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So tired of watching my boys suffer!


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So, I had to reduce ds6's azith this week b/c it was causing his gut bacteria to come back (with all it's lovely aggression). He is due for a dose tonight and I can tell, he started baby talking today.

 

We all got in the car and he was trying to tell me a story (which is rare these days) and my husband harshly admonished him for baby talking. I tried to tell him that it's b/c he is due for azith, leave him alone I want to hear what he's trying to tell me. So my husband goes off about how he wasn't doing it a minute ago and I should stop spoiling him. He only does it around me, yada yada (which was the same pattern back in sept when he had strep). So he STOPS THE CAR AND TELLS ME TO GET OUT - A HALF MILE DOWN THE STREET FROM OUR HOUSE!!!! Is this what I get for standing up for my child?

 

I hate this disease!!!!!!!!!!!!

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So sorry to hear. I can related to this conflict with DS in the middle. I not only got out of the car (been there couple times), but I had to get out of the house... literally. My husband doesn't get it completely, though he says he does. When he does "get it" he only remembers it for a couple days. We now live with my mother because I could not care for my boy and my husband's psychology at the same time. We have been here since July... four hours north. Dad comes to visit and I go down there. I would not recommend this to anyone, but for my son's sake, it was the only the choice for me, as I was close to the end of my rope. He is doing so much better now, and I am hopeful that living as a family again in the future will be much more harmonius when my son is finally completely free of his "issues." It is, indeed, a most difficult disorder to live with. It may be that you need to minimize the events that place you both in that position simultaneously. Before it gets much worse, sit down and pre-determine how you will handle these "issues" before they arise. Then, get commitment from each other that you will each accept gentle correction without arguing. The stress between dh and me was, I'm sure, a contributing factor to my son's mood. I hope you guys can heal from all this. I am not sure we can.

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I'm sorry Stephanie :-(

It is so hard.

With my own husband, just last night, I finally had to email him a couple pages off of Dr. K's website, and made him sit down to read it while I sat next to him.

I have tried to go into more depth conversationally about it before, to try and educate with him , and his face would blanche with the stress of it- well, buddy, I'm stressed too- your the Father, you gotta come to this party, too, so we can get her well.

I also sent an email out to his family yesterday explaining our diagnosis (and to politely tell them don't come near us with a sore throat), and they called him today, so it helped him to start talking about it, learning about it.

But the day to day? Tough.

Sending PV's------

Sarah

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So sorry to hear. I can related to this conflict with DS in the middle. I not only got out of the car (been there couple times), but I had to get out of the house... literally. My husband doesn't get it completely, though he says he does. When he does "get it" he only remembers it for a couple days. We now live with my mother because I could not care for my boy and my husband's psychology at the same time. We have been here since July... four hours north. Dad comes to visit and I go down there. I would not recommend this to anyone, but for my son's sake, it was the only the choice for me, as I was close to the end of my rope. He is doing so much better now, and I am hopeful that living as a family again in the future will be much more harmonius when my son is finally completely free of his "issues." It is, indeed, a most difficult disorder to live with. It may be that you need to minimize the events that place you both in that position simultaneously. Before it gets much worse, sit down and pre-determine how you will handle these "issues" before they arise. Then, get commitment from each other that you will each accept gentle correction without arguing. The stress between dh and me was, I'm sure, a contributing factor to my son's mood. I hope you guys can heal from all this. I am not sure we can.

 

Phasmid, I am sorry it has come to that for you. But in a way, I wish I had the option to do the same sometimes. I don't have anyone I could go to when I need to "get out of here". My mom fights me tooth and nail on their dx's, tx's and diet (she thinks they are malnourished without gluten!!??). Sometimes I think the very thing that drives us apart is the very thing that keeps us together. I can't do this without him...

 

 

I'm sorry Stephanie :-(

It is so hard.

With my own husband, just last night, I finally had to email him a couple pages off of Dr. K's website, and made him sit down to read it while I sat next to him.

I have tried to go into more depth conversationally about it before, to try and educate with him , and his face would blanche with the stress of it- well, buddy, I'm stressed too- your the Father, you gotta come to this party, too, so we can get her well.

I also sent an email out to his family yesterday explaining our diagnosis (and to politely tell them don't come near us with a sore throat), and they called him today, so it helped him to start talking about it, learning about it.

