Husband is NOT on board

[EAMom]

Thank you all so much!!!

 

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.....

 

Ughh...rages, ocd, tics...sounds like PANDAS to me!

 

Many on this forum have a more "chronic" version of PANDAS. Also, many don't have the "classic" OCD/tics...rather more ADHD symptoms, mood symptoms (bi-polar behavior), or even autistic behaviors.

 

Moreover, there are others (including my dd) who did have the "explosive onset" but also had "low grade" episodes that went undetected for years (b-4 the parents learned of PANDAS)...periods of anxiety, periods of handwashing, sensory defensiveness, urinary frequency, etc.

 

I really like this paper by Dr. Trifiletti (and "the Italians" ) ...because it mentions "variants" (including adult and chronic forms) of PANDAS (which the parents on this forum know exist...but most docs don't b/c that's not the "classic" textbook PANDAS that is on the NIMH webiste). http://cat.inist.fr/?aModele=afficheN&cpsidt=18257709 I have a copy of the full-text if you would like me to e-mail it to you (just private msg me your e-mail address).

 

It would be great if Dr. T. would write up something more on "chronic PANDAS" as I feel it is quite common but unfortunately these kids are less likely to get diagnosed b/c they don't have the "sudden onset" that Swedo talks about. Because it's not an "overnight" change, docs too quickly dismiss these kids as "not PANDAS". It's sad (and ironic) that the mom's/dads on this forum are so much better at diagnosing PANDAS than 99% of the docs that are out there. I suppose it helps to live through it personally to really know PANDAS. (I hope a bunch of our kids grow up to be awesome PANDAS docs...wouldn't that be great?)

 

I would recommend running lab work with Dr. Cunningham when the lab re-opens after the holidays.

[thereishope]

Sorry about that appt. Those are the time when you sit there, bite your tongue, and just try to bolt as fast as you can. I love it when they somehow "know somebody" , so by some degree of separation, they are an expert as well.

 

I wonder when he was taught "the signs of PANDAS". Put him on your list of people to educate when you get all this figured out....and you will get it figured out.

 

 

 

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.....

[Tattoomom]

Sorry about that appt. Those are the time when you sit there, bite your tongue, and just try to bolt as fast as you can. I love it when they somehow "know somebody" , so by some degree of separation, they are an expert as well.

 

I wonder when he was taught "the signs of PANDAS". Put him on your list of people to educate when you get all this figured out....and you will get it figured out.

 

 

Thank you Vickie! I needed to hear that

[Suzan]

"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.....

 

URGH!!! I am sorry that happened and I'm sorry, for his sake and the sake of his patients that he doesn't know what he's talking about. I know you will get the help and support you need. I remember when I felt totally alone but I kept on searching and learning and have found a nice support system for my girls.

 

HUGS!

 

Susan

[familyof4]

Harmony - your life sounds like a mirror of mine. My husband works / travels so much that he was very out of touch with the family. He saw the rages as me not being tough enough with discipline. So I would let him handle a situation and it would get so out of hand that my son would end up ticcing like nuts for hours after and my husband in tears late at night that he was too hard on him.

 

I really thought we were headed for divorce. It's hard enough to handle a kid with PANDAS let alone not have support from your spouse. Luckily my husband finally got on board. His family never discusses medical issues and is in denial that anything could be wrong with any member of the family - and if something is wrong keep it to yourself. Thankfully my inlaws are finally on board - At my son's first grade concert my father-in-law asked why his grandson was wiping his nose, tugging at his shirt and pulling up his pants. My mother-in-law replied - "He's ticcing". I wanted to jump out of my seat and dance - they finally "get" it.

 

One thing that helped with my husband (also not the observant type), was to point out some behaviors, give my son motrin, and point out the difference.

 

Hang tough. I know what you are going through.

[Tattoomom]

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

 

 

Not that he remembers.... he was probably undiagnosed ADHD/OCD. Unfortunately, his mother is an alcoholic and was intoxicated during his childhood so she doesn't remember a thing.

 

You'd think he'd remember ticcing, though?

[thereishope]

You see where I was going with that. If he ticced at all as a child, he may have a defensive measure about it. If he ticced, he sees what you're doing as against him. That something was/is wrong with him. He also would face the fear that he may be the one responsible for his son's suffering.

 

Not that anyone should feel like that, but some peole do.

 

You would think he'd remember ticcing. So, maybe he blocked it out of memory or he decided it's something he doesn't want to live through (even through memory) again.

 

Even if your son's main symptom is a tic, I'm assuming you have mentioned OCD as a PANDAS symptom. You see how your husband may make the connection to himself?

 

You husband may have a lot of internal struggle going on right now.

[tantrums]

I'm with you here as well. My DH is finally starting to "get it" but sadly is not much better than I at handling it right now. In the beginning though - DS symptoms came on fast and furious. I KNEW it wasn't right and something had to be wrong. DH kept insisting he was just a normal kid. I finally said to him one night - "this would be normal if he was THREE! He is SIX!" and he finally started to get it after a tantrum that went on for over 2 hours. Still though, anything that involved neurology and psychiatry completely boggled him. He couldn't accept it. The idea of antibiotics and then DS will be fine - that is as far as he has gotten.

 

I'm having major surgery next week and REALLY worried how this will go down here I spend a lot of time trying to de escalate DS and keep things calm. DH is actually more quick to fly off the handle or just still joke with him, which he can no longer handle (and DH just does NOT get for some thick headed reason!). DS still needs an MRI, there were scheduling problems so it didn't get done before my surgery. I told DH he will need to take him and he looked at me like I had three heads.