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Now comes the guilt....what I wish I'd done differently


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Wish I were a man, because if you could really follow the simple advice they give when you are down and need to vent, then life would be a bowl of flippin' cherries. NO offense to men...in fact, if you are one of the few men on this forum, you probably operate different than most men :D

 

Can I please just dump some guilt out here. It's all hitting me as I read over and over about prompt treatment, etc. giving better outcome.

 

IF ONLY....

 

...I had known that ocd in a 5 year old was not just a quirk or phase

...I had known that a couple tics (like 3), again, is NOT just a phase, and IS SUDDEN ONSET

...I had kept taking dd to the doctor like I did her first 4 years, as well as my other 3 kids, for every fever, illness, etc.... and got antibiotics...which probaly kept her from getting extreme so long...

...I had not tried to protect dd from overuse of antibiotics, letting days of 104 fevers go on, and on....God this makes me sick...

...taken her in for antibiotics for the horrible skin infection, which started a week or two after the high fever, and around when the tics exploded....rather than just put peroxide and neosporin on it for 2 straight weeks....

....and then took older brother in for the infection she gave HIM, and got abx...

...and then took older sister in for the infection they gave her...and got abx...

...and then took brother back in for getting the infection again, and got abx...

....and finally, 3 months later....took her in for abx after she got the infection again...

....and then only gave her 10 days of it

...I had googled sudden onset of tics sooner, and known that pandas existed.

...I had known that PITAND existed, after knowing the tic explosion was not from strep, but likely a viral fever, and then skin infection...

...I had tried the abx sooner, that I talked a friend's pediatrician into trying, and he called it in, and I still was afraid to try without getting the opinion of a pandas doctor...

...I had gotten more appt.s scheduled, done more testing,

...I had more $$ so that it's not an issue...

...I weren't so afraid of making dd more odc about germs by taking her to more docs

 

God, I should be taken away, when you read all that. I hate to even admit it all, when I read it over, I really screwed my baby royally. All in trying to protect her from what??? Antibiotics??? Which I am now giving daily...and getting nowhere.

 

Today just sucked. Sorry to dump. Had the dental apt. from #$*& and now dd is having one meltdown of anxiety after another, worrying herself sick about loose teeth, etc.....it's totally unreasonable. And it makes me want to just give her some Zoloft!!! Which I know is not a good idea.

 

And I'm so scared that this is for life. That I've waited too long to get anywhere near a cure. That I may need to keep her in a bubble, which I just won't do.

 

:( :( :unsure::wacko::blink::o:blink::wacko::blink:

Edited by eljomom
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I hear ya! I've been thinking the same thing...what if? And the conclusion I came to was that with hindsight I would do it very differently but...in reality nothing could change until PANDAS/PITANDS is a well recognised condition and the symptoms are readily recognised. I'm just grateful I found Dr K's website and this forum when I searched for 'sudden onset'. We can only do the best we can with what we've got! And do what we can to alert others.

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Eljomom -

 

I am so feeling your pain and guilt, and I do not mean to disrespect your feelings. However, I hope you can mold those feelings into anger and irritation over the injustice of our medical system that does not adequately recognize the medical underpinnings of behavioral issues... and I hope you can also mold those feelings into resolve to help your child - from this day forward - to be all she is meant to become, and to make a difference, in whatever way you can, to help other families to walk a smoother path than you.

 

You are reminding me that we don't spend enough time talking about the guilt and the wasted time. We need to get that out. I don't know if you have a counselor or a therapist that you work with, but if you don't then I suggest you (and everyone on the board) think about finding one. We are carrying a very heavy load here. We need much strength and vision to move forward. We cannot do it alone.

 

I don't know if you've seen the article by Pamela Varady on PANDAS Resource Network, but I think it is excellent - http://www.pandasresourcenetwork.org/about-pandas/patient-information.html

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Oy I feel for you... Don't knock yourself down. You are doing the best you can with such a difficult situation. I am one of the mothers who always ran to the doctor whenever my child was slightly ill and I am still in the same position that most of our forum friends are in. I have found that doctors want to be right.... They don't want to listen to what parents gut feelings are. My kids frequently tested positive for strep and then there were times where I was certain they had it and was told it was viral. How many times doctors sent us away with no treatment saying it was viral kills me. One doctor told me I don't need to run to the doctor for a cold...I think I know the difference between a little cold or when my child is really ill. Oh and then there was a doctor who told me that pandas is controversial. This is when I told her I think this is what we are dealing with. I brought my son in to test for strep when he was banging his head and was completely not himself. She said she doubts its strep, gave new this whole messed up speech as if she knew anything and then came back... Well its positive so we will treat with antibiotics! otherwise if was negative she would have sent me away with no help. I am so upset of all the times I had to pay these incompetent doctors for wasting my time! its not your fault and hopefully one day soon all our children will be helped by the research and doctors who really do care.

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Thanks guys....I wish I could blame it ALL on the docs, and at the end, when it got bad, before I really knew about PANDAS and was convinced about it....I can blame them. But the last few years, when I didn't take her to the doctors for high fevers and being very ill.....had I just taken her in and gotten antibiotics, this could have been prevented?????? I know they say that treating strep prevents complications such as Rheumatic Fever (well, I know this NOW), so why could this not have been prevented by getting treatment for strep, etc....this is what kills me, every time I see my child tic, ocd, stuggle with anxiety, unable to draw like she once could, I am reminded that I could have prevented this....but I didn't take her in to the doc b/c why? Didn't want to overuse abx, didn't want doc to think I was a nervous nellie....

kimballot, I will read the article you linked....thanks!

