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appointment was a disaster


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On a previous post I talked about going to get baseline neuro-psychological assessement done when dd4 is well.

 

We had it done on Friday and dd4 has been pretty much back to normal, so the timing was great. The great news - dd's assessment came back as no issues and she is doing very well and developmentally ahead of the game. No surprises for us - unfortunately, the docs seemed to be so proud of themselves to come in and tell us she was fine, and when we said we know - the point of the assessment was to have the baseline done so when she is not doing well, we can get a handle on the difference. That is when the crap started....

 

"It's not that we don't believe you, but...", "You don't want to be making her more sick than she is...", and the best - "She doesn't fit the clinical criteria for RF, PANDAS, RA, Serum Sickness - but does fit the clinical criteria for the precursor for what you have (meaning my bipolar- and from what I gather, there is no clinical precursor criteria)". I asked directly - the previous docs took us through the clinical criteria for RF, PANDAS, and Serum Sickness and she fits them all - what do you see that she doesn't fit? Answer - you don't want to make her more sick than she is. What the????? This makes no sense and I felt less than a piece of dirt and they were looking at me like I'm making her sick somehow. I know she is doing well right now and that was the damn point on doing the assessment in the first place. Because she is doing well, now we are crazy? The topping of the cake line - "She's doing fine now, there's more in medicine that we don't know than we do, forget the past year and move on and try not to create anything"

 

This has completely deflated me and makes me feel like I don't ever, ever want to go see another doc again. I will not be surprised if Child Protection comes to my door this week for a follow up. I thought these appointment were to creat a plan for if she gets in a bad place again - I did not expect the investigation and dismissal portion. They said they were not referring her to immunology, rheumatology as that would be a waste of resources and take away from the children who really need them.

 

Oh, also forgot the wonderful - "sometimes you need to be in tune with your child and behavior can be addressed with hugs and kisses when they are needed and time alone when that is needed" By then, we were feeling so beat up, we just smiled and nodded. DH and I talked after and he said - so when she is hallucinating, a hug and kiss is going to make it go away? Or how about when her kidneys were swollen and hardly functioning? Hugs and kisses is the new cure?

 

I am a mix of angry, hurt, and deflated. Time for some serious self-care to regroup and get back at it tomorrow...

 

Sorry for the long post, and I so appreciate a place to vent this to help keep my sanity...

Edited by junkyardjean
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Those doctors are ignorant and uninformed. You are doing what you need to for your child. You are being a good mom. As hard as it seems right now, keep fighting for your child. There are so many compassionate and knowlegeable physicians out there that get it. These physicians are NOT them. Hang in there and don't let them discourage you!!

 

Colleen

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So sorry you had to experience this. Makes me fume.. we had a similar experience with Infectious Disease at our local children's hospital.

 

If I can help it, I no longer talk about PANDAS with anyone (doctors or fiends/family) unless I am fairly sure of a pro-PANDAS response. Bit cowardly, maybe, but I just don't have the emotional strength for it. I was just felled when we went to Inf Dis and got a similar response/ I cried the whole way home.

 

I save my energy for my kids now and only go to PANDAS drs. It's difficult but try to brush it off. They are in the wrong not you.

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Sadly, I can relate. I am sure many here can relate to ignorant or dumb docs.

 

When my kiddo had her first "episode" that we now assume was related to undiagnosed Chiari at 15 mo, she screamed blood curdling screams non stop for about 5.5 hours---at the 30 min mark we took her to the ER. The hospital spent more time (4.5 hours) trying to prove we had beaten her in the past or had beaten currently than they spent trying to figure out what was actually going on. They put security guards at her ER room door, to make sure we did not flee with her, and would not even address any issues we were concerned about until ALL the x-rays came back negative for abuse.

 

THEN she suddenly became a sudden medical emergency because she was screaming bloody murder and they did not know why. Then they insisted on a spinal tap within a few minutes of drawing the blood work and UAs (that we had been begging for for over 4 hours), and before the results were back for those. I denied them the spinal tap, and they tried to guilt me into it stating how urgent it was. I told them if it was truly "urgent" then they would have wanted it 4.5 hours ago----now they would have to wait the 15 more min until the blood work came back and only if there was a good reason could they do the spinal tap. In that 15 min the "light switch" flipped and her screaming stopped. At her age of just over 15 months, they actually sent us home with a colic DX and a piece of paper that stated: "Colic will resolve by 8 mo old" :blink: .

