Health Anxiety (about child)

[Tcr1987]

Hi

I’ve searched through a few old threads but can’t find much about health anxiety that’s focused on the children rather than yourself.

Since my boy was born (he’s now nearly two) I’ve had very high anxiety and particularity about his health. For various, and some valid, reasons I convinced myself that he has cystic fibrosis when he was very young. Only a private consultation and sweat test could put my mind at rest. I’ve been concerned about Duchenne Muscular Dystrophy from very early on too, as it took him until he was 4 months to just hold his head up properly during tummy time.

My attention turned to me when I was due back to work and became convinced I had MND. At this point I was put on sertraline (which made things worse) and had 6 CBT sessions.

I’m currently beside myself (fixating on his movements and not really sleeping), convinced my son has Duchennes because he can’t walk up the stairs, even with help.

I’ve been labelled with anxiety now so I struggle to get my partner or family on board with my concerns and I feel so trapped. I don’t know what’s real any more and can’t enjoy life or my son.

If you read this far, any encouraging words from those with this kind of health anxiety or those with children who were slow with their physical development would be very much appreciated!

Hi there.

I'm sorry you haven't had any replies. I've actually had a Mumsnet account for a while but hadn't bothered verifying my email address until now ... the reason I am doing it now being that in this post, you have basically described me.

I have two children - both girls - aged 6 and 3. I've always had anxiety, even before I had them, but since my eldest was born my anxiety has been almost entirely fixated on her.

I cannot even begin to tell you how many 'conditions' I have diagnosed her with. It started when she was very small (just weeks old) and I became convinced she had retinoblastoma, a rare childhood eye cancer, as she had a white eye in a few photos. Cue me running off to a private paediatric ophthalmologist after I wasn't satisfied with the GP's assurance that her eyes were fine. She didn't have it of course, but did that stop me? Nope. After that, it was dysphagia (she choked on my fast let downs and had nursing strikes - turned out she had a posterior tongue tie). Then it was mild cerebral palsy. I worried about that until she was nearly two, long after she was walking and talking and doing absolutely everything she should be.

The next 'big' worry, like you have experienced, was cystic fibrosis. I thought I saw polyps up her nose ... turned out it was just her turbinates. What else? Brain cancer, brittle bones, seizures, sleep apnoea, Rett syndrome, amblyopia, neurofibromatosis (that was a really horrible one) - these are just the ones that come immediately to mind, but you name it, I've worried about it. And thrown money at it!!

Other than the tongue tie, which I finally worked out myself and had snipped when she was 4.5 months old, she hasn't been diagnosed with a single one of the conditions I have worried about.

I know that doesn't make it any easier though, when you're living with this shit. It seems like with anxiety like this, and the help of Google, you can convince yourself of anything, no matter how much pain it causes you and no matter how much you hate it. Personally, all it takes is one symptom on the list and I'm sold. It sucks.

The good news is that my anxiety HAS lessened somewhat the older she has got. Now she is at school and I can have a proper conversation with her about what hurts, how she is, how she's feeling, etc. I find it a bit easier not to get totally swept away. It still happens sometimes, though - like recently, I worked myself up into a state thinking she has Noonan syndrome ... she doesn't really have any of the other symptoms, but does (I believe) have pectus excavatum, so of course my mind jumps to the worst case scenario! I've managed to pull myself out of that way of thinking mostly, but some days are worse than others and I look at her with such horribly analytical eyes, which is just the most hideous juxtaposition.

Funnily, I don't worry about her younger sister nearly as much. There were a few things when she was a baby, but I was nothing like as bad second time round. I am not sure why this is - maybe everyone worries about their first born more? Or maybe because I had such difficulty breastfeeding her to start with because of her tongue tie and nursing strikes, I have some sort of mild PTSD-like thing going on? The worst part of me argues that I've got some kind of 'instinct' that has always known there is something 'wrong' with her and eventually I am going to find out what it is, even though deep down I know she is a totally normal, healthy, typical 6 year old girl.

I don't have many people to talk to either as most are sick of hearing about this. I just get 'FFS, SHE'S FINE' all the time ... sure, I get why it annoys them but seriously, if they spent one second inside my head, maybe they'd be a little more gentle with me. Especially when I am fighting so hard to hide this from my children, for fear of them turning out like me, that I'm just exhausted by it.

