Tired of defending PaNDAS

[T_Anna]

My friend's son was the first person I knew who had PANDAS. Until then I had never heard of it. Her son came back from sleepaway camp with OCD after having been ill with Strep at camp. He was afraid of the weather, washing his hands all the time, confessing to horrible things, separation anxiety etc. That was two years ago when he was 12. She hated that people didn't believe this was a real disease.

 

They had gone to a PANDAS specialist, titers wre high , given Advil and Augmentin and CBT and he was better. He still didn't like going away on sleepovers. This year he begged to go to sleepaway again. Less than a week into camp he came home. My friend said he had anxiety and couldn't get over it. I suggested that maybe he was re-exposed to strep and she should try abx or Advil. She said no, she'd take him back for therapy. Yesterday she told me that she doesn't think he ever had PANDAS and that it was all bunk and the doctor a quack.

 

Soemtimes I feel like I'm the freak telling people the world is round and everyone insisting it's flat.

 

Why bother?!

 

Sorry for the vent, just had it with a lot if uneducated people. I feel bad for this kid.

 

T.Anna

DS15

[beeskneesmommy]

So sorry. I am having one of those crumby days myself. More just plain sick and tired of dealing w/PANDAS at all. I am always the bad guy, always the disciplinarian, always the medecine-giver, the one who keeps track of docs, insuarnce, finances and does the OOT traveling with our son. I need a break longer than an hour to clean and do laundry. I wish my family members would step up and offer me a day off...or that my husband would show a little more appreciatiation for the incredibly hard work that I do 24/7 for our son. Sorry. Cranky. Hope your friend sees reality and so sorry that she disappointed you!

[tpotter]

So sorry. I am having one of those crumby days myself. More just plain sick and tired of dealing w/PANDAS at all. I am always the bad guy, always the disciplinarian, always the medecine-giver, the one who keeps track of docs, insuarnce, finances and does the OOT traveling with our son. I need a break longer than an hour to clean and do laundry. I wish my family members would step up and offer me a day off...or that my husband would show a little more appreciatiation for the incredibly hard work that I do 24/7 for our son. Sorry. Cranky. Hope your friend sees reality and so sorry that she disappointed you!

OMG Beeskneesmommy...this is EXACTLY what I went through today. I even got really upset and was yelling at my husband about it all. But, I think mine may be PTSD.

 

And, T.Anna...I totally agree with what you're saying. But, I wonder if she's just so tired of dealing with it, that she's shut down? It's too bad for the child, because the quicker she gets on it the better her child will probably get.

[beeskneesmommy]

Happy Sunday! Hah, a little sarcasm....really, I am supposed to meet a new trainer to work out tomorrow morning and attempt to shed my "PANDAS Pounds". All I really want to do tonight is eat a darn pint of Ben and Jerry's and go to bed! Thank God for Whole Foods herbal sleep remedies..from which I have concocted a cocktail over years of sleep deprivation! Took my husband and son out for ice cream at a special family run place in the country today. DS is not in terrible shape, but seems to be having an increase of symptoms again today. Poor kid took each lick of his cone and looked horrified over the ice cream getting on his lip...then ran for a sink to rinse his hands and a napkin to wipe his mouth....several times over, after each lick. He gave up after about 6 licks and handed the cone to his father. He simply was more compelled to be clean and without stickiness than he was to eat the ice cream that he had been excited about.

 

He went to tennis camp last week at a new school that he will be starting in a few days. I sent him to get used to it and feel comfy for the start of 1st grade. I had nixed swimming in the afternoons because, well, you know...pools. He cried and cried, saying he was "left out" and wanted so badly to swim with his new friends. He was doing so weel that I let him swim ONE time, totally against my better judgement. I just felt so badly for him. Yup. Here we go. Luckily, school doesn't start until Thurs. so I have some time to try to pull him out of it.

 

I am such a mean old "Mommy Dearest" these days! Well maybe not that bad, but simply out of juice with no where to recharge my batteries. Wow. Enough of my venting! Sorry again!

 

Warm thoughts to you all!

Edited August 18, 2013 by Beeskneesmommy

[qannie47]

wow...must be a transcendent, empathetic, vibration making its way thru the universe...This Thursday and Friday I experienced a weird low with the whole Dam Pandas thing. Despite how well my ds is doing (yes God, I am grateful), but human. I just ended up in this I AM JUST SICK AND TIRED OF WORRYING, RESEARCHING, HOPEFUL THINKING, WORRYING SOME MORE.....and yes aggravated with my also ungrateful, spouse whom is very lucky to be married to a GET THE JOB DONE, ILL FIGURE IT OUT, WHY DONT YOU JUST GO TAKE A GOLF DAY, CONTROL FREAK such as me....So I cried a good part of the day yesterday and was worried that a depression was coming over me....UGH....but thankfully, I woke up feeling a little more like myself today. Packed up the kids and spouse and spent the day at the beach, ate too much antipasto salad, pizza and icecream. Definitely feel better. BTW...My Ds is still on a roll with doing well after IVIG. IT BETTER NOT COME BACK....okay...I am not completely back to my pleasant old self yet. But I always look forward to checking in with my ACN cyber friends....you all help to make coping with Pandas a little more tolerable.....Thanks

