To want DS to have an MRI(19 Posts)
Have name changed for this as lots of details. DS is 7 months. 6 weeks ago we were referred to see the paediatrician. Since then he has had numerous appointments and tests including 3 cranial ultrasounds. Some things have been ruled out but there are still concerns about his brain and his heart... On several occasions it has been said that if the next tests are inconclusive then he will have to have an MRI but this has so far been left as just a possibility.
I completely understand their reluctance to do the MRI as my DD also had one as a baby and it involves a general anaesthetic and cannot be done at our local hospital. However I am really struggling with the constant uncertainty and the suggestion that we just monitor his development and act if it becomes affected. Currently DS is meeting his milestones...he is also very well in himself. (If he wasn't I'm sure they would have done the test already.) Am I wrong to be thinking that it might be best just to do the MRI?
Also I am trying not to freak out but at the last appointment genetic testing for 'syndromes' was suggested as another future possibility. If anyone has experience of this and could give me any advice about what that entails I'd be grateful too.
Do you mind me asking why he is under the paeds? If he is at the moment developing to normal time scales, I can understand why they wouldn't want to put him through a general anaesthetic unless definitely necessary.
Sadly wait and see IS an appropriate course of action unless there are immediate medical concerns or very obvious difficulties.
My DS2 had brain scans, MRi and genetic tests (he was very floppy from birth and obviously not quite 'right' All the MRI revealed was immature myelination. Genetics that he had a mild abnormality of his chromosomes ..but not a diagnosis. He also had a muscle biopsy which was 'mild abnormal non specific'... so we never did get a proper diagnosis medically speaking (ended up with ASD and learning disabilities and a few other labels)
Incidentally testing for genetic syndromes is just a case of a family history and blood samples... on and looking at you all for 'dysmorphic' features... (some of which may be perfectly normal in your family) Nothing too invasive They usually tests for the well known ones first...and there are a lot.. and sometimes a microarray.
Thank you Medusa, he was referred because of cyanosis in his hands and feet ( and DD has a mild cardiac problem...) whilst there his unusual head shape and size was noticed. It's good to know the genetic testing is not invasive.
Medusa! I'm so sorry, I've just seen your post about your daughter. Thank you for thinking about DS when you've got all that going on. I really hope that she gets the care she needs for a speedy recovery
My son had an MRI at 5 days old, he didn't have anaesthetic, I just fed him to sleep and my husband held his head during the MRI whilst wearing a ridiculous chain overcoat thing. Is there a possibility they could do it without anaesthetic if he's asleep? Waiting for news is literally torture in my experience, I ended up physically pulling my hair out I was so desperate to know what was going on in hospital. For peace of mind I would definitely push for it.
If he is well in himself then I suspect they are biding their timeZ
At any age a general anaesthetic is dangerous but the risk are astronomical in the very young and the very old. They will delay as long as they possibly can.
Yes, for lots of reasons I know it's best to avoid it if we can. But also I am very anxious that once a brain is damaged ( by for example increase pressure) it's not something that can be fixed. I don't want him to stop meeting his milestones or regress due to something that could be treated.
It's also partly about the way I deal with uncertainty which has been a major trigger for depression in the past and while I know that is not a reason to do this, I do just wish we could have some answers.
I haven't found it easy to bond with DS and while I am getting there I am worried this may get in the way. I am very conflicted and finding it hard to speak about it in RL as DH is also struggling and I don't want to give other family members too much until we know what is going on.
If there was increased pressure in his brain there would be some quite clear signs, so please try not to worry about that.
A general anaesthetic in the young is a very safe procedure. The risks are not astronomical. If it comes to it and your baby does need one, please don't worry about it.
Agree with lougle, there would be strong neuro symptoms if there was raised pressure, and they wouldn't be biding their time. That's one less worry for you. (Ds had a ruptured aneurysm at the age of 9, so am a bit of an old hand with neuro stuff, MRIs and angiograms.). I also really feel for you as it's crap for you. But if he's well in himself, that is the main thing.
whereisthelight astronomical ?? What a load of unhelpful cobblers!
Op my DD had an MRI under GA at 8 months old. It was v upsetting holding her for mask induction and feeling her go floppy, but she was well cared for and absolutely fine. If you end up going down that route ask if there are other tests that can be done at the same time to minimise the trauma for them. My DD had lumbar puncture and bloods done.
We have had extensive genetic testing for a seizure disorder and it is a frustrating process. We had karyotype and microarray results within a month, waited 8 months for gene panels and now have results that nobody knows what, if anything, they mean, and another wait (8 months and counting) to see clinical genetics. So don't bank on it giving you answers in any short time frame! We are learning to live with uncertainty and be grateful for each milestone but it is not easy. Hope you vcan make your peace with it all.
Sending you an unmumsnetty hug. I've been where you are with my DS4 who is nearly 3, and you must be so worried. Unfortunately with these things there is a lot of waiting and seeing involved and very few clear answers.
With MRI's unless the baby has delayed development they will need a general anaesthetic from about 3-4 months old. My DS has had 4 and has needed a GA for the last 2. We have done lots of genetics testing too, mostly non invasive. There were some blood tests but they organised it so they did them while he was under anaesthetic already for something else.
