New to PANDAS - confused and frightened

[laurielee123]

Hello everyone,

 

I'm sure that all of you know exactly how terrifying and painful this all this all is and so understand just why I need to get all of this out and seek some reassurance. I sincerely apologise for the length of this post and thank you so much for reading it; I just need to put the whole story out in front of people who truly know and ask - in your opinion does this actually sound like PANS/PANDAS or not?

 

I live in theUK. My very normal 6 year old daughter developed very sudden onset of behavioural/psychiatric/emotional problems around 4 weeks ago.  In simplest terms, it seemed as if she went to bed one night a perfectly normal child and woke up the next day a completely different one.  

 

Her symptoms began with extreme anxiety with repetitive, continual obsessing about various illogical "worries" and what I can only describe as depression.  It was whilst searching for information about extreme childhood anxiety that I came across the first mention of PANDAS.  Once I delved further, so much of Grace's behaviour became clear to me (or I might be clutching at straws) in the light of understanding exactly what PANDAS is.  She is not suffering from any tics etc. as far as I can tell, with the exception of sometimes blowing bubbles from her mouth and a bit of repetitive "fake" coughing, but it is hard to be sure at this stage what is relevant and what is not and of course, nothing like as severe as I have read with most other PANDAS children.  Over the weeks the anxiety began to be accompanied by what I can only describe as ADD type behaviour at school - inability to concentrate, oppositionally defiant etc.  Her school work completely deteriorated and her teachers share my view that it appears her personality has completely changed (she was previously a bright, fairly well behaved pupil who has always been above average academically).  Her symptoms in a nutshell were as follows:

 

- Incessant, illogical worrying, impossible to reason with (this seemed to reach a peak before easing off a little)

- Paranoia (at the moment she is convinced I am not her "real" mother, full of conspiracy theories surrounding this, is having thoughts about me dying etc.)

- Extreme emotional lability (lots of crying without knowing why or for reasons mentioned above)

- Inability to concentrate

- Oppositional/defiant behaviour (especially at school)

 

There are of course many other factors that could account for Grace's behaviour (family upset, genetic mental illness - history of depression and bipolar disorder on paternal and maternal sides) but the very sudden onset and correlation of her symptoms with those of PANS/PANDAS make the chances of PANS/PANDAS being responsible seem possible. I have also come across some links to this kind of behaviour and Lymes disease, I have not been able to find much more information about it but wonder if it could be relevant as Grace was recently on holiday with me in Canada where we spent some time in and around a local creek area.

 

I managed to convince our local dr (who has never heard of PANS but was very nice and didn't dismiss the idea) to prescribe Amoxicillin and within 3 days there was a huge improvement (but is this just coincidence?). Bloods (ESR, CRP, ASO and antiDNAse) were taken yesterday, the dr called this morning to say that the ASO won't be back until next week but what he had so far showed "normal" except one which suggests she may have had an infection a while ago.

 

Now on only day 5 of the antib's and ibuprofen twice a day she is almost back to her old self, I would say probably 80%, massive improvement at school and has been laughing and chatting normally with me today, if a little hypercactive.. All that seems to be left is this worry about me not being her mother. It just seems so odd for her to be completely logical and normal in every way except for this one thing. She has managed to get through the whole day interacting fairly normally with me and then just before bed, very matter of factly tells me she is still convinced that I am not her mother and that she has told her teachers today. We have always been incredibly close and I know her inside out; I can tell this is not something she is faking or saying deliberately. I am terrified that this is not PANS/PANDAS and that my little girl is just instead psycholocally disturbed.

 

So there we are. Enough evidence for PANDAS or not? I am quite literally driving myself to the edge of sanity by continually searching online and trying to figure this all out, not to mention coping with the pain of the way my little girl currently feels about me so any opinions at all, either way, would help me enormously. Thank you so much xxx

[peglem]

Well, if it is not exactly PANDAS (strep related), then it sure sounds like something related to some kind of infection. Sounds like an absolute classic case to me. Did you have her swabbed for strep?

[EmilyK]

Seems to fit if you ask me. My son's first tic was that type of cough. I'm glad your doc is sympathetic, and I'm sorry you're going through this. There's a ton of knowledge posted on this forum. I spent my first few visits reading and reading and reading. Good luck with everything.

[laurielee123]

Thank you so much for your replies. They didn't think it was worth doing a throat swab as she had already been on antibiotics for 3 days by the time I convinced anyone to do any tests. I have just recalled that around 5 or 6 weeks ago whilst we were in Canada, Grace had some red sore patches of skin on the upper underside of her arms and upper inside of her thighs - could that maybe have been mild scarlet fever (strep)?! All seems too much of a coincidence now ...The lack of tics and fact she's now so well except for the one single thought made me worry I had it all wrong I.e. it isn't pandas but it's reassuring to read you saying it sounds like it is. Thank you x

[sosudden]

I agree -sounds like PANDAS/PANS to me. So many symptoms and changes in personality. Sorry your daughter and family are suffering and struggling...this is a great place for support and information.

