increasingly concerned about non-pans son

[smartyjones]

i don't think you are out of your mind -- I think you are aware of something -- something most people, even family members, are not aware of.

 

many years ago, I was at a group of about 4-6 pandas moms. we were discussing our pandas child. we met again about 3 months later - we were all discussing how another child was now showing symptoms -- each of us! it was really bizarre.

 

I remember my 2nd son, who is the older, having trouble at night -- something like night terrors as he was going to sleep. (it's funny how you actually do forget some things!) I said to dh , "are we just going to wait until he falls apart to take him in?" well, apparently we were, because some weeks later there was no doubt we needed to have him evaluated for pandas.

 

the thing is - I even think now, if it had been him first, he could have flown under the radar as troublesome and many people could have had many explanations about his behavior. my 1st son is classic, no doubt pandas; the second is diagnosed - but not the slam dunk case of the first. 2nd has clear infection related anxiety and OCD behaviors. but he also has subtle anxiety and OCD behaviors, with a huge step up with infection. it is something that impedes his success, but not so much that it impedes his life, like the classic son. so, if I did not know what I know because of the 1st son, would the 2nd son be diagnosed? maybe, maybe not. whereas the 1st would certainly have.

[smartyjones]

Additionally, you mention , "he is not sick." my classic son does not show medical signs of strep. when he was first diagnosed, it was because a behavioral therapist suggested it. I brought him in for tested based on behavior only. his titers were 898 and he had active strep.

 

just last winter, I brought him in to be tested on behavior -- an OCD incident at school, various OCD comments about fast food, an extreme anxiety reaction at school -- the doc was not our normal treating doc, the nurse took the rapid swap, I had given a paper listing the reasons why I wanted the swap -- not one of them medical. the doc walked into the room with huge eyes and said, "that rapid is positive!" with utter amazement.

 

the 2nd son shows both medical and behavior signs. I also took him in last year for slight medical sinus, not what I would take to dr for, but more severe behavior. they diagnosed a sinus infection.

[dcmom]

agree with Smarty- we have had similar experience.

 

Most literature on this, and our doc, agree that while first episode is triggered by strep (for PANDAS specifically), it then is turned into an autoimmune disorder, episodes can then be triggered by many different things, some of which we will never know.

 

My oldest daughter, second to be diagnosed, was definitely initially triggered by strep (same time as sister), but her issues were really mild, and she dealt with and hid them well. But she definitely was changed. We chalked it up to preteen behavior and stress due to what was going on with sister, and possibly stomach issues. She later had a much more drastic episode, and well, there was no denying that one. But if it wasn't for her sister, we would never have made the strep connection which led us to PANDAS.

[BeeRae22]

Son now has full-on coughing tic, and worries about people eating/chewing with mouths open and hearing chewing escalating. Has taken to eating away from his sister, and coughs and gags when he is thinking about it. Not eating any lunch at school, small snacks at snack time only. Worries at home about it too.

 

Also, he had a fever for the past 4 days (finally stopped last night). I took him to his ped a few days ago (day 2 fever) which of course was a waste of time..... They did a rapid strep (I don't think they even swabbed the back of his throat) and it was negative, and they sent us on our way. Daughter never had strep anyway, so I'm not too revved up about getting it done I guess. She had mycoplasma pneumonia.

 

We have an appt on the 12th. $1,000 initial consult that I truly can't afford.

[LettySC]

I have not posted here at all, but have been reading a lot. My DS (16) was formally diagnosed in May after about a year of decline. He is triggered mostly by mycoplasma pneumoniae. He did have severe OCD, anxiety and a bunch of other things, including tics. About 2 months ago 3 of the 4 of us, (me and my two sons) got some kind of virus. We were all sick, but my youngest and I were the worst. 16 year old has been fairly stable with his PANS stuff (on prozac, antibiotics, probiotics and aleve) and the virus caused a mild flare that he quickly recovered from.

My youngest started having anxiety (general). We got him tested for strep and it was negative. Then we noticed he wasn't eating his lunch. He does not eat gluten as dad his gluten-intolerant and older brother's PANS is much better when he does not eat gluten (Oldest ate a pizza last night for a Halloween party and we are all paying the price right now--OCD and ticking and anxiety. He will be ok my morning I am guessing.)

So back to youngest son (12). He has been generally anxious, but not classically OCD. Major migraines since he was 4. Now He is not eating at school, no matter what I send with him. He craves sugar like no one's business, so I have tried to restrict that. Then we got called in for a big teacher/principal meeting due to behavioral things. (Anger, anxiety, crying, inability to focus--sound familiar?) That was a big sign for us. We told them about PANS and they are working with us. The school has actually been great. We got our youngest into see our oldest's doctor and we are on our second course of antibiotics. Beginning blood tests and trying to see if we can get into the PANS clinic at Stanford. (Our family autoimmune history lights up like a Xmas tree, so we are hoping to find some underlying something that might get treated).

