Blindsided

[NMom]

I have to start this post with full disclosure - this is about me, not my son who was diagnosed with PANDAS and I'm going to whine for a bit about how unfair this all is. My son was diagnosed last summer after a sudden onset of tics and OCD symptoms following strep. No one here (in Houston) would even admit that PANDAS exists much less diagnose it so I took him to Dr. L. I did manage to convince my pediatrician to give us 3 months of antibiotics which got us through until we could see Dr. L. It all happened so fast. One day DS was fine, the next he was telling me he felt like something was wrong in his brain and four weeks later he was moving fast towards non functional. We dealt with it...just like everyone else. You push aside everything else going on in your life and you become a machine...my whole world became a series of acronyms and medical terms... Anti-DNase B, ASO, IVIG, PEX, Augmentin XR, etc., etc. Then we saw Dr. L. She told me that she had rarely seen anyone get diagnosed and treated this quickly and that with antibiotic treatment there was every reason to think he would recover fully. I thought we were blessed. And over the next few months, the antibiotics and ERP therapy worked and he became symptom free....or so I thought. Then I started to deal with the ramifications of what this all means...will it pop up again, what happens if the antibiotics stop working, etc., etc. Since the day this started (May 16, 2010), I feel like I've been standing at the edge of a cliff and one word from DS, one odd behavior, one abnormal reaction and it's like I've been kicked off the edge. So here we are today...two days ago he told me that he was feeling the OCD again. He also told me at different times that 1) it never went away or 2)that it went away and now is coming back...regardless of whether it was ever compeletly gone...it's back now and he has been saying for months that he didn't feel it at all. He's now telling me that he was lying sometimes because he is fighting back and can handle it. He's seven.

 

I know that this is nothing compared to what so many of you are going through and I hate myself for being so weak and scared when my kid is fully functional. But I don't know how tall this cliff is and if we're going to get to the bottom again and I'm scared. I've been crying for the past two days and even though I know the steps to take (upped his antibiotic, treating with motrin and let his teacher know to watch for anything out of the ordinary), I'm just flat out scared of what I know can happen. I have no reason for writing this other than that I know someone on this forum will understand the feeling and just maybe there is one other person out there who has a story of recovery that they can share....something for me to hold on to.

[peglem]

Okay, deep breath.

I know and understand and have lived that sick feeling of "here we go again." So sorry.

Try to focus on the fact that your child is able to identify onset and can give you a heads up before it gets too bad. And you DO know what to do! Prayers for a speedy resolution! You'll get him back!

[NMom]

Okay, deep breath.

I know and understand and have lived that sick feeling of "here we go again." So sorry.

Try to focus on the fact that your child is able to identify onset and can give you a heads up before it gets too bad. And you DO know what to do! Prayers for a speedy resolution! You'll get him back!

 

Thank you. I read your posts and I know that you have dealt with so much more than I have. I have prayed for you and your daughter and I appreciate your words of support.

[PhillyPA]

Call or e-mail Latimer's office. She usually does one month of tapered steroids. Did she do this for your son? The tapered steroids did the trick for my son. E-mail her quickly and let her know what is going on. Ask her about the steroid taper.

 

My DS6 pandas was caught within a month in July, 2010. She put him on antibiotics and a month steroid taper.

[dcmom]

Nmom-

 

it is so hard.

 

I have 2 girls with pandas, same story as your son- totally normal, overnight onset, snowballing symptoms, non functional within a few weeks. ( this happened at different times within 1.5 years). Both had pex- full remission.

 

Both have had bumps in the road (short term, flare ups of mood issues and mild OCD). Both are now fighting their way back from full relapse (did IV steroids, maybe at 75%).

 

As for me- I am working on accepting the reality that my kids have an autoimmune disorder that is relapsing/ remitting in nature. It is not easy- I have been, at times, overwhelmed by grief and fear. But, we try to as a family - structure our life in a healthy way: support from family, not overscheduling, and most importantly, trying to find joy in every day. I also work on building a relationship with my kids, where they learn to trust and confide in me. I learn as much as I can about pandas, and I try to teach them as well.

