DH doesn't want to pursue a diagnosis for DD, WWYD?

[FluffyPolarBear]

DD is 2years 5 months, has a global developmental delay, speech delay caused by glue ear, squinted eye, chest problems and a hip dysplasia (yes I've spoken about her before).

She's a very likable child manages fine in a Private Day Nursery, but attends a lot of appointments.

Finally saw DDs paediatrician at the Child Development Centre for the first time yesterday (23rd) and after a long talk about her, her life, her referrals and her medical history, they weighed her, measured her height and observed her for awhile.

Paediatrician has suggested we start genetics testing to rule out and underlying cause, he says he can't be 100% sure but usually when he sees a child he can usually put a diagnosis on them before the tests are conducted. I didn't ask the suspected diagnosis as I will only drive myself mad googling until the follow up appointment in the new year, but I liked him, I trust that he knows what he's talking about, and I've felt for a while (since she was maybe 6 months old) that she has an underlying condition causing all her other conditions.

I posted on chat a few days ago about DH not liking any of DDs photos from Nursery and during a chat DH said he doesn't want to go ahead with the testing. He says it's not fair to put such a small child through so much testing (initially just a blood test, a urine sample and a stool sample hardly like it's an MRI under General) as she's already had several tests conducted by different departments, it means missing Nursery time which we're paying for and I will possibly need a day off work to take her to the clinic for the tests.

When I dug deeper he said that a diagnosis isn't going to change anything, she'll still be our DD and we'll love her anyway, it won't change the way he or I treat her because we've always treated her this way. He asked me why we needed to know at all?

When I pointed out that this time next year we'll be applying for a school place for her, and we need to know so we can have the right support in place when she starts Reception in September 2019 he said that I'm underestimating her, and she may have caught up by then.

He's refusing to sign the consent forms for the testing, he doesn't really need to as it only requires one parental signature but I feel bad going behind his back about it.

I think, despite what he says, he's struggling to accept DD and that the future for her may look very different to the one we talked about/dreamed about during my pregnancy.

I need to know though, I want to put the support in place for her, get EHCPs if she needs it, get her on any medication she might need.

We need to get the ball rolling and sign the forms by Monday or the test results won't be back in time for our appointment in January, and delaying until Januarys appointment just means I'm worrying and we still don't have answers.

WWYD?

Your DH's point of view was very popular when I was a kid and I get it to a point particularly for those who have been through the ringer for years without a diagnosis. A diagnosis can be quite anti-climatic as it doesn't change things as much as it feels like it should for many and you can get support even without it as others have said.

However, as someone who once an undiagnosed but clearly ill child, not having a reason for back of better wording just made me blame myself and made it quite a lot easier for others to blame me for not meeting standards and expectations. I felt I was just weak, stupid, alienish, failure even when I made progress I could see it was in ways that were not what others were doing. Kids notice these things. Having words others know and reasons made a world of difference to me. I still get fed up with it sometimes and I do not think it would have stopped certain horrible adults when I was a kid, but I'm a big supporter of having as much information about our bodies as possible and for kids to get that information in age appropriate terms.

I would have the tests, my youngest has ASD ( Asperger's Syndrome) . It is scary to have a name put to something but it does mean that if necessary she will get more help at school and maybe throughout her life. Also I found it was better for me and his teachers to know what to expect. Sticking his head in the sand is not really helping your daughter and I'm sure he really does want to do that .

YANBU.

Your DH is being very blinkered at best.

I do understand his feelings to some extent, but if there is an underlying condition causing her symptoms, you need to know for DD's sake. She can't access the most appropriate medical advice or support at school without an accurate as possible diagnosis.

If the testing shows nothing more than the problems you already know about then so be it.

My DS1 has ASD/Aspergers, dyslexia and dyspraxia. As a small child he also had genetic testing - a blood test as you describe. Our paediatrician was not as diplomatic as yours however - he told us upfront that he suspected Fragile X as DS1 has/had a big head! Fragile X is NOT something to sit at home googling! As it turned out, he doesn't have Fragile X, nor any other underlying condition. However, the diagnosis of Aspergers written in a letter from the paediatrician was what enabled us and his school to get funding for the support he needed. He wouldn't have received funding without it.

Of course we didn't change the way we treated DS1. He was still the same little boy the day after the diagnosis as he was before. Your DH is correct in that respect, no diagnosis will make a difference to your love for your child and probably won't affect the way you care for her day to day. What it will do is help prepare yourselves a little for her future and help her access the most appropriate care and support.

It would be better to find out sooner than later, the more knowledge you have the better and the more help you can get.
As a PP said please think again about the squint. I had two, the one in my right eye resolved its self very early, the left eye didn't. I went through years of wearing a patch over my good eye every evening, total waste of time. My parents moved to a different part of the country and within weeks I had the operation aged 8, it was too late for a total for a total cure and I still have problems now and wear glasses for it.
I also had glue ear in addition to partial hearing loss in my left ear again I didn't get grommets until I was 7, the delay did cause long term damage. Speech therapy made a huge difference and I started at 4, my speech is unaffected by my hearing loss and it helped enormously with my reading and spelling at school. My parents fought really hard for me and it made a huge difference.

He’s right in that it won’t change who she is and you’ll love her just as you do now. BUT you will find it so much easier to get the correct support that she needs if she has an official diagnosis. So personally I would push to get one.

Override your H and remember that his wishes come last in the scale of priorities. I remember your other thread, as well: the kindest thing to say about him is that he is struggling with the idea of your DD having something 'wrong' with her, but he will have to either get over himself or get out of the way.

