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?

zzzz fully agree I was trying to think how to word the same but I fully agree I do think the dh is getting a very hard time.

I don’t think questioning things is wrong at all. Ds has had a lot of tests for various things over the year and I always question the necessity and what is involved - personally going into any testing with no idea what they are looking for doesn’t sit comfortably with me at all - everyone approaches things differently though

All those saying you don't need an EHCP to get support and the school will meet the child's needs are right theoretically, BUT with school budgets being cut and cut it is becoming increasingly the case that only the children with EHCPs are getting support.

Bear in mind that a school cannot turn away a child with an EHCP. Therefore it goes without saying that a child without an EHCP who needs a lot of support could be turned away by a school who do not have the resources to meet their needs.

if you and your husband decide not to pursue diagnosis for her when its clear there are issues at such a young age, then you will be really letting her down. A diagnosis makes getting support so much easier for everyone. You might think its not crucial at 2 years old, but she has to get through school, and then secondary school.
She will need a diagnosis or things will be much harder for her

I think more people are saying you don’t need an diagnosis to get an EHCP rather than you don’t need an EHCP to get support. The good thing with an EHCP is (in theory...) it guarantees the support

ultimately, a dx won't change much. I have a DC with a genetic dx as well as autism and LDs. We get help at school but are left without any support otherwise (apart from some DLA). We get no therapy, no behaviour support, no respite, no nothing. Just an EHCP which of course helps at school.

but the reality for parents of children with complex needs is, that our DC are often discharged after DX and we are left to struggle alone.

people with typical children. always assume that support is there. it is not. nothing. Nada.

Rant over!

Yes sorry Sirzy you are right I just read back and realised that!

I'm sorry you have to deal with this, worrying about your DD is enough without feeling you and DH can't work on things together. I don't have any knowledge of the testing or what they might show but I do have a child, now grown up, who had a bad squint. I was told the sooner it was treated the better as the eye with the squint will "turn off" to avoid confusing messages ie double vision. My son was treated with patches, bifocals (a 3 year old with bifocals is a bit of a surprise to many people) and exercises. By 10 his eyesight was perfect and 30 years later it still is.

I found having a squint did affect how people reacted to him, people said they felt uncomfortable as they never knew if he was looking at them.

I know every situation is different but just wanted to share my experience. I hope everything works out well for all three of you.

IMO the dh is getting an unnecessarily hard Time here and people are over-estimating the impact of (another) diagnosis.

I speak as an adult with condition the source of which has been undiagnosable, but is rare enough that they push at every opportunity for a diagnosis, not to gain me help but to satisfy their own curiosities and have a name to add to their stats. And if I'm honest, has held back treatment for another condition I have since developed "oh, this can sometimes be related to your other condition so we'll just do some more testing for that and refer you to somewhere else to see if we can get a diagnosis," and meanwhile I have a life-limiting illness they are refusing to treat and which will probably kill me before they have finished their curiosity mission.

Bottom line is you know your DD has GDD, you know she has eye problems, you know she has other conditions. One blanket name isn't going to change that. I'm with your DH.

I have a very rare DS who is now 8. In the early days DH was very much...he doesn't need that, he won't need that. As time goes on and he accepts that DD has extra needs...he will come to terms.
Regarding genetics,you need to know. Although it won't change your DD it may help direct you in terms of treatments and help explain behaviours and direct her learning. My opinion has always been ...I need to know because if I don't then I can't help DS.
If you'd like to pm me ...I'm happy to chat ...this is all about your DH not accepting DD issues.

Sorry I haven't read the whole thread, but as a GP if both parents were taking this attitude I'd be doing a child protection referral. You are, of course, totally in the right.

A parent questioning the need for specific testing would lead to a child protection referral? surely questioning things is normal for parents especially if they can’t see the benefit at that point.

A child protection referral? What a crock of shite. The child already has multiple diagnoses just not a blanket one.

The DH is doing nothing wrong. The OP isn't either but a diagnosis isn't going to be a magic wand.

