It has been a bad few weeks for William. He’s been poorly off and (mostly) on for weeks now with one thing or another that he has picked up. His levels of immunity are quite low now because he is on a high dose of Ciclosporin (for those of you unfamiliar with his story this is the same drug that is used post-transplant to prevent organ rejection) and consequently he can fall very ill with even the briefest of contact with someone who is sick or after touching surfaces that may have germs on them (toilet door handles, light switches, school desks where someone sneezed earlier this morning, someone coughing two rows behind in assembly etc).
Three weeks ago he and his brothers fell ill with a fever and bad cold but William developed tonsillitis and while the others bounced back, he was quite unwell for several days. He started antibiotics to prevent bacterial complications developing. The second day that William was sick I took Harry into school (always tricky to get him there without his bro but I bribed him by allowing him to choose his own breaktime snack, crisps) where the head took me to one side and informed me that a child in William’s class had come down with suspected German Measles. So now, already poorly, William was quite possibly incubating German Measles.
The following week he returned to school. Two days after finishing the antiobiotics, he came home tired and tearful. I waited for the fever – which appeared by about 11pm. This time he was very poorly with tonsils so swollen and covered in exudate that he could barely talk and a very high fever and so when a rash appeared we were summoned to the hospital where we were greeted as regulars and William was given a room in isolation. Fortunately the rash was diagnosed as probable glandular fever and we were later sent home after tests with another round of antiobiotics (also a pain because it requires my presence at school daily to administer them and my presence during the darkest hours of the night to administer them again – so tired right now).
He returned to school yesterday where the school secretary thoughtfully informed me that a child in his class now has chickenpox (March is chickenpox month, always a fun month when you have an immunosuppressed child!) so now we wait to see if he will come down with that.
Mostly I cope fine with all this, sad for my little boy who misses so much, but also quietly grateful when we manage to stay out of hospital. But it’s made harder when one of my closest friends asks me ‘how do you manage to catch all these illnesses?’ and I wonder how I have any hope of keeping William well, because if she doesn’t understand how easily he can fall ill, what hope do I have with all the other parents?
I understand that parents are free to choose whether or not to vaccinate their child but I wonder if they understand the risk to those – like my son – who are so very vulnerable. I thought long and hard before vaccinating my first son, Harry, because of the suggested link back then between the MMR vaccine and autism; I did hours of research and came down in favour of vaccinating him. Since then research has been unable to prove any link between autism and the MMR vaccine. Rubella (german measles) is not especially dangerous to William but the MMR vaccine covers measles, mumps and rubella which leaves children who haven’t had the MMR jab unvaccinated against all three including measles which is a much more serious disease. If William catches measles, he faces a 30% mortality rate. If he catches measles, I will be sitting in the hospital, praying and crying.
If you choose to take the risks with your own children then I respect your choice, but please don’t forget that there are other children who don’t have a choice and everytime you choose not to vaccinate and you put your child in school, go shopping or go to any public place with them, you put my child at risk.
I expect those parents would argue that I should keep my child away from crowds, but William wants to go to school, he wants to go swimming (it’s the one exercise that doesn’t hurt his bones), he wants to come to the toy shop to spend his pocket money. I defy them to hear him say ‘this is not a good life mummy’ when I tell him he has to spend another day at home because he is ill and then tell him, when he is well, that he can’t do the things that a six year old wants to do, to do the things that make life worth living.
Photo: nevolution
{ 41 comments… read them below or add one }
Oh I am so with you on this. And parents who send their sick children to school in general.
I’m a little more vigilante about it though. Frankly, yes, it is your choice whether or not to vaccinate your child. Unfortunately. Although all evidence points to it not being harmful you can decided no. But when you do so, you take the assumption that the rest of us will keep YOUR child safe by vaccinating OUR children so these diseases and viruses don’t return. And yet, OUR children are put at risk by your choices.
Why would the government conspire to give children Autism? It makes no sense.
Yes, I have had to turn down vaccines because of my son’s allergies, and some have to turn them down because of impaired immunity or other health concerns. But it’s a very calculated risk. Someone who does so because of some conspiracy theory needs to take the responsibility for THEIR actions and keep THIER child home. And if THIER child makes my child ill than I’ll probably get even more vigilante.
Eeek. Touched a nerve here.
I hope William is able to bounce back from it all
I’m with you on parents sending their sick kids to school: I remember taking one son to preschool once and a mother saying to the teacher about her own son ‘he’s a bit croupy today but I’ve given him some medicine, I’ll pick him up early’. My children were all sick with croup for weeks after that. Grrrr.
