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

(203 Posts)
FluffyPolarBear Fri 24-Nov-17 02:28:11

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?

OldWitch00 Fri 24-Nov-17 02:36:31

Are you planning on having other children?
In which case it would be helpful to know. A diagnosis may lead to specific funding but very few rare disorder groups have funding to share with families. Potentially it could lead to preventative health care if a syndrome is associated with specific medical conditions.
It is possible that your husbands lack of acceptance will push her to achieve more, so not entirely a bad thing.
Is surgery an option for her eye?

FluffyPolarBear Fri 24-Nov-17 02:39:22

We have discussed more children but right now we don't have the room in our flat, the finances or time for a 2nd as DD really does take up a lot of time.

Her squint is the one thing I'm not overly worried about. While it looks bad and is very obvious in photos, it's not affecting her vision and she doesn't need glasses at the moment so we've decided to delay the operation as there's no upper age limit for it and we can change our minds at anytime.

Graphista Fri 24-Nov-17 02:57:06

As an ex nurse I have 2 concerns from a medical/practical perspective

1 you need a diagnosis to get the support dd and you need including possible medication/surgery. And for these not to be delayed unnecessarily.

2 even though what you have observed and the Drs have observed so far may primarily be more developmental issues but some developmental conditions also have physical issues that may need to be checked and treated, if you don't know the diagnosis, these could be missed, several conditions also present with heart, spine or organ abnormalities.

Her dad needs to get with the programme to be honest, burying his head in the sand might be easier temporarily for him but it doesn't help your child one iota.

Go ahead without his agreement if necessary your child's health has to come first.

whenthestarsturnblue Fri 24-Nov-17 02:59:42

Firstly YANBU, but I understand his point of view. I have a child who had an obvious physical abnormality when born, that got a little worse as they grew. But they were put into the system straightaway (I am Irish so HSE system as opposed to I assume NHS?) - cardiology, metabolic analyses, MRIs, brain checks, ultrasounds, dermatology etc. etc., 2 years of appointments; had been told by paediatric consultant, 'don't know what it is - but we are looking at x and x and x syndromes (all quite overwhelming syndromes eg proteus, klippel-trenauny etc). Came out clear on all of those.

We had to wait 2 years for an appointment with the genetics consultant and a major gene duplication was found... But it meant nothing to them, there was no literature on it. They requested we enter it into a database and so that is it. My child is almost 8 now, certainly has no mental disability whatsoever, still has some physical marking but so slight that it is not really noticed and has completely outgrown her condition.

I do think you should ask the suspected diagnosis, you are only wasting time otherwise, time where you can prepare yourself for an ultimate diagnosis. Glue ear can affect development significantly, do bear that in mind. Also bear in mind unless it’s a clear cut case, sometimes genetics don’t offer any answers (I assumed they did! and awaited the results for a final characterisation and got none!) It is still in it’s infancy. Eventually we saw a panel of doctors and she was given a condition name, but it is a term only concocted in 2013. She is fine and she has appointments ahead that I keep, but that she doesn’t really need. You should go as far as you can with it, for your child’s sake. He is probably trying to minimise his fears and play it down for his own peace - talk to him again, but push ahead regardless, tell him you always give the small person the best chance in life you can.

FluffyPolarBear Fri 24-Nov-17 03:06:07

I'm not expecting immediate answers, but I'd like to get the ball rolling. If genetics throws nothing up there's other avenues we can look down and find answers there - or it might just be like DH says she's "fine" but I want to know and I'd like to be able to say I did everything I could to help her.

If I went behind his back could he still withdraw consent? What happens if he does? We've never ever been at logger heads like this before, usually we agree or try to compromise.

RosyWelshcakes Fri 24-Nov-17 03:16:07

Op, your DD comes first and foremost in this and if I were you I’d sign the papers and deal with any marital fallout later.

I’m the mum of a child with SN so I do understand the dilemma.

Sprinklestar Fri 24-Nov-17 03:52:18

He needs to get over himself and do what is right for her.

SofiaAmes Fri 24-Nov-17 03:55:21

My ds has a genetic disease (mitochondrial disease) which was not diagnosed until he was 10. For 10 year ds was sick all the time with a slew of symptoms ranging from constant ear infections (missed a ton of school), weird eye muscle issues (struggled with reading), migraines (painful and missed a ton of school), Cyclical vomiting (awful and missed a ton of school) and abdominal migraines (multiple trips to A&E with suspected appendicitis - lots of miserable tests) and chronic fatigue (missed lots of school and mom was always blamed for lazy child). Anyway, once ds was diagnosed and I had a fancy piece of paper with a genetic disease diagnosis, I stopped getting blamed for making my child sick AND he was put on a treatment of supplements that pretty much eliminated most of the symptoms. He felt better and missed way less school AND got support for the bits that still needed support (like eye issues) and needing lots more sleep than a normal kid. Ds' father was never supportive of the testing or the diagnosis, but never was around to help with anything. I have never had any regrets about doing the genetic testing. It has been nothing but helpful at every level. I only wish I had had it available when ds was a baby and didn't have to go through 10 years of hell.

It sounds like your dh is just afraid, but will be there and be supportive when you do get information. Please do the genetic testing. Modern medicine will be able to help your dd and the test results will only be a tool to get that help. Also, the genetic testing is so much less invasive than all the testing that your dd will have to endure to work through all the symptoms of her disease.

CoyoteCafe Fri 24-Nov-17 03:56:48

With a global developmental delay, it's possible that the better medical testing you take to her future school, the better you'll be able to advocate for her in school.

I have a daughter with PDD-NOS (pervasive developmental delay - not otherwise specified). My Dh and I never saw things the same way, never wanted to handle things the same way. He just buried his head in the sand and pretended things were Ok.