Do you mind if I ask why you thought you had MND? As last year I diagnosed myself with multiple sclerosis after I started having weird crawling, prickling feelings in my skin, twitching of my limbs, and feelings of general fatigue and weakness all over my body. My vitamin D was found to be severely low due to very extended BF and I am being heavily supplemented but the weakness is ongoing and I'm beginning to wonder if it's just a lifetime of anxiety finally catching up to me.

I'd also like to ask about your son. Did you struggle to conceive? Was his birth traumatic at all? Did he feed ok? Was he ever poorly? Do you have any idea where this came from for you?

Sorry this is so long, I'm just really interested to hear about someone else who suffers with this like I do. I hope you will see this.

Hi

I’m so sorry it’s taken me so long to see this - I haven’t been on here for a while (trying to stay away)! I’m quite taken aback by how similar your experience sounds to mine. Different imagined conditions for my son, but the same intensity and amount!

At some point in my third trimester he measured small on a scan and the anxiety really picked up from there (always have had general anxiety but never about health). I had lots of extra scans and appointments and was eventually induced a week early as the consultant was worried my placenta was failing. Pretty traumatic birth, ended in ventouse delivery and he wasn’t breathing so he was taken straight away for resuscitation. I’m sure there’s an element of PTSD here!

He had a cephalohematoma from the delivery and extended jaundice partly because of it, partly I think because he was small. I was also worried about dysphagia due to choking on my let downs but he was also diagnosed with a posterior tongue tie and we had it snipped. It was then that the projectile vomiting started and he was diagnosed with CMPA, close to failure to thrive. Now that I’m breastfeeding my second child I know I have an oversupply problem and very fast let downs, even 5 months in, and probably could have done things a lot differently with my son! I have barely worried about my daughter yet am still transported back to the same worries about my son at the slightest thing - he might stumble on a walk or I might notice how much more physically advanced other children his age seem.

I think I reached such an extreme point with the anxiety that it doesn’t take much to resurface and for me to spiral. I know exactly what you mean about the analytical eyes. And intuition. It’s very hard to distinguish between ‘intuition’ and anxiety I feel. What exacerbated the problem is that so many of my worries were proved correct, although thankfully never the serious or life limiting ones. I had taken him to the GP many times as I thought he was so pale and constantly picking up viruses. Each time I was told it was a normal part of being a baby and I was given the anxious first time Mum treatment. Thankfully one GP listened to me and he was found to be severely anaemic. Although I’m much better now I so still have the nagging thought that one day he’ll be diagnosed with something.

The MND concern hit when he was a year old. He was breastfeeding more than ever and waking up every hour so I was exhausted. That’s when the twitches started and it didn’t take much to convince myself of the worst. I still have them now, 1.5 years later all over my body but they’re worse when I’m tired or haven’t been looking after myself. I struggled with feeling weak in my hands in particular and now know that it’s ulnar nerve compression probably from lugging a baby around and breastfeeding!

If you do see this I’m happy for you to message me!

Hey everyone. Just wanted to say I am in the same nasty boat with the HA focused on my son and it is horrible!

This has been useful to read, although it’s sad that others have experienced it too. I thought I’d comment rather than start a new thread- how’re things now? Have you found anything that helps? It’s consuming me at the moment and just don’t know where to start in getting help. I don’t want to speak to my GP incase it just invalidates any of my health concerns for my children (which my rational mind tells me wouldn’t happen as doctors are trained professionals!) It’s exhausting.

Sorry to hear you’re going through it too! Happy to say I’m so much better than I was (although I happened to see your reply as I’m on here searching cancer symptoms, sooooo...). My best advice would be to seek help from a GP for your anxiety early on and don’t let it fester. I know exactly what you mean about invalidating concerns about your kids, but that’s the health anxiety talking and not the truth! I’ve started therapy which is really helpful. A mix of CBT and eye movement desensitisation and reprocessing therapy for the trauma I experienced at my son’s birth and a few other experiences. It’s been very helpful in reframing my thoughts. I don’t know how old your kids are but I’ve found making time for me is essential too. Even if it’s just 20 mins in the morning to have a cold shower (which has also been amazing for my mental health) and some exercise. I changed GP’s and it was a great decision. Have now found a female GP, I think that helps massively, who understands and strikes a good balance between recognising my concerns and investigating them clinically. My son turns 3 soon and I wouldn’t at all say I’m out of the woods, and it’s been a long slog to get here but I’m proud of myself for the progress. I’ve had periods during the 3 years of feeling ok and it’s tempting during those times to not recognise the underlying anxiety, but for me it always reared it’s head again. I’m hoping that the therapy and self care will get it under control in a sustainable way. I felt really isolated with how severe my anxiety seemed compared with others so always happy to chat if you need!

