An Unexpected Turn of Events

[Minnesota Mom]

My heart breaks reading this. It brings me right back to where we were 4 months ago. We too made that same trip to the ER without any relief other than this is anxiety and we need to get him into counseling. Clearly not anxiety. Psychiatric symptoms do not come on overnight. I am so glad you found this forum, it will be your best tool to keep you moving in the right direction. I agree you are probably going to have to seek medical help outside your state if you don't find someone locally that understands PANDAS. I found that the doctors in my area wanted to treat the symptoms and not address what caused the symptoms. Also, you will need to have confidence in your doctor because this is devastating for us as parents when we lose our child to these obsessions. So finding that person who can educate you and help you through this is vital. We happen to enroll in the PANDAS research study through the National Institue of Health and they were the most helpful even at the beginning before we even made the decision to follow this path. I would recommend calling the research assistant, if anything they will guide you to the right help. The National Institute of Health, is where the top doctors researching and treating PANDAS are located. The study is researching the effects of IVIG (immuniglobin) on kids with PANDAS in the early onset. If you would like more information I can get you that. Otherwise, go to http://intramural.nimh.nih.gov/pdn/web.htm. Hang in there!

[P_Mom]

Eclairuse...

 

I am also going to be blunt. (it is what you need right now and TRUST me when I say to listen to the advice of the PANDAS parents) Do WHATEVER it takes to get your son on antibiotics, full strength, for as long as possible RIGHT NOW! Preferrably Keflex or Augmentin. I don't care what the docs say, (you are going to get the run around while wasting precious time) GO to a minute clinic and tell them your sons ears hurt or something....and if they see nothing...tell them you would feel better if he were given an antibiotic anyway "just in case." It is what I had to do for one of my sons in the beginning and it literally saved him from developing a more severe PANDAS case. (my older son) My younger son presented much like your son. It was nothing short of terrifying.

 

Do it.....do it today! Quick treatment often brings about dramatic (overnight) improvement and the best chance at getting through PANDAS without stronger treatments. If all you can get is ten days...well, then get ten days worth. Advil can help now, too.

 

This is the step you need to take right now.....the rest will come.

 

By the way...they do get better with PROPER treatment...especially rapid treatment. Both my boys, 5 years later.....are doing absolutely great! No psychiatrist, or psychologist, ever involved. Just antibiotics, quickly and prophylactically..as well as two steroid bursts for younger son.

 

I can't stress it enough to get the abs now!

 

You know what just occured to me.....I know a doc who is really good in times like these when you need help. You can call him and tell him you are new onset and in middle of crisis and need his help ASAP. So, if I were you, I would call him today and make sure if you get his voice mail you make it clear that your child is in episode. I will pm you his number. He is great for initial onset...gets things done quickly.....may need to seek out a different PANDAS doc later....maybe....you'll decide.

Edited September 23, 2011 by P.Mom

[PowPow]

Just wanted to chime in- to reinforce the "no Strep- no PANDAS" issue. I was convinced (myself, and by several well-meaning doctors) that my daughter did NOT have PANDAS due to normal ASO and neg throat. A year later, a second daughter had strep and then changed a few weeks later.

My first daughter (negative strep) was an onset just like your son's. I shudder to read it.

Without the strep positivity that my second daughter had, my first daughter's time for onset to treatment was too long.

I would encourage to not waste the time and money we did on many other doctors and go straight to a PANDAS doc.

My second child has had plasmapheresis and then IVIG and is doing amazing. I cannot even believe that she is recovered (or remitting- but who cares-- we live in the now!)

The first one is still suffering, but we are certain that since she went much longer without proper treatment- it is going to take longer.

Besides, even the term PANDAS, is going by the wayside- to reflect the multiple possible infectious triggers to the acute onset psychiatric symptoms to this AUTOIMMUNE process.

Like everyone else here, I am sure, feel free to PM me.

Prayers and understanding here...

[Megs_Mom]

Hi - I know you are new to the forum, and don't know if you know how to check your PM's. I sent you a doc reference who is willing to consult with your pediatrician to try to get antibiotics more quickly. If you don't know how to check your private messages (pm), please ask here. Good luck - I agree with everyone else, fight like crazy to get antibiotics. Your son's case is classic - and early treatment is so much better. It took us years to find help.

[michiganpandas]

Hi....just quick...but, don't go to any infectious disease doctor at beaumont....very ignorant about pandas and gave my daughter a pet scan that they don't even know how to interpret....waste of time....go to the doctors mentioned above.....great that you found this all out right away.

