Now I'm Seeking Reassurance...

[ibcdbwc]

Our flares have changed from when he was younger. Please share your thoughts on this presentation:

 

A flare begins with DS12 noticing "things more closely." He starts to wonder about people in the world, where products come from. His thoughts begin to race and it's like verbal vomiting. He is seeking reassurance. He is worried about his future,our money, our water bill and our credit, how he will get money, how he will find a job, the surplus population, the workers in China, technology changing the world. His thoughts race and he has zero filter - he "needs" to verbalize them to us. He does not want to be left alone or watch television or play video games as he's worried his eyes will be damaged. His eyelids twitch and his eyes hurt. His joints hurt. He feels awful. His memory is gone. His cheeks flush and he has severe insomnia -- which is another worry "how will I ever sleep and if I don't sleep...." He has urinary incontinence issues and now food refusal too.

 

Dr. T ran more tests as this pattern started in September of 2013. Extensive tests all relatively normal. We started him on Prozac and thought it made him worse-- suicidal thoughts and rage. In December he was found to have an "impresssive sinus infection" via ENT and was treated with Suprax for three weeks with good results and remission. From September to November he'd been waxing and waning though it still was like a 0-60 wax and wane. For all of December he was symptom free with the exception of some mild anxiety.

 

January-- symptoms above are back.

 

I am questioning our path. Perhaps this is not PANS? It all seems different and chronic now despite the O-60. It's just so frequent. This verbal vomiting is so strange. I am confused and thoughts nag me- maybe this isn't PANS - maybe I am doing him more harm than good. Does he need to diagnosed as bipolar/mixed state and placed on a slew of psychiatric medications?

[Mommy2MCL]

Have you checked to see if the sinus infection has come back? Has he been tested for Myco P? If his symptoms went away on the Suprex it seems that may be your clue towards infection.

 

Good luck!

[qannie47]

I would say that as his mom, trust your gut. I completely understand your concern. When my ds was first diagnosed, I bounced back and forth regarding his Pandas diagnosis. I often wondered about what if we were wrong? What if it was something else like bi-polar, or any other mental health disorder.....For myself, I suppose it was just time and careful vigilance, and talking to a lot of different professionals....while I am more comfortable with his Pandas dx now then I was 1 year ago, my concern still lurks. I hear this from other parents with other dx's as well. Especially when it is a chronic condition, with no instant fix.

 

I think it was Rowingmom who suggests "not worrying so much about the label and focus more on treating the symptoms". That has helped me a lot. So many of our children's symptoms overlap from one disorder to another anyway.

 

At the end of the day, I can feel better that I know that I am at least doing the best I can. Maybe I will sometimes make the wrong call, but at least I am doing something. That's gotta be better then nothing.

[MaryAW]

Could there be an allergen present? Maybe something that was missing in December? Have you tried Zyrtec? At the conference, Dr. Swedo said that antihistimines can help our children. She suggested giving Benadryl at bedtime to help with sleep, 2 birds with 1 stone.

 

When my DD is flaring I have to give her Benadrly and melatonin together before bed. I even wake up and give her a 2nd dose of Benadryl after 5-6 hours to help her sleep through the night.

 

Getting my daughter's D level up has helped tremendously with sleep too. She is taking 3,000 IUs of D3 daily. Her level is now 70 ng/mL. Ideally you want them between 50 and 80 ng/mL.

 

 

[MomWithOCDSon]

After dealing with various labels and diagnoses over the years, I've come to see my son's condition as a hybrid, and perhaps that will be the same for some others, as well. It seems to me that both the research and the anecdotal evidence points to a manifested PANDAS/PANS behaviors set as a mix of trigger (infection/autoimmune) and inherent predisposition. While anxieties seem to be a thru-line, my kid manifests with almost entirely OCD, while others manifest with almost entirely tics, and others exhibit more refined and specific behaviors, such as eating disorders.

 

In our case, the worst of the behaviors were successfully addressed through medical interventions; however, some of the behavioral tendencies (perfectionism, sensitivity to abrupt changes in schedule, etc.) have remained and appear to have become almost inseparable from who my DS has grown to be at this point in his life. While I think that some of this is perhaps due to the fact that he went some 6 years without medical intervention, labeled with "regular OCD" and treated only through therapy and psych drugs prior to finally getting PANDAS help, I also think that he likely has a genetic predisposition to some of this pattern of thinking/being anyway, and the autoimmune disorder exploited and exacerbated that.

 

So, while I would definitely remain vigilant about very real medical triggers (infection, viruses, etc.), I think I'd also look for tools and techniques for helping your DS come to terms with some of those fears . . . learn to moderate his anxiety in the face of them and continue to function and move forward with his life.

[qannie47]

maryaw: when researching other sites/other syndromes that have similar symptoms, I have run across the antihistamine phenomemon. Did Swedo explain why these work? I know that they make any body sleepy, and could slow down a child who is ticking/tantruming/motoric movements, but there must be more to it. Did she say?