But the day to day? Tough.

Sending PV's------

Sarah

 

Sarah, that was a good move to have him read Dr. K's site. We are veteran's at this, he gets it about as much as any husband can. But he will never get it like I do, so I find myself continually having to tell him to back off! Leave the poor kids alone, they are going through enough, ya know?

 

I know it is this way in almost all of our houses. This was an especially hard month and today was an especially hard day...enough so that I am venting on a public forum...sigh.

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At least I now know my husband isn't the only one who isn't like the awesome dads that visit this website and want to learn about the disorder and be hands on! I think this is where it comes to play who does the most research. The more you read about this disease, how other kids are affected, it becomes ingrained in you and just part of you (how to see symptoms, how to react...even if it's hard, possibly how to treat). If your other half doesn't follow it like you do, they just see it in a different light.

 

 

So, I had to reduce ds6's azith this week b/c it was causing his gut bacteria to come back (with all it's lovely aggression). He is due for a dose tonight and I can tell, he started baby talking today.

 

We all got in the car and he was trying to tell me a story (which is rare these days) and my husband harshly admonished him for baby talking. I tried to tell him that it's b/c he is due for azith, leave him alone I want to hear what he's trying to tell me. So my husband goes off about how he wasn't doing it a minute ago and I should stop spoiling him. He only does it around me, yada yada (which was the same pattern back in sept when he had strep). So he STOPS THE CAR AND TELLS ME TO GET OUT - A HALF MILE DOWN THE STREET FROM OUR HOUSE!!!! Is this what I get for standing up for my child?

 

I hate this disease!!!!!!!!!!!!

Edited by Vickie
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My Dad lives about half an hour away. The first time I went over there after going gfree he was like "I made sure to get a cheese pizza for you!". Felt SO bad, but the man's just clueless. I gotta cut him a little slack though, when you've got nine kids who basically ALL have medical problems I can understand why you don't have room in your head for all of them, haha. I love my Dad way too much to even explain, don't get me wrong. One time he was on a phone call while I was over there & after he mentioned to the caller that he was with me he looked at me & went "How old are you again? What grade are you in?" :/ Gotta wonder what it is that makes most Moms & Dads behave so differently.

 

Stepdad only showed interest when PhilaMom sent us the fliers from the ILADS 2010 conference, but he's been doing much better since then even if, like Mom, he's not doing any research or anything on his own.

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Guest pandas16

I'm so sad your struggling. I hesitated reading your post because I know my parents fought when I was sick and I felt like it was all my fault. I remember feeling terrible and crying about it. Flare ups are awful for everyone. If it's any consolation, things get better. I have PANDAS and just graduated college with honors. I have a full time job and lots of friends.

 

My dad was always a little less involved than my mom (or so I felt). He had to work but I know that he had a very difficult time dealing with PANDAS when I was sick & well. When I was sick my parents teamed up and worked to together, but once I was 95% I had the impression that my dad sort of went into denial that I even had the disease. I understand now that it was a huge trauma to him too but it was very difficult during adolescence. I needed to talk about PANDAS and couldn't. (Back in 2000, they didn't know if PANDAS caused permanent damage etc) Not feeling comfortable talking about it made me contemplate suicide and all sorts of awful things. It also kind of put me denial about the disease too.

I was very angry, but that could have been me dealing with the trauma as well.

 

Overall, it was always me and my mom that went to doctors. Now we joke, after each specialist we get pizza and say doctors are our new way of spending quality time. Right now we're in the process of finding adult rheums because I'm no longer considered a kid. I wished more than anything that my dad would be there after my surgeries and for doctors appointments but he couldn't for work or whatever reason. I think if he can spend 5 weeks in Mexico..he could have taken a day off for my surgeries but whatever.

 

Now I can talk to him openly about PANDAS. We've kind of evolved as a family & I think PANDAS made us stronger. I see their side better and they see mine. The memories still hurt a lot though. I know he loves me. He defiantly doesn't "enjoy" talking about it but I know he'd help me in a crisis. He knows I would need immunosuppressive treatment. I also know my mom encourages him to talk to me about it and that she educates him. He also educates himself and understands the disease. Things are a lot better now.

 

I will say though that I remember my dad not being there for A LOT of doctors appointments and it defiantly impacted me. I love him & forgive because he's father. I know he had to work but his inability to deal with PANDAS really hurt me for a long time.