Just to butt in again... I was SO where you are now. I was desperate for answers, teetering into PND and really really not bonding with DS2. (He didn't smile til he was 11 months either due to delayed visual maturation and that was awful..no eye contact with him and he just stared past us)
BUT... it gets better, honestly. I genuinely didn't bond at all with him for the first year..that sounds awful now, but I was grieving for the child I didn't have, and seeing other smiley wriggly babies while mine was a limp blob... was devastating to me, and I wanted to know WHY.
He's 19 next month..and we still don't know WHY. And yes he still has disabilities. BUT he walked at 2, talked at 4 or 5, and he became the most gentle, loving boy. And oh so gradually the fog of despair lifted from me. It was a gentle process in the end.. learning to love the boy I had. DH had no such difficulties, and his brother and sisters adored him anyway. He's the hub of our lives now.. his siblings are a doctor, a learning disability nurse and a disability support worker because of him. And he is just himself.. gentle, different, but perfect in his own rainman way
Hang in there...
Just another vote for general anaesthetic not being an astronomically risky event OP. A quick GA for a non invasive procedure like a scan is very safe; please don't let that aspect of things worry you, especially should your clinicians decide that it would be the best course of action. (I was an anaesthetic trainee in a previous life ). Hope you get the answers you need soon.
And another vote for GA not being astronomically risky. Unlike Jeezy I don't have any medical experience, but a close friend's OH is a senior consultant paediatric anaesthetist and operates on babies who are sometimes just hours old. He has been doing his job for over 30 years and says GA has never been safer than it is now. And that they just keep on getting safer as research and technology progresses.
If DS does need an MRI or would benefit from one, as Jeezy says, and will know far better than I do, a GA, especially a light one should not prevent you from going ahead with one.
I would love my ds to have an MRI too. He is neurologically different (severe language disorder/asd) and it has never been offered which I find plain odd. He doesn't quite fit in his dx despite fitting the criteria, and I suspect it is more a case of structural difference or damage. Sometimes I dream of winning the lottery so I could just know either way , which is utterly silly because it doesn't make the slightest difference.
dd has had several MRIs as she had very hard to control epilepsy as a baby and was fine. No one ever suggested it was majorly risky (and I think they would have they scared the be-jeezus out of me with every other possibility).
Ah sorry for my lack of insight on the general anaesthetic, I guess my ds was so young he didn't need one. I just wanted to say I completely relate to what you say about depression being linked in with uncertainty, I think it is the feeling of powerlessness that really sucked me down after ds was born, and the waiting and constant anxiety about him reaching each milestone. I used to have to get someone to verify everything he did - smiling, sucking thumb, crawling etc as I literally had no faith in my own judgment. I look back and wish I could have enjoyed him as a baby more. He was thought to have had a very long series of seizures and had pretty much every test you can imagine, he was also treated for meningitis and had a number of lumber punctures - we were told at one point he had no good outcome. It turned out after we were referred to GOSH that he had a very immature nervous system and the issue was not neurological, he grew out of these seizure like episodes at about 3 months and is now a very verbal, fast and lively 21mo. The neurodoctor at GOSH told me on paper everything looked very bad (he had oxygen desaturation during these seizure episodes and we were originally told his MIR results were bad - they mistook fetal haemoglobon for a severe brain bleed) but what was important and enabled them to make their diagnosis (as well as an EEG) was how he presented as a baby, but we were also told to wait and see how he developed and to come back with any issues. I really hope you get all the answers you need, I wish I had some helpful advice but I just wanted to say that even with difficult diagnosises so many children go on to smash their original outcomes.
Thank you everyone for your helpful replies and support. Maisy I'm so glad you mentioned the lack of judgement thing. I also feel like this most of the time.
DD's MRI was very traumatic as I took her to the doctors as I thought she had a teething issue ( she was 14 months) and I was told she had a suspected 'mass on her brain stem'. After a week in a London hospital she was discharged as they hadn't found anything...and the thought it might have been a virus. She is fine now at nearly 3, except for a - probably unrelated- speech delay. Now I have real problems trying to be rational about small things, part of me thinks I am a complete hydrochondriac and then I took DS to the GP because of the cyanosis ( his hands and feet were blue) and we have found ourselves with possible brain malformations... and being advised to bring him to A&E if he became 'irritable'. Now every time he cries I have a little panic!
Some days I can persuade myself that I know I am lucky that DS is a happy, smiley baby who is now sitting as well as his giant head will let him... (My bonding issues were I think from a 4 day labour which ended in EMCS and reflux\CMPA and tongue tie which meant him choosing the bottle over breast.) and that they are just being thorough and haven't found anything because there is nothing to find... Other days then I think that the luck we had with DD can't last (her heart condition has faded as she's grown and is now a non-issue) .
It is really useful to me that you have pointed out that the MRI ( or genetic testing) aren't necessarily going to provide me with any answers. As I guess I have been getting myself hung up on that being the end of it... I think this might help me stop focussing on that and trying to focus on being there and Enjoying DS. And also being there for DD who is beginning to struggle with me being so preoccupied.
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