother who has HS too has a 3 yr old daughter and she doesn't have it,which is great.

[mummysgirl]

welcome to the clan willandsamsmum!its good to talk isnt it!my daughter(emma-lou)is much better thankyou and oh so cheeky again!i was very surprised too that the doctor didnt think it nessecary for a flu jab maybe it is a sign that she is not in that much danger i hope!it sounds like you have quite a family history of spherocitosis,in a sense i wish we had so we wernt so bewildered when emma was born with it!
Binker hope you all well!Emma has not fainted as yet but her anemia doesnt seem to bother her unless her hb is drastically low so it is really hard to notice the symptoms with her when she IS low!but she is great now thanks.You all keep warm too!love talking to you all

[binker]

Picked up prescription for my son's folic acid today and noticed that he needs to be reviewed next month,so am taking him to see doctor..I guess they just check on how repeat precriptions are going. Am wondering whether they will refer him to the hospital (we moved here from London six months ago)- he used to be seen yearly at West Middlesex - just a check up-seeing if he was in good health,no swollen spleen/jaundice.I'm wondering how much experience this doctor has of Hereditary Spherocytosis..

[willandsamsmum]

Binker, It might be worth just asking your doctor if your yearly consultant referal has been transferred over from your last health authority. DS2 is seen 6 monthly at the moment but my gp is very hot on HS and we've been admitted into paeds AU before because he's been concerned about DS's condition. It's great to have a doctor who knows what to look for at last. I've had to explain to drs and nurses what HS is in the past.

Mummysgirl - great to hear your daughter is better.

[binker]

yes,will ask on Friday when we go. Ds is in good health,no anaemia,jaundice or any swelling of spleen, but I guess I'd like to have him monitored by the experts...

[binker]

good - ds is now being refrerred to the hospital here to be checked over as before...

[willandsamsmum]

That's good Binker. I like having that point of contact and option of seeing a haematologist if we need it without having to go via the GP (although, as I said before, he's great).

DS2 is very, very pale at the moment and not eating too much so we are watching him closely. He seems well enough in himself though, still beating up his big brother. DS2 is half the size and definately twice the trouble of DS1! I'm using his willingness to trash the house as a barometer of health!

[binker]

hope he gets some colour in his cheeks soon - but if he's well in himself that's always good. I give my son a multi vitamin everyday too - don't know whether it does any good, but I like to think so. He eats a good diet- loads of vegetables and fruit,so I that helps.

[willandsamsmum]

DS2 eats a good diet too and actually loves curly kale which is slightly bizarre for a two year old! lol He's really quite yellow at the moment though and barely ate anything yesterday. He had a temperature and was just generally wiped out. He's eaten slightly better today but has slept for about 4 hours. Hoping that he'll be perkier tomorrow. It's never during these phases that he has a haem appointment though!

[binker]

am v sorry to hear that willandsamsmum - makes me appreciate how lucky we are that ds is ok with his HS (touch wood) - hope you all have a very happy and jolly Christmas though and your son perks up and manages to eat some Christmas foods-
big hugs xxxxxxx

[willandsamsmum]

Awww, thanks for the hugs binker. He is a bit brighter now although still very pale and tired looking. He hasn't eaten much for the last few weeks but managed 3 helpings of red cabbage, 2 lots of Key Lime Pie and a mince pie for Christmas lunch. He's bravely battling his way through a chocolate mountain too.

Hope you had a great christmas. x

[binker]

red cabbage sounds good ! ..and chocolate I always think is good for the spirit (hope so, we have a mountain to get through too !). We had a lovely time,thanks. Have a great New Year and hope it's going to be a healthy one ! x