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eljomom

"new baseline"---

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I have heard the term "new baseline" on here quite frequently. I believe that our dd has "chronic pans"---in other words, a "new baseline." Thinking those terms might be interchangeable. So if a child has a new baseline, and then gets worse with exposure, infections, injuries, etc.....then goes back to "new baseline" or "chronic" state, but less severe, is this "new baseline" the best we can hope for? I don't mean to sound defeatist, and I know there are some, myself included, who will not settle for less than "perfect"---but in all seriousness, we are doing nothing right now, other than once daily keflex, with ME running the ship since pandas doc will not do anything else unless we pull tonsils. She is NOT 100%, but is at her baseline of new normal (daily tics, compulsions) but not NONSTOP. Wondering if anything was spoken about this at the TExas Symposium too?

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because my dd has only had strep diagnosed one time (that we know of), is CLEARLY PITAND (did react poorly to strep, but also to staph, viral fever, major flesh wound, etc........and ENT scoped her (literally numbed her, ran a scope down her nostril and throat to look at tonsils) and said they are "small.....1 on a scale of 1 to 4", and because I have heard more people say their kids got WORSE or no change after tonsillectomy than better, or got PANDAS AFTER tonsillectomy. And also, because we personally feel like the doctor who recommended it is stabbing in the dark....same doc who told us not to look at tics when monitoring symptom changes......same doc who had us on too low a dose of zithromax for 8 months, appointment after appointment.....so our confidence in this doctors recommendation for tonsillectomy is a bit shaky at this point.

Edited by eljomom

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eljomom, hi

 

I recall you are nervous about steroids, but I wanted to share...

 

My girl was sick for most of her life with that drifting baseline you reference, until March 2007 (something really, really nasty must have been going around this area then, bcs it's the same city, month and year as PhillyPA) when the WHAM, no turning back chronic episode occurred.

 

My dd was very very very sick by the time (late 09) we stumbled on pandas at CHOP. You talk about only one documented episode of strep; we have none in either girls' records yet their ASOs and anti-DNAse B's were off the charts, like top 1% measured....so they must have had strep but are asymptomatic. We have taken the multiple IVIG route and my dd is 90% symptomless most of the time. But immediately follwing IVIG AND STEROIDS, she is 100%-you know it when you see it! My girl has never taken more than the 6 days Dr. B prescribes with IVIG, but the past two IVIGs, immediately following the steroids, she is completely normal which is nothing short of a miracle for a kid who was so sick for so long.

 

I must admit, when I read Tpotter's post about the TX conference, I felt a wave of sadness when I read what she wrote about immediate treatment being key, critical, fatal. I know this is hard for her to write too as her boys have been sick many years as well. I'm afraid those of us with older, "chronic" kids are our own conundrum, separate from those the pioneers are trying to reach now and save via early intervention. But have hope and faith, never give up, embrace your tenacity within. Our kids can get there too. I know some great moms like Philly, dcmom, Kayanne and others have been tauting the glories of steroids and based on observations of my dd's last two procedures, I am starting to pursue this for my dd more vigorously as well. In the typical hierachy of pandas treatment, steroids are given a good run prior to IVIG. My girl may have been too sick for that. The IVIG mops up the mess and my girl had years of mess to mop up. But now that she's so close to being symptomless and I see the steroids get her all the way there, her doctor and I will have to explore this more thoroughly. I'm not sure if orally or via IV with IVIG, but those are my pressing questions prior to her IVIG next week.

 

I know you are not sure which way to turn with steroids and I totally respect that. I remember the discussion about your dd being happy and what did that mean. When my dd was at her worst, she wasn't unhappy because she was so out of it, giddy, goofy, immature, silly like my child was non-stop drunk, but she was a happy drunk. She became further and further separated from her peers socially and academically, as they grew up and she regressed. I remember how I felt about her in K and the first half of first grade; we were managing, we were holding on, she was bright and learning despite her symptoms, that baseline drifted until that 3/07 WHAM! I don't know exactly what that bug or bug combo was back then, but I hope nothing comes along like that that makes your decision so much easier to pursue everything and anything that might work. Every single one of us has our tonsils out in my family and my dh's. As far as my girls go, I don't think it made it go away, but it didn't make them worse either. What I don't know, and how could anybody, is if they would have been worse had the T & As not been removed.

