Husband is NOT on board

[Tattoomom]

So, I really pleaded with my husband today to read some of the websites I've bookmarked and some of the pages here I've posted. After several attempts of begging, he complied, but not happily.

 

Basically, he doesn't "see" ds's issues. I mean... he see's them but he doesn't "see" the problem in them. We haven't had a fit/rage in a few weeks, so things seem to have waned for now.

 

He says "The tics do no harm. He's not handicapped, he still functions." He feels like the therapist and Zoloft are helping the anxiety. So he sees no reason to dig for a diagnosis of PANDAS or TS.

 

I feel so alone in this. My husband makes me feel like I'm the one with the problem because I'm the only one who wants to get our son help.

 

I'll admit, ds's issues are mild and not near as severe as some of you have it. But they're there. Mild or not, he tics and has OCD/Anxiety/Tantrums.

 

My dh does not think it's PANDAS or TS. He thinks one day it'll all go away and he can say "I told you so."

 

Of course, part of me hopes he's right!

 

But realistically, what can I do? If I pursue PANDAS, I'm pretty much in this alone.

 

And I guess part of me wonders if he's right?

 

[Suzan]

Hi, I don't have a husband but I do know what it's like to second guess yourself as it sounds like his non-belief is making you do. I think this is normal in all of this, the self doubt. But I know you are a great Mom and are doing all you can to help your son.

 

The thing I don't really understand with your dh's attitdue about it is that a tic is not accepted as normal and a child with a tic and anxiety and a therapist is a red flag for sure (I'm not sure if he sees the OCD, does he?). It just goes against my inner nature which is to find the answer to why.

 

Anyway, I'm no help but wanted to say I'm sorry you are going through this and feeling so alone. I totally know what that feels like!

 

Susan

[Tattoomom]

The thing I don't really understand with your dh's attitdue about it is that a tic is not accepted as normal and a child with a tic and anxiety and a therapist is a red flag for sure (I'm not sure if he sees the OCD, does he?). It just goes against my inner nature which is to find the answer to why.

 

 

Suzan,

 

You completely nailed it! I'm pretty sure I said that exact same thing to him in one of our many debates. And what kills me even MORE is that we have 3 kids, ds is the oldest (8) and our middle child is (6) and she is polar opposite (3rd is still a baby)... you'd think he'd notice that our middle child is not ticcing, freaking out at the drop of a hat, she's not on Zoloft, not in therapy, etc..... I tried to point out that those are red flags, yet he still brushed it off.

 

AND.... he tried to say that everyone has some sort of OCD or issue, no one is perfect. And he thought the list of symptoms of PANDAS sounded to broad, like too many children fit the bill. Yet, we have a 6 year old daughter who is not any of those things!!!

 

It took me years to get him to agree to therapy for ds. I don't know why he's in such denial.

 

On the flip side, he makes me think I'm chock-full-of-nuts!

 

Thanks for understanding...

[ajcire]

I totally know how you feel. My ds is what I consider very mild as well and it's so easy to write off the signs of pandas as something else. It is easy for my dh to write off the very mild tics that come and go as normal childhood tics because he was there when the ped told us it was a common childhood tic not to worry. He was also there when the same ped told me I was crazy when I mentioned pandas several years after the innocent eye blinking. We went through a lot last year when this first came together for me, when I started putting the pieces of the puzzle together. Honestly though, when I try to explain the pandas part of him to friends or family (with exception to my parents who get it and spend a lot of time with him) they look at me like I am crazy because they don't see anything wrong with him. Basically I took over bedtime last year when that was the biggest issue for us because we couldn't agree on how to deal with it... I felt it was pandas and medical, dh felt it was behavioral. I cried a lot but then told him that he didn't have to go with me but that I was looking into this and I did. It broke my heart to go an appt about it without him but at least I was doing what I could. Dh still doesn't quite get it although now I think he just doesn't want to admit I am right but after getting the cunningham results he was supportive of me making an appt with Dr. T which is coming up soon. Unfortunately he will be away for it but I do think he would have come with me for this one.

