To feel like I regret IVF....

Two IVF babies here. DD1 was a very difficult baby. Barely slept, hated napping, wouldn’t look at anyone else, didn’t crawl and was constantly squirming with annoyance at everything. At one point, between the ages of 12mo and 20mo she would simply scream at the top of her lungs in any kind of social situation, even in a shop.

She’s 4yo, at preschool full time and is a happy, friendly, intelligent and kind. Not a trace of neurodiversity.

I say this with kindness, but please get your own mental health checked out. Infertility and IVF are brutal. There may well be something there with your DS, but equally this could be a situation where you’re spotting all the ‘signs’ due to PNA or similar.

Ah OP, my heart goes out to you.
I've been where you are.
I was diagnosed with FND as an above poster linked to. It was very scary at the time, and MRI showed only normal 'age related' changes... menwhile I had several months when I couldn't walk, my speech was slurred.. everything was wrong.
My baby was also 'wrong' he didn't smile, didn't hold up his head..was diagnosed with hypotonia (he was floppY)_ delayed maturation (no smiles) etc etc. I was convinced he was autistic.

As it happens I was right, he IS autistic. But he's also kind, funny, awesome,. He didn't talk til he was 5, walked at 2 ish, went to special school... yet he now has a full time job, he's loved and loving.

I had severe PND with him, but when the fog lifted I had a smiley loving little boy.

Hang in there!

Hi

Do contact this organisation https://www.mndassociation.org/

They can talk through about the diagnosis process .

Hopefullt you don’t have MND , but they can still talk to you about the process of diagnosis and getting tests . If it is , there is lots of support they can offer.

Hi OP, I haven't read the full thread, but have read your comments. I've been in a similar place to you, in several ways. I experienced severe neuro symptoms, something was very wrong and I/we were convinced I had MS/MND or other serious condition. I was tingling and buzzing all over, my arms and fingers were twitching and moving strangely, my legs weren't working properly vision/balance affected, exhausted etc. After nothing showed up in MRIs/CT scans, it turned out I have Functional Neurological Disorder. Has your neurologist considered that for you? It causes very real physical symptoms (like yours) but there is no underlying physical cause that can be seen on a scan. I'm expected to make a full recovery, and am nearly there. It can be triggered by stress/sleep deprivation/illness/injury etc. I just thought I'd mention it just in case it sounds like a possibility. Anxiety and fear run through your posts so clearly. You sound just like me when I have had episodes of health anxiety and depression. I think if you can improve your mental wellbeing you will more hopeful for the future. I have a child with significant SEN, and I can tell you that for me, the worry and fear about the future has always been so much harder and more frightening than the actual reality, which is that we are a happy loving family and my child is perfect just as she is. I hope you feel better soon x
https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/functional-neurological-disorder

Hey ! I have been a longtime lurker on mumsnet for years and your post prompted me to finally create account.
I so so appreciate your post even though it seems mean to say becaUse I know you are having an awful time but it is because you're baby sounds exactly like my 6.5 month old to a T and I have been eating myself alive with anxiety about it pretty much since he has been a newborn so you are definetely not alone! I have been in bits with excessive worry about him and autism and have spent an embarassing amount of time on google and mumsnet trying to seek reassurance about his behaviour only to end up being even more worried.

We struggled but were lucky enough to eventually conceive and did not have IVF. However did have progesterone pessaries until 16 weeks and I have also been convincing myself this is the reason for these traits so I think if you are prone to anxiety you will always find a reason to try and blame yourself.