 

I personally don't think ANY of our kids are hopeless or limited in the healing they can achieve. I think there are several different ways to get there, or get back there if slippage happens. "Mental illness" is out and "Brain Biology" is in. New treatment avenues are being explored at an excelerated rate.

 

I do think you need a new doctor. Not because I know anything about her outside of what I've read here, but because your doubts are so strong, the relationship is no longer productive. It's just time to cut bait and move on. There isn't one doctor discussed here who has 100% kudos from every posting patient family. Well....maybe Dr. Cunningham :wub: , I should have said treating doc.

 

I hope you find some peace and direction you can believe in soon. Time goes by too slowly when they are sufferring and too quickly as their childhood marches on. In the past month, my dd has met her womanly friend, started shaving her legs and tomorrow is being Confirmed (so this trip down memory lane is as therapeutic for me as it is intended for your benefit!)

 

Jill

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Thanks Jill...I do appreciate your thoughtful response. Can you remind me what your daughter's symptoms were? I am sorry I can't even remember. I guess I am a bit sad about what I already know, which is that we are years into this at this point, so I think dr. L's philosophy might be that since we've missed the "early intervention" then let's just see what happens? I really don't know anymore. All I know is my husband and I are on totally different pages....he had the audacity the other day to say to me that she has had days of no tics, after I said that she basically has tourette's now. That is NUTS. Not one day or one hour. He then said he would make @*#& sure she didn't have IVIG or something "crazy" if it is just tourette's, etc.....and that I am over-reacting. "She's happy....." Dr. L "she's happy." Ugh. REally? Happy with numerous tics and compulsions. Anyhow, I know I need another brain on the team here, but who? I don't know how feasible it is to have an out-of-state doctor, when you are dealing with the finances we are. It's a shame, too, to have to go out of state when we have one of "the best" an hour away. I just don't know anymore.......

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Thanks Jill...I do appreciate your thoughtful response. Can you remind me what your daughter's symptoms were? I am sorry I can't even remember. I guess I am a bit sad about what I already know, which is that we are years into this at this point, so I think dr. L's philosophy might be that since we've missed the "early intervention" then let's just see what happens? I really don't know anymore. All I know is my husband and I are on totally different pages....he had the audacity the other day to say to me that she has had days of no tics, after I said that she basically has tourette's now. That is NUTS. Not one day or one hour. He then said he would make @*#& sure she didn't have IVIG or something "crazy" if it is just tourette's, etc.....and that I am over-reacting. "She's happy....." Dr. L "she's happy." Ugh. REally? Happy with numerous tics and compulsions. Anyhow, I know I need another brain on the team here, but who? I don't know how feasible it is to have an out-of-state doctor, when you are dealing with the finances we are. It's a shame, too, to have to go out of state when we have one of "the best" an hour away. I just don't know anymore.......

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We have this weed that loves our shrubs, a thistle weed I think. Prickly little sucker. Everytime my dh pulls them, he gets a bad allergic reaction; all hives and swollen. He has to take a prednisone course that tapers. My less than 10 lb cat broke his toe when his nail got caught in the carpet and he went to dart.... He had to take 150 mg of prednisone over 3 weeks.

 

Now, I'm not suggesting breaking your dd's toes, but maybe have her walk in poison ivy and the ped will prescribe prednisone for something "mainstream" enough for your dh. Then you could see what happens. Kinda like getting "long term" abx for acne rather than pandas?

 

More than one way to skin that cat!

 

Hang in there!

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Haha!! Jag10....I actually have had the thoughts that it would be "nice" (well, in a rather odd sort of way) if she just got a raging case of poison ivy like her older sister did when she broke her arm, and was covered in it on the arm that was to be casted. Curious, do they give the same dose for poison ivy as they do for pandas?

