Hereditary Spherocytosis and Vaccination - Mothering Forums

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#1 of 9 Old 03-06-2014, 07:34 PM - Thread Starter
 
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I'm popping over here from the non-vax side to ask on behalf of my friend if anyone has any experience with hereditary spherocytosis and vaccination. She's 8mos along with their first LO - her DH just had his gallbladder removed because of issues with gallstones and is being tested for the HS disorder and comes from quite the family history of blood disorders so now they are left to do quick research in the month before baby arrives!

 

Their plan was to do select/delayed, but positive confirmation of a disorder for the babe may make or break that decision.  In my quick reading I see mention of certain vaccines mentioned more so than others if the spleen is still intact, but then if spleenectomy must occur there's a big push for all vaccines and even prophylactic antibiotics.  The conservative side of me wants to say that were if my child I'd be highly reluctant because of the lack of studies - the more rare a disorder, the less information about it and less likely it's been studied in relation to vaccines.  But factor in spleen removal and it's a whole different ballgame. And there's also the Vit K which she was unsure of given her DH's family history and whether or not that would do more harm than good.

 

So if anyone has any experience with this that I can pass along it would be greatly appreciated!

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#2 of 9 Old 03-07-2014, 01:58 AM
 
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Quite a surprise for me to see the title. Usually if I mention Hereditary Spherocytosis, people go, "Whaaa?"

 

My DH has it. He wasn't diagnosed until his early 30s but all the signs were there that something was amiss in his family as almost none of his close family--or extended one for that matter--have their gallbladders left. Also, DH has a bit of a yellow tone to his skin (not outright jaundice but in hindsight, you can see that it was always there and more pronounced when he was ill). There's six siblings in his family and so far only a few of them have been tested. Those two were negative, I believe, and the rest figure they've been alive this long, and survived and they can't be bothered knowing (although I do think that if they are confirmed HS, they really should be on their long term high dose folic acid). I think it runs through his mother's side--his maternal uncles and cousins have also had their gallbladders removed. We mentioned the diagnosis and that they should get tested when DH first found out, but most have not bothered and as only a few specialist labs can actually run an osmotic fragility test, they say they don't have the time to go do it (back in our former city, only one hospital lab performed the test).

 

DH has had his gallbladder out, but his spleen is intact, so that's good news in the 15 years since he was diagnosed. I recall when he first saw the haematologist, her first recommendation was Pc vax (the adult version) right away, even though he had his spleen still. She also recommended yearly flu shots. DH has not bothered with those. The whole reasoning behind the push for being UTD is the risk that a severe illness could cause a haemolytic crisis whereby then the spleen would have to be removed to help stop the destruction of the RBCs, but then without the spleen, immunity is obviously noticeably impaired.

 

I guess the best thing to do is for her DH, if he's confirmed to have HS, to keep up his folic acid (mine's on 5mg a day) and try to stay as healthy as possible (whether or not that includes Pc and a yearly flu shot is up to him). We all just went through H1N1 when we were over in Canada at Christmas and DH fared about the same as the rest of us, no worse for wear. He had pertussis about four years ago as well with no complications.

 

As for vitamin K, both of our kids had it with no obvious ill effects. We could not test them for HS until they were over a year old our pediatricians said, so we had to wait to find out. Turns out, we were really lucky. There was a 50% chance with each pregnancy that our child would have HS (never mind the fact that I have beta thalassemia trait myself--we're a haematologist's dream or nightmare, depending on their perspective). Neither of our kids tested positive for HS and neither tested positive for beta thalassemia. So, this did not affect our decision about vaccination with our kids and both are on a very S&D schedule, only receiving their first one last year.

 

You can pass this info along to your friend and she can PM me if she wishes. Hope it helps. 


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#3 of 9 Old 03-07-2014, 06:11 AM - Thread Starter
 
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Thanks for the response!  I figured it was a shot in the dark because not much came up in searching either.  His father and uncle both unfortunately passed from blood disorders which didn't' even have names until the early 90's and he's also being tested for another disorder, so my fingers are crossed that her good genes will prevail but in the meantime she's being referred to pediatric oncologists and hematologists through the local children's hospital, and while most of the reading does show that it's not always a worst case scenario I think there's the worry of her DH or LO falling into the severe category.  She had swine flu...4 years ago?  So I'm thinking she can pass along some antibodies from that since she does intend to breastfeed, and I'm trying to come up with some positive things for her to read into so that she's not pressured by fear going into the birth and asked to do things she not comfortable with and that are not necessary.  I don't believe she's ever done the flu shot, he may have working as a medic, but I'm not certain. 