Thanks for your comment!
Poor William – I hope he picks up over the Easter break.
I’m with you – vaccination is about community responsibilty as well as parental choice and sometimes choice in these circumstances can be a bad thing.
And of course William must be allowed to go to school. He has enough to put up with without being made to feel he can’t do things he loves.
Hope you all have a lovely Easter hols. x
Thank you, hope you have a lovely Easter break too x
Oh me too, do you know that all it will take is 11% of parents not to vaninate against measles and then poof the vaccine will be of no use to anyone. My Great Aunt is deaf and dumb from a measle infection and I nearly died as a child from a bout too.
Maxi was immunosuppressed, but nothing to the extent of Will and I was a terrorist about germs. Oh and you can get a private vaccine for CP for about £60. Maxi had all his specific antibodies tested and then had to have every vaccine again and they also give him some extra ones just to be safe.
I am so sorry that people don’t understand how hard it is to prevent a child getting virus’ etc
lol, ‘germ terrorist’, that’s what I’ll call myself from now on
We tried to get the vaccine for William and for Edward who is 2 and hasn’t had chickenpox yet but they said they wouldn’t and didn’t recommend it for William as he musn’t have live vaccine – they would jab him once he gets it (acyclovir?). Edward needs to have CP to build up his own immunity – am kind of hoping we will be in the US before that, where he will have to have the vaccination.
In the US, I understand that you have to show you have had your imms before you can start school and I read that measles has been eradicated in the US – if so, there will be much less risk to William from these life-threatening diseases. Now if we could just get some pesky medical insurance for him.
Ella, I wasn’t going to write anything here but you know that we chose not to vaccinate and to not stand up and try and defend that seems a bit crap, but we decided that the safety of vaccines couldn’t be proved and so we chose for our family not to have them. We have had a lot of trouble about our choice and for now we are sticking with it but there are times when I certainly feel very uncomfortable about our choice, as I do now reading your words xx
I honestly do respect your choice, because I want that own choice for myself. But I think if parents choose not to vaccinate then they have to become the ones responsible for keeping their own child free from those diseases, rather than relying on the herd immunity of other vaccinated children keeping their own child safe. And that means keeping their own child out of school and public places so they don’t catch and pass on life-threatening diseases.
It’s also, as you know, the reason that our families can’t get together
xx
Hello, just found your lovely blog.
This is a great post. I have no qualms about vaccinating and encourage others to do so. protecting children like your son is one of the most important reasons. he relies on the “herd immunity”. Here in the US we get the chickenpox vaccine, maybe you could get it for your son as themadhouse says. mine had no side effects from it.
Hi geekymummy, yes he relies on the herd immunity and I am always grateful that we have the vaccines, firstly to protect children generally and also to protect those that can’t be protected by vaccinations.
We did look into getting him vaccinated for chickenpox but they won’t because it’s a live vaccine. The only thing he has been able to have this year is pneumovax against pneumonia and thankfully he had that a few weeks before we all got swine flu
Thanks for stopping by and for leaving a comment!
I to am a mother to a child that is immune compromised, My son has FSGS. Your story was so well written, and I would love to hand it out to all families at my son’s future school (but would not be allowed). I am very interested in this topic as I will be in the same position as you in about a years time. So I would like to ask you (as you are the experienced one) do you keep your child home if there is an outbreak of measles or chickenpox? I just don’t know how to approach this subject when my sons time comes.
Hi Karen, thanks for commenting
After this brush with rubella I am considering approaching our headteacher to see if I can hand out something to parents at school.
I do keep him at home if there is chickenpox in school because there is no vaccination in the UK so chickenpox is widespread when it hits. If there were any risk of measles I would definitely keep him at home because the risks are so very great, and after this scare, I am considering whether we are taking too much of a risk having him in school at all, particularly when I now know there is an unvaccinated child in his class.
Do Canadian children not have to have had all their vaccinations before starting school?
Yes Canadian children do need their vacinations to go to school, BUT can be exempt if they get a letter stating different. I know that their are Autistic children in the school not vaccinated because their parents feel that it could cause the child to become further autistic. All a person really needs is a letter and approval from a doctor. I do believe the child does not need a medical reason either, to not receive the vaccine….like our children who actually have a reason for it. I am kicking myself now for not getting my son vaccinated for chickenpox before he got FSGS…I was one of those that thought getting it naturally was better, NOT NOW!