[SurfMom]

Amazing. I popped in tonight feeling down because tomorrow, my son starts his sophomore year and his conscientious, overachieving sister with PANDAS is starting a second year at home, barely able to get through the one homebound course we are having her start. She is confused and angry as to why she too is not going and it is hard to get her to understand. For the first time ever, we start the year with no fanfare and no photos. DS will get on the bus and DD and I will spend the morning packing for a Tuesday trip to Duke for IVIG and followups. Even worse I am mostly alone in still mourning over the loss of our beloved dogs last week. Tough. Even so, I am keeping my head above water with my daily runs, a bit of surfing and my gray-hair-denial salon visit every six weeks. Blondes have more fun, right? LOL. My mantra is no matter bad how I feel, it is worse for her. That thought alone forces me to straighten up and live the moment for both of us. Blessings and cheers to you all.

[beeskneesmommy]

Hope everyone is having a better day today. Surfmom good for you to get to the salon! I make sure that I am a "natural blonde" every few months or so. I am always surprised at how I feel during the time that I sit and quietly read a magazine with foil on my head. It's like a feeling of wonder: "Oh yeah, wow, I had forgotten what it feel like to do nothing and to be relaxed...just for me". So, I propose that every one of us pick some time over the next week to do something just for ourselves. Thx for putting up with my venting. I send warm, healing thougts to you all!

Edited August 19, 2013 by Beeskneesmommy

[rowingmom]

It's hard not being able to talk to anyone (doctors, family, friends) about the causes/treatments for our children's reactions. Even DH shuts down if I say more than one sentence, but at least now he is a believer and doesn't think I'm totally nuts. He would rather watch/play golf, football, hockey etc., and he can, so he does. I can't be too upset though because he's the one who has the well paying job .

 

A couple of weeks ago I was talking to my cousin (an MD) and his wife. She mentioned that DD appeared to be doing so well this year (as opposed to the continuous ticcing and emotional lability of last summer). I said, Oh yes, she has just finished two years of bartonella treatment and is using an herbal protocol now - they both turned away and started talking to others. People, especially those in the medical field, don't want to hear it, they are in denial that these types of infections are even possible. You'd think there would be a slight bit of interest. This seriously makes me second-guess myself. What if I am nuts?

 

It is so hard to be completely responsible for curing our own kids. Every sniffle, tic, bit of moodiness sends me for a loop. Even after a good 4 months, I'm still waiting for the other shoe to drop.

[Dedee]

RowingMom,

 

I know how you feel. I have a nephew in medical school and his wife who has her PhD in Neurological Research. Whenever I say anything about my kids having Lyme, he tells me that it's impossible because we live in the south and the kids have never been in the Northeast. Drives me crazy....

 

Dedee

[SSS]

For some 'woo woo' about why the universe feels off right now, we are building a full moon, will be here in Wednesday.

 

For the insurance medical professionals, I think they 'have' to believe it- it's their job. It's their set formula, it's what they do-

it's how they live with themselves-

Our Pediatrian, with whom we have a long history with (except for a 2 yr. break w/ Kaiser, and he wasn't dd's infant Dr.

when she had unexplained fevers and jump off head growth chart)

 

Anyway, he is VERY intelligent - member of the Mind Institute, leads a very large pediatric practice, does all the spectrum diagnosing.

He listens well, and respects me, and I am totally honest with him. I mean, I lay it all out.

But he is not allowed to talk special diets, supplements, Lyme (he just says: 'It's controversial.'

I ask: WWYD if it were your daughter? long pause....'I'm not sure') his insurance companies, who pay him,

don't want lawsuits- if he recommends, say, a probiotic, if there is an adverse reaction... see?

What he has said in not so many words: this is his job, it pays well, he has a family, does he love it? No.

Does he genuinely care about children? Yes.

I would love to get him off site and off the clock, a pot of expresso, and go around verbally sparing, debating, and picking his mind.

Insurance dictates I get about 15 minutes, and he can't share his real thoughts and beliefs, theories.

 

Last Spring we saw the top pediatric neurologist in the top metropolis hospital -

Again, I very much liked this MD- extremely intelligent- almost cathartic to pour out my experiences over 3 appointments about raising my daughter.

But when I said:

You cannot tell me there is not a REAL, SIGNIFICANT medical component to this: How can you explain how special diets,

first trials of Azithromycin, and our 2nd HD IVIG, completely returned my child to content, happy, social, etc.? The results didn't last, but what does this say?

His answer:

Growth spurts.

 

So, we just go on and do the best we can- and you never know what you've shared, your pain and story, what impact or help it can be down the line to another without you ever knowing it.