[Doug]

Also tell your Doc that PANDAS has just got into the journal of Pediatrics

for info on it.

[KaraM]

Just want to echo EVERYTHING everyone else is saying. Do NOT accept a negative PANDAS/PITAND/PANS diagnosis so quickly.

 

Did your doctor read the Sudden Onset article that was mentioned above? I don't know how s/he could ignore the possibility after that. This was an article compiled by one of the most reputable profesionals in the OCD world.

 

There is also a post from the director of the National Institute of Mental Health that your doctor should be made aware of...

 

http://www.nimh.nih.gov/about/director/index-ocd.shtml

 

I may be going out on a limb, but I think any doctor to brush and of the P's so quickly off in light of such sudden, uncharacteristic onset, is either ignorant, negligent or both.

 

If I were in your shoes, I would really push my doctor for a trial of antibiotics (augmentin or zithromax). Really, what harm would it do? It's certainly not going to cause any public health issue (I.e. antibiotic resiIstant infection). If your doctor doesnt give it, find a new pediatrician a.s.a.p that will. Go for a second opinion somewhere. Also make an appointment with one of the PANDAS docs and get in a.s.a.p. as well.

 

Also, and I don't think I saw anyone mention this, but start keeping a journal and/or chart of behaviors. If you rank your days (or, even different symptoms within days), you will be better able to see, and show a doctor, if there is any change (good or bad) after starting treatment. I can send you sample of the chart I kept for my daughter as well as one that someone else put together. PM or me with your email address if you want it.

 

Kara

 

 

 

Also tell your Doc that PANDAS has just got into the journal of Pediatrics

for info on it.

[butterflymom]

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Edited October 5, 2015 by tampicc

[butterflymom]

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Edited October 5, 2015 by tampicc

[MomWithOCDSon]

Another big "DITTO!" here for not taking "no" for an answer!

 

Also might suggest that many families in areas in which PANDAS-accepting doctors are not readily available have found assistance through DAN! (Defeat Autism Now!) doctors in their area. So that could be another avenue if P.Mom's or the other suggestions don't work out.

 

As unethical as it may sound on one level, I also like the ingenuous suggestion of heading to a "doc-in-the-box" and claiming an earache or something along those lines. It might at least score a short-term prescription that could tide you over and get things under better control until you have access to a longer-term solution. But from the way you describe your son's behaviors, I'm thinking he may not play along with a "pretend" ailment? Mine wouldn't . . . either then or now, due to some hanger-on "scrupulosity" OCD. You might have to claim the health concern is actually yours, rather than your son's.

[hugs2day]

You can get a list of doctors currently treating pandas from the yale university contact that is enrolling for the Yale-NIH clinical trials. Follow the link off the website pandasnetwork.org

 

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

 

She will email you a spreadsheet and it lists doctors that will take phone consults, and those that won't, etc, sorted by state. This was a big help for us, because my son was homebound and could not leave the house.

 

I'm new to this forum but if you can email me I will send you what I was given.

[beeskneesmommy]

I hate to be the bearer of bad news but you are going to have a hard time finding help w/ the locals here in MI. Wish I could have better news. Most of us here have been from dr to dr. No help. Call a PANDAS expert. Dr K in Chicago and Dr T in New Jersey do phone consults. Dr B in CT is an immunologist. He doesn't do phone consults. Don't know if Dr L is taking on new patients at the moment.

 

Please understand, strep confirmation is NOT necessary for a PANDAS diagnosis. My son has never had a confirmed case of strep. He was never tested in a timely manner when he presented w/ pharangitis symptoms. He has never had anything but normal strep titers, either. He has been diagnosed as having PANDAS by Dr K and Dr T.

 

Don't give up and don't let a pediatrician who knows little about PANDAS deter you.

Dr. B in CT DOES do phone consults, we have them every 4 weeks. It may be that he needs to meet the patient in person for an initial visit, as we had last july. However, all other contact has been by phone. He is an excellent doctor and has helped our son with a dramatic improvement and thorough testing that bore illuminating results.

