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The verdict is in...


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No, I didn't have any tests done, but the experiences I have had in the last month have confirmed my suspicions about myself having pandas. Where do I start LOL!?

 

So, in the past I have always become OCD/depressed/etc when my boys were in a pandas exacerbation. Well, I have always assumed that it was because of the stress of the boys tanking that would lead me to such depths. Logical conclusion, right? But as each strep infection came our way, I started to wonder if there was more to it. Now I know there is definitely more to it.

 

In mid August my boys brought home what I believe to be strep. I didn't have cultures done, as some of you know we do homeopathy so I didn't need (nor want to see the dreaded thing) a culture. BUT after a fabulous summer, all four of us developed sore throats, congestion yada yada. And of course the boys had sudden onset pandas symptoms. I pulled my oldest son out of it within days, my youngest was more of a challenge, but he was pulled out of it eventually.

 

Fast forward to a week ago, and both boys are getting sick again. Both exhibiting pandas symptoms again. I get the boys out of pandas again with their remedies, but here is where it gets interesting.

 

A couple days after the boys "normalize", I start to get whatever they had last week (have to assume strep). At first it's like a cold, but by the next day it's a full blown sore throat, severe flu-like symptoms, congestion, etc. Halfway through the day, the thought enters my head: what if herd-immunity levels drop so low that the vaccine exemption program gets cancelled and we are all forced to vaccinate our children...will we have to up and move to another country to avoid forced vaccination? and what if they alert customs and we can't get out in time?

 

So this thought completely takes over my head to the point that I want to get on the internet and start researching other countries, or I want to call my husband and find out the details about a transfer overseas. I start to realize that this is a very extreme reaction, especially when I am literally too sick to move. I simply can't put these thoughts out of my mind, I'm almost in a panic! this goes on for an hour.

 

I decide that I probably need a dose of my remedy (which happens to be the same remedy that my oldest pandas son takes for pandas) and within 30 minutes my mind is relaxed (and my sore throat is gone)! (editing to say that even though my sore throat was gone immediately, all other symptoms stuck around for another day and I had to take another dose of my remedy the next day when anxiety set in again)

 

So I have to assume I have pandas. Sudden-onset obsession about (somewhat) irrational fears during an acute illness?

Edited by Stephanie2
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I wanted to add here that this morning I was thinking back to my very first "panic attack" which occured in college after a series of Hep B vaccines (oh and it happened in August, no surprise there if it is strep-related). Am I just another vaccine-injured "kid" with pandas, just late-onset? I don't believe in coincidences anymore. When are these doctors going to start listening to us moms?

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I wanted to add here that this morning I was thinking back to my very first "panic attack" which occured in college after a series of Hep B vaccines (oh and it happened in August, no surprise there if it is strep-related). Am I just another vaccine-injured "kid" with pandas, just late-onset? I don't believe in coincidences anymore. When are these doctors going to start listening to us moms?

 

 

*Hi Stephanie,

I experienced a similar life changing event in finding out I suffer from the same disease/illness that my daughter does-

so many years, I called it everything else- certainly thinking to myself well, with this stressful home life/child issues, no wonder I'm like this- to convinced I was on the Alzheimer trail like my grandmother, my insomina for years was why I had chronic fatigue- on and on, and thinking once my child got better, then poof! my whole self would change somehow.

I can't tell you what it's like to finally tune into myself, and have to put my own health as priority.

And there is also the hope that now my own quality of life will now get better, as I get better.

 

((hugs))

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PANDAS16, so is that your endorsement? That I do have it?!! I was hoping you would chime in! You are probably right that I may have had some underlying immune issues. My mom, in her own words, had me on antibiotics every time I sneezed, and I know now looking back that I suffered from yeast due to the abx. It was all a big storm a-brewin that came to light while I was in college (prior to that I had no issues with depression or anxiety, just a little subclinical ADD). Interestingly, I battled with Reye Syndrome after chic pox+aspirin (giving away my age here) which resulted in confusion and hallucinations until the swelling went down. I have yet to research the possible connection btwn that hx and my sons' current issues. Probably doesn't matter, just a bunch of similar susceptibilities. Encephelitis...

 

S and S, I too thought that when the boys issues went away I would get better...no such luck. I think now in light of their improved health, it is only more apparent that I also have some issues to contend with. This is probably the first strep infection where I get the boys under control, then I get strep, then I go into pandas symptoms. I had no one else to blame it on. No one else around me was falling apart, just me. And the sudden onset nature of it took me by surprise! Wow.

 

Anyway, I am feeling fine now, physically and mentally.

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I wish I had better news for you, but my two neices (my brother's girls) had a clear-cut sudden-onset textbook case of pandas a few years ago. separation anxiety, sensory sensitivities, dramatic meltdowns, you name it. and these are generally easy peasy girls to deal with. It hasn't happened since, but now my nephew (who has since been born) has clear-cut OCD, separation anxiety, etc. My brother had kawasaki as a child (isn't there a relation to strep/pandas?). Now my suspicions of pandas for myself. It's apparently tied to the mother in my case. Oh, and there's more...my aunt (mom's sister) went completely mute as a child for 6 months; her daughter developed sudden anorexia (which mysteriously disappeared after a year); her other daughter gave birth to a child who appears to be autistic, but DEFINITELY has OCD/Tourettes. These are all on my/my mom's side of the family.