 

It is really hard when it's subtle pandas symptoms. I mean obviously if he presented with severe ocd or tics it would not be something he could ignore and not see.

 

I have had people tell me the same thing... that those symptoms of pandas are so broad... but I keep telling them that if the only symptom ds had was an eye blink or the only symptom was frequent urination, or the only symptom he had was going through a short hoarding garbage phase, or if the only symptom was being terrified to sleep than I would agree it might not be pandas but when you put it all together.... oh yeah and did I forget to mention the positive strep tests. It seems so clear to me that it is impossible to see what others don't get.

[Tattoomom]

I totally know how you feel. My ds is what I consider very mild as well and it's so easy to write off the signs of pandas as something else. It is easy for my dh to write off the very mild tics that come and go as normal childhood tics because he was there when the ped told us it was a common childhood tic not to worry. He was also there when the same ped told me I was crazy when I mentioned pandas several years after the innocent eye blinking. We went through a lot last year when this first came together for me, when I started putting the pieces of the puzzle together. Honestly though, when I try to explain the pandas part of him to friends or family (with exception to my parents who get it and spend a lot of time with him) they look at me like I am crazy because they don't see anything wrong with him. Basically I took over bedtime last year when that was the biggest issue for us because we couldn't agree on how to deal with it... I felt it was pandas and medical, dh felt it was behavioral. I cried a lot but then told him that he didn't have to go with me but that I was looking into this and I did. It broke my heart to go an appt about it without him but at least I was doing what I could. Dh still doesn't quite get it although now I think he just doesn't want to admit I am right but after getting the cunningham results he was supportive of me making an appt with Dr. T which is coming up soon. Unfortunately he will be away for it but I do think he would have come with me for this one.

 

It is really hard when it's subtle pandas symptoms. I mean obviously if he presented with severe ocd or tics it would not be something he could ignore and not see.

 

I have had people tell me the same thing... that those symptoms of pandas are so broad... but I keep telling them that if the only symptom ds had was an eye blink or the only symptom was frequent urination, or the only symptom he had was going through a short hoarding garbage phase, or if the only symptom was being terrified to sleep than I would agree it might not be pandas but when you put it all together.... oh yeah and did I forget to mention the positive strep tests. It seems so clear to me that it is impossible to see what others don't get.

 

Ajcire,

 

I could hug you through the internet!! I really needed to hear that... thank u sooo much for sharing your story! It makes me feel so much better to know that I'm not alone. This is especially hard on me especially because my dh and I are very close and we typically get along very well and agree on most things and we butt heads on this.

 

I think we need to order the CamK test. He's supportive of it, I just worry it'll add more stress because it's expensive and we're really struggling financially right now. On top of it maybe not offering any answers...

[dut]

I apologise up front for any men who don't fit this stereotype but I feel that the stereotypical male tends to ignore medical issues and won't go to the dr thinking it will take care of itself and go away eventually. They may also apply this to their kids.....

 

My husband is on board with the PANDAS diagnosis for our kids(s?) but still thinks I'm obsessive for searching for answers.. the attitude I get is "ok, so yet another dr...... what this time?" said with a really sarcastic tone. I think that as a really generalised rule men and women tend to deal with problems differently.. certainly for us I like to face them head on and my husbnd doesn't. I do all the dr stuff alone and it can be lonely but you've got to go with what you know to be right for your child. You will second guess yourself and a doubting husband will only make things worse.... just stick with what you feel to be the right.....

[momto2pandas]

I also think that there is something to maternal instinct. My husband is not resistant to the idea of PANDAS since he sees it in my kids too (hard to miss), but he doesn't see nearly as much of it as I do - even when we're both around the kids. I realize now that he's not trying to be resistant, he just isn't quite as tuned in to the subtleties of what's normal for the kids and what isn't. For example, I don't think he takes one jot of notice of their bathroom habits, though I know that in the back of my own mind I track all of that stuff on some level and will always be aware of changes.

