your thoughts

[madisonjar]

Hello all WE have a 7 year old boy who is just an amazing kid, he is a VERY sweet kid and Athletic and loves art. We are from Akron Ohio by the way. Anyways one thursday night he started getting sick with the flu, and into friday morning we are talking throwing up and everything. Through the weekend he is sick, we give him tylenol to help with temperature, Sunday night starts this confession of sins and things he has done wrong. SInce then he has had obrtusive thoughts ocd (2 weeks) and keeps telling us he likes every girl and thinks they are cute, to the point he does not want to leave the house or is scared too. I was willing to let some of it go but there has been other thoughts and meaness that it just seems like starting with the flu he was changed. Through research I have found this website and once I got a good feeling that he has Pandas (caused by Flu?) I set a appointment with Peds of Akron but its not till next week ( he has school that he has to get through) We have been giving him ib profuen for the last two days and its like he is almost back to the old child he was (he still has thoughts of girls and mean thoughts out of the blue every once in a while). so thoughts on all this? ALso Can a child once given antibiotics recover to 100% normal and never have a reoccurance of this? THis child does not have a history of strep or anything like that does that matter? also anyone in Akron Area have luck with peds of akron or are we wasting our time? Thanks

[BeeRae22]

There are many people more well-versed in this disease than I, but I've been on this board for a year now, and have done a lot of research.

 

If it were me, I'd bring your son to a Pandas/Pans doctor ASAP for evaluation. Having been though what we've been through in the past year, I wouldn't mess around. You might get lucky with your pedi, but not at all likely. Main stream medicine has proven to be pretty useless in this regard. There is a directory at the top of this site for resources.

 

The child doesn't have to have had strep.... When this is triggered by infections other than strep, it's called Pans. My daughter never had strep as far as we know.

 

Consider yourself lucky to have discovered this site so early. The sooner you treat, the more likely you will have quick recovery. Since this is an immune response it's all very individual and unique to each child.

 

Keep reading, asking questions and seek treatment. Best wishes!

[madisonjar]

Thanks for the response...is it possible to return to 100% without future flareups? and it seems the iprofuen has worked wonders, other then his thoughts that appear (I dont like mom and dad, people are stupid, etc.)

[pr40]

"is it possible to return to 100% without future flareups?"

 

perhaps. only time will tell. I would want to say unlikely since you are witnessing an autoimmune response. the fact that ibuprofen does wonders is an indication. autoimmuninity is more like a condition than like a one time thing or state.

 

by the way, how do you know this is a flu?

in your place, I would have a plan B in case exacerbation returns. i would do all blood tests etc, contact a Pandas/Pans dr, and, in general, begin educating yourself what this condition is.

[madisonjar]

just guessing on the flu as all three boys and my 8 month preg. wife got it as well.....I am scared, confused and just tired at this point, and its only been two weeks. There seems to be no Doctors in the Akron Area that handle this, there is 1 that does but she does not take insurance, adn there is a doctor in the norwalk area unless I am missing something. I am curious if there is a updated list that more people know about or another doctor in the Akron/Canton area that someone knows about, thanks all

[Mayzoo]

Here is a list of some of the well known Pandas/Pans docs in Ohio:

 

OHIO

• Dr. Cheryl Leuthaesuer
  Integrative Wellcare
  216-696-2320
  Richfield, OH

• Dr. Ali Carine
  Integrative Pediatrics
  614-459-4200
  Upper Arlington, OH

• *Dr. Allen Lewis (Leading PANDAS Physician)
  Integrative Pediatrician
  614-245-4750
  Gahanna, OH
  will treat more complicated cases involving PANDAS and Autism

• Dr. Jan Kriwinsky
  Pediatrician
  216-831-7337
  Beachwood , OH

http://pandasnetwork.org/researchandresources/find-help/usproviders/#OHIO

[BeeRae22]

I know this isn't what anyone wants to hear, but unfortunately most Pandas/Pans doctors don't take insurance Because this disease is so complicated, you need the time and attention of someone knowledgeable to treat, and insurance companies won't pay out enough time per visit required for these doctors to give the patient effective treatment. Here in CT there is a very well known Pandas doc that actually takes some insurance, but because of that he has about a 6 month waiting list, and I hear that even when you finally get an appointment, you get about 20 minutes with the actual doctor.