 

We were quite relieved to know that 7 mo ago our issue was actually resolved--even before we were aware it was an issue, we had all just apparently missed the memo <insert sarcasm :ph34r::angry: >.

 

For this and many many other reasons, I have little to no faith in the medical community.

 

Sorry for the obvious sarcasm, kiddo is on a downward spiral, and my humor is very, very, very (did I mention very?) dry right now.

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I'm so sorry that was a miserable experience. We did well with our neuropsych as it was during a flare up and did a bang up job of demonstrating the impact on DS' learning. And the neuropsych wasn't close-minded to PANDAS either. I had the advantage of working with a variety of special ed folks around the state and getting the scoop on who was really good and who to avoid. Then I called the most recommended one and interviewed her before I'd book an appointment. Not an advantage most families have unfortunately. But I felt like you did after we visited a neurologist at BCH - absolutely furious. Considering what's happened there since then, we must have had a host of angels taking care of us that visit.

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I don't even know what to say. I am so sorry. So it is ok for them to say "bipolar" and that just solves the problem?? So now if she flares again it is because you are not 'In tune" with her and not giving enough hugs and kisses????? This is the height of idiocy. My DS first symptom of PANDAS (overnight) was that if we touched, hugged or kissed him that he would turn into a zombie. We were not allowed to do these things and if we did he had to go through an elaborate ritual of wiping it off somewhere and then "wiping on the healthy" . Then if he accidentally touched somewhere that he had wiped off the unhealthy he would go into a panic trying to find somewhere he had not wiped yet. Oh I get it now, I should have sent him to his room for some "alone" time. Oh yeah. He would not be 2 inches away from me- even sat right next to the shower getting wet from the spray because the separation anxiety was so bad. What you experienced makes me sick to my stomach. You and your family will be in my thoughts and prayers today.

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Junkyardjean, have you considered the possibility that your bipolar may actually be PANS? DS19 looked, for all intents and purposes, like he had bipolar. We even tried several different meds, and they either did nothing or made him sicker. Then we tried abx, and it was a miracle. We tried the abx 3 more times, and sure enough, it went away. Finally, we did PEX, and finally IVIG, and so many of the symptoms have resolved.

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Thank you so much for all the kind words - I have been working hard to find my grounding since Friday and not let it overwhelm me...

 

I was asked by the dr when my first symptoms started. I explained to her that I was young, but that as an adult, I discovered I was very badly traumatized over a period of time very early in my life and that my medical team feels strongly that many of the symptoms were related to the trauma. I started my bipolar symptoms on schedule in later teenage/early adulthood (I do feel my bipolar is the regular run of the mill kind... complicated by the previous trauma of course). I am in a really good spot and have been for a long time. I haven't been on medication for over a year as I was in a place where I could bump up the non-medication coping strategies and that is working well.

 

I never in a million years dreamed my psychiatric history would impact the care of my children... The stigma is so sad and so hard to fight all the time - I think that is why it is important for us to get the proper treatment for my dd. If it is bipolar, fine - just give me the data that shows that. The docs on Friday were unable to do that, so their "theory" doesn't hold a lot of ground with me at the moment. The previous docs were able to show me the criteria for RF, Serum Sickness, and PANDAS - their ideas make more sense because of it.

 

I also know that regular bipolar does not disappear (like dd's symptoms) - I feel lucky that we are early enough in the game that she is coming back to baseline so we can see the difference. Every day, I have to work with my bipolar in managing it. DD is only 4, so does not have the cognitive ability to manage so well for so long in between episodes without anything. I think my bipolar is an easy cop-out for them to fall back on when they are seeing things that don't make sense.

 

The phrase - "When you hear hooves outside, you think horses. But what if it is zebras?" It is foolish to make assumptions and not be curious in my eyes... I think we have a "zebra" on our hands :P

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