Section 43 of the Children and Families Act 2014 says that all schools, must admit a child if their EHCP names the school.

Hiya....it’s not a long thread READ IT!!!
Genetic testing is always optional.

From this and your previous post it sounds like your DH is having trouble accepting your DD's issues and is in denial. It's not just further testing that is the issue, he doesn't seem to have come to terms with her already diagnosed conditions if he didn't even want photos that show them. His attitude really shouldn't be allowed to affect her health care or educational provision which could be assisted by a diagnosis. I understand that he is probably worried about her not being able to achieve and experience some things in life that he had imagined for her but early diagnosis and support could help her to achieve her full potential in life so it's counter-productive to avoid that because he doesn't want to accept it. I'm sorry if I seem insensitive as I do understand it's a lot for him to take in but I think you need to know as much as possible about her condition so you can help her and be aware in case it affects any future children.

I understand a diagnosis is a shock and difficult to handle. Any news that brings a change to the way you thought your life would pan out is deeply shocking, and can require a long time to adjust. But the issues won't go away if your DH buries his head in the sand, ostrich-like. Your DD will still have the same issues - she'll just not have an explanation, or any access to relevant medical or educational support. And that support might be really quite different from one condition to another. Furthermore, there are charities and support groups for particular conditions that would allow your DD to meet and speak to others in the same boat, which could be very helpful in ensuring she doesn't feel isolated by the things that make her a bit different and all the more special for it.

I'm sorry that other parents wren't offered more support after diagnosis but I will say that my son did get lots of extra help after the diagnosis of ASD. He did see a speech therapist, occupational therapist, paediatrician as well as having a teaching assistant to offer more intensive help at school. Oh and there was an autistic outreach team who offered even more advice/help /intervention and were particularly great in mediation with the school when things went wrong .I think without the specific diagnosis he would have had more meltdowns at school and struggled to the point of having an exclusion from school. My only regret is that he could not go to a school specifically for children with high functioning autism as I think that would have been a better fit. As you can tell, I believe a better diagnosis always helps.

Regarding genetics,you need to know. Although it won't change your DD it may help direct you in terms of treatments and help explain behaviours and direct her learning. My opinion has always been ...I need to know because if I don't then I can't help DS.

This!
She might need targeted help. We've used my DD diagnosis to spell out what might happen without particular support. She has (amongst other things) passive autism - this can mean that the individual is easily led and therefore vulnerable to getting in to situations she doesn't understand or is uncomfortable with. So one way we and her school are trying to support her is building her confidence with speaking out when she doesn't like something and having her feelings validated. Without a detailed assessment we probably would never have thought to do this until much later in her life.

GDD is such a catch all I don't think it offers enough detail to be helpful in many cases.

As I said earlier if she has a genetic difference you might simply end up on a register somewhere for now - but genetics research is obviously developing and who knows what help/support/understanding they might be able to offer for her future.

But as the OP doesn’t actually know what they are wanting to test for she can’t make a call on whether it would be useful in the future any more than her DH can. It would seem both of them are going into this blind as to what they are actually looking for

*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?*

So his ostensible reasons for not doing the test are:

• no positives to the test (It won't change anything)
• there are negatives to the test (missing nursery, missing work, having blood taken)

Much has been said already especially on potential positives to 'knowing', but I think nobody has mentioned (may have missed it) that having this one, not very intrusive test now, may well prevent a whole lot of future tests, some of which might be a lot more intrusive and time-consuming. Can you point out to him that not having a diagnosis has not prevented her, so far, from having to have a fair number of tests? Presumably you must work on the assumption that more health issues might very well crop up. Lacking the knowledge of the underlying cause for it, any new 'symptom' will need investigating. Then the next symptom too. And the next. And the next. ... Whereas if you do get a diagnosis now, which is an 'if' but as PP has pointed out, the consultant seems pretty confident... then you might save yourself and her a large number of future diagnostic tests and investigations. So if saving your DD tests and investigations is your DH's motivation, then by this logic he should be pushing for testing and hoping for a diagnosis.