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Do ppl ever question your judgement over this? GRR


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My fil has no idea what we have been through. My dd can amazingly hold her symptoms in check for short periods of time and expecially around certain ppl. So this always leads to questions: Are you sure this is safe? Why have'nt they done a brain scan? Why is'nt she better yet? Why can't your own regular doctor do something for her? How come she seems fine around me? Why is'nt she is school? She seems just fine to me! Well, why is'nt she cured yet she has been on medication? I think this must be dangerous, you should'nt be playing around with this stuff.....AARGH!!!!!!!!!!!!

 

Meanwhile, he has never seen his princess rage for 3 to 4 hours. He has never felt the tensness all around. He has never tried to walk into a grocery store with her holding on to himm breathing rapidly and twisting her neck. Trying to do a full body rub with me in the store. He does not see or hear what we call the Autistic sound and tendencies. He does not believe that she had lost her ability to write. He thinks I WANT her to wear those ugly clogs in the middle of winter. (she has sensory tactile) He has never seen or newly defiant ways. He does not hear that the child sat on the couch unable to play games, hear music, pull up her pants (sensory), smile, laugh, chew food (was swolling food whole till recently after pred), flush, turn on water, duck when walking to car or driving in her own town, unable to see friends or relatives (actuall recoils), unable to stop hand washing or was taking showers untill the water was ice cold and still in there trying to finish some compulsion. Unable to read, type. Unable to enjoy a car trip because the sight of any flag makes her scream "I pledge alliegence!" this includes decals that I never see. and this is just the tip of what we were experiencing since Sept.

 

While she is not even near 100%, I am so ever gratefull to find this place and to have seen Dr.B who has only seen her once and she has made more improvement in 2/3 weeks than all them months. To me that is a miracle and enough proof......

 

 

But no, even though I have sent him many links etc. his new question is well can you find me a list of these people who claim thier children have been cured? People with email that I can corespond with?

 

I'm so frustrated with these questions, looks and just basically ppl making me feel like I'm not intelligent enough to know whats good for my own child.

 

Th anks for letting me vent (again) lol

 

Honeslty, what do you say to these type of family/friends who mean well......

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Yes, yes, and YES!! People questioned my judgment all the time last year. My own mother admitted (afterward) that she thought I had gone off the deep end when I started contacting doctors off the internet. How did I know they were legit? (um... I checked their medical records with the State licensure boards?!)

 

I was (fortunate?) that Dr. B found a large cyst in my son's sinus that was eroding his sinus bone. It was huge and dangerous. No one else looked for it because no one else believed there was an infection. They all thought he was depressed and I was anxious. Once the sinus CAT scan showed the cyst, though... the local docs did not waste any time removing it and getting special computer-guided equipment brought in for the first time ever at the hospital so that they would not damage his eye (since there was no more bone between his sinus and his eye!). Once my mother (and anyone else who doubted me) saw the CAT scans they stopped questioning my judgment. Then they started understanding that his joint pains were due to immune complexes (C3D 55) and not a whiney kid.... and the headaches were due to sinus blockage and not anxiety... and the tics were due to antibodies attacking his basal ganglia (Cam Kinase 156) and not due to a tic disorder... and his handwriting problems were due to abnormal dopamine levels in his basal ganglia from the autoimmune response (the difference before and after prednisone is shocking) .....

 

Now everyone asks me why he hasn't had IVIG yet (needed to change insurance).

 

I still find that when he goes into an exacerbation people are initially very patient as they see how suddenly he gets bad. The problem I have is that they (teachers, my dh, other family members) don't realize that exacerbations don't just end quickly. Then they start to question me again and..well... it sounds like the IEP meeting that EA Mom posted (It is all your fault. You worry too much and you give your son headaches and make him cry).

 

So... hang in there! If you want - PM me with your FIL's email address and I'll have a chat with him!

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T hanks Kim! It is true, like an IEP meeting everytime I turn around. I may take you up on that offer about the email.

 

I try to be patient with ppl because I understand that they do not understand. This is something that no one could ever understand unless they are living it. But when ppl start throwing random questions at me I start sounding like a bubbling idiot because I know I'm using words/theorys and descriptions that are above and beyond them. Only because I'm talking from experience of what I have already been going through and they are just either realizing that something is very wrong or wondering why we are doing all of this because they do'nt see it. LOL! See I did it again! Bubbling!

