New here - Introduction

[Lisa3]

My dd 10 had just been diagnosed with PANDAS, by Dr. T with strep, mycoplasma and Coxsackie as triggers. Today we started treatment with Biaxin and Valtrex. Before that we were on Azith for 10 days. Amox before that.

 

I can't help but feel like the worst mom in the world because she's had symptoms for years, but I thought she was being difficult or challenging us. It wasn't always bad - she would wax and wane. She often complained of a “tummy ache” and would say “my head hurts” She always complained of being tired and she was often very moody with inappropriate aged outbursts. She always had separation anxiety and would repeatedly ask for something - usually outlandish. She has a history of strep, scarlet fever and pneumonia. My pediatrician knew all these things, but never mentioned PANDAS. She did do a CBC and tested for Lyme which was normal and we also did an xray of her abdomen which was also normal. Her final suggestion was to see a therapist.

 

Okay, now fast forward 2 years - Her acute onset started this year, grades slipping, major separation anxiety, major depression, withdrawn from friends and activities math skills and handwriting deteriorated, clothes and shoes sensitivities - her tics/OCD much worse with repetitive movements kicking her leg and spinning and playing non-stop on her iPod touch or any electronic (which we have to hide).

 

On Jan 10th 2013 after a positive strep test she literally turned into a different child - pupils wide and possessed. Somehow I stumbled on PANDAS myself while looking up 'depression in children' online. I immediately thought “Oh my God, this is her” I asked my pedi(a new pedi by the way) if he ever heard of PANDAS he said he was "sort of” familiar with it, but not really and that I would be lucky to find someone to treat her - someone that believes in it. Luckily through a friend, I found Dr T. I’m hoping now we are one the right track, because this has been beyond draining. My dd has been home bound for a month so far. I'm shocked over the unawareness of this disease. No one has heard of it - family, friends and teachers are all hearing about this for the first time. How many children have suffered needlessly? I’ve been lurking on this forum for a few weeks and I’m so happy to be a part of such a great support group. I’m in NJ (Jersey Shore area) and would love to talk and meet others who are in NJ too.

[dcmom]

Hi Lisa 3-

 

I am in NJ also. There is a support group that meets in the Edison area once a month (a Monday night). If you are the northernmost end of the shore, that might work, otherwise I would think its too far.

 

We see Dr T also. My daughter has had most of the symptoms you describe.

 

I don't have time to write too much, but wanted to let you know that things will get better. Dr T will treat the infection, and then most likely try to tamp down the autoimmunity (maybe with steroids). Hang in there!!

[michiganpandas]

Your story is the same as ours....It even took me a while to believe the ideas of this group when I found it....(antibiotics, ivig, steroids, no pysch meds, etc.)....Every doctor and specialist in my area either did not hear of it or laughed and said, "well, you know it's a very controversial diagnosis and no one is going to treat it based on what the internet says"...ugh!

Just wanted to say that you need to take a deep breath, sit back, and really listen to the plans of Dr. T and ideas here...also, realize that you will probably still have some ups and downs (wax/wane) that will continue.

Also, if she has ocd specific fears or can't get back to school you might want to schedule an appointment at the Rothman Center in Florida for Exposure therapy...I would schedule it in August because that will give you some time to get her initially better with Dr. T's suggestions.

Also, just to offer hope....my daughter was VERY BAD (could not leave my bedroom, go to school, licked food, tics, screaming of stomach and throat pain, INTENSE fear of throwing up and other very unrealistic things...very ocd)......

She is now back to a straight A student, does activities, has great friends...(is still moody, sigh...might be 9 year old hormones!..)..but, is functioning! She even just recovered from strep this week (beautifully) and only missed 1 day of school....prior to that this year she had perfect attendance. We are not "cured"....and we could get bad again, but I know there are options for treatment and I have seen her recover so I know it's possible again.

[Lisa3]

Thank you ladies - I am terrified because I know this will be ongoing and I have a lot to learn, but I'm also grateful that we are finally on the right path.

 

dcmom, your support group may be a little too far for me - but I'll map it out. It's helpful to know you see Dr. T, I'm sure I'll have some questions for you.

 

michiganpandas, that gives me hope for my dd - She has barley left her room in weeks, yelling at us..telling us to leave her alone. It's heart breaking.

 

One thing I know is that I'm not alone in this )

[mama2alex]

Hi and welcome. I'm so sorry your daughter is going through this. It is beyond heartbreaking. So much of her story sounds like my son. He also had "something" going on for years - possibly since birth - before he had his sudden severe onset of PANS/PANDAS just before he turned 9. He also suffered with severe separation anxiety and was homebound at two different times. No history of strep or scarlet fever, but he had 5 bouts with pneumonia. His sudden onset came with the 5th.