 

Your son got well once before- he will again. It is time for action, you can crumble later . I would call or email Dr L (be persistent).

 

Do you know what has triggered these symptoms? Illness, strep exposure, loose teeth?

 

 

 

 

 

 

What I can say is- I am a total work in progress- but I am working on accepting the illness.

[thereishope]

At 7 there is a chance he doesn't fully understand what OCD is, what the feelings would be like if it crept back, etc. For some kids, once they get better they forget. I, too have a 7 year old and even though I have tried to explain what OCD is and would feel like. Mind you, my son's OCD was bad, yet I have to now sit and attempt to expalin what it would be like. I don't think he fully grasps it. I can tell by some of the things my 7 year old has said.

Edited March 8, 2011 by Vickie

[NMom]

Call or e-mail Latimer's office. She usually does one month of tapered steroids. Did she do this for your son? The tapered steroids did the trick for my son. E-mail her quickly and let her know what is going on. Ask her about the steroid taper.

 

My DS6 pandas was caught within a month in July, 2010. She put him on antibiotics and a month steroid taper.

 

 

How is your son doing? Dr. L did not initially give me a RX for steroids but I traveled back to DC a second time and asked for a prscription just in case. I haven't used it yet and am not sure if I should now or wait to see if this is progressing. I'm tracking how much I see the OCD and my son is doing an 'experiment' where he logs how much he feels the OCD daily so we can see quickly where this is headed. I'm curious why Dr. L would suggest steroids for your son initially but not mine. Have you had any exacerbations since the initial diagnosis?

[NMom]

DCMom -

 

I'm fairly certain this has been brought on by multiple exposures to strep at school. It's been everywhere the last few weeks. I'm not really even surprised...just sad. I'm curious about why and when you chose to do pex? Do you know what brought on the full relapse? I keep thinking we can't have a full relapse now that he's on antibiotics but maybe that's just wishful thinking.

Edited March 8, 2011 by NMom

[Kiera]

Hi NMOM, my ds 8 was diagnosed last summer, like yours. He recovered to about 100% over several months with an initial 5 day steroid course and then antibiotics. However, just this past week he's started with a little of the old symptoms, two kids in his class have recently had strep (one sat next to him) and now he has a runny nose and cough. We're going to his PANDAS Dr tomorrow! So in a nutshell, this is how PANDAS goes. Just like in Saving Sammy, even now, when he gets strep, he gets OCD, NOT a sore throat! So just take heart that you now know this and can plan accordingly as opposed to countless other people out there who have no clue about PANDAS and who's kids deteriorate into total dysfunction and end up being drugged up on anti-psychotics, etc. You are way ahead of the game, so pat yourself on the back for your persistence so far and life will get easier as PANDAS gains more recognition. This is just a bleep in the radar, but I totally understand that sinking feeling in your tummy upon appearance of symptoms again, I had it last week! But we must soldier on, you can do it!

[PhillyPA]

My son is doing great! I do not know why Dr. L did not go for the steroids for your son immediately. But you have to send her an e-mail and check the steroid dosage if your son's weight has changed since the script was given to you. I felt that the steroids were really the miracle drug for him. He got the augmentin too but I think it was the steroids that brought him out of it. He does get mild pandas behaviors after illnesses but they don't last long and he does come back to baseline.

 

My son was spitting out all of his food because he felt like he was choking. He also got abrubt on-set OCD. It all followed a strep throat infection. He had strep about 10 times between the ages of 2.5-5 years old. My other DS8 also has pandas that he got at age 5 and progressed into a nightmare so Dr. L was clear about what we were dealing with and wasn't taking any chances.

[T_Mom]

Hi NMom--You are not alone.

