It’s hard to write this post, because I realise that I sound ungrateful and resentful, and I do know, that there are other people, families and parents out there going through far worse, than what we have experienced. I am not very good at expressing myself verbally, so I am writing it all down, in the hopes that I will get it off my chest, and then I can move on!
I am angry, that it has taken 2 YEARS to get a diagnosis, of glue ear/chronic mild ear infections, that have caused my poor little boy so much pain, and discomfort. I am angry that health visitors, GP’s and other experts fobbed us off, telling me he was “just being a difficult toddler” and that no one picked up that there was something wrong, even when I mentioned his ears being an issue.
I am angry that the NHS would have either closed his case, or put us to the very end of the queue, because according to their tests, his hearing and speech are ok, and he doesn’t need grommets for that, even though he clearly is in discomfort, most if not all the time. I am angry that we have had to use our limited private insurance, to see an ENT specialist, who within minutes, had explained to us that Small Boy is a classic case, that all of his issues, being so high needs, easily irritable, lots more tantrums than normal, clingy behaviour, anxiety in crowded and noisy spaces, and meeting new people, as well as his terrible sleep are explained by the fact that his ears are basically causing him to feel pain and discomfort like you feel when on a plane and the air pressure changes, and you cant get your ears to pop, ALL THE TIME and has probably felt like this for at least a year, if not longer, tracking back to his first ear infection at 6 months old and that a simple, painless and quick surgery, will solve all of this and that he should have had this done months ago. I am angry that at his 2.5 year health check, the Health Visitor basically told me that she was more worried about his weight, and his BMI (which in fact was inaccurate, anyway, because she got his height incorrect) than the fact that we had not got any sleep for over 18 months, and that I mentioned his ears being a possible issue, and she fobbed me off, because he didn’t fit the “criteria”, when in fact, if she had listened to me, and looked into it, she would have found he did. I am angry at myself for not pushing harder, at that appointment, and for not realising sooner that it was actually something simple we could have sorted more quickly.
I am angry, that according to the NHS, his hearing is fine. When in fact, it isn’t. According to the tests he had yesterday, he is like me, and in the 1% of the population, who has beyond excellent hearing, and can hear sounds others can’t, so he has been compensating, and his hearing appears normal, when in fact for him, it is sub par. When he does have his grommets, or the fluid is cleared, he will struggle, because he will be able to hear so clearly, and it will take him time, and us patience to help him to learn to deal with his amazing hearing, so he doesn’t become overwhelmed. I am angry that he will likely need some help learning to break habits and learn to cope with normal hearing and not being in pain, and will have to learn how to deal with groups, crowds and being out of control of his environment, something he should be able to manage by now, at his age, but because of his ear issues, is behind in, and will need some support at nursery.
I am angry, that I have to take his dummy away, because it is actually making the fluid build up worse, but that I can’t explain or get him to understand why, that he can’t have the only thing that comforts him and relieves some of his pain, when he sucks it (think of sucking sweets on a plane, to help your ears)
I am angry, that people judge my parenting, question my/our medical decision making process and keep suggesting we put things in his ears, or seek non medicinal help, when clearly, we have thought about this option, and have done everything else we can, and feel that this is the best thing for Small Boy.
I am angry at the people on the bus, this morning, who decided I was a crappy parent, and not “controlling” my toddler, who was tired, upset and frustrated because he can’t have his beloved dummy and at the bus driver who treated us with so little compassion and under standing, despite apparently being a parent himself.
Most of all, I am angry at myself, because I feel like I have failed my little boy, that some how, I should have gotten this right, and figured it out sooner, and got him the help he needed, faster.
I will calm down, I will be fine, my anger will ease, and I will get on with life, but today, I am mad, hopping mad, and I am not suffering any fools gladly.
Thank you for reading. Please think before you comment, I am not in a place to hear suggestions for his ear treatment, or thoughts on what we should do instead of grommets.
Whilst I can’t begin to understand or imagine what you’re going through I certainly have empathy for you. When L was a baby, from the age of about 6 months she would periodically projectile vomit, to the extent that our paediatrician in France had her undergo a whole host of invasive tests to find out what was wrong with her insides that was making her do this. 18 months, and no conclusion, later during a paediatrician check-up I asked whether this could be linked to her teething. It turns out that this is not an uncommon side effect of teething, too bad nobody picked up on it until her last teeth were coming through, and too bad she had to go through urine tests, ultra sounds and much more for no reason.