I have found it extremely extremely tough to cope with my son's demeanour pretty much since 3 days old between 18 hour days of wailing crying, hating being held or cuddled, always squirming away, being very agitated with feeds, wriggling his hips, slapping his hand against me, pushing thr bottle in and out his mouth repeatedly, crying being put down, crying being held, crying trying to play, crying at every mum and baby group we try to go to, crying in car seats, prams, pretty much everything other than walking around with him outward facing and showing him different objects. I feel sad when relatives or friends try and interact with him and he gives very little eye contact and shows no interest in people whereas a lot of the babies I see are trying to engage with people and smiling a lot etc. Feel the most pain that he is also like this with me (apparently his whole world from all the books articles etc) but seems to reject all physical contact and affection even since a newborn and dislikes it with a passion and that I struggle to feel a connection because I find I am walking around most of the day knackered from constantly trying to pacify a very unhappy baby.
Sorry to go on and on about my own situation but I have felt so stressed about it and have not had any of the additional stresses you have had with your own health so you are a very strong person and your baby and husband are so lucky to have you in their life.
I know it is hard to think like that when everything feels so negative. I have frequently been told I sound like I have postnatal depression but I often think it is the chicken and egg theory and quite honestly would defy anyone to not feel depressed when they feel like their baby is chronically unhappy and not meeting milestones etc never mind having additional health scares like yours3lf. However I think with all your stresses and worries it can turn into a negative spiral of thinking and can perpetuate further negative thinking until everything becomes confirmation bias and then it's hard to just be and see your baby for a unique little person and not a diagnosis.
Quite often I find that when I try and pull myself out of the negative anxiety spiral that my son seems to in the next few days surprise me and perform a task I convinced myself he wasnt going to do "normally" etc and I dont know if it is genuine coincidence for that I just coulsbt see the wood for the trees prior to that because of my worrying etc

It sounds like you have a lovely supportive husband and I'm sure your baby is amazing and I think sometimes trying to tell yourself it's your baby's little quirks is helpful unless a medical professional advises they have concerns etc.
I also play the song "dont worry be happy" frequently to try and calm me and my son down on very bad days and the simple line "In every life we have some trouble but when you worry, you make it double" helps to ground me again.
And please please dont regret IVF. I think how amazing that you wanted your lovely baby son much you put yourself through all the stress and hurt of that process to get them and just shows they are more loved than anything.

OP sorry things are so hard. Maybe your son will turn out to be on te spectrum, just as likely or more so it's your anxiety deceiving you.

Whatever happens, please don't guilt yourself. You have done nothing wrong, lots of women have healthy babies after Ivf.

You have a lot on your plate. You can't change the past, focus on what you can do now to cope. Fwiw I have a half brother on the spectrum - first sign was refusal to look at people as a baby - and he is now living independently and quite OK.

I hope all the replies are helping you feel better. My daughter was born after multiple rounds of IVF. She was born with a (randomly occurring) rare genetic condition that completely changed our lives. I really struggled with the feeling that I had caused it by pursuing the IVF (even though the geneticists told me there was no connection). I also struggled with feelings about how unfair it was that I didn’t get the happy ending after going through so much to have children. It took a while but those feeling subsided. Life is not without its challenges, but I love my daughter beyond measure and we are happy. I wish I had known that in those early years. Stay strong. Whatever happens you’ve got this.

Oh sweetheart, please do not give yourself a hard time. Sending you some love xxx

To note, my PPA & PND drove those thoughts x

Hi mama, I had similar concerns with my son when he was 6 months. He doesn't like eye contact still at 4 years old but does not have autism. Happy clever 4 year old.

Oh bless you OP 💐

I commented on your other thread and I'm really glad you are getting tested privately - more than anything I hope they will be able to rule out MND for you, I kind of understand how terrifying it must be to await those results as my darling sister in law was diagnosed with it a year ago.

I hope I'm the meantime you can take some comfort in the fact that you have a wonderful healthy baby with a loving husband....oh and loads of strangers on here who are all rooting for you x

My experience with a difficult birth that resulted in potential brain injury to my DS was that I found it incredibly difficult to enjoy the first year of his life while I waited for him to be old enough to be assessed in a meaningful way. The doctors would unhelpfully either shrug, say yes he was clearly struggling, or yes he was clearly fine, which was awful. In the mean time I drove myself crazy googling everything I could find, and jumping to the worst case scenario every time. It didn't make bonding with him harder, it just meant that I had a lot of anxiety all the time and was very pessimistic about the future. I had therapy for general anxiety which helped a bit but PNA isn't really addressed or supported in the same way that PND is, in my experience.