 

Maybe if you show your husband what I wrote, a grown kid with PANDAS- he'll come around... (just a thought) hope things get better.

Edited by pandas16
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Thank you PANDAS 16, I will show it to him (but then he will know I blasted him on ACN!!). Still worth it. I am very concerned about how my boys will perceive themselves knowing that their father blames them for things that are out of their control. A pandas mom has battles on all fronts.

 

Regarding the doctor thing. Just to pick your brain, why do you wish that your dad was there, exactly? So that he coudl hear first hand what the doc said? I don't get the feeling my boys care. But they are very young.

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Thank you PANDAS 16, I will show it to him (but then he will know I blasted him on ACN!!). Still worth it. I am very concerned about how my boys will perceive themselves knowing that their father blames them for things that are out of their control. A pandas mom has battles on all fronts.

 

Regarding the doctor thing. Just to pick your brain, why do you wish that your dad was there, exactly? So that he coudl hear first hand what the doc said? I don't get the feeling my boys care. But they are very young.

 

 

When I was little I thought that he was mad at me for PANDAS & I felt bad because I couldn't control it. Him being there would have proved to me that he wasn't angry and that he loved me PANDAS and all. I do know that he loves me though. He's not a bad guy, he just didn't know how to deal with things back then & I do forgive him

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So, I had to reduce ds6's azith this week b/c it was causing his gut bacteria to come back (with all it's lovely aggression). He is due for a dose tonight and I can tell, he started baby talking today.

 

We all got in the car and he was trying to tell me a story (which is rare these days) and my husband harshly admonished him for baby talking. I tried to tell him that it's b/c he is due for azith, leave him alone I want to hear what he's trying to tell me. So my husband goes off about how he wasn't doing it a minute ago and I should stop spoiling him. He only does it around me, yada yada (which was the same pattern back in sept when he had strep). So he STOPS THE CAR AND TELLS ME TO GET OUT - A HALF MILE DOWN THE STREET FROM OUR HOUSE!!!! Is this what I get for standing up for my child?

 

I hate this disease!!!!!!!!!!!!

Breathe in, breathe out...

I've read other posts in which you mention your dh, and I got the impression he was "on board" with this whole thing? Maybe I'm mixing dads up here...

BUT, I have to say, in defense of the men, I wonder how they feel when their wives turn into pill-pumping machines, making special meals, going to a million appointments, spending COUNTLESS hours on the computer...being consummed by PANDAS. I am pointing fingers, just trying to say that it's hard, hard for dads to accept the children's illness, hard to accept the financial stress, hard to accept the "loss" of their wife. I have spent so much time and energy "researching" PANDAS, I've become so consummed by this thing, I have neglected my relationship a bit. When things get tough, and I get the "really?" kind of look from dh, I simply let HIM handle it, let HIM see how impossible it is to "reason" with OCD. Maybe you can take a couple of days off... let him be with the boys 24/7, and he'll see what you are talking about. My dh was, at some point, totally NOT getting this, and giving me a hard time in many ways. I had to put my foot down and spell it out for him, and let him know in no uncertain terms that I was NOT going to be treated that way, that I was just trying to do what was best for my son, and how his treating me (us) badly was just making the whole thing worse.

I think all PANDAS moms need a break every now and then. My husband has suggested I go away somewhere, but I have not taken him up on it because I much rather use that money towards treatment. But, I do take little breaks here and there :)

I'm probably not being very helpful here, just kind of thinking aloud.

Just try to reconnect with your DH, he is probably just as stressed out as you are, just showing it in a different way.

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So, I had to reduce ds6's azith this week b/c it was causing his gut bacteria to come back (with all it's lovely aggression). He is due for a dose tonight and I can tell, he started baby talking today.

 

We all got in the car and he was trying to tell me a story (which is rare these days) and my husband harshly admonished him for baby talking. I tried to tell him that it's b/c he is due for azith, leave him alone I want to hear what he's trying to tell me. So my husband goes off about how he wasn't doing it a minute ago and I should stop spoiling him. He only does it around me, yada yada (which was the same pattern back in sept when he had strep). So he STOPS THE CAR AND TELLS ME TO GET OUT - A HALF MILE DOWN THE STREET FROM OUR HOUSE!!!! Is this what I get for standing up for my child?