 

Just wanted to add, too - when I had tics as a kid, it was completely written off as "nervous tics." It was just something that people got or had, like having a mole or something. I think that a lot of that thinking still prevails, but I think that we know better, so please don't second guess yourself! Having gone through the experience of PANDAS as it develops over the course of childhood, I know that even if my DH were totally against it, I would find a way to get my kids seen and treated (or at least followed) despite that. It can get a lot worse rather than better, in the short run, and if I had "known better" but not acted on my kids' behalf because of pressure from my husband, I think that the guilt would do me in. Every relationship is different and this isn't necessarily a recommendation; it's just my perspective...

 

 

 

I apologise up front for any men who don't fit this stereotype but I feel that the stereotypical male tends to ignore medical issues and won't go to the dr thinking it will take care of itself and go away eventually. They may also apply this to their kids.....

 

My husband is on board with the PANDAS diagnosis for our kids(s?) but still thinks I'm obsessive for searching for

answers.. the attitude I get is "ok, so yet another dr...... what this time?" said with a really sarcastic tone. I think that as a really generalised rule men and women tend to deal with problems differently.. certainly for us I like to face them head on and my husbnd doesn't. I do all the dr stuff alone and it can be lonely but you've got to go with what you know to be right for your child. You will second guess yourself and a doubting husband will only make things worse.... just stick with what you feel to be the right.....

[forjpj]

I totally understand where you are coming from Tattoomom, and agree with what Dut and Momto2Pandas said. Men just see things totally different, which is extremely frustrating. It is such a shame...the pandas is hard enough, but when you have to convince your spouse it is even harder. We wasted a lot of time because I felt in my gut something was not right, and he didn't back me. We always had other issues to blame it on...sensory integration disorder and the brief period of ocd my son had when he was 5 (obviously before I knew about PANDAS). As a result I started second guessing my instincts. Believe me, I will never do that again! Finally, after things got so bad with his behavior, my husband had to start going to appts. with me. At one the PANDAS dx got mentioned by one doc. which gave me the encouragement to pursue the issue with his pediatrician. So he was at least there to hear a doc say maybe it is this. If I had told him that I had been considering this for months and had already presented it to one doc he would have told me no way. He had to hear it for himself. He is finally on board with the dx, and can at least describe it to people. However, he won't read up on anything...not even Saving Sammy...he only skimmed it. Even my 60 yr old neighbor read the book when I gave it to him because he had to "save" us during a bad tantrum one night. It is very frustrating...I just don't get how they can stand to be uninformed. The worst part is...even though he will talk about it intelligently to people now...he can't get past the compulsions. He constantly questions my son about them and complains about them. So as a result...I am the only one that can turn on the faucet or carry him from place to place. My son will ask my 7 yr old daughter to turn the water on before his dad. Ugh!! Ok...I think I have crossed the line into venting. Just wanted to let you know that I know how you feel and you are not alone!!

[MomWithOCDSon]

Hang in there, Tattoomom! No matter how good and supportive the husband, that Y chromosome just isn't a sufficient exchange for Maternal Instinct!

 

I have a slightly different problem. My husband is supportive . . . I think more or less because he knows with or without him, I'm taking my son down this path, and he'd be better to get on board rather than get run over! But . . .

 

He's of a very scientific mind, so when studies aren't repeatable and/or conclusions are drawn with hypotheses included rather than 100% hard evidence, he puts on his cynical hat.

 

Furthermore, he's a bit of an "Authority Hound," so when a doctor with advanced degrees and years of experience puts forth his/her opinion, my husband tends to accept it, no questions, no second opinions, etc.

 

I guess it's just up to us "goddesses" to keep the faith and keep on asking questions, trying alternatives, etc.

 

My apologies, meanwhile, to Buster, WorriedDad, MichaelTampa, Alex and any of you other atypically enlightened men here on the forum who have quite obviously learned to adapt around/compensate for that pesky Y chromosome when it comes to the issue at hand!