 

So, the point of all of this is that I am in the same exact situation as you, except that my kids are a bit older. The food thing is making me crazy, because not eating is making everything worse, but I cannot get him to eat while he is at school. He has not said anything about sensory stuff (like chewing), but I am going to try and gently talk with him tonight.

 

This is . I cannot believe that I am going to have to watch my second child go through this. AS my husband says, unless you have lived this 24/7 you would not believe it. Even when I try to explain it to non-PANS parents I know that as much as they try to understand, they really, really can't.

 

I am sending you hopeful thoughts. Please stay in touch since we seem to be going down the same path at almost the same time. Your seconds will get better. We just need to find more strength, more patience and more energy. But we are moms, so I know we can do it.

 

[Mom23boys]

beerae22 - just FYI. Just because you are paying out of pocket for the visit does not mean you cannot file the visit with your insurance company. Many of these pandas docs don't file for you but you can file the itemized invoice with the diagnosis and cpt codes yourself with your insurance company for reimbursement. We did this the first time with Dr. Latimer. We weren't reimbursed because we had not made our deductible (which we made later in the year due to two tonsillectomies!), but we did file her bills and almost all of her charge (minus like 15 dollars) was credited towards our deductible. We have since met our deductible and just filed the itemized statements for reimbursement for our followup visits. Based on the CPT codes, I expect to get at least half back, maybe more.

[BeeRae22]

So the good news is that ds seems to be doing a bit better than before.... At least things aren't escalating at the moment. Fever cleared, seems healthy and not gagging and coughing as much. Even sat at the table to eat with no problems tonight, and ate breakfast with his sister this morning.

 

Here's the downside though- although because of what I know, I can see that he was getting some kind of infection (myco p maybe?) and he suddenly had issues, and now that he's on the mend its getting better... He also doesnt appear to be having any other symptoms. What scares me is that when this started with my daughter, it was primarily with eating at first, food getting "stuck in her throat", etc. and then a few weeks later she was a complete mess- but it really was a few weeks later, she didnt present all at once. But here's the problem--- I REALLY can't afford the $1,000 consult right now. I'm not just crying poor here, I honestly can't afford it. I have state insurance and tried to find a way to get things covered before and finally gave up because I wasn't getting anywhere. I know if ds spirals and declines I'm going to really regret not testing right now, but I'm also still praying that this was just a blip on the screen for him and that he'll continue to improve. I also think that his father is going to tell me "he's fine" (he's in his peaceful place of denial) and tell me that he's not going to help me pay for the visit, and that I'm "overreacting". I don't know what to do- I have 7-8 days to decide.... I wish I could just get some blood work done to see if there's infection first before I "enroll him" as a patient. If his bloodwork is clear, I'm going to regret taking him in right now. Any suggestions?

[mama2alex]

Is $1,000 the cost of the appointment only, or does it include the lab work? Because $1,000 sounds awfully steep for an office visit, even the initial appointment, and we live in the SF Bay Area (one of the highest cost-of-living areas in the US). I think we paid about half that for our initial appointment. Just wondering if there's a way to see someone else who charges less.

[BeeRae22]

Well, I'm here in Connecticut, and we are definitely in the running for being one of the highest cost of living areas as well. The $1,000 doesn't include lab work, but the insurance does cover that..... The other Pans/Pandas specialists in CT are equally as expensive and I don't know of anyone else that will treat. I may try to seek out someone else though.

 

DS seems to be doing better each day eating at the table, eating breakfast with his sister again- not running away. Still has coughing tic, but not as prevalent.

 

Of course the BIG question is.... what happens when he gets sick again?????

 

I still don't know what to do. This was clearly an exacerbation, no denying that. Will it be the only one???

[LettySC]

I am really glad to hear that your DS is doing better. Mine youngest is feeling much better too. He has had fewer anxiety issues, but a bit more fatigue. He only has about 4 more days of antibiotics so we shall see. I know exactly what you mean about what happens when they get sick again. Just got my oldest a flu shot and I literally feel like I am gambling. Will the shot make him flare? If he gets the flu, will that be worse? Considering how many times we all have had pneumonia, I just can't risk flu (I still think the H1N1 that we all had in 2009 was the start of all of this). And now that my youngest is sort of back on track, I am wondering if I should pursue more testing or not. PANS parents just walk around on eggshells during flares and then we hold our breath when our kids are relatively healthy.

I really hope you kids keep improving. I am so sorry to hear about how hard it is to get access to knowledgeable doctors.

[BeeRae22]

Now I'm wondering..... "Garden variety OCD" or PANS? Definite OCD symptoms now- difficulty with others (or thoughts of others) chewing (still sitting alone in cafeteria, but says he's eating "a little") unnecessary confessing, worrying about going to intermediate school next AUGUST (crying about it at night), high anxiety and sensitivity....

And...... no other symptoms???? Not sure what to make of it, but I don't like the direction he's heading in. I keep wondering if he could be made better if treated- but with no other symptoms its hard to justify going down the "medical road".

[BeeRae22]

My bigger question is..... Is there such thing as "garden variety OCD"?