new here - need advice

[ashley]

When my 9 year old son developed tics in November 2012, everyone told us that this was fairly common and would likely go away in time - and after several months it did. Just over a year later, they came back stronger than ever. With the new tics my son also began to exhibit what we thought were signs of emotional stress, and that is what caused me to call our pediatrician. The doctor immediately suggested that the abrupt onset of tics could have been caused by strep and brought us in for blood work. My son is now on azithromycin and VSL#3 for 5 days, followed by an anti-fungal. We have a follow-up appointment with the pediatrician on February 4th.

 

After finding PANDAS information online, I now realize that what we thought was stress brought on by the tics might actually be separate symptoms. In the last week my son has developed extreme anxiety at bedtime and says if he isn't with me he is overwhelmed by "bad thought." He hasn't slept in his own bed for a week! He also had 2 very bad days just over a week ago where he was angry and defiant and had a huge meltdown over something very insignificant. It doesn't sound like much to go on, but this is NOT typical behavior for my child! I just don't know how to tell if it is caused by normal adolescent hormones or if this is a part of PANDAS?

 

If anyone can offer advice for things we can be doing to help him, I would really appreciate it! Are there dietary things we should be avoiding? Supplements? How do I protect him from further exposure to strep? I am feeling totally overwhelmed!

[Dedee]

This is all very typical PANDAS / PANS symptoms. You will need more than 5 days of Zith. Minimum of one month to get things settled down. Several things you need to do. You are going to have to educate yourself until you think your head will explode. You can go to the pandasnetwork.org site and they have lots of information there. You can not count on a physician to know how to treat this. You will need to find a PANDAS / PANS specialist and make an appointment right away. There are not many so you may have to travel, but it will be well worth it to get your son the help he needs. Do not delay in getting things going. The sooner you get things going the quicker things get better and the easier things turn around. When PANDAS / PANS goes untreated for long periods of time it takes longer and harder treatment modalities to reverse the effects. Best of luck.

 

Dedee

Edited January 24, 2014 by dedee

[pr40]

there were several people who joined in last two months, check their posts and advice they got if you haven't done that already. in one of those posts, it was suggested that NIH (S. Sweedo) might be willing to work with your dr.

at any rate, you may want to print some info that you find here on the site and bring to your next apt to convince pedi about long(er) term abx. If I were you, I would ask for quicker apt than 2/4.

[LNN]

ACN - the parent non-profit that runs this forum, also has a Pandas primer for parents who are new to the disorder. It might answer some of your questions. It's an e-book http://latitudes.org/store/should-you-consider-pandas-ebook/

[qannie47]

Yep, sounds like Pandas to me, and I don't say to to easily. I ditto what most have said. Find a specialist, and read. Come here for support. The people here are amazingly supportive and know their stuff. Got me through a lot. Don't take him off abx until he is completely done with all symptoms. Also, know that when he recovers, this will most likely not be the end of it. That is where you will need to read and educate yourself.

 

Kudos to your doc.

 

Best of luck

Edited January 24, 2014 by qannie47

[qannie47]

Another important thing to note. Once this disorder sets in, it seems that anything that triggers an immune response will/can cause a flare. The common cold, allergies, exposure to other's illness's, stress, a bad fall, etc. Motrin, ibuprophren, is good for the inflammation. It is not a cure, but a bandaide while using abx and wating for the recovery stage. Other's recommend epsome salt baths because of the magnesium and that can help to calm. I used this recently, and with good results.

[ktdommer]

I like your doc just by the fact he prescribed VSL. Not the norm.

Does your son have any aches or pains? New stomach issues? migraines?

[riffleshell]

The general anxiety, the racing thoughts, the separation anxiety and the anger/meltdowns are all typical PANDAS symptoms based on my limited experience. (I'm new here too. )

 

Ditto what the others said about next steps.

 

Take care of yourself too, not just your son.

[Mommy2MCL]

The only other thing I can add is ask if you have tried Motrin. While it is just masking the symptoms some it can help as a relief of symptoms. In a flare we use it 2-3 times a day. Mainly because it helps calm her symptoms and function normally at school and bedtime.

 

I also agree that you should find a PANDAS specialist to treat your son. They know all the right tests to order and give but I think its great your Pedi is on your side. Mine rolled his eyes at me and made me feel dumb for suggesting this route.

 

Good luck.

[ashley]

Thank you all for your responses and suggestions. We are very lucky to have a wonderful pediatrician! I have not tried Motrin yet, but will see if it helps. @ktdommer, my son has been complaining of headaches over the past few weeks but no specific stomach complaints.