I have felt the same...and can tell you that it is a one-day-at-a-time and "celebrate the healthy days" routine in our house. Yes, it is worrisome that it may reappear, BUT then you will face it again (if you must--) and do the next thing that you know to do, pray, treat, call doctors again, arrange the best you can to do the next steps.

 

Dr L has prescribed steroid bursts for our girls at different times, there is not necessarily a set protocol with this illness. Instead we treat and then watch and see the reaction -- then try the next thing. I would email or call Dr L and see what she advises at this point. It may be a passing blip, requiring rest and healing, it may be more--either way you will do the next thing, don't worry, one day at a time-- Living that reality myself right now, hugs--

[kimballot]

I just want to give you a big ((hug)) and tell you that you are not alone. My son has had PANDAS for most of his life. When the symptoms are gone, he can barely remember what they were like... he looks at me funny when I ask about them. When the symptoms are back it is like they never left. He says "Mom... I've always had to do things an even number of times, I just didn't tell you"... I know that is not true. I think when the symptoms are there he cannot remember NOT having them - like seeing an old friend for the first time in years - you can't remember what you did when they weren't there.

 

I agree with others who have posted that our children have an ongoing chronic illness. Our job is to help them to manage it so they can be as functional as possible.

[NMom]

My son is doing great! I do not know why Dr. L did not go for the steroids for your son immediately. But you have to send her an e-mail and check the steroid dosage if your son's weight has changed since the script was given to you. I felt that the steroids were really the miracle drug for him. He got the augmentin too but I think it was the steroids that brought him out of it. He does get mild pandas behaviors after illnesses but they don't last long and he does come back to baseline.

 

My son was spitting out all of his food because he felt like he was choking. He also got abrubt on-set OCD. It all followed a strep throat infection. He had strep about 10 times between the ages of 2.5-5 years old. My other DS8 also has pandas that he got at age 5 and progressed into a nightmare so Dr. L was clear about what we were dealing with and wasn't taking any chances.

 

 

Your story sounds very similar to mine. My son had abrupt on-set tics and OCD following a strep infection. He too had strep too many times to count as a baby and toddler. I have emailed Dr. L. but I don't usually get any response. I like seeing her in person a lot and we will go back but I find it almost impossible to get to her at times like this when we really need her advice. I have called and emailed her office, cried to her assistant and begged for them to understand. This was mostly last summer after she failed to show up for a pre-arranged conference with our local pediatrician. I was told by her office manager that I needed to know that they were implementing new rules for PANDAS parents because they could not continue to deal with people like me calling and emailing so much. Not sure what to say to that! I so wish we had someone in Houston that believed and would treat this.

[NMom]

I just want to give you a big ((hug)) and tell you that you are not alone. My son has had PANDAS for most of his life. When the symptoms are gone, he can barely remember what they were like... he looks at me funny when I ask about them. When the symptoms are back it is like they never left. He says "Mom... I've always had to do things an even number of times, I just didn't tell you"... I know that is not true. I think when the symptoms are there he cannot remember NOT having them - like seeing an old friend for the first time in years - you can't remember what you did when they weren't there.

 

I agree with others who have posted that our children have an ongoing chronic illness. Our job is to help them to manage it so they can be as functional as possible.

 

I find that so interesting that your son tells you he's always had to do things an even number of times. I've heard that as well but for most of this past fall he would act like I was nuts for asking if he was touching something evenly or jumping over a crack (big OCD symptom for him). Maybe it is like a dream for them and at age six/seven...they already have a very fluid sense of time. Thank you for the insight.

[dcmom]

Dr L had a major personal tradgedy early last summer.

 

My kids have had minor bumps when exposed to strep, that foe the most part go away a few days after exposure is removed.

 

I would agree to wait on the steroids- we have seen a pattern; with a bump in the road, we see symptoms crop up and plateau pretty quickly. With a relapse, we see either all symptoms back overnight, or a drastic worsening day by day. See what you think is going on over the next few days.

 

Is it a month long Rx- we have found that to be the only thing with sticking power....