 

I wanted to let you know that many kids on this forum have Lyme, and although your doctor checked for it a couple of years ago, you should not assume she doesn't have Lyme. The standard test, which your doctor most likely used, doesn't look at some of the proteins most specific to Lyme. And I assume she didn't check for any coinfections. And its a test based on immune response, so its flawed. Some people's immune systems don't mount a response that shows up on the test, and/or the Lyme can hide from the immune system. Our son didn't really start on the road to recovery until we got a second opinion from a Lyme doctor and started treating him for Lyme and coinfections. This is not the case for everyone, but enough that I thought it was worth pointing out, especially given where you live. There are other issues that can contribute, including heavy metals, mold toxicity, methylation issues, KPU, immune deficiency, vaccine reactions and probably other things I can't think of right now. I don't want to overwhelm you, but I think its better to know up front that this is not a simple illness. Read as much as you can and you will figure it all out and get her better.

[dcmom]

Lisa-

 

I totally agree wtih michiganpandas- we did the ocd therapy program at USF- it was amazing. Most times, therapy is needed along with medical intervention. We have not been able to find local psychs that are anywhere near as good as USF.

 

Also- to help you out now- I would consider trying 5 days of daily, regular advil dosing (3x per day). Many of us find it at least takes the edge off.

 

We use liquid sublingual melatonin by source naturals (on amazon) to help with sleep- it is a lifesaver!

 

We used (and love) the book "What to do when your brain gets stuck. A child's guide to overcoming ocd" (amazon) It is a way for you (and dd) to start learning about fighting back.

 

Also- hopefully you will start to see progress. Most of us here agree to look at progress not on a daily basis, but week over week. If you are seeing improvement week over week- I would stay with whatever course you are on. Otherwise, I would probably give a med (antibiotic, etc) one month, if at the end of one month no progress, I would move on. With pandas, it is good to work methodically, try one thing at a time- but also to have a sense of urgency, because the longer you wait with something that isn't working- the longer the child suffers. It is a balance.

[Teri]

Hi Lisa

 

Welcome! Another Jersey Mom here -we are in Central NJ - not far from you. Dd is 6 and diagnosed with PANDAS, LYME, & Bartonella. We have been officially on this roller coaster for over a year now but we/Ped. Suspect she has had it longer.? It's not easy journey but it will get better! It is also stunning to us that very few people are aware of PANDAS. We have tried to explain it to family, teachers, and friends. It's exhausting because so many people just don't get it.

Our DD is a perfectionist and works very hard to hold it all together at school - which she is able to do pretty well. It all comes out when she gets home. Right now she is just coming off a steroid taper and doing pretty well. She currently takes Azithromycin & Cipro daily. Someone gave us some good advice - choose faith not fear! Have faith she will get better! You're on the right track now!

 

Peace,

Teri

[airial95]

Don't beat yourself up for not seeing it sooner - we have all been there/done that. My son was 19 months when he got the infection that triggered his PANDAS - and his personality changed instantly - but we ignored it because we (and everyonelse) assumed it was the "terrible twos" - 9 months later, we realized we were dealing with more and that's when our Ped mentioned PANDAS - 3 years later, we're still on the journey.

 

But knowing still doesn't make it easy. My daughter was dx PANDAS last year - and while we were 2 years in, knew what to look for, all the ins and outs, we still didn't "catch" it initially because she has always been a sensitive child, and thought most of it was acting out because her brother took so much of our attention. Fortunately for her, our ped always insisted on getting the whole family ckd and treated with every strep infection my son came up with (which are ALOT!) and my daughter often popped up positive with no symptoms - he'd give her a 30 day course of abx. It was after her 3rd or 4th infection like this that we noticed the correlation between her moodiness and other behavior outbursts with the strep infections. In hindsight it was so obvious - but we still missed it, and we were supposed to be experienced PANDAS parents.

 

You've found a good group here - who can offer alot of support and advice. Someone already suggested the ibuprofen - it's a life line for us, especially in crisis. Another suggestion I alway offer those who are new is to keep a detailed journal or log daily. Write down her symptoms and their severity every day. This will help you track progress, what treatments are working (or not) and also identify triggers and tells (for example - my son only wets the bed when he has positive strep - our logs helped us identify that. If he wets the bed, we don't even wait and get him right into the doc to get checked.) We use a numerical scale of symptom severity (0= not seen -9 = not functional). Using a number helped us take the emotion out of the scoring. As our son improved, and would have a setback, it would seem so much worse than anything - but if we looked back at the scores, while it was a setback, often it wasn't as bad as the previous one - and even those showed constant improvement. It can be a helpful tool for your doctors too - every member of our medical team has found them useful in their own way.

[Lisa3]

airial95 - I have been keeping a journal the last two weeks and I will start using the numerical scale. I will use ibuprofen too. Thanks for the encouragement

 

Teri - glad to know you're close and I like that, I will choose faith not fear!

[reactive]

I would also like to add...keep an eye on her stomach aches and headaches. My DS 12 is PANDAS...my DS8 is not, but the 8 year old would get strep quite a bit, and even when he did not have strep he would have intermittent headaches and stomach aches...when his tonsils were removed, those headaches and stomach aches went away Read tonsillitis understood, a blog by Dr. Brook.