Here in Canada we/I would need to go through the school board ect to get letters sent home regarding this, alot of politics. I think I will address the school and tell them that I do not want my son in the same class as an unvaccinated child…for health reasons, when the time comes, provided there is more than one class.
This is what I try to tell people again and again. I cannot understand the selfishness (and I really do think it is selfish, sorry Eva) of people who choose not to vaccinate. I know they think they’re doing the right thing for their children, which is incredibly debatable. But the more people refuse it, the more these disesases come back (measles is becoming more and more of a problem already) and people like William are the ones who suffer. I really don’t think enough people actually understand the concept of herd immunity and the media should make a concerted effort to educate people in it, because it’s their scare-mongering that got so many people to stop.
There is a lovely cafe in town where I used to enjoy going and taking Rosemary. Lots of wooden toys, healthy food, storytelling on a Saturday morning, nice atmosphere. Until, one day, I picked up a folder sitting on a table. It was entitled ‘Why you shouldn’t vaccinate your children’ and it was jam-packed full of propaganda and scare-mongering and just plain horrible stuff. Rosemary hadn’t had all her vaccinations then, and she wasn’t allowed to go there again until she had. And I wouldn’t set foot in there when pregnant or before Eleanor has had all her vaccinations. And, honestly, the thought of all these people not vaccinating their children makes me uncomfortable about going there at other times.
I feel so strongly about this and I will not keep quiet about it if someone says they’re thinking about not vaccinating, or tells me they haven’t. On most issues I will bite me tongue and accept that people make different choices and have that right. But not on this one.
Tasha, I agree that the media have a great deal to answer for and in the wake of the MMR vaccine debate they should be more vocal about the current view that vaccination is considered safe. But it’s not newsworthy so there’s no incentive
In the US vaccination is mandatory if you want to attend school. I wish we had that here.
Poor William! This is a side to the whole vaccination debate that I don’t think many people fully take on board. Maybe it doesn’t hit home until you have or know someone who has an immuno-supressed child. So thank you for getting the word out. I sweated over the whole vaccination thing, worried and fretted, but it was the memory of seeing first hand what measles and whooping cough can do to a child that helped me make the decision to vaccinate. As for more run of the mill germs and viruses, I’m always grateful when someone rings to say “Little Ozymandias is a bit under the weather – would you rather we didn’t come to visit”. Then I feel bad in case I’m being a wimpy mother. Guilt, the mother’s eternal companion.
I think if more people saw first hand what these diseases can do then they would be more grateful that we have vaccines that can prevent these terrible outcomes.
I always used to offer up whatever germs we were harbouring before going on playdates to be polite but now I have a reason to ask people before we get together. I still feel guilty for asking though!
We have no qualms about the vaccination either. The link between the vaccine and autism is unproven, the research paper that originally proposed it has been thoroughly discredited (references – http://www.bmj.com/cgi/content/extract/340/feb02_4/c655 and http://www.timesonline.co.uk/tol/life_and_style/health/article5683671.ece), and the author (who in terms of research ethics behaved quite appallingly) is awaiting disciplinary actions after the GMC found that he was guilty of professional misconduct.
There are so many reasons to be suspicious of the actions of government – why go inventing them and harming other children (and potentially your own) as a result?
I absolutely agree.
When my eldest was facing his first vaccinations there was so much controversy surrounding the link that I read and read for weeks trying to make a decision. Now the research has been discredited I honestly can’t see any reason to doubt the efficacy of the vaccinations.
I am so grateful for vaccines that have saved many lives. The science behind how these are developed is quite extraordinary, if you ever get a chance to read out it. Unfortunately now that so many parents are deciding not to vaccinate their children, we are seeing a return of childhood diseases that were all but eradicated 10 years ago. I am predicting that the choice to not vaccinate is going to prove out to be a very dangerous one for the masses. I had a long talk with my pediatrician once about vaccination since I have heard so many parents rally against it, and he gave me good science to back up why he supports vaccination for not just his own patients, but his own little girls. And yes, for sure, not every single vaccination is safe for every person. Hopefully one day science can help better determine who will have negative reactions to vaccines so we can protect those people, but for the overwhelming majority of us, vaccines are safe and very necessary for the health of the world’s population. I’m praying that the next few weeks are better for William.
Already in the UK we are seeing outbreaks of measles because of the low take up rate of the MMR vaccination.
