Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.

[SurfMom]

I am checking as the mom much farther down the road to be a help, if I can. My daughter was diagnosed in November 2012. This is our five year anniversary with this disease and there is HOPE for all of your kids. This is long but please read: 

With one of the most profound and difficult to treat cases to  ever treat - my daughter is staring community college in the spring!

You name the symptom and she has exhibited it - to name a few... complex tics,  anorexia, bed wetting, mutism, depression, OCD, sleep disorders,  a host of psychiatric symptoms (including schizoprhenic type symptoms including violence), and catatonia.

She has also had every treatment - countless antibiotics, IVIVGs, rituximab, cell cept, prophylactic antibiotix, cytoxan, tociluzimab.

We lost four years of life - she lost high school, and I shut down ever yaspect of life to take care of her.

It has been lonely, frustrating, difficult, depressing...and yet hopeful, strengthening, funny, and finally TRIUMPHANT.

I am repositing something a wrote in 2015 to give you all some encouragement and some general advice - especially to parents of children who are most severely affected. After I wrote this my daughter's trajectory slowed, but we found tociluzumab was the treatment that finally rounded out her recovery and though she still has some memory loss and is still making her way back academically. We know that she is going to have a NORMAL LIFE. Just a year ago, I thought she would always be with us, never have a job, never have friends...and now she is learning to drive and starting college classes (with a little support from special services)  in a few weeks. Now she is running, swimming, laughing, talkative, and back to her old self - volunteering at a local library and worried about her hair and makeup (you have no idea what a big deal that is). Remember that every child presents differently and the part of the autoimmune system that is affected - and therefore the treatment that works - is different for each child. That said, PM me or ask me here and I will try to start checking in now that I too have my own life back.

Hang in there....it will get better... Here is the 2015 post. 

My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.

 

1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:

 

2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist. 

 

3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game. 

 

4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition. 

 

5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye. 

 

6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health). 

7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to. 

8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf. 

9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them. 

10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.

11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .) 

12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.  

After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life. 

Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too. 

 

[bobh]

Yes, long post, but good - thanks.

It is so encouraging to hear that your daughter is "worried about hair and makeup".   I didn't think that I for one would ever say that, but after the catatonia, that is truly so good to hear.

How did you get to the point of getting tociluzimab?  I presume it was an immunologist that prescribed it.  Your posts are the only ones that mention this drug on this forum (according to the search function, if it is working correctly), so this one is not well known, and maybe should be.

Our son had catatonia-ish symptoms not long after his onset -  usually once or twice a day, lasting from 10 minutes to just under an hour.  We took videos, and a neurologist (that outright rejected PANDAS as not a real thing) pronounced them to be "psychogenic seizures".

Wikipedia also defines catatonia as "a state of psychogenic motor immobility and behavioral abnormality manifested by stupor."  I wonder if we should use a different word, because psychogenic (i.e. "of psychological origin") is definitely the wrong idea here.

[libera]

Thanks for your encouraging post!!!  So great to hear that your daughter is doing so well!  

We are going to a new neurologist next month and would like to start fresh (last pediatric neurologist didn't believe in PANDAS).  Any advice on how to approach him?  To me it is obvious brain inflammation caused by an auto-immune response, but I don't even know how to get the conversation started . . .  both kids did way better on abx but Dr, K only prescribes them for a limited time.   Of course we have the usual "bucket list" of symptoms (ocd, anxiety, depression, "adhd", school refusal, et al).  What symptoms should we hone in?  What tests should we ask for?     Your advice would be greatly appreciated.

Also,  like Bobh, I would also be interested in the details behind getting the tociluzimab prescribed . . .

 

 

 

 

 

[SurfMom]

The progression of her treatment was as follows.

Amoxicillin (failed),  Azythromycin (failed), Cefdinir (failed),  Prednisone (failed), IVIG Monthly with Cellcept (some improvement),  IVIG Cellcept solumedrol (improved then failed), IVIG Cellcept rituximab (improved then failed), IVIG Cellcept cytoxan (improved then failed)....

then...

IVIG (monthly) Cellcept (daily) tociluzimab (monthly) almost immediate, steady, staying improvement.  

[SurfMom]

The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented.

Then see what tests he suggests and allow him to make the diagnosis.

Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance.

I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-). 

[rhyanen]

Hi. Curious what heart issues your daughter was experiencing and what treatment helped it to resolve?

My son was diagnosed with PANS/Lyme 3 years ago(age14)with intermittent flares. He has cardiac involvement. Looking back he's had PANDAS/PANS since age 3. He was always sick. At 14 he could no longer function, dropped out of high school and became severely agoraphobic. He is still agoraphobic and can sometimes leave the house for dr. appointments but that is about it. We cannot get IVIG or any of the other treatments due to lack of knowledgeable physicians in the area and lack of the financial means to do it.  He's a very severe, complex case. It feels like things will never change for him and it's very discouraging.

[mwmmom]

Surfmom -- Thank you for posting this great advice. My daughter is know on her 5 year anniversary too.  She was a very, very severe case and is now a fully functioning teenager making great grades, attending camps, worried about friends, and dancing. Please see the post titled "A message of Hope" from August 2012.  To all parents in the PANDAS crisis, please remain hopeful!!!! All of our kids deserve to be 100% healthy again. 

[Wombat140]

Thank you, this news encouraged me a whole lot!  In return I'd just like to say something about what you said:

Quote

(Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health).  

What's really made me see this myself is the migraines I get every now and again.  (When I was twelve they used to be every two weeks regular as clockwork, but now they're much less often.)  The first stage is that I start to feel just generally awful, yet without any really that drastic symptoms.  Sometimes there are NO detectable symptoms at all in which case I may not realise what's going on.
I'll feel sure that I'm seriously ill.  I'll think what on Earth is wrong with me?  Am I finaly collapsing from the strain of everything I put myself through with the OCD, or what is it?
Then I get a definite headache and then I'm sick.  After that, I'm usually fine, unless it decides to repeat the headache and feeling sick stages again - I try to get to bed before that happens.  When I get to the feeling sick stage, if I hadn't realised what was the matter before, I laugh and think, "Oh, so THAT's what was going on!"
My point is, severe depression and hypochondria, headache, vomiting.  How's that for a set of symptoms?  YES, being ill, no euphemisms about it, straightforward "aw do you want a hot drink?" ill, can very easily do this to you.  Stick that in your Oedipus complex and smoke it.