Dr K- one year post-IVIG checkup

[pixiesmommy]

To further any confusion today- Pixie has been complaining on and off with mild (VERY mild, she says) knee pain for a week or so. Duhhhh. I thought strep, but we saw no change in her behavior this time, so we waited it out. She woke this morning VERY lethargic with extreme throat pain and leg pain, so we all went in for the family special. Dan came back positive IMMEDIATELY on the rapid, but none of the rest of us showed positive for the 15 minutes or so that they let them sit (they usually let them sit for hours, but we saw the PA today and she tossed them when she came into the room and saw the results.) So, the other 3 of us got a second swab (they won't do them together anymore- argghhhh!) to be sent off to the lab for the 72 hours.

 

I got an appointment for MYSELF w/a Lyme specialist for 2 weeks from now. I can't WAIT! They are an integrative medicine office, so that should be interesting. The forms they emailed me to fill out are freaking fantastic already- they ask ALLLLL sorts of things about my history. This should be one long appointment. They said to expect to be there at LEAST an hour for the first visit. Woo hoo! So hopeful!

 

Emailed Dr K about the titers this evening. HOPE to hear back tomorrow, so we don't have to wait the weekend.

 

Sigh.

[Fixit]

Keep us posted Pixies Mommy!

 

It'll be interesting to see what shows up on both the strep titers and Lyme tests.

 

Personally, if Lyme is all neg, I'd think about repeating IVIG, to see if you can get further improvement. It's interesting that Dr. K. feels only 1 IVIG (for most kids) is needed (he defines success as 75% improvement or greater within 3mo.) while other docs (Dr. Latimer, Dr. B.) recommend multiple IVIG's right off the bat. My feeling is that the "right" answer lies somewhere in between...1 may work for some kids, but others need 2 or more (and this should be decided on a case by case basis, with near 100% as the goal, not 75%....b/c 75% of really $hitty still isn't great.)

 

i agree..i like the way you think...

[pixiesdaddy]

Pixiesdaddy here - Pixiesmommy shared thoughts from this thread with me and asked me to post the response I just shared with her. So, some thoughts:

 

Repeating IVIG.

 

If Pixie were in crisis, I'd absolutely say yes. If she's not in crisis, I'd say no for these reasons:

 

1. IVIG cost us $10,000 dollars. About 60% of that was EVENTUALLY reimbursed, months later.

 

2. IVIG landed her in the emergency room with severe neck pain and vomiting and super high fever. We knew that was the risk, and it was worth it when she was in crisis with PANDAS, but I don't think I could try it again if we weren't at that point.

 

3. Most importantly, I feel like the symptoms that IVIG was meant to "cure" got cured - the bedwetting, the tics, the aggression, the separation anxiety, the OCD rituals. Those things at 95% better *knock on wood!*. What's left are symptoms that I don't think are explained by PANDAS - extreme fatigue, low grade fever, visual field disturbance. I'm all for investigating lyme because I think there's some other co-infection going on with Pixie besides just PANDAS.

 

She's had repeated strep exposures post-IVIG and she hasn't had gigantic behavioral or neurological flare ups. That's got to be a sign that IVIG strengthened her immune response, right?

 

Regarding keeping her on ABX...

 

I think that you could keep her on ABX forever and always find a reason for it. Her worst times are Sept. and March - you are always going to be going into a tough period immunity wise. But I also think there are long-term consequences to continuing to use ABX. I'd like to see her off of them, assuming that her symptoms stay in remission. I'm all for staying on them if I think they are still necessary to manage her symptoms.

 

Maybe it's just me craving a return to normalcy - but I also feel for my kid. She has worked SO hard behaviorally to get back to a kid who is staying in school, earning good grades, and socializing normally. I want to support her with good immune-lifestyle choices, but I also want to let her take a break from all the doctors, meds, and interventions as it's feasible to do so.

 

Hope that made sense!

Pixiesdaddy

[Johnsmom]

Pixiesdaddy-

 

thanks for your post. When you say strep exposure and no gigantic behavioral changes, to what extent did her behaviors change when she was exposed post IVIG? Just minor stuff? We are 13 weeks post IVIG and I am just wondering. We just had a 2 week streak of normalcy and now today was not so good.