 

I am telling you this with empathy.... I am completely broke, and point blank can't afford my daughter's specialist, but I have no alternative. I have been paying out of pocket for a year now, and it's not getting any cheaper. You should however, be able to get most labs covered, and scripts if you have coverage for that.

[madisonjar]

I have found someone named Michele Snyder who does a support group for kids with pandas ocd here in akron..I am trying to get in touch with her now..how much do you guys think you have put into doctors cost per visit? Just curious..thanks everyone...I have read that with treatments and maturity of immune system people can grow out of this disease is that true?

[BeeRae22]

In theory, yes- they would "grow out of it" but that doesn't always seem to be the case. It's all very individual.

 

Initial visits/evaluations seem to run $1000 +/- depends on the doc. My follow up visits are between $200-$250., and we have to go every 2-3 months depending on what's going on. (Initially we went more often). We also went to CBT/ERP for many months, but I was among the lucky that got insurance to cover that. Herbals are out of pocket of course.

[madisonjar]

So let me ask this, he seems to be more mild and I have been giving him in profuen the last two days and it is helping...if we can get in asap and get treatments going (if it is pandas of course) do most kids return to their old self and control it with antibiotics to a certain age? Sorry for so many questions I just love to get info and thank everyone for their time.

[Sonshine]

This is EXACTLY how my son presented at age 9 including the nature of the ocd thoughts. The following is a link I would take to your appointment.

At the time in 2008 the standard treatment was 10 days of penicillin. Now the standard is 2 to 4 weeks.

 

https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf

 

The earlier your son receives treatment, the better. Yes, it is possible to recover 100% and return to baseline.

[madisonjar]

Also giving him ib profuen is okay to help him get as close to his old self as possible for right now

Is okay correct?

[madisonjar]

Will he get better on his own right now? Just curious about that as I have heard people say it went away after x weeks..it has been two weeks for us now...I will pursue diagnosis no matter what just curious what to expect from here...he has no physical tics just obtrusive thoughts ocd

[madisonjar]

I should say could he not will he sorry

[BeeRae22]

Since I'm not qualified, I'm not offering "medical advice", but if ibuprofen is helping I would continue it. My dd's recommended dose during a flare is 400mg 3X per day (she just turned 9 and weighs 54 pounds). This seems like a lot, but when you think about it, this is probably a typical "surgical dose". But like I said, I'm not a doctor and my child's bloodwork is also being monitored every 3 months or so because of all her abx.

 

I feel your weary desperation and fear through your posts.... I'm so sorry I've been where you are, and it's not a fun place to be. I can't speak for all of course, but I am guessing that most of us here, reading your post and description of symptoms, are feeling like we've heard this story quite a few times before, and the answers to a lot of the questions you're asking (re: returning to 100% baseline, "getting better on his own") aren't going to be the answers that you really want to hear. I'm sorry. It's not hopeless, your child can get better, and possibly even recover 100%. If you're one of the lucky ones. Accepting the possibly very long road to recovery is one of the hardest parts of this I think. As parents, when something is wrong with one of our children, we want it fixed NOW. This isn't usually one of those things that has a "quick fix" though, or even a projected amount of recovery time. I never would've thought that I would still be on this board a year later, looking for answers, researching, etc. yet here I am. I hope your journey, and your son's, is shorter.

 

With that said-- my thoughts? take him to a Pandas/Pans doctor. Don't waste time messing around with others who aren't, or worrying about insurance, or even traveling if you have to. Start recording and charting everything-- behaviors, sleep, diet, etc. (meds if you give him any)-- you think you will remember everything but you won't. These notes will be incredibly useful when you get to the Pans doc. When you have him seen, I would have him tested as extensively as possible. There are several tests I wish now that we'd done initially so that I had them for comparison. Read, research, ask questions. Write notes and questions down. Last, and probably most important though, pace yourself. Take care of yourself. Your son needs you. This may be a marathon, not a sprint you're running. If you're exhausted from researching all night, it may be that much harder to deal with in the morning.

 

God bless. I hope to help, not to draw a depressing picture.... Like I said, I've been where you are, and my heart goes out to you. This has been the hardest year of my life. Nothing hurts worse than having your child hurting keep us posted, I wish you and your family well.