 

T.Mom----I see you posted but nothing showed up...

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I'm not sure what a ped would prescribe for poison ivy, but you are looking to be convinced and to convince your hubby. Dr. K does a 5 day steroid burst that is low dose; he looks for any change in symptoms, possibly worse first/ hyper, then some improvement. The amount of improvement doesn't matter. You're looking for confirmation of autoimmunity.

 

I know it's hard to get over the expert in your own back yard not being your knight in shining armor. I'm in Philadelphia. It was hard for me to read Beesknees praises of Elia and CHOP when she helped us with diagnosis, but unhelpful for treatment bcs my dd had already been sick "too long."

But I was way more desperate than you are now. Once I got the vibe Elia was dragging her feet on treatment, I already had appts lined up with doc #2, then doc #3, and now I'm on doc # 4. Call it the pandas walk of shame if you want :ph34r: I was a momma on a mission.

 

PS- Bees, I'm over it, btw. Just trying to illustrate a point. I'm very happy for your child's health!

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Haha!! Jag10....I actually have had the thoughts that it would be "nice" (well, in a rather odd sort of way) if she just got a raging case of poison ivy like her older sister did when she broke her arm, and was covered in it on the arm that was to be casted. Curious, do they give the same dose for poison ivy as they do for pandas?

 

T.Mom----I see you posted but nothing showed up...

You want raging poison ivy? Do what my girls did... they did not know what it was, they just thought it was neat that the sap was black, and were drawing in the sidewalk with "black ink"... well, one of them ended up needing IV steroids because her whole face was blowing up like a balloon and her eyes were closing... And this was after starting the regular course of oral steroids. So come on over, we have plenty of poison ivy around!!!

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We have this weed that loves our shrubs, a thistle weed I think. Prickly little sucker. Everytime my dh pulls them, he gets a bad allergic reaction; all hives and swollen. He has to take a prednisone course that tapers. My less than 10 lb cat broke his toe when his nail got caught in the carpet and he went to dart.... He had to take 150 mg of prednisone over 3 weeks.

 

Now, I'm not suggesting breaking your dd's toes, but maybe have her walk in poison ivy and the ped will prescribe prednisone for something "mainstream" enough for your dh. Then you could see what happens. Kinda like getting "long term" abx for acne rather than pandas?

 

More than one way to skin that cat!

 

Hang in there!

 

This entire post had me cracking up and laughing out loud. Thanks! Here's to praying your child has an allergic reation, broke toe, posion ivy or acne...take your pick! :D

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Haha!! Jag10....I actually have had the thoughts that it would be "nice" (well, in a rather odd sort of way) if she just got a raging case of poison ivy like her older sister did when she broke her arm, and was covered in it on the arm that was to be casted. Curious, do they give the same dose for poison ivy as they do for pandas?

 

T.Mom----I see you posted but nothing showed up...

 

 

I pm'd you instead :)

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Ha! Just to be clear, I don't wish poison ivy, broken toes or anything on my or ANY other kid, including pandas kids :wacko: Glad everyone can keep a sense of humor about it.

 

On a similar note, we saw the local immuno. for results of the very in-depth bloodwork (will post when i get a chance) and how he looked at B cells, NK cells, etc....and it was all "normal." I started crying, and he looked at me like I was nuts. Probably thinking Manchausen or something. My husband was angry with me to. COME ON!!! of course I'm happy that there is nothing "wrong" with her immune system (per se), but sometimes you just want SOMETHING to show up that you can FIX!!!

 

Anyhow, my very pregnant dog has to be walked on a leash, as she's due in 2 days....so this morning she ducked into the woods into what appeared to possibly be some poison ivy, of all things.....and normally I would have yanked her out so she didn't bring home the oil to spread to the kids when they pet her.....but today.....I just sort of watched her......stand in the poison ivy... :ph34r:

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On a similar note, we saw the local immuno. for results of the very in-depth bloodwork (will post when i get a chance) and how he looked at B cells, NK cells, etc....and it was all "normal." I started crying, and he looked at me like I was nuts. Probably thinking Manchausen or something. My husband was angry with me to. COME ON!!! of course I'm happy that there is nothing "wrong" with her immune system (per se), but sometimes you just want SOMETHING to show up that you can FIX!!!