 

That's great that your DH fared well with the flu and WC and means that even with underlying issues a healthy body can still otherwise fight things off.  She does see a naturopath and I'm sure she can get some insight there as well.  Do you have any recommended websites to read up about the HS? Thanks again! I've been telling her to come on here and check things out (in general, not just the HS), but I'm not sure she has yet.

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#4 of 9 Old 03-07-2014, 06:14 AM
 
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I too have a question.

 

It's my understanding this pass(more so) from the mother's side- correct? Not so much if it's on the father's side??


 

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#5 of 9 Old 03-07-2014, 06:24 AM - Thread Starter
 
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That would certainly make things less complicated for them since she's clear and yet on his side it's all the men - his father and uncle, and a few cousins both male and female - and most of which have had gallbladder removed but I believe all still have spleens intact.  I guess no one in the family bothered to do any genetic testing and so once baby is born they plan to do some genetic counseling before proceeding with more kids just to see where they stand.

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#6 of 9 Old 03-07-2014, 03:14 PM
 
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I too have a question.

 

It's my understanding this pass(more so) from the mother's side- correct? Not so much if it's on the father's side??

 

From what I know, it's autosomal dominant but not sure if it's X or Y dependent. I don't think it makes a difference. From what I've read of the affected chromosomes, it wouldn't factor into it I think.

 

A few of DH's cousins have had their gallbladders out, including those who are the children of his mother's brothers. 

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#7 of 9 Old 03-07-2014, 03:24 PM
 
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Thanks for the response!  I figured it was a shot in the dark because not much came up in searching either.  His father and uncle both unfortunately passed from blood disorders which didn't' even have names until the early 90's and he's also being tested for another disorder, so my fingers are crossed that her good genes will prevail but in the meantime she's being referred to pediatric oncologists and hematologists through the local children's hospital, and while most of the reading does show that it's not always a worst case scenario I think there's the worry of her DH or LO falling into the severe category.  

 

That's great that your DH fared well with the flu and WC and means that even with underlying issues a healthy body can still otherwise fight things off.  She does see a naturopath and I'm sure she can get some insight there as well.  Do you have any recommended websites to read up about the HS? Thanks again! I've been telling her to come on here and check things out (in general, not just the HS), but I'm not sure she has yet.

 

I think if her DH has fared this well so far through life and is just having his gallbladder removed now, then I doubt very much he's a severe case of HS and he should do okay. DH only got diagnosed because he switched GPs and in a course of run of the mill bloodwork, his new doctor thought something looked a bit off. He told DH that it may be nothing but just wanted to follow up and see where it led. All these years of DH getting b/w and physicals and no one ever noticed anything amiss before. DH didn't lose his gallbladder until he was 35 (about three or four years after being diagnosed), and he's been okay since then (still has his spleen), so it's a case of so far so good for us. I think the severe cases reveal themselves in the early years with high medical intervention required.

 

I don't have any favourite sites off the top of my head. A search will turn up a lot of them, many pretty clinical. Tell her to read and become informed but not to stress too much over theoretical complications. In many cases, people with HS do fine, just get on with life, and it's not a big issue. When will her DH get his test results back? 

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#8 of 9 Old 03-07-2014, 03:36 PM
 
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I guess no one in the family bothered to do any genetic testing and so once baby is born they plan to do some genetic counseling before proceeding with more kids just to see where they stand.

 

That sounds like us. It was with while pregnant with our third child that someone (can't recall if it was the OB or MFM doctor) said, "You really should see a genetic counsellor." I was kinda like, "Well, that sounds like closing the stable door with the horse a tiny blip on the horizon," but we did it anyway because they were freaking out that DH might be a carrier for beta thalassemia which I thought unlikely with his ancestry. But you never know because my mother's relatives have no clue how that particular genetic disorder (which affects Mediterranean peoples) ended up on my her side of the family (which is English/Scottish, two lines traceable back to the old New England colonists even) well, that shows strange things have happened apparently. Turns out DH was negative for beta thalassemia (which was what I suspected anyway) so we just had the HS to worry about. 

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#9 of 9 Old 03-07-2014, 03:51 PM
 
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also my understand is you have to have it to pass it, since it's very rare there are chances the child doesn't but IMO- I would be good to know for the child's next generation

 

thanks for posting the info, this might help someone else

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