I would sign the forms, have the tests, see what happens.

In the end, for our DD, having one parent who handled all this stuff and got her interventions and another parent who saw her as perfect the way she is worked out really well for her. She received tons of therapies, and she had a parent who loved her so much the way she is that she is completely comfortable in her own skin.

This test is very minimal -- pee, poop, and a pin prick. I'd just do it in hopes of having a little more information, knowing that it might not tell you any thing at all.

Your husband will most likely get over it. Mine did.

Gumbubble Fri 24-Nov-17 04:01:50

I personally would want to know (our ds has asd and had genetic testing after diagnosis to rule out other conditions). But if a specific condition is suspect you could discuss with the specialist what the future implications are. For example, is it progressive? Will particular therapies now change future function/outcomes? Will the treatment be different if it is a particular genetic condition? For our ds, the early intervention stage was crucial and made all the difference. Being able to pursue particular therapies because we had a better understanding of what was going on has, I think, made a big difference for him.

Knowing what is actually going on may help get the most effective interventions in place. I also think knowing if its genetic before getting close to any future pregnancy is really important so you can have time to think and plan.

Mummyoflittledragon Fri 24-Nov-17 04:03:49

I am so sorry you and your dh are in disagreement. You’ve got a lot on your plate. You really need support and understanding.

You will need appropriate help for schooling. As Graphista said, your dd may also have physical issues. What if you dd becomes ill due to a physical condition you didn’t know about because your dh refused to get testing? This might be far more damaging to your dd and your marriage. I would go ahead without his consent tbh.

mmgirish Fri 24-Nov-17 04:08:26

That's tricky. It sounds like your husband is in denial about your child. Please be an advocate for your child and find out the cause of the issues. She will benefit from it in later life.

LoveProsecco Fri 24-Nov-17 04:12:22

Knowledge is power so your DD can only benefit from exploring all avenues.

I would choose a benefit to my child over my husband's preference

Ceto Fri 24-Nov-17 07:23:10

Of course a diagnosis won't affect your love for your child, but it will affect the way others deal with her and, in particular, her ability to access the right support. If your husband is saying she may have caught up within the next year, it sounds as if he's seriously in denial. You need to put your daughter's interests first.

Sirzy Fri 24-Nov-17 07:30:12

It sounds like he needs to sit down and talk to the dr. I would be a bit dubious about undergoing testing without having at least a vague idea what is being tested for and the implications of that. If it is more generalised then your dh obviously needs it explaining to him why this may be of benefit.

Of course you should go ahead with the testing but don’t ignore his feelings. It does sound very much like he is struggling to cope and come to terms with things which is fine and perfectly normal

Queenofthestress Fri 24-Nov-17 07:31:43

I had all of this and I'm currently in the process of getting a ECHP for DS.
Having the, genetic testing now will mean that in the future you don't need to do it when she's bigger because that is the first thing the early years practitioner before you get referred to a multi-agency meeting will ask about.
Plus if you have it done then you have a general idea of what symptoms might occur as she ages because not all of them appear when they're young.
Tell your dp to stop being a twit.

Only1scoop Fri 24-Nov-17 07:33:21

What Graphista says

coffeemachine Fri 24-Nov-17 07:35:55

a genetic diagnosis most likely won't change the outcome or provide a cure but you might find it useful to know if there is a underlying genetic cause in case you plan other children. often, these chromosome issues are 'de novo' (new chromosome issues) but occasionally one of the parents is a carrier. This might inform your decision about more children.

also, sometimes certain chromosome disorder are associated with other difficulties later on. Being aware if potential issue would give you the option to monitor for specific things.

I have a child with a chromosome disorder and got tested for all the above reasons.

Dozer Fri 24-Nov-17 07:38:05

Your H is being U and you don’t need his agreement or co operation to proceed.

CJCreggsGoldfish Fri 24-Nov-17 07:44:21

DD has had some genetic testing and is about to undergo some more as the first tests came back clear (they're looking at different genes this time). Fortunately, DH and I have always been on the same page.

I can't help but think the 'underestimating her' comment is trying to guilt trip you into not going through with the tests, as if somehow you just don't have the faith in your DD. The truth is simple though. If you're DD does have a genetic condition no amount of wishful thinking, over estimation, prayer or sticking heads in the sand will change that.

We went through with testing to provide us and DD with answers about her condition, to prepare us all for the future and to just be as informed as possible so any support could be put in place early for DD. It's better to be prepared than playing catch up at a later date.

I really feel for you, as it must be incredibly difficult to discuss with your DH, but I would go ahead with the tests and deal with the fallout later.

CJCreggsGoldfish Fri 24-Nov-17 07:45:30

Also, what's his plan if she hasn't caught up in time for reception? I'm willing to be there isn't one. Xx

JustHappy3 Fri 24-Nov-17 07:50:12

I think you should go ahead. The "she might catch up" comment is a bit telling. Global development delay can sometimes sound like they've just got a bit of catching up to do - when really it's a whole lot more than that. It sounds like he could do to talk to someone and process his feelings. Easier said than done.

GeorgeTheHamster Fri 24-Nov-17 07:52:36

What would I do? I'd follow medical advice and go ahead. But then I always took the lead in things to do with bringing up the kids and still do.

Justanothernameonthepage Fri 24-Nov-17 07:55:37

Is your DH very logical? You could point out that the worst case scenario is her being tested and something is flagged up, in which case she can get the help she needs. Or worst case scenario if not tested is she doesn't get the help needed, and struggles, finding life harder than it needs to be.
But it does sound as though he's in denial and scared and in your situation, I'd go ahead with the testing.

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