Edited September 24, 2011 by Beeskneesmommy

[beeskneesmommy]

Eclairuse: so sorry about your son's acute onset! The good news is that you have caught it early. However, you must act NOW. There is a very small percentage of kids who fully recover without future exacerbations by being medicated with antibiotics alone. ALL of these lucky kids have started antibiotics very quickly after their 1st acute onset. The longer you wait to start antibiotics, the smaller your window of time becomes. I do not want to alarm you further, rather, make it clear how important it is to move quickly. Make appointments with a couple of PANDAS specialists immediately. These docs are flooded and are far and few between, so they often have a 2 month+ wait for the first contact. You can always cancel these appointments if they are not needed. Pediatricians have generally been of little help to us. However, if you can convince one to give your son Augmentin in a daily therapeutic dose, you will at least get him started. This is what I did prior to getting in with my son's PANDAS specialist so we gad the ball rolling by the time we landed in Philadelphia (I am in NC). There are other causes of PANDAS as well. My son had an exacerbation after walking pneumonia. This can be caused by Mycoplasma. This is an opportunistic bacteria that often "jumps in" during a sinus infection or what looks like a bad cold. Also, Lyme tick, Bartonella (cat scratch fever which can also be transmitted by tick bite) and Bebesia (tick). Below is the only referral that I have in Minnesota, but may be a good place to start. Perhaps she can refer to to others in the area:

 

Constance McLeod

2915 S. Wayzata Boulevard

Minneapolis, MN 55405

(612) 834-0424

 

In addition, here is the link to Dr. Kovocevic in Ill. He has a good write up and list solid criteria for PANDAS on the Site:

 

http://webpediatrics.com/pandas.html

 

We travel to Philly and to CT for assistance with our son. Most people need to travel for good help, but it is worth it! We are currently seeing Dr. Dennis Bouboulis in CT. He is brilliant and makes sure to dig deeper for underlying infections with the appropriate tests. We traveled initially to have a consult and he started a course of antibiotics immediately. The results have been excellent so far. Our contact since then has been by phone every 4 weeks, but he calls in prescription refills to our pharmacy here in NC. His Site is:

 

http://advanced-allergy.com/

 

here are 2 other valuable Sites that can help you with further information:

 

http://pandasnetwork.org/

 

http://www.pandasresourcenetwork.org/

 

Also, get the book Saving Sammy by Beth Maloney - it is an informative account of her son who also had sudden onset. She has become a champion for PANDAS families and it is she who helped us get hooked up with our PANDAS specialist very quickly after my son's acute onset.

 

Please feel free to email me through the Latitudes Site. Warm wishes to you and your son. -Kath

Edited September 24, 2011 by Beeskneesmommy

[eclairuse]

Hi everyone.

 

Thank you, again, for all of the responses. I've been reading, researching, and making calls. And, I didn't want you all to think that your advice, wisdom, and even good wishes were falling on deaf ears. No, I've read every post & PM in great detail, and I sincerely appreciate every, single one.

 

So, here's where we are:

 

1) As tempting as the proposition is, especially when feeling this desperate, I'm not going to lie to get antibiotics. My rationale for this is that I need to remain credible in this sea of "disbelief". Even though I am *rapidly* losing faith in physicians, I don't want their faith in my honesty and forthrightness to fail. That might hurt my son, even more. I can't risk it. That, and my son is nine years old. He has no other problems, and his ears work just fine. Before I could even suggest an imaginary illness, he'd be shouting, "Mom! That's not the truth!" And then, with our luck, he'd develop a new verbal tick a la, "Mom is lying. Mom is lying. Mom is lying. Mom is lying." I will do absolutely ANYTHING to secure the health and well-being of my son, but I truly see how lying to get the antibiotics might seriously backfire, and hurt his chances for treatment. Please don't think that I don't value the sentiment (oh, how I wanted to), or appreciate the suggestions. I'm just trying to calculate and measure the potential outcomes, given the circumstances.

 

2) I received some PMs about PANDAS physicians, and I'm going to contact them first thing on Monday. Oh, how I wish I'd seen those emails earlier yesterday (I saw them late in the evening)! Now, we have the weekend (that's seeming longer & longer) to stew on this. I'm looking forward to Monday!

 

3) After reading tons, and tons of your personal accounts of this condition, I think I've come up with at least a temporary plan that might (I really hope) at least provide relief from his symptoms. Steroids, which I have on hand, and Motrin. The steroids are my son's for asthma. He has two different kinds. In my despair about his Pediatrician's refusal to provide antibiotics, it suddenly dawned on me, last night, that my son still had refills on two steroid asthma medications. He'd stopped taking the medication at the beginning of summer, because his asthma (cough-variant asthma) disappears in the summer. I just got the prescriptions filled this morning, and I'll start him on them this evening (so we can make certain he's taking it at the same time, every day). I don't know if it'll be strong enough, but it's worth a try. I'm also going to start him on 200mg of Motrin, beginning this evening as well.