There really isn't much you can do at this stage to evaluate his development, as there is such a huge range of normal and autism and other developmental issues aren't assessed until key milestones haven't been reached, typically after a couple of years. It is very difficult to ascertain a baby's development at 6 months. But even if your little boy has a developmental delay, he is still your wonderful little boy. It sounds like your bond with him is strong, but you're struggling to be in the moment with him because your anxiety is standing in the way.

I also have a neurological condition which can be life limiting sometimes, but I have tried to come to terms with the idea that my life was always going to turn out like this, and to relinquish control over it, which helps with the anxiety. You sound like you've had so much on your plate that you aren't in a position right now to fully enjoy time with your new family, which is totally understandable. I hope you find peace as time passes, and that you find a way for your anxiety to hold less of a grip on your life xx

My son was diagnosed with ASD at 3 and I had zero concerns at your sons age. My son was developing wonderfully so please don't worry. Nothing concerned me until he was 14-16 months. If IVF was going against 'a greater will' why has science given it to us? Because people like you was meant to be a mum. That's why. Don't beat yourself up over that.

Sending love and sympathy OP. I just wanted to add one small thing - I too had progressively weakening joints/ligaments after my first child. It started in my ankles, and progressed to knees, hips and wrists and I found it really debilitating and upsetting - after loads of googling I found out that some of the hormones from birth (which make everything stretch and loosen) can linger and have effects on your ligaments for months afterwards - though it’s all chronically underesearched and they don’t know much about why. No treatment, it just gradually gets better. That’s then what happened to me.

I was going to suggest an osteopath, if you haven’t seen one? If you happen to be in London the Osteopathic Centre for Children treats mothers and babies side by side. I went with both my kids - for a long time with the first one who had more issues - and they were wonderful at treating him. They treated me as well alongside my second baby, and it was amazing - wish I had done that with my first as well. Their kindness and calm good sense also REALLY helped calm my anxiety.

I’m so glad you’ve found the support here useful @Wobblyheart - it can feel very lonely after ivf as you feel you’re not allowed to complain about anything because you’ve got the thing you always wanted.

I still felt like an imposter after I had my DD. I clearly remember my mum turning up to visit and I just cried in her arms that I obviously wasn’t meant to be a mother as I was finding it so very hard.

You’re in the thick of it at the moment but it will get better, I promise x

@wobblyheart I have a family member with MS and I became convinced I had it after intense episodes of numbness and tingling in my left leg. I also developed eyelid twitching, intense nerve sensations in my face and, loss of grip in my hand, muscle twitches, a burning and itching sensation inside the body and dizziness - all MS symptoms. Some episodes were so bad we had to call an ambulance. I subsequently had a brain and spine MRI at the request of my GP and both came back completey clear. My neurologist chatted to me for a long time about how I 100% did not have MS and yet my health anxiety was so bad at this point that even that was not enough to convince me. I eventually got so bad I had a breakdown. After investigations, I was told that after living in a constant state of severe anxiety, I had developed a hyper sensitive nervous system, caused by raised cortisol levels from prolonged stress. Its a completely benign condition that often resolves itself when anxiety is under control. I have been on anti anxiety medication for a while now and am addressing my issues and lo and behold, my symptoms are subsiding. It terrifies me the amount of damage I was inflicting on myself. Please don't stress - with all clear tests, it does sound like you could be in a similar position to me and I would like to assure you that you will feel better. Who knows what the future holds for any of us, and I know first hand how awful health anxiety is, but all we really have is now. Feel free to PM me if you need a chat - I know how scary it can all be and also know how our bodies can play cruel tricks on us when stressed. Sending lots of love and best wishes to you xx

Who mentioned MND? In my experience, suspicion of such a devastating disease warrants pretty much direct admission into the nearest neurological centre for a full work up. Not being left to pursue a private diagnosis weeks down the line. Did a medical professional directly tell you they think you might have MND?