Thanks

johnsmom

 

Pixiesdaddy here - Pixiesmommy shared thoughts from this thread with me and asked me to post the response I just shared with her. So, some thoughts:

 

Repeating IVIG.

 

If Pixie were in crisis, I'd absolutely say yes. If she's not in crisis, I'd say no for these reasons:

 

1. IVIG cost us $10,000 dollars. About 60% of that was EVENTUALLY reimbursed, months later.

 

2. IVIG landed her in the emergency room with severe neck pain and vomiting and super high fever. We knew that was the risk, and it was worth it when she was in crisis with PANDAS, but I don't think I could try it again if we weren't at that point.

 

3. Most importantly, I feel like the symptoms that IVIG was meant to "cure" got cured - the bedwetting, the tics, the aggression, the separation anxiety, the OCD rituals. Those things at 95% better *knock on wood!*. What's left are symptoms that I don't think are explained by PANDAS - extreme fatigue, low grade fever, visual field disturbance. I'm all for investigating lyme because I think there's some other co-infection going on with Pixie besides just PANDAS.

 

She's had repeated strep exposures post-IVIG and she hasn't had gigantic behavioral or neurological flare ups. That's got to be a sign that IVIG strengthened her immune response, right?

 

Regarding keeping her on ABX...

 

I think that you could keep her on ABX forever and always find a reason for it. Her worst times are Sept. and March - you are always going to be going into a tough period immunity wise. But I also think there are long-term consequences to continuing to use ABX. I'd like to see her off of them, assuming that her symptoms stay in remission. I'm all for staying on them if I think they are still necessary to manage her symptoms.

 

Maybe it's just me craving a return to normalcy - but I also feel for my kid. She has worked SO hard behaviorally to get back to a kid who is staying in school, earning good grades, and socializing normally. I want to support her with good immune-lifestyle choices, but I also want to let her take a break from all the doctors, meds, and interventions as it's feasible to do so.

 

Hope that made sense!

Pixiesdaddy

[pixiesmommy]

Dr K emailed but said only that MY titers are high and I should be treated. I'm the one in the household with the FEWEST symptoms. He didn't elaborate or answer our questions about what this means in terms of carrier/infection, etc. He did say we can call in the morning for numbers.

 

So:

Dan- positive immediately on rapid strep, but apparently normal titers (symptoms of virus- nasal drainage, etc.)

Me- negative rapid strep, elevated titers

Pixie- leg pain, sore throat, normal everything

Peri- (non PANDAS dd)- no strep-like symptoms, but some behavioral stuff (mild), some stomach upset that may or may not be related, not sleeping

[sf_mom]

We also got great homeopathic support and willingness to look at the entire family's health inclusive of unresolved ASO and anti-DNase-b from our LLMD. We've had a 1 1/2 hour long appointment for each child. I've learned an awful lot from those appointments and no symptom is too little. I also learned it is best to test the Mother first especially if 'congenital Lyme' is being considered. I look forward to your update.

[JAG10]

Dr K emailed but said only that MY titers are high and I should be treated. I'm the one in the household with the FEWEST symptoms. He didn't elaborate or answer our questions about what this means in terms of carrier/infection, etc. He did say we can call in the morning for numbers.

 

So:

Dan- positive immediately on rapid strep, but apparently normal titers (symptoms of virus- nasal drainage, etc.)

Me- negative rapid strep, elevated titers

Pixie- leg pain, sore throat, normal everything

Peri- (non PANDAS dd)- no strep-like symptoms, but some behavioral stuff (mild), some stomach upset that may or may not be related, not sleeping

 

Based on what Buster has written about carriers, it's Dan. The carrier swabs positive, but doesn't develop the infection, thus no elevated titers.