 

4) I contacted a local neurologist and made an appointment. Because someone already suggested that I steer clear of the Beaumont immunologists (my son has Beaumont doctors, and we live closest to Beaumont... just my luck!), I didn't want to just wait and do nothing, as his pediatrician seems to think is appropriate. <-- Probably not a very nice, or charitable comment, but my frustration is bubbling over. The appointment with the neurologist is on Wednesday. I'm more than a little hopeful, because they bent over backwards to get him in sooner when I described his symptoms and sudden onset. Maybe they'll recognize what's going on, and DO something. I'm going to take every article that you've all suggested with me. And, I hope to have consulted with one of the PANDAS doctors by then, AND he'll have had his first counseling session. If all of that is not enough to DO something here, locally, and QUICKLY (and by "quickly" I mean treatment started on Wednesday), then I have a back-up plan. I'll take him to the University of Michigan Medical Center, through the ER (if need be), medical records & suggestions/directions from PANDAS doctgors in hand. One of the articles that I read last night was written by a U of M researcher in 2010.

 

5) One other reason (aside from the need to administer the steroid by nebulizer at the same time, daily) that I'm waiting for this evening to start the steroids and Motrin is that my son's tics suddenly disappeared. As of yesterday evening, all of the tics are gone. Some of his obsessions & the associated compulsions are gone too. The worst OCD symptoms are, unfortunately, still present (he still terrified that normal actions are murdering/harming people, and then there's the "lumps", contamination, separation anxiety, etc..). I want to be able to accurately document where he is when I start giving him medication. This, so I can accurately document the results.

 

I don't know what the disappearing of the tics means, if anything. I do know that I've noted other "symptoms" that, while I'd noticed prior to his sudden onset of OCD, I thought odd, but didn't associate with any medical event. For example, the day before his explosion of OCD, I noted that his handwriting had changed significantly for the worse. It was so bad that I had him rewrite a homework assignment several times (never getting any better), and then finally commented that he was going to get marked down for "bad penmanship". He kept telling me that he "did his best"-- he's an "A" student (with little effort). I just chalked it up as a fit of laziness, and moved on. Everything that he's written since is in these very long and heavy strokes of really bad (and really different from what's normal) handwriting. Fortunately, I can take the assignment, and the previous days assignments as evidence of this deterioration. It's profoundly different. I've realized, just yesterday, that he can't do simple multiplication tables without great difficulty. Yes, he's only nine, but his math skills are advanced. This isn't Mommy bragging, this is fact. He's been doing multiplication since the first grade. He does algebra & geometry NOW. Suddenly, he's struggling with multiplication. He wasn't a few days ago. Discovering this was quite a shock, and I recalled, in one or more of the articles, that kids sometime, temporarily, lost math skills.

 

There are two medical things of note as well. The first is that he had some strange rash on his face and in his ears, after the resolution of his cold, and before the onset of the OCD. When I'd looked it up on the internet (WebMD), I presumed it was eczema, possibly as a result of having had a cold. It went across the bridge of his nose, and on both cheeks, then curled around to the insides of his ears. There's still some evidence of it in his ears. The other thing is that, as of this morning, I can see the beginnings of "Beau's lines" on all of his toe nails. I recalled asking, after he had Kawasaki's Disease, what was wrong with his nails (toenails & finger nails), and it was explained to me that during serious infections, the growth is interrupted, and is evidenced by beau's lines. They're very deep grooves (almost giving the appearance of a gap in the nail) that run horizontally, end-to-end, across the nail. Clearly it's something recent, because the grooves are still very near the cuticle. So, there's something-- physical evidence that should be indicative to ANY doctor that there at least WAS some infectious process going on, very recently.

[LNN]

It's been a long time since I was up on my prednisone knowledge, but I do recall that when my DS was on it, I had to stop using motrin. I'm sorry I can't recall the exact reason why. I just know that they were doing similar things and it was something along the lines of if I gave motrin, I'd be giving more than the prescribed amount of anti-inflammatories. Not sure what the dose is in his nebulizer meds, but just be aware of "too much" of a good thing. Also, while prednisone gave us tremendous relief from the worst of times, you may want to make sure any active infection is gone first.

 

I hope you can connect with the proper help quickly. Your story has moved so many of us. You will get him back. It just may not be a suddenly as you lost him. If your son could only know how many people are rooting for him and your family.