[1tiredmama]

Welcome to the forum! I'm sorry that your little girl has been so miserable. I agree with the others that this could be PANDAS--remember, strep may or may not be the trigger, as other infections can also be a trigger.

 

I wanted to add that our PANDAS doctor told me that a child does NOT have to present with tics or OCD to have PANDAS. I have one PANDAS child with both tics and OCD behavior, but I have another PANDAS child with no tics or OCD (yet.)

 

It sounds like you are doing all the right things. Don't give up.

 

I used to think that, because my grandmother was severely mentally ill, my children had inherited a laundry list of mental illnesses. My PANDAS doc suggested that perhaps my grandmother had PANDAS! She died young from some kind of "heart damage"--possibly strep related. We'll never know, but it is an interesting theory. PANDAS is new to us, but it has probably been around for a very long time. It is entirely possible that your child inherited PANDAS, not mental illness.

 

Hang in there!

[AmySLP]

I am certain that those were tics that your daughter experienced....coughing and the repetitive bubble blowing from the mouth are tics I've seen in my own daughter. My child only presented with scarletina rash as her only physical symptom of strep. Look up pictures...this may be jut what your child had and will be good evidence of such. You are doing exactly what you should be for her...you might start a new post asking for help in the UK and parents may be able to point you in the direction of PaNDAS doctor there.

 

 

We have a family history too....been told by PANDAS docs here that its definitely got a genetic component.

Edited October 13, 2012 by AmySLP

[laurielee123]

Thank you so much everyone for your replies x

[ptcgirl]

Your daughter sounds EXACTLY like what happened to my daughter 7 years ago. It is almost like you've written her story for me. She is now almost 13 and this has been a very LONG road for us. She does sound like a very classic case of PANS/PANDAS. My suggestion would be to find a PANDAS doctor and stay on top of this. Although she is better right now, this will likely not be an isolated event. I sure hope I'm wrong, but I found myself digging my head in the sand every time she got better and in the end it hurt her. I wish I had treated it more aggressively from the beginning. There really wasn't a whole lot of information back then (in my defense). For example, if I could go back in the past, I would have kept her on a low dose of abx for prevention (particularly after having her tonsils removed. I wish you and your child the best of luck.

[LNN]

I agree that this sounds like PANS. And I'm so glad she's responding to antibiotics. I just want to remind you to keep Lyme disease on your radar (which also falls into the PANS category). Pandas and lyme can share a LOT of symptoms in our kids. If you get to a point where you need to see a doctor who is willing to explore both, you may want to contact ILADS - an international lyme association - for a doctor referral in the UK. http://www.ilads.org

Never doubt your intuition. Most often, the parent "knows" long before the doctor.

Edited October 13, 2012 by LLM

[laurielee123]

Thanks again everyone. Wow ptcgirl, did your daughter have the same delusion about you being her real mother? Its been by far the hardest thing for me to cope with so goodness knows how my daughter feels inside. I am doing everything I can to get my daughter the diagnosis and treatment she needs, its incredibly hard here in the UK, but I will not rest until we have someone good looking after her. Im following alot of different avenues at the moment. And yes I am still wondering about Lyme so thank you for that link LLM x

[kos_mom]

Laurie Lee,

Just so you know--about 10 percent of PANDAS children present with hallucinations; the mother delusion seems a variant of this. I second your getting a PANDAS specialist as soon as possible--constance vigilance will help keep your child well.

Ko's Mom

[ptcgirl]

Laurielee123, the good news in our daughters' similarities is that I can also tell you that my daughter doesn't remember hardly any of the initial onset (which was by FAR the worst for us). I don't know if it was just too traumatic and she's blocked it out or what, but she really doesn't recall how bad it was or the things she thought, did, or said. That to me is a blessing beyond belief. I wish I could forget how awful that time was. I know that I will never fully recover from it, but time moves on and so do we. She's had very bad patches since (of course) but nothing that was so scary as that first onset. I imagine a lot of it has to do with the unknowing aspect. We just had no idea what in the world was happening to our little girl and all of our lives were turned upside down. Hard to think about still....

 

Thanks again everyone. Wow ptcgirl, did your daughter have the same delusion about you being her real mother? Its been by far the hardest thing for me to cope with so goodness knows how my daughter feels inside. I am doing everything I can to get my daughter the diagnosis and treatment she needs, its incredibly hard here in the UK, but I will not rest until we have someone good looking after her. Im following alot of different avenues at the moment. And yes I am still wondering about Lyme so thank you for that link LLM x