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Hi Shadowtails,

I so sympathise! No one really knows what you and your dd are going through, until they experience it first hand. I've never thought to videotape it...that might have helped our now exGP to understand that it wasn't in my head...my ds could hold it together in his surgery but then go to pieces afterwards! Grr. Problem is, I doubt that my ds would ever let me videotape his meltdowns either. They really stress me out, and it doesn't help not to be believed. The problem is this is such a 'new' condition and until it's more widely accepted, people like your fil will continue to be doubters. You can try to make this clear that you need his support not his doubt and his current attitude is a distraction. (I've been known to cut off contact with family so I could deal with the urgent stuff...too many sleepless nights without them adding to it!)

Hang in there! Maybe print off the stuff in the pinned threads and suggest that he takes on the role of researching this condition...

Big hugs to you!

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Do people ever question my judgement over this?

 

ALL THE TIME! EVERY DAY! :wacko:

 

Even my DH operates from a level of skepticism that, frankly, is probably a healthy balance for my unbridled enthusiasm. But at least, coming from him, it's with respect and love, which is a lot more than I can say for some other people who've felt free to judge.

 

Over time, though, I will say that the "proof being in the pudding" has won me some validation, as it surely will you in the end, as well. For weeks after the abx kicked in, our DS's psychiatrist kept asking, "What do you think accounts for this sudden improvement?" Every time I shouted my response: "The abx, of course!" To which he would wryly smile and shake his head: poor woman's off the deep end, he was thinking. But I kept shoveling the research at him, putting our journal under his nose, etc. Finally, he opened his mental door just a crack, I got my foot in there, and we were off and running. Now he sees the dramatic difference in our DS, and he's been able to verify a lot of what I've been telling him for months through discussions with his colleagues, newly emerging research, etc.

 

On the other hand, some people will never come around and will always think that they know better than you. But that would've been the case even in the abscence of PANDAS, wouldn't it? Don't those same people tend to second-guess you anyway? Your parenting techniques? Your disciplinary measures? Etc.? There's NO pleasing some people, so I say please yourself and your child and to heck with the rest of 'em! :P

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I think every one of us on these boards can relate. We wouldn't take our son anywhere when he was bad, so most people never saw what was happening. My mother was one of our biggest doubters, she kept telling me that it was just how "boys are". Really? All boys have a 4 hour meltdown if their pop tart is broken? That's normal to you?

 

What turned it around for my mom was when my parents had to take the kids overnight for us when we both had to be out of town on business. My mom called me in a total panic because my son had taken off all of his clothes, was peeing in random places all over the house, and every time she tried to come near him with a pair of underwear, he would start screaming and crying, biting himself and banging his head on the wall and floor. What should she do? I have to admit, I was a bit of a smart ###### and told her not to worry - it's just what "boys do" right? (And then I told her to give him a motrin...)

 

She never doubted us again, and every time after that when she would babysit she has been meticulous about all of his meds and supplements.

 

You can't let anyone get to you - you know your child best, and are their best advocate. But I've made the offer before, if anyone doubts this condition is real, I'm willing to loan out my son for a weekend - medication free - with a supply of broken pop tarts to kick the weekend off right!

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I don't post much, but let me say..."I LOVE YOU GUYS!!!"

 

This is what I have been focusing on a lot lately, and it just p***es me off!!! Not all of it is in meanness, but that doesn't help, it just frustrates me. Do they think this is fun, do they think I'm so stupid that I whatever I read I believe, don't they know me at all or value my judgment? And I'm talking about some pretty close spectators here too!!

 

If our children had cancer nobody would question anything we did.

"You say you are enrolling your child in experimental study where you have to go to the deepest, darkest rainforest to drink the saliva from an ant while they sweat in a steam bath that come from an underwater spring in the ground..awesome...its cancer...you do what you have to do!! I'm so happy you have a possible solution." But tell them about pandas and abx, and ivig, and pex, and it becomes... are you sure you aren't just worrying too much?. (And this does not mean I want me kid to have cancer...just comparing...just got to put that out into the cosmic universe so I don't jinx us)

 

Ugh...I'm getting worked up, but doesn't take much these days!! Thanks for letting me vent!!Glad to know I'm not in this alone!!