Sending you virtual hugs and hoping that the light at the end of the tunnel starts getting bigger now.
Thanks. I guess no system is perfect, is it and they either get it really right, or really wrong!
I absolutely feel for you. No mother wants to feel like they failed their child, and you DID NOT. You pushed hard, and you kept on raising the issue. It took time, but you have gotten the diagnosis, and all I can say is a slightly trite-sounding (but in no way meant) “this too shall pass”. My husband had awful ear issues as a child as well, and now it is almost a family joke. For all those people who judge, who are not empathetic, who are not patient – karma is a bugger. I hope that you all and especially your boy get some peace soon. Good luck.
I had a similar case with my now 10 year old. It took years to find out whey he was vomiting so much and choking. They checked him for all sorts of stuff but wouldn’t listen to me that it was his tonsils that were the problem. I couldn’t get him referred to the hospital ENT at all until one day I lost it at the fourth GP who said no – they did finally send up and the consultant took all of 10 seconds to realise he had kissing tonsils, ie he didn’t have the space at the side of his throat where tonsils rest for food to be eaten and he’d spent years choking on the food trapped by his tonsils. Once his tonsils were removed, the choking and vomiting stopped. I don’t have to say that none of the GP’s apologised.
you have every right to be angry honey they let him down! xx
I really feel for you. The NHS can be a difficult place as I have experienced for myself and sometimes you have to shout to be heard – which shouldn’t have to happen. You are the one best placed to know what your child needs, they should support this. Thank you for linking to PoCoLo – I hope things have calmed down a little for you xx
I know. The NHS either gets it really right, or really wrong, I think. Having worked in it, I know sometimes the system fails and people slip through the cracks, this is my first time experiencing it as a patient or mother of a patient. Things are calmer, I am less cross, and the Otovent device we have to use until June seems to be helping. He is sleeping better and not complaining of pain. We shall see what the ENT says in June! Thanks for linky, I am really enjoying reading all the other blog posts! 🙂
I hope it all gets sorted quickly for you and he can start adapting to the world as he should hear it x
Thanks. Hopefully in a few weeks we will see the ENT and if grommets are the solution, we will go for it. Poor boy, it has been a long time getting this sorted out!
Hello. I’m Emma from over at LIFE AS IT IS. I have logged onto your site in a bid to get to know you as we are sharing the baton for Emma Day on the 3rd June. I was having a mooch around your blog, when I first read your intro, and the writing about your 2yr old son immediately struck a chord as it reminded me of our 20month old, Sofia. She is my shadow, the light of my life, bright (we think), and all as u say, but, she is also exhausting, screams loads, tantrums loads, is rarely settled etc. Anyway, I won’t harp on. The fact is there was a link to you, in my first moment on looking. A shared pain. And it is pain…
This post is truly painful to me. Particularly the paragraph, “I am angry, that I have to take his dummy away, because it is actually making the fluid build up worse, but that I can’t explain or get him to understand why, that he can’t have the only thing that comforts him and relieves some of his pain, when he sucks it.”
You have every reason to rant. I am so sorry to hear this, your poor little boy. I hope now that you can get him the relief he requires. And the relief that you also require. Keep cuddling him. And I look forward to getting to know you more through this lovely site! If you have any thoughts on doing a joint thing… separate thing… or anything for Emma do let me know. It is scaring me a bit as I am such a techy twit!!!
All the very best with that dear wee boy x
Thank you so much! I appreciate you popping over and commenting. It is hard, isn’t it, when we have to fight that bit harder and parent when our little ones need extra and it does hurt. Hugs. Having a high needs little one is tough, and I don’t think anyone gets it until they have been in that place.
I must confess, with ENT and stuff this week, I have not got down to looking at what I was going to do for Emma on the 3rd, other than I was going to ask people to post a story about themselves, that was embarrassing when it happened, but is now funny enough to share, to try and make her laugh and cheer her up. I am also a bit of a techie twit, but hopefully we will figure it out. I was planning to make sure I mentioned your blog as well as mine, when doing the linky and we can promote the whole thing. I am sure it will be ok (says she, clutching a glass of wine!) If we need to chat, my e-mail is thereekies@yahoo.co.uk