My DS has just been referred to CAHMs - possibly ASD issues. He's 13 and we probably should have done something sooner: your DD is little and needs help and support as early as possible. Best of luck.

This isn’t about him. She needs to know for her future.

He needs to sift through his feelings of having a SN kid, he’s clearly struggling.

DP also struggled more than me with denial. At one point before the doctors acknowledged the issue with DS's hand, he told me to stop asking them about it because it was embarrassing. For quite a long time (until we found out about DS's deletion), I think he thought I was trying to find a problem with DS where one didn't exist, almost picking fault. But I knew, I KNEW, there was something even though it wasn't very noticible. We had rows about it but I went on bothering the doctors and HV until they finally agreed (DS's hand issue got more obvious as his hands got bigger). It's still the case that I go to all the appointments (sometimes with DP too) and ask the questions and do the research. Interestingly once I was diagnosed with the same deletion, the geneticist examined me more closely and found a few things they'd class as borderline dysmorphic features (though different to my sons!). Perhaps I knew there was something wrong because I had the same thing...

You are not being unreasonable, but I do believe you need to get him on board. I can understand and see both sides- ultimately his is correct. This is about being prepared for what, if any, future considerations need to be made for your child. To do it without his consent, will divide you both. Explain calmly the benefits to it. Listen to his objections. Acknowledge his feelings, whilst still getting your very reasonable view across. This is only a small blood test, no invasive testing. Hopefully he can come to realise that. If not right now, maybe have him come to the next appointment so the paediatrician can explain? I know it delays slightly putting things in place, but that would be a small price to pay for ha ing you both united

Frick. I meant ultimately YOU are correct, not DH!!!

I see any reason Tony to do genetic testing.

*I don't see any reason not to do the testing.

Your his-band’s needs for denial don’t trump your daughter’s health. Sorry he is putting you in this position.

I think there are many reasons to pursue a diagnosis. Of course it won't change that you love her, but it might help her in the future. I know you can get support without a genetic diagnosis (the diagnosis of developmental delay should be enough), but I think having information is generally a positive thing.

From a medical perspective, an exact diagnosis could suggest other conditions that need to be screened for, or monitored for in the future. Or perhaps suggest some therapy (not necessarily medication) that may benefit. Of course, it might not reveal anything helpful in terms of her treatment options, as other posters have found. But then you've not lost anything, other than the time spent undergoing the tests. Personally, I'd probably take that risk because I'd kick myself if later down the line it was discovered that if the cause had been known then there could have been something done which would have improved DD's life in some way.

In addition, if you are planning on children in the future, it would allow you to make an informed decision about doing so. I think knowledge about risks of future children being affected is always important- even if it wouldn't affect your decision to have more, at least you could be prepared for the possibility.

I suspect your DH is struggling a little to come to terms that the future is not as he'd hoped it would be for your DD. I think you have to sit down and have a chat about where you go. Ultimately, it's about what's best for DD.

I think you need to do what is right for your DD, and that's being armed with every ounce of information you can have about her. It will affect her schooling, health, all aspects of her life and as a PP said, knowledge is power. He can't stick his head in the sand and pretend this isn't happening. What a lot for you to be dealing with .

How difficult.

However, I would suggest that your paediatrician has given you a big hint. He’s said he is almost always right about suspected diagnoses and is offering a diagnostic test. So he does have a very strong suspicion that there is a known cause underlying here. Not some random genetic abnormality that is virtually unknown as has happened to some people on here.

Your dh is in a difficult place but I would be very tempted to go ahead and say (afterwards) that you are truly sorry but you DDs needs have to come first.

Wishing you all the best.

What they all said. The thing that would tip it for me is that some genetic disorders involve a propensity to have or develop invisible but serious conditions which could be regularly looked for and treated if found - but only if there was a known reason to look.

This is horribly difficult for you.

Just to add another angle, I have a close family member who, as a baby, had some issues, but these were never taken as seriously as they should have been by the medical profession (I won't go into huge details here, but there was a medical condition that was consistently downplayed by doctors).

The issues became more and more problematic over the years, instead of fading away as had been implied, and now my family member is a young adult facing major difficulties, both physical and emotional, as the result of this condition. It could all have been so different if proper treatment had been given years earlier.

You need to have the testing, ASAP. I'm sorry, but your DH does have to grasp how vital this is. If it's being offered, you should grab it with both hands.

As someone going through the slog of getting an educational care plan in place, I’d say the earlier the diagnosis the better. It really is a long process, and if your DD already has delays then she may struggle and not get enough support in those early days at school.

DLA was actually easier than the EHC for us! Long form, but it was processed quickly. Probably because it was a central team rather than our useless council.

I would call and ask to speak to nurse at child development centre and explain situation. You won’t be first in this situation where a parent is in denial or unable to deal with situation. The child development centre my dd went to had lots of different staff there must be someone who can speak to you and Dh. I wonder if he doesn’t see as much of dd with her peers as you eg if you go to toddler groups etc
Mine has a physical disability. I was other way trying to get ball rolling early and trying to get things in place just in case. As it turned out she was fine and didn’t need a lot of extra help but it was reassuring knowing ball was rolling. Things take such a long time.
You want to make life as easy for her as possible when she goes to school. She might be fine now in a small nursery with good ratio of staff. 1 to 30 in school is a whole different ball game. I wonder if there are any School open days he can go to. Seeing the big classes and set ups eg needing to go to toilets down corridor may make him realise that getting a diagnosis and support is necessary.

I'd do it anyway, but can't imagine it would be a discussion in our house.