[ibcdbwc]

Thanks to all for these responses. You give me more than you know. I agree that the label is less important but I find it incredibly difficult to trust my gut during this time -again. When DS was younger, this was more clear cut - he had all the marks listed in Swedo's criteria. Though we never had strep titers, we could always link a flare with an infection and because he responded to motrin/antibiotics I felt sure we knew what we were dealing with. I remember questioning the diagnosis but could not deny that he responded to these things.

 

We also over the years have thought we were dealing with some sort of histamine issue and DS responded to Pepcid. H1 meds seemed to hype him up which is why we have not used Benadryl for sleep. I wonder though if with age he would respond differently. We have not tried in several years and in fact never had issues with sleep until September. He seems like an allergy kid- always has but also tested negative and his IgE was low if I remember correctly. I do plan to get him re-tested.

 

This time around just feels very different and I still cannot put my finger on things. It's so much more frequent. I toy with bipolar because these are such wide swings and so very unusual. He can still have periods of motoric hyperactivity and impulsivity as part of his "normal" personality. With the flare, he becomes anxious, depressed, perfectionistic, self critical and in a weird way he becomes a little philosopher - all within the time of one day. He is a dramatically "different kid." His thoughts ooze out seemingly non stop at first with the anxiety edge--- and the-- with the more depressed edge. He is concerned about nicks and scratches in the wood, or on my phone. He is concerned he's fat and will refuse food. He is sure he won't get into college...won't be able to understand money... the "world will not have any jobs by then anyway..." When he was younger-- it was classic OCD-- evening out-- car doors- light switches et cetera. This time around- it's just different.

 

Nancy, I agree that this is a hybrid. I remember reading your posts a few years ago. Thank you so much for sharing your journey. Did you find puberty to be particularly difficult? We have pursued CBT but DS does not seem to be able to grasp the concepts when in a flare. He also does not want to participate in any type of therapy when he's "fine" because he says "I'm not worried about a thing."

 

Oh we are myco negative but will be visiting to check sinus issues again. His CT was "clear" after 3 weeks of Suprax but certainly things can resurface. I also believe that he responds to antibiotics primarily because of the anti inflammatory properties.

[peglem]

Something else to think about- almost all medications deplete certain nutrients...you can google to find info on this. I think sometimes we see really good response from a medication, then as nutrient (especially B vitamins and folic acid) levels are slowly drained- we see symptoms return and don't make the connection because its not like an immediate side effect of the medicine, but appears down the road. I think this is particularly true of people w/ MTHFR mutations.

[MomWithOCDSon]

Unfortunately, puberty was difficult; again, I think the PANDAS and accompanying anxiety, married with the more standard "teenage angst" stuff about independence, justice, self-expression, etc. get kind of mixed up in a sort of toxic soup for a bit. During those times, we employed the strategies in Dr. Ross Greene's "The Explosive Child" to sit down, air our concerns, and come to compromises that helped DS feel he was able to exert some of his own control over the choices he made, and the consequences of those choices. And we used CBT/ERP for the fears and obsessive thinking that tend to set in around that time, too.

 

As for resistance to CBT, I see many families refer to one's inability to actively participate in therapy during a flare, as well as outright resistance by some kids to employing the techniques or doing the homework even outside a flare. While I agree that a kid in the middle of a hefty flare is probably less capable of actively participating in the therapy to the degree they might otherwise, I still think setting those tools up in the household and keeping the language and coaching intact, even during a flare, is beneficial. In our experience, the truth is that CBT, especially the effective Exposure Response Prevention (ERP) is uncomfortable, no matter who you are or what your state of physical health. And most kids do rebel against it, avoid it, and/or try to disengage from it. But with persistence, and frankly, relentlessness on the part of the families and caregivers, some of it does make it through to even the most intractable patient. And it can help them come around faster and hold "truer" as the medical issues are more fully addressed.

 

Hang in there!

[ibcdbwc]

Peglem, you are correct. 23&me is next on my list too along with repeat allergy testing. A very kind member PM'd me and reminded me to check latest labs for B12 and folate. In DS case, both are elevated quite substantially - quite far out of the reference range for B12. Ferritin runs low at the very bottom limit of the range. I found the B12 level odd at the time considering we'd only be supplementing occasionally with a multivit. Now I read that these are elevated perhaps because DS is unable to convert.

Why is it taking so long for mainstream medicine to check for these things?

[ibcdbwc]

Thank you Nancy! I need to push him this way. He's got to be an active participant or I fear a relentless brick wall regardless of trigger. I like the term toxic soup. It so perfectly describes our house right now.