[CandKRich]

.

Edited August 12, 2013 by CandKRich

[mrigsby]

I completely understand the frustration you girls are going through. My son has been sick since he was 6 years old and he will be 13 in March. Although I have known about PANDAS, everytime I have mentioned it over the years I have been giving one reason or another why this could not be what he has. Mainly because its still a research thing. Anyways, After seeing Beth Maloney on tv and reading her book, I now know for certain this is what my son has. Its just a matter of getting him treated. I live in KY. When my son was 6 years old he had chronic sinusitus for over a year. We went through 3 different specialist. During this year he had strep throat 5 times and was hospitalized 3 times. Once he was finally over these things, (or so I thought) it was only months until other things started coming our way. I couldn't begin to list everything he has been diagnosed with over the years. However I will say that he meets every single criteria for PANDAS. (ALL of them) After reading Saving Sammy, I immediately took my son to his pediatrician and begged him to do a strep test. He did not beleive my son had strep and said that he could not see a conection between my sons behaviors and body movements, and STREP. My son seemed perfectly healthy to him. But to satisfy me he did a strep test. It was positive. My son finished a 10 day supply of Augmentin today. However, I can tell NO difference in his behaviors. I'm quite sure that he will need much more. But I am hoping when we go back to be retested the doctor will finally see where I'm coming from.

As for my husband. He knows our son has problems. EVeryone who is around my son knows he has problems. He has OCD and Tourette's and every little thing that can go with them. He was just recently placed in a BD class at school. (Behavior Developmental Class) There are only 5 other kids in this middle school class, and most of them are very mean. However, the school said they had no choice but to put my son there because his behaviors have started disrupting the other children.

The behaviors that got him into this class are resulting from emotional lability. He laughs at everything continously, even when hes being scolded. The issue that I have with my husband is that he knows our son has all of these problems, but, because our son is above average intelligence he somehow thinks that our son should be able to control all of these behaviors. He is constantly yelling at him and threatening to take his stuff away and grounding him. My dad is the same way, he knows my son has problems, yet my son gets on every nerve he has cause he thinks he should act his age. I can't get it through their thick skulls that he can't help it. I admit, he drives me crazy too at times. He fights with his 5 year old brother constantly. Someone is always yelling or crying at my house. It causes constant Kaos! I hope and pray that I am on the right track and can get my son the treatment he so desperately needs. I have been weaning him off of medications all year long. Because for one think, none of them have helped. He has been on as high as 12 medications a day. And to think the culprit behind all of this is a strep infection.

[Worried_Dad]

Hah - you nailed it. I avoid doctor visits like the plague (ironic phrasing, I guess)! I think it comes from the "tough it out, just suck it up, only wimps need meds" philosophy many of us guys grow up with.

 

Funny enough, I'm that way with my own illnesses, but I'm the opposite with my wife and kids. Can't stand to see them sick and always want them to see the doc. With our PANDAS son, it's fair to say that I've been an obsessive researcher and chronic worrier, whereas my wife is much better at maintaining calm and perspective. I think it helps us both stay sane that we kind of "balance each other out" on this!

 

My boundless admiration (okay, awe) goes out to any single parents coping with PANDAS children, or parents whose spouses are not supportive. Man, I would completely fall apart in that situation... don't know where you find the strength!!!

 

 

I apologise up front for any men who don't fit this stereotype but I feel that the stereotypical male tends to ignore medical issues and won't go to the dr thinking it will take care of itself and go away eventually. They may also apply this to their kids.....

[thereishope]

I can't remember, did/does your husband have tics?

 

If he can only understand that it may be "tolerable" now but it can worsen and more problems can arise. Problems and issues that can truly affect your child's life and, in turn, your husband's. We owe it to our kids to try to protect them. Also, I'm sure your son would rather not ever have tics again! I don't think if he were to really speak up he'd say they are tolerable and he doesn't mind living with them.

