Not sure where to post this - chronically ill child causing problems to relationship and to parenting doubts

[strawberrycornetto]

Wasn't sure whether to put this here, in behaviour, relationships, or chat...

My DS has been ill on and off for 14 months (he's 22 months now). He's just about do have a second round of tests done at GOSH (6 tests, 3 of which sound quite unpleasant and another of which involves sedation) and its all very stressful.

I have found myself increasingly worried about his health. I know I now worry as soon as he gets sick but often when I am worried I am proved right. I am finding it very hard because my DH's reaction is to play down everything. He has an "innocent" explanation for every symptom. So if he cough until he's sick, he says he has put his fingers into his throat, or he has a temperature, DH claims (falsely) we are all ill and its a cold.

I suspect the truth is somewhere in the middle but I know DH understates DS's health problems as his way of coping. This is fine for him but he makes me feel like I am a hypochondriac on DS's behalf, and paranoid and when I am worried he doesn't support me because as soon as I raise any comncern with him, he comes up with his innocent explanation and refuses to talk about anything else. I am led to believe this response from men is quite common - has anyone else had this experience and, if so, how did you cope with it?

Also, I am worried about him being ill impacting on the way DS is brought up. I don't want him to be treated as if he needs sympathy or special treatment and I don't want him to get extra attention at the expense of my DD but I am afraid both of those things are happening.

I am generally feeling so anxious about it all and getting it wrong. Help!!!

Strawb - I'm sorry that you have worries about your ds. My dd has a long term health issue and in the early days it did affect the relationship between myself and my dh. In fact whilst we were in ITU one of the nurses had a chat to me about it - even then she could see how different we were in our coping mechanism and she gently pointed out to me that it can split families in the long term. I was on red alert pretty much all the time; he seemed switched off. I'm in the camp that needs to know everything in order to cope; all the details of the tests, what drugs do what etc etc. dh preferred to trust the docs and (I felt) hand dd over to them regardless. It definitely caused friction - probably more on my part than his.

I think I felt that deep down his lack of concern mean't he didn't care when really it was his way of coping. He didn't and still doesn't talk about the emotional side of having a sick child. It is a man thing (generally speaking) and you do just have to find a way to manage it. Off loading elsewhere helped me, I wrote a lot of it down early on just to give me some headspace. Do you have other family support? Not that I'm sugesting that you sideline your dh, just that it helps to take the pressure off a little.

hi sc, your dh sounds like a typical man (sadly). My dh hardly took up any conversation/worry, keeping his head in the sand firmly for years. He almost detached himself from my ds, certainly emotionally and of course his work made it easier. Only later, when my ds started to improve, he "woke up", when he was able to communicate and interact with him as long as he didn't have to get involved into anything medical. I did drag him with me to some momentous appointments, but I have to say, he developed a selective hearing and ignored a lot of what was said - or maybe he just refused to delve deeper.
What has helped me was (before internet) to contact another family with a similar diagnosis (via GOSH) and with the mum we frequently talked and bounced coping ideas around, right down to brainstorming medical side. For both of us it was like a lifeline as we were both trying to cope and for a few years we didn't know of any other families dealing with the same dx.
I also have a brill paediatrician, not so much for crying on his shoulder but for helping me to work out how best to help. I also researched things myself and used forums like this to help me understand medical side.

Certainly there was a degree of detachment going on with my dh I think nightcat. And the not wanting to 'delve deeper' for fear of what he might have to face. And yes to finding a parent in similar circumstances (although this is difficult if you don't have a diagnosis). You can lose confidence in your ability to parent, both your sick and healthy children. You are second guessing yourself all the time and sometimes you do just need someone to say , 'yes do that', or 'no, you're overreacting' and if dh constantly comes down on the side of 'you're overreacting' it can feel quite lonely.

Sounds like you need some more info and some support.....

If you go to GOSH website, click on the families and children tab, then click on fact sheets tab at the side. Then you can look up no jargon information on most of the tests they do there. If you need more information then call the hospital or Im happy to explain some of the tests to you (Im a childrens nurse).