Edited January 6, 2014 by ibcdbwc

[MaryAW]

I was thinking about your son. I am wondering if his "Verbal vomiting" is a compulsion. Confessing is a compulsion, maybe this is a compulsion. My daughter used to "confess" all night long until we figured this out. We needed to help her stop. If it is, you need to use strategies. Maybe let him only express his worries for a certain amount of time or only express 5 worries at a time. Then go down to less time or 3 worries at a time. Then less, etc. My DD has had weird compulsions. She goes to Dr. Chansky, who literally wrote the book on childhood OCD. She also recommends talking back to OCD sarcastically, like - "Thank you so much OCD for making me worry about all of these things. You are sooo smart. I wanted to think about football, but this is so much more fun. What would I do without you?"

 

FYI - We saw her during a bad flare last allergy season. My daughter was using her strategies, but the OCD would not stop. She said when a PANS/PANDAS child's immune system is so taxed, CBT will not work.

 

In regard to my earlier post about Dr. Swedo and antihistimines, she did not expand upon that statement. All I know is that antihistimines block the H1 receptor, the receptor that causes inflammation.

[pr40]

just on the basic q you asked about diagnosis -- what other diagnosis would fit? your dd seems to still have very classical PANS caued by infection.

[airial95]

Have you ever kept a daily log or journal with his symptoms/behaviors/triggers? We did for the first 2 years after my son's onset - and it was a lifesaver. We were able to identify patterns and pinpoint specific triggers. I also doubted the diagnosis many times, and then I would look at our journals and the correlation to strep or strep exposures was just too strong for me to deny.

 

Some things we learned about our son through the journals: He typically would take 6-8 weeks to reach 80-90% recovery from a new strep triggered flare (unfortunately - the first year he was getting strep every 6-8 weeks!) When he is exposed to strep (someone close to him with a confirmed infection) but doesn't actually GET strep himself - we see a 5-7 day flare. We're usually notified on day 3-4 of the mini flare that he has been exposed. Unfortunately he starts to flare prior to knowing he was exposed - but it has helped us track a pattern before we rush for a strep test (usually go on the 6th day). Bed wetting = + throat culture. EVERY. SINGLE. TIME. If we see bed wetting and no other symptoms yet - doesn't matter, we are straight to the ped to adjust treatment (and strep check - which is ALWAYS positive).

 

These are just a few of the things that we have learned using logs/journals. We use an excel spreadsheet with a numerical score. We could also see that with continued treatment, while he flared with each new infection, overall, the flares were actually becoming LESS intense than the previous - which is a small consolation - but still an improvement. By only changing one thing at a time and keeping logs - we had good indicators of what was having an effect. Numerical scoring helped the most - because it kept us objective.

[ibcdbwc]

Thanks so much for all the replies! I guess I am not really able to adequately detail why this feels so different.

 

Ages 7-10 fell into a pattern and through journaling and response to treatment, we were able to feel good about our plan.

Flares settled into about twice a year (after strep or viral infection) and symptoms were the same:

• OCD was need for symmetry,
• math regression,
• mental fog,
• emotional issues with rage,
• urinary control problems.
• We did have times where he flared in a more mild fashion with motoric hyperactivity. Impulsivity has always been an issue regardless of infection.
• Flares always looked the same, dramatic onset, and responded to motrin, antibiotics and sometimes pepcid for a suspected spring allergy component. It wasn't easy -- it was gut wrenching- and I had doubts then - but it was more clear I suppose.
• Age 11-- 12 we were dramatic flare free!!!

 

At age 12.5 a flare in September-- totally different though the onset was still dramatic,

• insomnia (terror in fact- panic over not being able to sleep though he desperately wants to do so),
• his thinking pattern became more stream of consciousness worrying.
• His "obsessions" were SO MANY-- it wasn't just one thing. It was this incredible "verbal vomiting" (or maybe verbal diarrhea is a better term).
• This time around he also had headache
• complains of no memory
• insanely pessimistic- like a little philosopher
• urinary accidents
• food refusal because he thinks he's fat
• won't watch tv or video games because "its' bad for eyes and mind"
• eye pain
• facial flushing
• joint pain….
• The insomnia and anxiety receded and returned -- each time worsening-- from September to November-- until we put him on Suprax.

 

So my question was why did it recede a bit prior to Suprax? It was more like cycling. Which is why we tested for coinfections (negative per Dr. T). Then the sinus infection and response to Suprax - I was relieved. But now-- everything is back-- just 5 weeks later - again.

 

So I guess I just wonder if this is more bipolar looking now and question whether or not I've been looking at this new presentation through old glasses. ITt's more frequent and different feeling. I naively thought that we would have a little more time before the next flare and its sent me into a tailspin. It kicks me the gut every time. Yes, I am journaling again and I agree that its an invaluable tool.

 

Maryraw - I had thought his verbalizing was a maybe reassuring type compulsion???? He just "needs" to verbalize every single thought…? We have started some basic restrictions on what he is allowed to discuss. If its questions regarding our finances or his future (which has been asked 100000 times), he is required to answer on his own et cetera. We are trying to re-frame and have him make lists but he is so scattered and "can't think" -- it's difficult to do. I have a call into our psychiatrist to recommend a new therapist to work with.

Edited January 6, 2014 by ibcdbwc