I agree that not every single vaccination is safe for every person. Interestingly, Harry had a bad reaction to the first of his baby vaccinations (not the MMR one) so all his subsequent ones were acellular (rather than whole-cell) vaccinations. This can reduce the chances of reacting to the vaccination. This may help a parent decide to vaccinate if they are worried about reactions to immunisations (many vaccinations in the UK are routinely acellular now, but it is worth checking). It’s also the other reason I looked into the MMR controvery so carefully, but I felt sure enough of its safety to go ahead and let him have the MMR shot.
Hi Ella, I am so with you on this one as Ollie ahs the same issues as William. I have a huge problem in that when Ollie was due to have his MMR he was as sick as a dog with a double ear infection and a cold so I wanted to wait to get it done. But then sods law he was diagnosed with NS. Yout hink they would of checked with me before they started the pred to see if he had had that vaccine ( I always planned to do it when he was well ) and given it to him before they started the pred. So I worry a lot about Measles, Mumps and Rubella and also Chicken Pox which is everywhere here at the moment. I do not understand not vaccinating It has never crossed my mind. I mean a lot of these childhood diseases were almost erradicated and now they are everywhere. In Australia the Chicken Pox vaccine is now included in all the childhood ones. Here in New Zealand we still have to pay for it and I am going to get Charlie done in the next few weeks. I have been boosting Ollie’s immunity by giving him Acidophilis powder everyday, along with an immunity mix from the homeopath adn the Chinese Herbalist. I think it helps . I take the gel hand wash everywhere with me, wipe down trollys etc. Ollie is at kindergarten 3 days a week and they are fully aware fo his issues as well. I am not sure of the rules there about vaccination I actually must check. It is not easy for sure these poor kids can not live in a bubble although I know I would love Ollie too just to protect him and keep him safe. So I say VACCINATE VACCINATE VACCINATE to help protect your child and other children who have no immunity and not by CHOICE !!!!
I can’t believe they didn’t check whether Ollie had had his MMR before starting the pred – that’s just shocking.
I am thinking I may get Edward (2) the chickenpox vaccine privately as it would be a big risk to William if Edward gets it. I’m like you, I take alcohol rub everywhere, wipe down trolleys (even had people muttering things like ‘stupid cow’ at me when they see me do it!). Then today, William had pieces of a Easter chocolate hat in school – dread to think of the germs on that, it was uncovered, brought to school by the kid, sat on the side all day with kids touching it and god knows what else – it was just too much temptation for him, but makes me wonder why I bother with all the germ nuking the rest of the time!
I am also an advocate of vaccinations. My then 2yr old daughter caught a form of pertussis ( even though she had been vaccinated) from someone that hadn’t. She was so ill for six months and is still tiny now, nine years later.
I would get the CP vaccine It is a really good vaccine and I am giving it to Charlie not only to protect him but to protect Ollie as well Its $90 NZD here so thats about 40 squids your money but hey can ya put a price on your kids health NAH !!!!
I have a medical background ( Medical Lab Scientist ) I was a firm beleiver in everything the medical profession told me. Ollie’s illness has had me exploring other “complimentary” treatments I am reading the most wonderful book by an Ex Medical Professor called ” The Biology of Belief by Dr Bruce Lipton” it is mind blowing and has made me change my way of thinking I figure I will try anything and if someone said to me if you laid fried eggs all voer your kid to make them well I would be ccoking eggs 24/7 xxx
Sounds like a good book, I’m going to check it out now.
As you know, we are big fans of Galactose – not sure if that’s strictly complimentary, but I definitely don’t put it in the same league as Western medicines like ciclosporin and prednisolone! William has been 1+ for the last few days so I’m thinking it might be time to start Round 2 of it….
We were all set to do galactose Ollie had been accepted on the trial but then getting his blood to the States had to go thru the ethics committee and 5 million miles of red tape I am still keen to start him on it as well. Ollie is also having Osteopathy at regular intervals which I feel helps as well as my husband says ” Whatever floats your boat” Ollie like William has a gene for steroid resistant FSGS We had been in remsission for 51 weeks until 2 weeks ago we had 11 days of 2+ and now we are just 1+ so I am ever hopeful You will love the book I promise Hope William heads back to negative real real soon Jodes xx
It’s about epigenetics! It will go to the top of my mountainous pile of books-waiting-to-be-read
.
We are funding the galactose ourselves because there is no trial here – it’s expensive, £130 for a month’s supply but we plan to do one month in every three – £520 for the year.
I’ve had my fingers crossed for Ollie this week, hopeful you see zero or trace very soon xx
I cannot understand why people don’t have their children vaccinated, I simply don’t get it and I haven’t heard any good reasons, substantial reasons as to why they consider their choice not to vaccinate to be a valid choice unless there is a genuine medical reason why the child cannot be vaccinated. I’m sorry if I am coming across harshly, but, like Tasha, I find the decision to be an incredibly selfish one (sorry Eva).