[pixiesmommy]

Re: the changes post IVIG. This is what she was like immediately pre-IVIG: She was to the point that we were talking about having her committed to an inpatient/institutional situation. She was mostly non-verbal, had a few hallucinations, was aggressive/violent almost every waking moment- biting, kicking, hitting, screaming. Tics were so bad she was literally writhing in the floor for the worst of them. Her chorea or "posturing" was to "sit" on her head- she would bury her head in the crease of the couch if you tried to speak with her. She would zone out with enlarged pupils for hours sometimes, but no signs of seizure on any tests. She was unable to leave the house, let alone attend school. We would carry her (at age 9) kicking and screaming through the grocery store to get food. It took 2 adults with her at all times, and sometimes more to restrain her. We ended up hiring caregivers that worked with severely disabled/autistic children and even they could not handle her. She was wetting herself several times a day and almost every night and refused to wipe. The OCD was so bad that she had to have the windows open in the dead of winter (-30*F with windchill!!) and certain doors open, certain doors closed, etc. She had routines for EVERYTHING- toothbrushing was horrendous because when we could get through her sensory issues to get her to do that or shower (or sometimes even convince her to sit on the toilet), we would have to count to a certain number or brush our own teeth alongside her, or sing, etc. etc. For showering, we would have to force her into the shower and wash her ourselves. She had a lot of food preferences/avoidances and we were starting to genuinely worry that she was headed toward anorexia/an eating disorder. Visual disturbances were frequent and unexplained too. She would "forget" how to do things and each day was a different thing- ie: putting on a shirt, holding a fork, etc. She had never learned to ride a bike, use a broom to sweep, or tie her shoes. She was unaware of the feelings of hunger or thirst and would refuse to drink, especially. She had sensory issues so badly that she did not process pain almost ever- even extreme pain, but would respond instead to the blood, etc.

 

Immediately after IVIG we saw her tics vanish almost overnight, but other symptoms ramp up until about 5 weeks post-IVIG when the violence/aggression left almost overnight and everything else slowly began to decrease. We are now 1 year post-IVIG and she has the symptoms remaining that I listed in an above response.

 

 

Okay, that makes sense now that I can wrap my head around it- Dan is carrying the strep but not making an immune response to it.

Now. How about me? I am not showing positive on the rapid test, but making a response. If we are to assume that my 72 hr culture also comes back negative, does that indicate that I have an autoimmune response, since most PANDAS kids can come back negative but have high ASO? Hmmmm. I will definitely ask the Lyme dr about all of it. They sent me an amazing comprehensive form to fill out prior to the appointment too.

 

BTW- Thank you all for welcoming me/us back- I know we don't contribute much here when we aren't in crisis. We definitely own ACN and the community since it is where we first heard about PANDAS.

 

Also, I have a one-year update posted to our blog (linked in my signature) on Pixie and IVIG if you would like to read more about the differences in where we are vs. where we were.

[EAMom]

Dr K emailed but said only that MY titers are high and I should be treated. I'm the one in the household with the FEWEST symptoms. He didn't elaborate or answer our questions about what this means in terms of carrier/infection, etc. He did say we can call in the morning for numbers.

 

So:

Dan- positive immediately on rapid strep, but apparently normal titers (symptoms of virus- nasal drainage, etc.)

Me- negative rapid strep, elevated titers

Pixie- leg pain, sore throat, normal everything

Peri- (non PANDAS dd)- no strep-like symptoms, but some behavioral stuff (mild), some stomach upset that may or may not be related, not sleeping

 

I agree with JAG10. I wonder if Dan is the carrier (with no strep symptoms, the nasal drainage may be an allergy or mild virus ie a red-herring) yet culturing positive.

 

I don't know if you would really expect a "carrier" to have high titers (or not)....but I would expect them to culture positive (although I suppose it is possible to "carry" strep in a difficult to culture place, like the sinuses) without typical symptoms of strep (FEVER, sore red throat, vomiting).

[EAMom]

n

 

since most PANDAS kids can come back negative but have high ASO?

 

Have you seen Buster's survey (about 100 children)? http://www.latitudes.org/forums/index.php?showtopic=9495&start=0&p=79704&hl=survey&fromsearch=1entry79704:

 

MOST PANDAS kids (esp. girls!!) do NOT have high ASO.

 

Only 15% of girls had elevated ASO or Anti-DNAseB over the course of the illness

Whereas 54% of boys had elevated ASO or Anti-DNAseB

 

In addition, 23% of girls did not have a rise in ASO or Anti-DNAseB despite a positive throat culture

whereas 14% of boys had this situation.

