Post plasmapheresis

[T_Mom]

She had been out of school since the previous March! She is now about 95% again -- doing sports and able to function!!!! Our family -- like so many, had been greatly affected but the past WILL NOT dictate our future!...,

 

Both my daughters had severe episodes with typical PANS symptoms -- and both had pheresis.

 

It took us 4 to 6 weeks post pheresis to start seeing obvious glimmers of hope of change--and then slowly, week to week they recovered. In our experience it is a full year to get fully "back" --

 

I hope your experience is the same-- please come back , find this thread, and post your outcomes in 6 months--

My best to you --

[Hrosenkrantz]

Interesting post t_mom. By the way, your in box is full

[jackalibeth]

t_mom thanks for the extra information. Dr. L said 3-4 weeks is the typical time it takes the antibodies to detach from the basal ganglia and for the real improvement to kick in. We are also adding ibuprofen to our daily regimen to close the brain blood barrier. What do you mean by "typical" saw tooth recovery? Now that she is back in school what are you doing to prevent a relapse? It is so nice to be able to talk to other Moms who have been through this. Pandas can be a very lonely place. I hope to share good news soon.

[T_Anna]

I'll chime in too.

 

DS15 has had PANDAS symptoms since he was a toddler (at 2 years old started with fear of grapes, frequent urination, speech regression).

 

He was diagnosed November 2012, at 14 years old after seeking CBT help for debilitating scrupulosity and more reg. OCD.

 

Found the following infections: Strep, MycoP, Coxsackie (Prob his initial trigger with Strep and Chicken Pox), EBV, etc.

 

He stopped attending school January 24, 2013 and stopped showering and voluntarily changing his clothing.

 

February 2013 HD IVIG (small improvemnet)

March 2013 HD IVIG (not much difference)

May 2013 - Run Moleculera = PANDAS highly likely, Very high CAM KINASE II

JULY 30-August 3 - 5 PEX Pricedures - no noticeable change

SEPT 2013 - HD IVIG

OCT 2013 - HD IVIG - start seeing more flexibility in changing clothing

DEC 2013 - HD IVIG - starts responding to push from us to clean (hoarder) and changing clothing more frequently. Walks around the house more, makes himself food, no restrictative eating. Most improvement we have seen so far.

JAN 2014 - IV Steroid (last week) Maybe more energy, but seems to have returned a few restrictions in food, too early to know.

 

He tests positive for Hashimoto's Encephalopathy, has elevated SED and ACE.

He is on Augmentin, Valtrex, Nystatin, Flagyl, Minocycline. Supps: Japanese Knotweed, Thyroid Support, Olive Leaf Extract

 

We are seriously considering starting Laurel Springs online private school this week (just need to get him on board).

Thinking of doing another HD IVIG next week and possibly going the CellCept route..

 

Luvox was horrible, Rispedral did nothing.

 

You are not alone!!!! We all feel that way : / Especially as others are getting lerners permits and our home life is NUTS.

 

Hang in there this too shall pass!

 

T.Anna

DS15

[T_Mom]

t_mom thanks for the extra information. Dr. L said 3-4 weeks is the typical time it takes the antibodies to detach from the basal ganglia and for the real improvement to kick in. We are also adding ibuprofen to our daily regimen to close the brain blood barrier. What do you mean by "typical" saw tooth recovery? Now that she is back in school what are you doing to prevent a relapse? It is so nice to be able to talk to other Moms who have been through this. Pandas can be a very lonely place. I hope to share good news soon.

[T_Mom]

Sawtooth pattern of recovery is recognized as standard for a PANDAS or PANS recovering child. Basically means that we as parents need to prepare ourselves for ups and downs--a lot of them ! As once an effective treatment is done , even if "recovery" is happening, there will be ups and downs -- the TREND over time (a lot of time -- as in months to a year ) ...the TREND is what you must watch for -- and by a trend in behaviors (or lack thereof!) by such a trend you can be encouraged !...Keep a record , rate each day objectively -- and watch for the week to week changes, not daily changes! Recovery takes time.