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The guilt I feel is overwhelming. I feel it is my fault. I feel responsible for not figuring out and researching pandas sooner. There are many other parents who figured it out within the first year of symptoms and I wasn't one of them. I researched everything else. I just believed the doctors when they said "Well, it looks like pandas but his titers are low." I am so angry at myself. It was my job to protect him and I failed. I am angry at myself for pursing Lyme so hard in the beginning. My son could have been put in remission so easily in the beginning. Now he may have to suffer for the rest of his life. Why no doctor asked for his medical history is beyond me. Why no one looked at all of the strep in the household? My guilt tortures me. Every time I look at him suffer I think to myself that this is my fault. I have had many people tell me that my way of thinking is faulty. The doctors are the ones who should have figured it out. I understand this on a rational level. But the voice in my head continues.

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You know what? I think the fact that we are here, and have FINALLY figured it out, is HUGE.

To me, this is such a rare and unusual thing, and I have my own laundry list of woulda coulda shoulda (how on earth I missed all the OCD, unbelievable) and when I explained it to all the experts, and they were clueless, and all the money I spent thinking it was different stuff, going on dead end roads...

I think that's the name of the game for the majority of us here.

I see you working really, really hard right now, determining your next step, gathering information, and moving forward.

God Bless, hang in there,

Sarah

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All I've heard since I can remember in the media is the overuse of antibiotics harming our children. So what are we to think? Although the idea of NOT getting an antibiotic for an ear infection makes me shudder! Luckily I never had a doctor that wouldn't prescribe them.

 

I deal day to day with parent guilt and what if's (social worker for developmental disabilities). It won't do any good except cause you MORE stress. You did the best you could with what you knew. We all made real bona fide mistakes with our kids and nothing I see you writing there even sounds concerning to me (and I USED to be a CPS investigator ;)). You got treatment when you felt it necessary and followed doctors advice. What else could you do? If I didn't have the job I do - I probably would not have learned about PANDAS quickly either. And learning quickly didn't help much. I have spent the last year flip flopping with my own opinions on what treatment to take - at several points taking him off ABX because I didn't want him to be on them forever. Now I wonder if that made him as bad as he is now - if I had just left him on them initially, would he be all better now?

 

I once forgot to put the baby gate at the bottom of the stairs when he was 9 months old. Found him 2 minutes later teetering on the top step. I took the whole flight in one leap I swear and got him but I cried for an hour!

 

I once left my purse with my little pill box on the table and he was chewing excedrin 2 minutes later.

 

I closed the car door on his foot.

 

I fed him a frozen meatball with onions in it (our only food allergy).

 

I forced him to wear shoes that were too small bc I thought he was just being fussy about them.

 

Now THOSE are seriously stupid screw ups that made me cry! You can't blame yourself for PANDAS

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Take it from someone on the other side - I did take my kids in for every sniffle, etc... (and still do especially now!) I did get abx at every possible turn because I didn't want them to suffer, I did question the pediatrician repeatedly when my son's "terrbile twos" esclatate beyond what I felt was normal - even when no one else did. And I was right.

 

We caught it early. And we started treatment early. But you know what - we're still not better. We still had a meltdown this morning because my husband touched the donut bag. The meltdown escalated because mommy wasn't leaving the house at the EXACT SAME moment as him and daddy. The meltdown continued to escalate because daddy wasn't in the "right spot" in the car line when it was his turn to get out. And I wake up every day wondering if we're taking we're doing the right things.

 

What I'm trying to say is this - don't beat yourself up. This disease is ###### on everyone, and it doesn't matter what path to dx you've taken, you're still going to second guess yourself because you're a GOOD PARENT and that's what we do - we rack ourselves with guilt over not being able to prevent every bit of suffering our child has.

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Yes i think no matter what we do, we as moms are wired that we should be all knowing and all powerful every step of the way.

 

i have beaten myself up a xillion times for not seeing it sooner. all those early chronic ear infections - don't they say not to give abx? and the one time i caved and gave poor screaming little DS amox and he got a rash - well i was sure it meant an allergy...now i wonder...was it die-off?? shouldn't i have seen it?

 

all of those things that have been posted - i have done and felt and failed every one. including my marriage which completely fell apart, and financially, i have spent every single cent i owned (emphasis on ownED in the past tense) my entire life savings and inheritance on this process, and am completely resource drained. heck, we had to do a fundraiser just to treat my son with ivig in november.

 

i try not to think of it in the middle of the night when i wake up, especially. and yes, i know, we are parents and can only do what we can do. but the path i go down is, i am also a provider so i REALLY should have known better. double triple wammy failure.

 

anyone of you would say that's crazy, and i would tell any of you the same thing. we are extraordinary moms and we are making a difference not only with our children but with each other's children and the world's children, ultimately, by revealing this process and this entity called pandas.

 

on the flip side, i know that my son feels really bad about the stress his illness has created in me, he feels my stress and also, he knows, i'm always always there for him. i do everything i can to show him i'm fine, and happy to be there in whatever way, but i'm sure he feels the vibe beneath the hug and smile.

 

recently as part of his healing process i've had him work a few sessions with a somatic therapist who does some clinical hypnotherapy. I noticed, that although he's having such a good response to the ivig, whenever he has a symptom, he super focuses on it and it scares him. So, i wanted DS to feel inside of him his undamaged healthy place, deep down, since he's been sick most of his life he probably couldn't even remember that there is such a place. he's only had maybe 3 sessions but it helped instantly and he has told me a number of times he wants me to go experience this so that i can remember that i have a healthy place i can go to inside of me. they are so wise, those children of ours.

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I think everyone on here wishes they could have a do over and do things different. I have a long list of shoulda, woulda, couldas. Take that anger, frustration and even guilt and let it fuel your fight.

Edited by Vickie
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