Trying to talk to DH downhill again.

[mar]

So I started talking to DH about all signs of strep and pandas with kids and I am a talker he loses it. He literally looks like he wants to crawl under a rock. He saids I can't believe you guys all talk about this . Meaning me and this site. I say really but we are trying to help them. He saids well maybe I need help b/c hearing to you talking Is making my head spin. I don't know how you can process all of this and has to walk away. He said his axiety if up the roof and he feels like running out of the house from just listening to me. Really great talking to u DH. Just 5 hours ago he said test me for strep. He can't deal with any of this he gets axiety. He will listen to a sentence here and there but once I start explaining he just losses it and freaks out. Wow.

[TessaKrista]

We need support from various sources. Unfortunately, sometimes our husbands or wives cannot give us everything we need from them emotionally, so we seek out other sources of social support for the issues that concern us, such as this site. This site is a source of information and support. There is a world of wisdom on this site from parents.

 

Go over stuff with your husband, but not at length, because clearly he is not in the same place as you with respects to information seeking. That is ok. One person cannot be everything to us all of the time. That is why we have male friends, female friends, co-workers we get along with, other mother friends, friends in the family, and there are always counsellors or therapists to assist as well.

 

One thing I have noticed about this site, is that the parents on her are very interested in helping out their children, and they are completely interested in assessing their children's needs and learning more about what to do. There is a bit of an obsessive quality to all of us, which looked at differently, is a good thing, because we perservere and figure out what is needed. Think of Beth, Sammy's mom (from Saving Sammy). She was relentless in her pursuit, and now she is committed to spreading the word and helping others.

 

Take from you husband what he is able to offer you, and give him what he is able to take from you, while at the same time connecting with others who are like minded, and can give you what you need in terms of information and support about your child.

It sounds like your husband is overwhelmed with all of this information, and processes things differently from you. You want to verbalize your feelings, and talk about the information that you have uncovered. He isn't like that, and that is ok. It just means that you will be the one figuring out how to best help your child, and along the way, you will keep him briefly posted.

 

Surround yourself with supportive people who understand what you are going through, including this forum and other means of social support. You seem to like to immerse yourself in information, and your husband isn't like that, which is fine. Just different people who have common interests, just not with everything.

 

All the best to you!

[airial95]

Take a step back and look for other ways your husband is able to help. in our case, I was just as frustrated as you were that my husband didn't seem to want to learn every little scrap of information that there was to know. He didn't read the websites I sent him, he wouldn't read Saving Sammy, etc... He reacted the same way your hubby did, and to me it seemed like he just didn't care.

 

Little did I know at the time, that the few things he DID hear me talk about were how much IVIG and PEX may cost if we needed to go down that road. He didn't care what they were, or how they would help - just the $$$. What he started doing was rearranging our finances and investments so that if need be, we would have funds available quickly to cover it without bankrupting us or completely trashing our retirement. I wasn't aware of this until well over a year into our journey and he shared with me how far we were from our PEX "goal" (a goal I didn't even know existed!!).

 

He looked at it with a "divide and conquer" mentality - I had the medical end covered, so why should he waste his time and energy there - when he could focus on other ways to help.

 

Eventually, he's been able to pick up on the symptoms in both of our kids just almost as well as I can, but it's taken him a long time to get there. Not because he didn't care or didn't want to hear it - but he felt it was a wast to duplicate efforts. Men think differently than we do, and had he TOLD me about what he was doing behind the scenes financially, I may not have been so frustrated that he didn't seem to care what was happening to the kids. Because he did - just in his own way.

 

Maybe you should look for other ways for your hubby to be involved in the recovery...

[mar]

You should be very happy very with your DH and that is awsome that he is there. Sadly on my side I take care of all the finances and since ds had been 7 1/2 and now he is 10 DH has not done much. I recently mentioned some tests I want to do and he looks at me and saids how much is this going to cost? We should hold off for now. Does he really need them. but then he comes home today saying we should buy an Rtv. Really! He has no clue about anything? He is a dreamer like ds. I feel like come back to reality bit I fear there is no hope!

Mar

[cobbiemommy]

My husband was a lot like yours in the beginning, as well. I would break down the science in 15 minute (or less) increments. I confessed when I had doubts and we talked it over together. If you are like me, your head is swimming with all this new knowledge that will really help your child and you want your husband to believe it as much as you do. He will, in time...

