venting and how do I deal with this?

[dut]

I am just so angry.. I want to cry

We have a ds3 and dd8 both with a PANDAS dx. 8 days ago we got a positive strep test on ds3 with a rapid. Ped swabbed dd8 and me for a culture which came back negative. Ped recommended dh get swabbed. I was already going to ask him to go in. Ds3 had no strep symptoms just a flare in super aggressive/defiant behaviour.

 

Well long story short dh complained about having to go for a swab, finally agreed, I made appointment for today, dh says can't be bothered, didn't go to appointment.

 

He is on board with dd8 dx, wasn't with ds3 but is more so now that he can see the huge/horrid aggression but is saying things like 'well what about false positive for ds' and etc.

 

I went thru the responses for those.

 

I know he has trouble dealing with them being ill all I am asking is one quick swab.

 

How do I deal with this?

 

Sorry to vent.. any ideas welcome.... thanks

Edited March 18, 2012 by dut

[JAG10]

Do you think it's not wanting to be bothered or fear? You could try purchasing a box of those home rapid strep tests, have them on hand and then next time you'll know for sure whether he is seeing it as an unnecessary annoyance or if he is afraid of what the results might indicate. There is a thread on here somewhere about what home rapid tests are the most reliable.

[dut]

good idea, thank you :-)

[dcmom]

Hi Dut-

 

I am SO sorry.

 

I have, at times, been at the end of my rope with my dh. Mostly with his non recognition of ocd or pandas behavior.

 

I don't think there is any right advice here. Pandas can test a marriage, daily.

 

I can only tell you what has worked (somewhat) for me. I think sometimes we need to approach difficult spouses (I am being very PC and not saying husbands) like we would our difficult children

 

So, in random order:

 

Do not put a verbal demand on him, or push something to an argument, where he might just dig his heels in, in anger.

 

Ask him nicely for what you would like to happen, at a good moment (not when he is hungry, cranky, etc). Do NOT debate or argue it. If he is not in agreement, maybe you could agree to discuss it with a pandas specialist- and both agree to take their advice.

 

Let what you can go, complain and vent to us, your girlfriends, your sister, your mother.

 

Realize that different people handle things different ways, and that he is maybe doing the best he can.

 

Does this make sense?

 

My dh has been thankfully on board MOST of the time. But I also do everything, he works a lot. We had a rough year, about 6 mos into pandas. We are MUCH better now, and I can say that for the first time since this started, I am optimistic about our married future!

 

(Smarty's repeating technique works really well too-)

 

Don't know what to tell you about the strep tests- DH and I both got tested once or twice- never had strep- we don't go for swabs much anymore- then again- we don't have a chronic strep issue.

 

Hang in there- you are NOT alone ....

 

(Hey- in 10 years can we all get together for a cruise or something? I am sure we'll have LOTS of stories, and hopefully we'll be somewhat on the other side...)

[dut]

thanks dcmom :-) I find staying calm so difficult these days but you're absolutely right.

 

I walked away.. fumed, then came back outwardly ;-) calm and he is happy for me to dose him with a course of abx but won't go to the drs... that suits me. I'd rather he not take 'em if not needed but if it's that or nothing, I'll take it.

 

PANDAS really does wreak havoc on a family.....

[Kiera]

You are not alone! There's just something about how dhs (mostly, with some exceptions) deal with neuropsychiatric illness'. My dh is the same. He accepts and understands the syndrome yet when my ds is raging and screaming he says he needs a good spanking!! (which I don't allow). "His brain is inflammed" just doesn't seem to resonate at those times. Just another cruel aspect of this illness we have to deal with. If our ds was going through say chemo, and screaming at having needles, would you be saying "he needs a good spanking"? I think not! So hang in there, you're doing the best you can and that's all you can do.

[smartyjones]

(Hey- in 10 years can we all get together for a cruise or something? I am sure we'll have LOTS of stories, and hopefully we'll be somewhat on the other side...)

 

i'm in!!

 

 

has he/will he read saving sammy? i guess we were 'lucky' in the sense that ds's behavior was so out of whack with sudden onset - there was no way anyone could be a part of that and not be floored with the outrageousness and absolute necessity to know it was terribly wrong.

 

it does sound like he's in denial and you say he's never been to an appt or dealt with the the kids in exacerbation. it seems he has the attitude of those on the 'outside' who just can't understand until they've lived it. my sister recently took my boys for ice cream and ds had a panic attack when he felt the other boys left him. after 3 years and multiple stories, "oh, wow, he does really overreact" b/c she was the responsible adult. really??!! sometimes it's just not something you can understand it you don't deal first hand.

 

i think the book gave dh a different perspective -- perhaps b/c sammy was older than our ds at onset - or maybe b/c it is a step away from our personal experience ? i don't know -- i just think it was helpful for him in understanding the illness.

[lynn]

DH was totally in denial about DS for many years. We went all the way through two IVIGs with (I think) DH thinking that it was a load of hooey. What changed for us was when he became science tutor for DS and saw first hand what was going on. At first he thought it was bad behavior but I showed him some research on CBT (which he did understand) and since then he has been clearer on getting treatment. However, this sent him into a deep depression that is still a problem. I counter that by always working on a plan for the path forward.

 

He is and always will be deeply cynical and skeptical of all treatments until they are shown to work (and even then is likely to attribute them to coincidence.) Although it is lonely being the one advocating for treatments that are outside of the physician mainstream, on the other hand I have decided that he is my BS detector and that is something that I treasure!

 

The main toll that I am worried about is on our health. We have both gained about 20 poinds over this, and neither of us was underweight to start with. After reading LLM's excellent post on how to deal with behavior, we have both resolved to start exercising and stop some of the destructive habits we have fallen into (sadly goodbye to the glass or two of wine everyday to "smooth things out" oh well)

[airial95]

You are all much more understanding than I am!!! My husband has always been "on board" with the PANDAS dx, and the various treatments, etc... However, like most of us here, he doesn't deal with it on the day to day basis, so being "on board" is great, but truly "getting it" is a totally different story.

 

We had a similar situation early on in our path where the pediatrician said we all needed to be tested (it was our son's 3 positive cluture in 3 months, all while on full strentgh abx) as he strongly suspected someone in the house being the culprit (turned out it was our daughter).

 

He swabbed me right there in the office, and I obviously broght my daughter back by later that day. But when I told my hubby he had to go get swabbed (either at his dr, a walkin clinic or our ped would do it) he balked - because our daughter already tested positive - that was obviously the problem.

 

My response - I'm a mother of 2, not 3, so you have a choice, you can act like a grown up and do what you need to do for your son's health, or find a new babysitter - because I quit.

 

He went for the culture the next day. He hasn't pushed back since!

[dut]

lynn - my dh sounds very similar to your's. He absolutely believes in PANDAS and is on baord with dd dx cos he couldn't be.. it was so sudden and awful the first time and responded so beautifully to abx. He is skeptical of treatment and drs and is also my BS detector!! But too much so.. mind you perhaps I hope and believe too much, so it may not be a bad thing.

 

 

I've also seen my alcohol intake rocket along with troughing everything in sight like a truffle pig...

 

Anyways, he's agreed to start abx tomorrow, so that'll do for me... Just like everyone else here, I'll just get my head down and get on with it! :-)

 

thanks for all the advice

Edited March 18, 2012 by dut