 

Our daughter is on Augmentin and Azithromycin -- that is it right now -- she has managed to avoid all colds or illness even with family members having been ill.

[DsMom]

And boy do I agree: PANS/DAS is an incredibly lonely, scary and life changing experience for virtually all of us living it. I am SO thankful for you parents and this forum!

 

I will chime in with what I've been observing in DS13, as the 'recovery' after PEX is very much a hot topic in our home; DS is 5 weeks POST-PEX today.

 

DS13 has definately had the 'pages turned back' experience. He had an immediate uptick in almost all his PANDAS symptoms (tics, jerks, insomnia, the non-stop itching sensation skyrocketed, depression worsened (how that could get any lower I don't know, but it did) germ and bugs OCD, started to flush red again at night, etc). None of which I was expecting, and I was freaking out a bit, so I posted from the hospital back in 12/13...warm thanks to the responders, it helped me come 'back' to myself and focus.

 

Like your DD Jackalibeth, my DS is more than bummed that he's not feeling any significant changes as of yet, and what he's waiting on is a decrease/ cease to the itching.

 

But I've not given up hope of some positives materializing, since he's got pretty severe stuff going on, and it was his 2 year anniversary of the PANS crash the day he began PEX. Also he's older and majorly in the throws of puberty, which seems to complicate everything.

 

I do think in the last few days he's ever so subtly gotten 'lighter' in his mood, and is even cracking jokes about some of his OCD behaviors as well as putting irrational ideas he's held on tight to for over a year now into more, I don't know, practical or viable POV's

(instead of ranting, or being terrified that humans/the world are only a speck of dust on some larger beings fingernail he's now postulated that our universe is just one of many and there most likely is 'life' somewhere else out there. This might not seem like much of a shift but believe me just the rationality of the thought process got my attention. He also PICKED UP a dead bug he found in my office this AM, with a tissue of course, and deposited it in the trash. Then he instructed me to get that trash out to the garbage can ASAP but he didn't hang around and make sure I did it). Baby steps really means baby steps in this case.

 

My husband (and DS) would poo poo these as victories, but if I'm seeing something different I'm counting it in the plus pile.

 

I have no idea if he will see any significant gains as we go into the future, but I'm sure hoping we do.

T_Anna's son has had numerous IVIg since his PEX, and she is seeing small positives thank goodness, slow but still tiny steps in the right direction. We will discuss IVIg w/ Dr.L next week during our flup w/her (first since PEX) and maybe that will be next on our list vs jumping into Rituximab, plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...

 

It's this WAITING game that is just so darn hard, so many many thanks to all of you who keep us rallied while we wait. Hang in there, and feel free to PM if you ever need too.

Erin

[T_Anna]

<<plus need to get valid AE results back before we go there and most likely PEX really skewed his labs that were taken 10 days ago...>>

 

Our AE results were also post PEX. We re-ran a bunch last week and I'll get the results tomorrow, I'll let you knwo if they are the same or skewed.

 

Lately, our biggest improvement is that DS passes out around 11-12 at night and sleeps until 8-9:30am. we have plateaud a bit in other areas (changing clothes, bathroom) and some restrictive eating/bathroom avoidance returned this week, but we are only a week out from IV steroids so maybe that had something to do with it.

 

T.Anna

[T_Mom]

Erin and T-anna, these posts are really good to read, and encouraging. Keep at it (I know you will) and keep an eye on the trend, not the moment, or even day.

 

What AE tests and where have you had them done may I ask?

thanks--

[T_Anna]

Dr.T ran the AE blood tests. We have found Hashimoto's Encephalopathy. I will post an update separately.

 

It included thyroid antibodies, ace levels, SED rate, etc.

 

T.Anna

Edited January 19, 2014 by t_anna

[DsMom]

There are 4 separate tests done for ours, 3 at Mayo and 1 went to SLC. I don't have the names of the antibodies tested for but I can get them (still waiting on final results) for you next week. I will PM when I have them.