I wrote a post about this recently as well, you might be interested to read the comments.
http://britsinbosnia.blogspot.com/2010/03/why-do-people-not-vaccinate-their.html
Thanks for the link. It was good to see so many commenters on your post coming out in support of vaccination.
I am having a think now about what steps we can take with William’s school to protect him better from unvaccinated children. Sadly I think the answer is nothing, but I can at least try.
I applaud you for this post.
Thanks Jodi x
Ella, I’m a U.S. reader who recently discovered your blog, and I enjoy it so much! I want to thank you for writing this post. I absolutely agree with everything you said. I do vaccinate my children, but I know many people who don’t. When my oldest daughter was two she contracted pertussis from an unvaccinated child at a Bible study group. Because she was so young and hadn’t completed her full course of the Dtap vaccine yet, she was in a vulnerable position. I was terrified for her, as she coughed so violently that she couldn’t breathe. I kept thinking that if only parents who choose not to vaccinate could see how the illness was devastating her tiny body, they might reconsider their choice. I thank God that she made a full recovery, because the outcome could have been entirely different.
I can’t imagine how difficult William’s illness must be, for your entire family. I will keep you in my prayers.
Yes, I honestly think people can’t picture the possible outcomes of not having their child vaccinated, ie another child being desperately unwell. To see a child so poorly as a result of someone else’s child not being vaccinated is just awful, I’m so glad your little girl made a full recovery.
I tried finding you on Facebook Heather without any success (I can’t leave a comment on your blog to let you know).
I am new to your blog (have really been enjoying it) and just wanted to say how much this post resonated with me. My daughter, Scarlett, has a rare form of congenital heart disease called Double Aortic Arch where the aorta has split into two branches and made a ring around her trachea and oesophagus. This constricts her airway considerably and as a consequence she has been hospitalised with every cold she has had, twice needing to be intubated and ventilated. She is too little to be vaccinated against swine flu/seasonal flu although my husband, my son and myself have all had the jab to try and protect her. I really have to bite my tongue when people make comments along the lines of ‘my child is healthy, if they catch swine flu it will be mild’ completely disregarding the fact that their child may then pass the virus on to someone who is not healthy and whose life may be at risk from it. I’ve found being out and about this winter unbearable as so many people are so inconsiderate about where they put their germs – not covering their mouths for coughs and sneezes and if they do then smearing the escaping virus wherever they fancy! We’ve been avoiding virtually all human contact during the rundown to her surgery, which is this week.
Best wishes to you and your little boys. I don’t know anything about William’s condition – I really hope things start to get better soon.
Pippa, thanks so much for your comment. I’m so sorry that your daughter has had such complications from her condition, other people just don’t seem to understand about germs at all. I really hope she is well leading up to her surgery and that it goes well for her.
Thank you. We are nervous but generally just grateful it can be fixed – they thought it was cystic fibrosis before we received the diagnosis. I read your post about William being in remission after I submitted my comment – you must be so pleased. I too know all about rushing to hospital in the middle of the night and securing childcare (admittedly for only one child) at the last minute or having to entertain a small child in a confined space on a hospital ward! I have read this section of your blog with so much recognition. Truly, all the best for the future.
Hi Ella,
I was just skimming through your blog…this is my first opportunity…and wanted to say I’m sorry that your son (and you all) have to go through all this. You seem to be handling it wonderfully well, though. Kudos to you for not going crazy on your friend
. I had a friend ask me the same thing to me last month–and we don’t even have kids with delicate immune systems–my answer was “we lick trash cans.” I believe that got her attention. Our pediatrician says that kids get sick an average of 10 times/year…multiply that by four kids…people ought to be saying, “wow, only one child is sick?? Well done!”
I wish people understood the concept of “herd immunity.” This is the reason why diseases have been obliterated that were once rampant. It’s because the majority of the population has been willing to go to the trouble and endure the possibly risks of vaccines that those who do not vaccinate are protected. Sigh.
Anyway, I have enjoyed reading your blog. Once in a while, I even have my husband read a bit of it. (For instance, the one about vacationing.) We just look at each other and say, “She gets it!”
I pray for good health for your family during this winter!
~Nicole
Thank you Nicole
.
And yes, the concept of herd immunity is certainly lost on some. I am making it my mission to change that these days
{ 1 trackback }