 

I hate this disease!!!!!!!!!!!!

Breathe in, breathe out...

I've read other posts in which you mention your dh, and I got the impression he was "on board" with this whole thing? Maybe I'm mixing dads up here...

BUT, I have to say, in defense of the men, I wonder how they feel when their wives turn into pill-pumping machines, making special meals, going to a million appointments, spending COUNTLESS hours on the computer...being consummed by PANDAS. I am pointing fingers, just trying to say that it's hard, hard for dads to accept the children's illness, hard to accept the financial stress, hard to accept the "loss" of their wife. I have spent so much time and energy "researching" PANDAS, I've become so consummed by this thing, I have neglected my relationship a bit. When things get tough, and I get the "really?" kind of look from dh, I simply let HIM handle it, let HIM see how impossible it is to "reason" with OCD. Maybe you can take a couple of days off... let him be with the boys 24/7, and he'll see what you are talking about. My dh was, at some point, totally NOT getting this, and giving me a hard time in many ways. I had to put my foot down and spell it out for him, and let him know in no uncertain terms that I was NOT going to be treated that way, that I was just trying to do what was best for my son, and how his treating me (us) badly was just making the whole thing worse.

I think all PANDAS moms need a break every now and then. My husband has suggested I go away somewhere, but I have not taken him up on it because I much rather use that money towards treatment. But, I do take little breaks here and there :)

I'm probably not being very helpful here, just kind of thinking aloud.

Just try to reconnect with your DH, he is probably just as stressed out as you are, just showing it in a different way.

 

I completely agree with you. It is not easy on them either. Sometimes it is like he doesn't have a wife. When the kids have pandas (and all the other issues/infections) so do I. Nothing easy about this situation. I just think his expectations are unrealistic, for myself or my boys to meet. He wants to support me. He usually does. I just think his frustrations get in his way sometimes and he blames it on everyone around him. I had to remind him tonight that he is not the only one who didn't sign up for this. There are 4 people here who did not sign up for this. Join the club, ya know?

Edited by Stephanie2
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I am so relieved to learn that I am not the only one with a less than unified team dealing with this nightmare! I get upset with my dh because I have told him the research that I have found & explained what is going on with our ds18, and he will act like he is listening & gets it, but he will still say things about trying to control it & even tease our son cruelly for some of his habits. I can see how much it hurts our son - why can't he?

 

Then I will share some of the things ds tells me with my dh so that he can understand that he is hurting our boy & he will express remorse, but then after a time, falls right back into his old habits. He'll say stupid things like 'why don't you just stop?' Well, duh. Why didn't we think of trying that?

 

He can't join us at our appt's because he watches our other children during those times so I try to take notes & fill him in on everything. But if I didn't volunteer these things, he wouldn't ask. He always cops the excuse that he knows I will tell him whatever he needs to know. <_<

 

I recognize that my dh has been struggling with watching his firstborn falling apart & not being able to do anything to fight it. And he has always dealt with his pain with a dry, sarcastic sort of humor - that and avoidance (don't look & it won't hurt, though it's more like don't think about it & you won't have to deal with it). And this has eaten up virtually everything that he has worked so hard for financially. No father/husband likes to feel so helpless in protecting his family.

 

It's just so hard that I have to be the understanding, empathetic go-between to keep patching up their relationship and there is no one for me when I start to lose it. Well, that's not quite true - you all have been here for me! Thank God for this forum & the internet!

Edited by GraceUnderPressure
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There are 4 people here who did not sign up for this. Join the club, ya know?

Oh, I'm with you! Sometimes I feel like saying, "we are on the same team, remember?"

 

That's exactly what I told him last night!

 

 

Regarding fathers at doctor appointments: You know, going to the doctor appointments can be a very positive thing. It shows concern for the child and at the same time brings the husband off the sidelines. Plus, when your head is spinning it is helpful to have another brain and pair of ears to remember it all.

 

I used to bring dh to all appts but have found that he usually ends up having to leave the room with my out of control child/children. So it is a wasted day off. Also considered bringing a family member to watch the kids in the waiting room while dh and I sit with doctor, but that wastes precious babysitting time we need elsewhere. I don't know...personally I don't think my young children care. They do see that he is highly involved in all aspects of their lives, hopefully that is what they remember. I just have the "disapprovel" that my children get when they are not "good enough". Tough one.

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