Regarding your daughter, next time you go to GOSH mention your concerns to your nurse/consultant as GOSH has some great things in place for siblings. Theres play specialist who organise activities (so siblings dont get left out and ensure they get fun/attention too). They can work with your daughter 1 to 1 if need be to support her through your sons illness. Theres also family therapists/psychologists (who are not scary people who are going to tell you where you are going wrong with your kids, as most people think! :-) but are there to support, be an ear to you, your daughter, your husband and offer practical advice what ever that may be.... They can also put you in contact with other families....

Really hope that helps?

Sadly your husbands response to your sons illness is quite common. Men are so well equiped to deal/express feelings...so they bury there heads...

Thank you all of you, it does help. Sorry for not replying straight away, Xmas relative visits have kept me away.

Saggar, my mum is great but I kind of want to protect her/not worry her I guess. And you are so right, I do feel really lonely with it because he isn't really taking the lead with any of it.

Night cat, I agree that the internet is really helpful. But then without any clear idea of what is wrong, I don't really have anywhere to go where people particuarly understand. It may be, in the end, that it is just asthma and nothing more, but the process of testing and having him ill all the time is really stressful and I don't really know where to get the support when DH isn't supportive. I feel bad to ask for support from the doctors etc when there are so many children with an actual diagnosis who are more ill and more in need than DS.

Harmonie, that's really kind, thanks. I am trying to track down some more information. At the moment, I know he is having a barium swallow and then a CT which I discovered today is being done under general anaesthetic. He also has to have a tube oesophogram, a repeat sweat test (we've had two already), a pH study and a swallow assessment. I am worried it will all be very scary and traumatic for him and that he's too young for me to do anything to help. If you have any ideas for making it easier for him, I would really like to hear. The idea about sibling support is interesting too, I will look into it.

You're certainly not alone in your differences. DH and I are so different in how we react to DS and his epilepsy. I mangage to stay calm but DH is always the one who wants to rush him to A&E. The last time we saw the epilepsy nurse we had a bit of a telling off as she said that our different views were making it difficult for them to judge how things are with DS

Hope that the test for your DS go ok

Thanks. It is tough, I have the same experience with us both telling doctors different things. Not sure what the answer is where you have a different perception. Just keep it factual I guess.

Yep, it's tough and to be honest I go to many appts with my ds, because I think it would be me who will need to pick up the pieces and if I sent my dh, he wouldn't even tell me what happened at the appt (:-o) as he seems to have selective hearing as well as selective memory. We also seem to be singing from a different hymn sheet..
I have learned not to involve him in all nitty-gritty too much as he would probably walk away, he tends to think about here and now rather than the future.
Thankfully, my ds prognosis has changed for the better over the last few years, so the pressure is less for now.

I think "typical man" is unfair and untrue.

A couple of our children have had problems rather than illnesses and DH has always listened to me and never belittled me when I have been worried about them. Most of the time I have been right and he has always done all he can to help our children as well as supporting me.

I think you need to tell him how you feel. You are both worrying in different ways and you need to be united and able to support each other as well as your child.

I hope the tests go okay.

forgot to say, our improvement came about thanks to my nutrition research, there is often more you can do than orthodox medicine can offer, so keep your ears and eyes peeled and go along with what works for you and your family.
One dr usually don't have all the answers, sometimes drs have no answers except wait and see and you can still look elsewhere and find help.

I hope the tests go ok and I think one of the biggest issues is not having a definite diagnosis. It means your mind is racing with the worst possibilities and dh is trying to be positive. Until either of you know what it is, both of you are dealing with the uncertainty in your own way.

I think his reaction is because of his worry about ds. It's very hard to face serious health problems.

(sorry just realised I assumed he doesn't have a diagnosis)

Thanks everyone for all the good advice. I am going to chat to my DH about it tonight and see if I can get him to share the load a bit more. To be fair to him, he does try to come to appointments etc, and I know its his way of dealing, but I don't think he understands how I feel.

Foxinsocks, I do think not knowing is an issue, you are so right that I am fearing the worst while DH is much more of an optimist. I wish I was more like him in that, worrying about the worst case all the time is very tiring. I am really really dreading all the testing, especially now I know he has to have a GA. I am going to explain how frightened I am to DH and hopefully it will help.