 

If I may ask, how have all of you dealt with talking to friends, school, etc. about this condition? My husband thinks I am talking about it too much and that is causing my son to tic more, but I really don't think that is the case. The stress is really hard on all of us.

[JoyBop]

I think sometimes its best to minimize what your child hears because it is all very frightening. At least until he is not in a flare when he can handle it better. It's very scarey to them what they are going through, and even though they can't control these fears, they know that its "not normal". The whole scenario can really damage their self esteem which can perpetuate so many symptoms, as a have found.

 

I recommend Bethaloneys new book, Childhood Interuppted. It will walk you through the answers to so many of your questions. If not give you great, practical advice. There are many tidbits quoted by doctors that I really enjoyed reading in the book as well. I love her positive advice as she covers topics on how to address the school, speak with the child, and deal with the medical end of things. I think this is a great resource!

 

You will need to deal with the school. Some of us here have had hellacious experiences and some of us have had miraculous interaction with schools, and every thing in between. Some accept the pandas diagnosis and some argue. I would not allow our school to deny a medical diagnosis and written documents by our doctors, but getting him the help and services he needs has been a different story. Hopefully your school will be supportive. You can bring info on pandas so they understand, but ultimately I would focus on your child's symptoms. Those are indisputable , and are after all what they will have to cater to. A 504 is a good place to start. Consider homework modifications, a plan in case a panic attack or melt down occurs, or whatever you think your child's issues will be.

[Missmom]

Just a few more things that we avoid. Others may disagree, but over the last two years all of my research tells me to listen to my instincts and avoid these things. We avoid vaccinations, including flu shots especially flu mist, caffeine, Tylenol, singulair (my son was on this long term before pandas dx), chocolate.

[chubbermommy]

If I may ask, how have all of you dealt with talking to friends, school, etc. about this condition? My husband thinks I am talking about it too much and that is causing my son to tic more, but I really don't think that is the case. The stress is really hard on all of us.

 

We are fairly new to this too. My DS was diagnosed this past October.

I emailed his teachers with the basic information about what PANDAS is and what symptoms DS shows (motor/vocal tics). I also directed them to the pandasnetwork.org website if they wanted to read more on it. They have been super supportive. I've also told his soccer coach and dentist. His close friends and parents also know; we told the parents and I think DS himself told his close friends. He told me he said "I have PANDAS" and they all had a laugh because PANDAS is a funny name for a disorder. But they have been very helpful and understanding; he has great friends.

I find that talking about his tics in front of him makes him tic a bit more at that time, but I don't really refrain from discussing it. It's a part of our lives now, we're all learning to deal with it. It is stressful, I agree; hang in there and stay strong.

[nicklemama]

I was in your shoes over 4 years ago. Sudden onset after illness, age inappropriate separation anxiety, emotional lability, tics. All hallmarks of PANDAS/PANS. Its time for you to get yourself very well versed in PANS so you know what to ask for and what appropriate treatment is. I recommend pandasnetwork.org and Beth Maloney's new book Childhood Interrupted. If you want to understand OCD, which your son probably also has and you don't recognize it, try Tamar Chansky's book Freeing Your Child From Obsessive Compulsive Disorder. It has wonder descriptions of OCD. Until I read that book, I did not understand the scope of my son's ocd, how to deal with it and how his emotional outbursts were tied to ocd.

 

As for talking to friends and others about it. I did not find talking about it made it worse. We've been completely open with our son about his illness. You will more than likely have to deal with the school. There are documents on pandasnetwork that can be printed out for the school. I would wait until you are more familiar and see how the course of his PANDAS is going to play out. I'd be open with him. He's nine. He knows something is wrong. I think talking about it is reassuring. The school and your friends are not going to understand it all, in the beginning. Just fair warning. Its really hard for people to wrap their heads around infection causing mental illness. Its hard enough as parents to accept this disorder. You have to put aside everything you thought about medicine and doctors. You are lucky the pediatrician recognized that strep can cause tics.

[ashley]

We are five weeks into this now, and it is unbelievable how all-consuming it is. We did 5 days on azithromycin, and like everyone here said it was not enough. We started to see some improvement (on the 5th day he said the "bad thoughts" were gone) but a week later the tics have increased dramatically, as have his headaches, and he is full of frenetic energy. We have a doctor's appointment this afternoon and I am terrified I won't be able to convince him to start the antibiotics back immediately. Please think good thoughts for us . . .