 

Just like in alzheimers, do these things mysteriously and coincidentally occur in clusters or is my family rampant with pandas?

 

Yes, I had my first dramatic hysterical meltdown while pregnant...started during the month of sept, which was the 3rd trimester. These meltdowns occured until I gave birth. Angelica chose Eli's remedy (and now mine) largely based on these meltdowns.

 

All I can say, pandas16, is that you are "one-up" on me cuz you still have time to cut this crap off at the source!

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Honestly, I think PANDAS is probably an epidemic, people are just sadly misdiagnosed. :(

 

i just have to shake my head in sad disagreement with you. funny -- we're the 'lucky' ones, huh?

 

I think we are the tip of the iceburg...

 

When is the AAP going to take this seriously and send out a mandate to the peds to assess for this beast? Like they did with autism in recent years? Shame on AAP, so damn worried about making big pharma happy and letting down the little ones. If people only knew who they were trusting with their children.

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  • 3 weeks later...

Well, Stephanie, I can relate... Last week, on Wednesday, I started feeling this awful headache, just the right side. I thought, "oh well, here we go, I'm getting a migraine. This lasted Thursday and Friday, and all day I was in a daze and then I could not sleep at night with thoughts revolving in my head, panicking about everything, etc. On Friday my 15-yo (whom we recently realized is a bit PANDAS too), tells me his weird thoughts are creeping back up. Saturday I take the baby in (she had been acting strange and not eating much, or just spitting up her food) and SHE HAS STREP!!!

At the same time with the headaches I had joint pains, and I started thinking back when I was in high school I started with those migraines (which my 15old had too as a child!), I had a whole year where I did not do PE because of knee pain, and I remember every now and then the skin between my fingers would just start peeling off (I learned in this forum that can be a symptom of strep). So, I am just waiting a bit to save up for my own consult with the homeopath!

The good thing is that my "PANDAS" (ds13) did not react much at all. Praise God, homeopathy is working for him!!! Not 100% recovered, but just the fact he did not have the "canary" effect is remarkable!!! Thank you Lord!!!

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Honestly, I think PANDAS is probably an epidemic, people are just sadly misdiagnosed. :(

 

i just have to shake my head in sad disagreement with you. funny -- we're the 'lucky' ones, huh?

I think she means we are the lucky ones to be in the right path, or at least to understand our kids are not just being crazy or difficult, THEY ARE SICK.

Just think of all the kids that may be being treated with psychotropic drugs that are not really curing anything and possibly just messing things up more :(

Let us pray for one another and for all those families out there who are dealing with the same scary monster we are dealing with, except they don't know what it is and probably fighting with the wrong weapons!

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I'm with you Stephanie, I've been wondering if I too have suffered from mild to moderate PANDAS throughout my life. When I really look at my history it makes sense. I had OCD/Bulimia as a child/teenager (and mild OCD as an adult) and I would go through periods of social awkwardness/withdrawal and depression with paranoia. Last fall when PANDAS hit our family hard and prior to our entire house hold being diagnosed with Strep, I felt very ill myself for several months. I constantly complained to my husband that my joints hurt, I felt anxious all the time, my personality seemed to be changing to the point where I was very angry at work and basically just avoided most of my co-workers (very out of character for me), I could no longer concentrate or think straight, I had constant muscle twitches throughout my body and my fingers constantly twitched (my hand writing was a mess), and I had a difficult time controlling my anger. This had persisted for several months. I also had a chronic sore throat, but I never tested positive for Strep at the time. My boys were also suffering in a similar way. I thought we were all going crazy. My oldest son had skin Strep in June prior to all of our issues falring. My oldest finally had a severe exacerbation last December to the point where he couldn't function due to OCD, tics, anxiety, and math and writing issues which lead to his PANDAS diagnosis. We had all tested positive for Strep throat just two weeks after he hit the wall. All of us felt better when we were treated with antibiotics for our Strep.

 

I've always said that I could sense when my kids were going to have a difficult time because I would feel a spike in my anxiety/mood. I just thought I was very in tune with them, even though I usually had no real indication that they were on the verge of having a hard time. Now I am really starting to think that I was very likely responding to the same environmental factors that they were and that's why I was so "in-tune" with them.

 

We have a consult with a Homeopath (Angelica) for my oldest PANDAS son this coming Saturday. He's been on antibiotics since January and is doing OK, but has slid back recently. I'm hoping Homeopathy will help his body heal. So far I feel antibiotics have just been a band-aid treatment, since his OCD comes back full force if he's off it for just a few days and it doesn't seem to prevent exacerbations with any kind of viral infection (he's likely PITANDS not just PANDAS - perhaps PANS would be the term now).

 

I think I would like to try homeopathy for myself and my other two sons once we can scrape the money together. My other two boys haven't been officially diagnosed with PANDAS but they have showed some signs of it (mild OCD behaviors, mild tics, emotional liability and rage).

 

I'll keep everyone updated.

 

-Vicky

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