Oh and stay away from googling symptoms. It’s the worst!

Hi, I know this is an old thread but I've just been reading through and couldn't not reply as so much of what you have all said resonates with me.

I too suffer with health anxiety about my son who turned 2 in June. It is extreme. To the point where I feel as though I can't enjoy life in fear of him having some deadly illness or what might happen in the future. I dread giving him a bath or changing his nappy because if I spot the slightest bruise or mark on him I convince myself he has leukaemia. This has been a worry of mine for months, I've seen countless doctors and even paid for him to have private blood tests but I'm still not reassured. I'm always afraid doctors are missing something, and don't know him like I do so it's easy for them to say there's nothing wrong. I have diagnosed my son with a number of conditions, a few of which I read up here, neurofibromatosis (because he has ONE cafe au lait spot), noonans syndrome, a bunch of rare genetic disorders and several different cancers. It really is debilitating.

For context, I had an extremely stressful pregnancy with bleeding throughout, of which no one could tell me why it was happening. When he was born they found that he had no red reflex in his right eye (cue retinoblastoma worry) and it was a 2 week wait to find out that my baby did not have cancer, but instead a rare cataract which can be completely isolated, or can be a part of a wider genetic syndrome. So far we have not noticed any more anomalies and he is a typical toddler in every way, bar speech delay, but my mind won't let me believe that he is ok. I am convinced there is something underlying wrong with him, and if there isn't already, there will be in the future.

I flitter between knowing that I am being irrational and it is my health anxiety talking and I need to ignore it, to thinking that it is my mother's instinct that's telling me somethings wrong and I need to listen to it.

I also suffer from this quite badly. Weirdly enough it didn’t really start until my little boy was 1, he’s now 18 months and I have worried most days about him. He wasn’t ill apart from 2 minor colds in his full first year of life, since he joined nursery at 1 year old he has been ill multiple times with various viruses infections etc.

My anxiety started then and has only increased, I now analyse most of what my little boy does all day every day and google constantly. I have been convinced of all sorts. Sometimes I sit and cry about the unknown and that I feel so unable to control anything that might happen in the future. My worry changes from day to day constantly. It’s awful.

@KL92xxxx mine was the same with my son. It didn't seem to start until he was about 18 months. He's 2 and a half now and the past year has just been so hard. I wake up worrying and go to bed worrying. I know exactly how you feel 😞

Coincidentally, 18 months is when he started nursery and also started picking up loads of viruses and infections. He comes home with a new one every couple of weeks

Hello everyone. Sorry I haven't replied to any of these messages until now. My daughter (the one I am always worried about) has now been confirmed to have a spinal curvature. I had suspected for a while, but tried to ignore it as I have been wrong so many times in the past. Eventually I couldn't take the worry anymore and had it checked out.

It isn't proper scoliosis yet, and is very mild/to do with her posture being awful,q but if we do nothing it will probably become scoliosis in the future. We are having physiotherapy several times a week to correct her posture and hopefully de-rotate the curve and prevent it from ever progressing.

She will need to do an hour of physio daily at home after treatment ends until she stops growing. She's just 7. We have a long road ahead of us.

In many ways I feel more anxious now, as even though we are doing something about it, having your fears confirmed makes you feel like whatever you worry about now must have some truth behind it. It's been a terrible few weeks.

I'm sorry everyone is going through this. I'm blown away by how similar our experiences all are.

Hello everyone,

I suffer with this also and my story is very similar to everyone else’s. I completely relate and empathise with what everyone is describing.

These videos have helped me: - there’s a part 2 as well. Also reading a lot on health anxiety, and being more aware of my thoughts and behaviours when it’s triggered.

It is very hard to be rational because this is an illness that lies to you, so it’s easy to tell yourself that it’s your intuition OR that it’s just anxiety and let’s not bother the doctors again.

If anyone can share anything that is useful to them, anything that you tell yourself when you are triggered that helps, etc.

For me what weirdly helped was reminding myself that my child is his own little person but not mine (I’m not religious but for someone religious it would be the equivalent of ‘he is God’s not mine’) and if anything happens it’s my job to do right by him - as in go and get him tested or checked, etc. but not crumble under the weight of the unknown and lack of control. I don’t know why but that thought takes some of the pressure away and makes me feel a bit better regarding what I can control and not control.

Sorry if it doesn’t make any sense, I just thought I’ll throw everything that helped me out there just in case it helps someone else x