Sarah

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I can totally understand. Over Christmas, my mother said she never really thought there was anything wrong w/ our son. Well, she lives 1000 miles away and sees him a few times a year. Add to that, he is capable of holding things in when he needs to. The school must think I'm a lunatic. DS has never had problems at school. Even our friends have never seen him at his worst. I just wouldn't expose him to others when things were really bad. He wasn't all that bad in the doctors office either.

 

Oh, and I've had numerous people question why I'd give him long term antibiotics. Didn't I know I was setting him up for resistance? I always answer w/ what would you have me do, let him be mentally ill? Is that a better choice? Heavy duty psych meds are preferrable to the chance of resistance?

 

Cindy

Edited by nicklemama
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Hi - my family feel my pain but don't get the science. Why would they? They haven't spent hours reading and re-reading every little scrap to be found on PANDAS and anything vaguely related. My husband would get the science and certainly gets the pain, that's why he knows what we are dealing with but leaves it all to me 'cos it's too painful for him. That leaves my local pediatrician, who I see regularly and who gets the pain and gets the science and really does seem to understand the toll this awful disorder takes on the child and the family. That's why I usually blub like a fool in the car when I've been to see her 'cos it's like therapy for me. It's a release to talk to someone who doesn't think you're a delusional, munchausen-by-proxy nutjob!

 

PANDAS isn't clear-cut, nor easy to treat, and people really just don't get it until they've been so close to it that they've ate, slept and breathed it. And who would willingly get that close to PANDAS.

 

I went through a period where I wanted to educate the world. Now, for my own sanity and to best protect my kids, I shut up. I hope that one day, I'll have enough time and be brave enough to be vocal again. I am in awe of those parents who are strong enough to support their own children and advocate for the rest.....

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Oh goodness - YES!!!! All the time!! :( Ughhhhh!!!!

 

My ex, who refused to believe she had PANDAS for most of the last two years, now insists there must be a trigger at our house or when she is with me as "she NEVER has these episodes when she is with him for visitation". Grrrr!! Now, that he at least believes in it, he seems to want to convince the medical team that he is coming to the rescue, seeking to connect all of them and he'll "do anything to help his daughter". Sigh... everything except research it himself, take her to endless appointments, find the right docs who CAN and WILL help her, alter her diet to work with her Reactive Hypoglycemia, etc, etc, etc.

 

Her middle school has been nothing short of a miracle; however, her elementary school refused to accept, help or respect what was happening - regardless of the literature, doctor's letters, etc that I placed under their noses.

 

When we were in the hospital over Christmas, the ER doc at the Children's hospital, pulled me out of the room (with her trying to cling to me) to ask me "if we'd considered the possibility that this might be psychiatric". I asked him why she would show improvement when the strep is eradicated and worsen EVERY time she gets strep again. ?!?!?!?!! He didn't have an answer... yeah, because he knew little to nothing of PANDAS. I wish he had seen her the morning after the IVIg when she told me she felt better than she had in longer than she could remember. Schmidt... I'll be back to chat with you when she is much better, doc.

 

You go ahead and have your FIL contact me... I'll be delighted to have a few chats with him for ya. :) :)

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I'd like to know more about the "sensory/tactile" issues as my DD has most of the things you list in your initial post. Where can I learn more about that and how to help her? Thanks!

 

... and I do mean it about emailing your FIL... feel free to inbox me.

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Thanks for all of your responses. I really do appreciate it. I realize ppl mean well; but sheesh,

 

I'm sorry, I really do'nt know much about the sensory tactile. I'm hoping to learn as we get her well. All I know is that we thought her rubbing issues as far as unable to button pants etc., Wear shoes, and hopping into bed or on the couch was ocd. The difference is that if its ocd she can tell me exactly why she has to do something. With these, she complains that she ca'nt rub and has no explaination as to why. An example would be: her doing a full body rub to me. I would ask why are you doing this? Answer: Because your clean. (I'm clean and if she rubs her hand or whatever on me, it is now clean too)

 

Now, try to get her to put shoes on. The eyes get hugh and the anxiety is way up. T hreaten her with punishment and she will cry and rather take that punishment because it is too unbearable to feel that sensation.

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