 

What I'm raising is that boys were ~4x more likely to have a rise in ASO or Anti-DNAseB

Whereas girls were ~2x more likely to be labeled as "carriers"

 

 

 

[EAMom]

 

 

 

 

Okay, that makes sense now that I can wrap my head around it- Dan is carrying the strep but not making an immune response to it.

Now. How about me? I am not showing positive on the rapid test, but making a response. If we are to assume that my 72 hr culture also comes back negative, does that indicate that I have an autoimmune response, since most PANDAS kids can come back negative but have high ASO? Hmmmm. I will definitely ask the Lyme dr about all of it. They sent me an amazing comprehensive form to fill out prior to the appointment too.

 

 

 

I think Buster (maybe he will chime in) would say that it is more important to see if your titers ARE RISING (or falling). You could just have a high "baseline" or they might still be elevated (dropping very slowly) from a past strep infection.

 

???

 

I would certainly be more concerned about a positive culture (or rapid), than titers...it's so hard to know what your titers are elevated from. Perhaps you had an asymptomatic strep infection (perhaps exposed from carrier Dan) which you cleared in 1-2 weeks on your own (without antibiotics) and your titers are still elevated from that.

[pixiesmommy]

Thanks for that info. I had seen those stats, but had forgotten. Pixie never had elevated ASO titers either. I guess we are still just waiting and watching. Dan is on Augmentin for 14 days, but we have done that time and again. I'm anxious to get to the Lyme appointment and hope that will be a huge step in the right direction for the entire family. She did have a few behavioral things today, but nothing major and I'm hoping it's just exhaustion and not really a "reaction."

 

In other news, if anyone is interested in seeing, I finally (a year later!) uploaded the pics I took from our IVIG and put them into a slide-show. I had blogged a few days ago about our one year IVIG anniversary, but had forgotten about the photos and just added them tonight.

 

They are very blurry, but you can get the general feel/gist of it. It was a really happy and peaceful two days for us. Pixie was able to understand that this was meant to help her and she had been begging us for help, so we were all hopeful and relieved that we were finally getting treated.

 

You can see/read it here:

http://chickiepea.wordpress.com/2010/09/11/one-year-ago-today/

[thereishope]

What antibiotics has Dan tried so far? You mentioned before that Dan developed symptoms after he entered your and Pixie's life and that leads to wonder if you have Lyme and if Lyme is actually contagious and you may have given it to Dan. What symptoms does Dan have that leads you to think that?

 

And are you saying that Dan continuously tests positive on the rapid tests?

Edited September 18, 2010 by Vickie

[JAG10]

Pixiesmommy,

 

You really do have to see/live this to believe it, don't you? I read your blog and viewed the pictures; a lot of her story...the psych drugs, the difficulty getting doctors to look at her in totality and not compartmentalize her, and certainly the pictures of the dream team from OakBrook, IL..... it's our similar-freaky-you just can't believe it story too, only 4 months out instead of a year.

 

I met with mydd10's teachers last week and went through the whole (abridged) journey with them and it is a bizarre experience explaining it all and having folks look at you in amazement, and most of them had already heard some of it before. Her school has been very supportive and most of her lingering symptoms revolve around cognitive/learning/work completion issues. Her handwriting has resolved, but her anxiety around the modality of writing remains. She says to me "Those blank, empty lines haunt me, mom."

 

I can relate to your above comments about wanting to get "all the way there." Even though the percentages we all throw around arbitrary, we know if our kids just aren't symptom free yet. At 16-17 weeks, I informally judge my girl to be 75-80%. At this point in our journey, time and patience are called for. The slow fade of symptoms is difficult to appreciate when you get to this point....like watching hair grow....the growth can no longer be appreciated on a daily or weekly basis. We have to ask ourselves "what can she do now she could not do 2 months ago?" Before we'll know it, the short hair will be long enough to put in a ponytail...with less and less bobby-pins needed to hold it in place. And then, at the 9-12 month mark (barring any major setbacks) we'll have to look at what symptoms remain and what are we willing to do about it.

[dcmom]

Jag

I so agree with you about time for healing. There is another thread about stuttering- when I saw it I said to dh- remember J used to stutter? She doesn't do that anymore!

 

That was one of her minor, lingering symptoms- we didn't do anything about it, and we didn't even notice it BUT IT IS GONE