 

Our first steroid burst, was a game changer for my husband. He could see the results. Men are very visual. When we had labs completed, he could see the numbers and how out of range they were.

 

This whole thing is a quantum shift in thinking for most parents. He is going from a previously help belief that it is willful behavior, or laziness, or that there is nothing that can be done except psych medications. After he gets used to the idea, I hope he will be a big believer in infection-based OCD/ADHD/Autism as the rest of us!

 

Please take it slow for him, so he can get used to the idea. In the meantime, get him swabbed and get a blood sample for strep testing! Get a doctor that is a specialist in treating PANDAs. They will make a believer out of him.

 

Hopefully, this will strengthen your marriage. It is sure a test of commitment for most of us.

 

Cobbie

[lmkmip67]

I think we all handle things in our way. I kind of can understand because if I sit here and read too long, or start checking daily, and submersing myself in this, I get anxious and just want to hide under a bed, too. I don't have the aptitude or patience to learn about all the science and everything that this COULD involve. I get overwhelmed, anxious, tend to tank and become depressed. I have to take in my information in measured doses too. Saying this, my husband handles it even less well. I think we all do the best we can. My husband takes it seriously but he can't research data for hours anymore than I can. Nothing against those that do. I just can't do it. So I say yes, take what he can offer. If your juggling a lot of doctors appointments, maybe have him take over some things around the house, or homework help, etc. Try to give him things that will lighten your load and help in ways he can handle. I can't talk to my DH about this for more than ten minutes either. His eyes glaze over. But I know I have my limits, too, so I understand. He wants to help. He took Ian to two IVIG treatments on his own because I had to work. But he can't really take talking to the doctor about this and prefers I do it, so I talk to Dr. B via phone during the treatment. It works. It isn't fair that it is all on one person. But everyone handles things differently so I think we just need to find what works for each of us. Maybe try to keep the bits of information down to 5 minute bites. There was a point when I told DH that it was not up to me to make HIM feel better when he felt extreme anxiety about this and that I needed some support too. I said we had to get some family counseling unless he could sit down and talk about this sometimes (our talks usually deal with the stress of having a PANDAS child, not really the science behind it because even I don't handle that well). It was rough at first, but he didn't want to take the time or extra expense for family counseling (we don't really have issues, but the stress from PANDAS was starting to take its toll) so he finally started listening when I needed support and stopped appearing to be the one that fell apart. This can be stressful though and if talking to someone for a few sessions is helpful for you and your husband, there is nothing wrong with that! Chronic illness in a family is difficult. I would try to sit him down and talk to him about how you need him to be more on board with this and be a partner in your son's care. It isn't all up to you. It shouldn't be. And you deserve some time when you can forget about this as well. I hvae learned my limits. I may not know all the science behind it (reading tons of studies gives me hives, I am just not a scientific mind), but I know I have to take time away from here, too. When I felt less overwhelmed I was also less irritated at DH for not taking more of a roll in this.

[mar]

Thanks for all the replys. I believe DH has adults pandas. Which is why this is hard. First let me say he is very sweet and would do anything for me which is why I feel in love with him and married him. But now that I see things in ds it's like wow he is like his dad. Here is one example of what I have to deal with. So ds wants to go out and play catch and practice pitching. DH saids really right now hold on. (. It's weird but most of the time he talks to the kids he sounds aggravated which I have figured out its his OCD) he saids let me take a break and ds saids you always say this that it's not the right time so I tell ds as I'm finishing the dishes I will go out there with you and DH looks at me and says really do you always have to make me look bad, I am the bad guy. I say what did I do I am just going to take him out and he jumps of the couch and by that point ds does not want to go out b/c he knows DH is just going to be annoyed the whole time. I shall say this this does not always happen. But DH has anger issues b/c it's not when he wants to do it. His dad was the same way. And when I remind him of his dad who never did anything with him which bothers him I say don't be like him. He will play with the kids and wrestle and all. He just makes me feel bad at times b/c he thinks I am doing things with them on purpose to make him look bad. He is one of those those that he will get all mad and then a couple hours later be like I'm sorry and act like nothing happened. And I feel like he always blames things on me.

Mar