[harmony]

So, I really pleaded with my husband today to read some of the websites I've bookmarked and some of the pages here I've posted. After several attempts of begging, he complied, but not happily.

 

Basically, he doesn't "see" ds's issues. I mean... he see's them but he doesn't "see" the problem in them. We haven't had a fit/rage in a few weeks, so things seem to have waned for now.

 

He says "The tics do no harm. He's not handicapped, he still functions." He feels like the therapist and Zoloft are helping the anxiety. So he sees no reason to dig for a diagnosis of PANDAS or TS.

 

I feel so alone in this. My husband makes me feel like I'm the one with the problem because I'm the only one who wants to get our son help.

 

I'll admit, ds's issues are mild and not near as severe as some of you have it. But they're there. Mild or not, he tics and has OCD/Anxiety/Tantrums.

 

My dh does not think it's PANDAS or TS. He thinks one day it'll all go away and he can say "I told you so."

 

Of course, part of me hopes he's right!

 

But realistically, what can I do? If I pursue PANDAS, I'm pretty much in this alone.

 

And I guess part of me wonders if he's right?

 

tatoomom

i am so happy that you posted this.

It has been 4 years since my sons first episode. He was diagnosed immediately (thank goodness for a ped that did research and found an explanation - my son symptoms were very severe - it was very scary)

My husband is out of town often and is not very observant even when he is home:(

 

My sons symptoms have been considerably mild since first episode- my husband doesn't even want to discuss it 99% of the time when I bring it up, he brushes it under the table by going in the other room or working late. and this makes me feel like I am crazy sometimes. then he makes excuses for our sons movements, anxiety and OCD - he has even gone as far as "blame my parenting" I know he does not mean this- this is just his weird way of dealing with it.

 

When symptoms get severe- my husband freaks outs and breaks down crying at night-he gets angry at me and dr.s- "why have they not fixed him???? We need to find NEW doctors. We need answers." I know it is because he loves him so much and it is too painful for him to see sometimes.

But then when he is well, my husband "completely forgets" about it and acts likes I am OCD for researching.

Yet, he had never been to a immunology, neurology, infectious disease, ENT or physiology appointment with us until last week.

 

Only in the last year has he had moments of understanding, when I feel like we are on the "same page". He even went into to work late to watch the TODAYS show- and then called me up while I was at school to share his excitement. Though he refused to read these posts or saving sammy. I have just came to the conclusion- this is his way of dealing with it. I need to stay strong for all of us.

 

I think people have different ways of dealing with situations, especially when it comes to the health of your child. Some are in denial, some get angry or depressed and some do research. I am so thankful to have found this forum for giving me the support that I need.

 

I wish you and your family the best of luck. Hang in there! You are not alone, you will always have all of us in this forum. (I just wish that I had joined years ago)

[Tattoomom]

Thank you all so much!!!

 

Reading your replies sure gave me a sense of stability and confidence! I appreciate each and every one of you who replied and especially to those of you who shared your own stories of similarity. It means a lot to me that I'm not alone in this.

 

Especially since today my bubble was popped yet again.....

 

We had our second visit with the Psychiatrist who put ds on Zoloft. After a few moments of chatting, I asked him if he knew about PANDAS. At first, I was pleasantly surprised when he ratted off that he knew Dr. Murphy when she was at UF, and he said he's been trained to recognize PANDAS. So, we were off to a good start until he said, "Your son does not fit PANDAS criteria." He said PANDAS is sudden onset of crippling, debilitating, OCD & tics and that those children cannot function. He said over night, parents lose their children to PANDAS. Our ds has clearly had issues for several years leading up to his tic explosion so he said there's no way it would be PANDAS. He rated our son's tic's "Moderate" and said if we'd like, we can try some medication to supress the tics to go along with the Zoloft for anxiety/OCD. He said from listening to us talk about his history, he thinks the rages/fits are more "behavioral problems" that we need to deal with.

 

I left there totally deflated.....