 

There is a little girl in my youngest child's 1st grade class, who missed a day last week, 'unknown fever' her Mom says, and the little girl has face ticcing. I have no idea what to do with that--- should I say something? Will I be crazy lady, freaking this Mom out?

 

When my youngest was in K last year, I had to stop volunteering in the classroom for a few months, so disturbed was I by the number of children with issues- some literally unable to control themselves, 1 child couldn't speak, some unble to comprehend hardly anything.

 

So this is the 'new normal' ?

I don't know. I don't think we are the crazy ones. I think we are the awake ones.

[LNN]

I've been in everyone's shoes for many years. After so many times of getting 'that" look from anyone I spoke to about anything "controversial" I learned to just shut up about most of it. The only relative who doesn't judge me is the sister who's bipolar and is quite used to being the crazy one. For a long time, she was the only one who saw my kids often enough to be able to see glimpses of my kids on their good days. The rest of the family saw us once a year and inevtiably it was when things were not good.

 

My kids have been off abx for 4 months. My son is better than he's ever been. Some mild to moderate OCD is the result of yeast (5 yrs on abx) and treating that is getting rid of it, slowly. All other issues are, for now, resolved. So a few weeks ago, we spent two days with family at the tail end of our vacation. I constantly heard "Holy cow, he's so grown up! He's such a changed kid! He's so polite/friendly/calm/mature/content.... " I stopped myself from "schooling" anyone on any aspect of our journey. There was no point, even tho there are other kids in the family who have adhd, convergence insufficiency, behavioral and learning challenges...You need to be ready to hear these things and until you are, it falls on deaf ears. My crowning achievement was when my dad, who's 90 and has seen DS in bad times, told my sister (the crazy one I love) that he really enjoyed DS during this visit. At that moment, I had my validation. It was all I needed - and made the rest of the crap all worth putting up with.

 

We will always be judged. But know that you will reach a day when people see your children and realize you weren't so crazy after all.

[pr40]

what's confusing to me is when a pediatrician treats her own child who has, to me obvious Pandas symptoms, the way that Kayser dr from S&S post does. She does not even want to think of alternative approaches. Why?

I am not really sure. And it is not only insurance. It is fear. a deep fear that challenges the way this DR is as a person.

On the other hand, I do want to say that we need to be open that PANDAS treatments we are pursuing as an auto-immune disease can be complemented with some psychiatric drugs.

I know that my wife is benefiting from a low dose SSRI as are some other kids here. Remember that SSRIs do have some kind of anti-inflammatory effect.

What we need are DRs who are willing to try and see what works and parents willing to try and see what works.

[beeskneesmommy]

Yes, hah! One of our well-known PANDAS specialists made the following comment to me: Interesting how physicians who are mothers suddnely belive in PANDAS when their own child "gets" it (meaning onset). Yes, it is! I have had a few docs over the last year ask me for information. Quite refreshing..one of them is a pediatrician whose son has much the same symptomology that my son exhibited early on. She still doesn't get the importance of treating immediately, however - seems to buy into the "growing out of it" theory of old.

[SSS]

pr40, I'm sorry, I guess my post wasn't clear-

None of our insurance paid pediatric Dr.s we've seen have had a child with PANS- or autism, it seems.

I believe (know) since these Dr.s are paid by the insurance companies,

they don't want to go near PANS or Lyme with a 10 foot pole.

Our current Pediatric Dr. (not Kaiser, we got off that nightmare)

does diagnose all the potential autism spectrum / ADD children for a large practice -and has an interesting base of experience because of this- and he is up to date/ very well read on current studies, etc.

But treatments offered are only 2:

The pharma drug route, or,

the referral for speech therapy, behavior therapy -

the parents get to choose.

Antibiotics will only be prescribed for a typical, hands on bacterial infection.

He will generally not comment or share with me his thoughts on biomedical (special diets, supplements) but I think he finds me interesting, lol.

Why do I still see him for my dd? Maybe I'm lonely, lol.

I don't know. He and I go back and forth. And I have tried some medications for my dd, when things became dark here at my home-

He was there for me for that- he got it, he believed me.

Recently we have Impetigo and he is prescribing appropriate antibiotics for that-

and, I have 2 other healthy, neuro typical children he cares for when necessary.

[beeskneesmommy]

Silly me! DS looked better this morning and then went down hill this afternoon and evening. He was a mess at bed time. I could kick myself 50 times for letting him swim last Wed. at camp. On a good note (skewed thinking from PANDAS Mom) he appeared to have a low grade fever tonight. I thought that yesterday he felt a little warm as well. At least there is a "concrete" reason for it instead of the usual reaction to exposure only. Not sure why this feels a little better to me...off to his 1st day of 1st grade in a new school on Thurs. He has a drop in "meet the teacher" on Wed., but I am less concerned about that. I have 2 days to get him leveled out...YES! I AM tired of PANDAS!

Edited August 20, 2013 by Beeskneesmommy