 

I went thorough this exact range of emotions when we met with our immunologist as well. My son has had 8 documented strep infections over the course of 18 months, yet not only has he never had an elvated titre, all of his immune work ups have come back normal. ("maddeningly normal" is what I like to call it.) Murphy's office finally referred us to immunology b/c they couldn't understand why his workups show that he shouldn't be getting strep...but BLAMMO it keeps showing up.

 

The immunologist she referred us to was wonderful, very PANDAS knowledgeable, and even said that she would rx IVIG for us, even with normal immune work ups, if and when Murphy says that's the way to go. (Apparently she's done it for some of Muprhy's other patients.)

 

She explained the normal bloodwork to me this way - our son is producing all of the appropriate antibodies, response well to immunizations, etc... The absence of elevated titres is more of an indicator that his immune system is getting the job done, and not "over reacting" to the infection (I know its also a sign of prolonged infection, but she was speaking to my sons results specifically). They way she described PANDAS is this: In PANDAS kids, the immune system produces the antibodies against strep, those antibodies mistake the brain for strep (we all know this), in some kids, the immune system creates more antibodies than it needs (elevated titres) or there are other immune difficienies contributing to the PANDAS. In a "just PANDAS" case like ours, the problem lies in the actual antibodies themselves being produced by they body - they're defective in some way. But since the immune system is making them appropriately in response to the infection, everything appears normal. She said that since there's no tests to check for "broken" antibodies, that's what makes "just PANDAS" difficult to pinpoint and treat.

 

I thought her explination made sense, but there was a small part of me hoping for something to be amiss so we had another piece of the puzzle. She was great, but she sort of got to me when she said after reviewing the bloodwork and giving a brief exam to my son, "Everything from an immunology standpoint looks great, wonderful. Fortunately, you're dealing with just PANDAS". Really?? JUST PANDAS???? Like that's not enough - as my son was tearing apart her office cause he was in an episode!!

 

Hope this helps you feel better about wanting something to be wrong!

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I don't think "new baseline" and "chronic PANDAS" are the same thing. My son had what I would call "chronic PANDAS" for 2 years straight while he had a hidden infection. During that time he had lots of OCD, executive function problems, brain fog,changes in muscle tone and coordination, joint pain, and urinary frequency, with occasional tics. We found the infection- had surgery to clear it- and slowly (over the course of about 3 months) he showed improvement until we got to what I would call a "new baseline". The "new baseline" consisted of some executive function problems with organization, keeping track of assignments, and deteriorated handwriting. There was no more OCD, no urinary frequency, no joint pain, no brain fog, and no tics. Just frustrating organization and handwriting problems that we addressed with accommodations and therapy to work on it.

 

IMHO, "chronic Pandas" can also refer to the ongoing autoimmune response that can occur even after the infection is gone. In my son's case, he had a prednisone taper shortly before the surgery, so that may have helped to alleviate the autoimmune response.

 

I am also seeing posts on here about not treating kids who have had PANDAS too long. My son had 13 years of PANDAS attacking his brain before we started on the right path. It has been a difficult and complicated journey (much more than what I just posted above) - one that I would not wish on anyone... but he is happy and healthy now. He has no tics, few rituals, and functions in school with the help of some very wonderful teachers to point him in the right direction. He has friends, goes to the skatepark, and is trying to decide what he wants to be when he finishes High School. IVIG has kept him infection -free and as long as this lasts, I think he has a shot at recovering brain function.

I do believe that untreated PANDAS can cause long-term changes in the brain. I also believe that education and therapy can allow other parts of the brain to take over and our kids can regain function - even after a "new baseline" if we can stop the autoimmune process and keep them healthy. JMHO.

Edited by kimballot

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