Jump to content
ACN Latitudes Forums

New to forum way too old to PANDAS


Recommended Posts

Hello to all. I have been dealing with PANDAS since 1997. I apologize in advance for the length of this post--making up for lost time I suppose.

 

My now 22-year old son had classic symptoms, which I diagnosed when he was 10, three years after his first onset, found a pediatrician sympathetic to anitbiotic treatment, and got him dx'ed at 11 by Swedo when he was a candidate for an NIH study. Unfortunately, in one of my lower moments of motherhood, by the time I got him there he was deemed too chronic for the study. We did a year and half of ERP--the psychologist wrote up his case for a journal (article can still be found online, as can a newspaper article on his case done in 2002--no names of course) and by the time time he was 13 and half or so he seemed quite recovered, although never really was rid of character quirks, temper etc. Going on the basis that kids outgrow PANDAS by the time they are 18, I settled back for a while. At 19, OCD (different manifestation) came back. Kicking myself that I did not get him tested for strep (hey--he'd outgrown PANDAS!) we found his titers were at 400 after his sister came down with strep two months later. Horrible time in school, titers spiralled to 1000, got more long term antibiotics and a new round of ERP. Strep again at 21 and yet another bout of OCD.

 

In February his ped (we haven't dared move him to adult doctor as the ped is PANDAS sympathetic) gave him new round of antibiotics pending appointment with Dr. L at his recommendation. Which took to June for earliest time slot. Dr. L says tonsillectomy is a no brainer. We have that scheduled for Monday with ENT Dr. L recommended. But now I have been reading lots on PANDAS--so much has changed since when we started--and see so many doing IVIG. We will check back with Dr. L after tonsillectomy. Here's my question: am now getting very paranoid this horrible thing will never finally go away--should I ask for IVIG as insurance against recurrence? Would we be able to do it quickly before he goes back to college? Or should we wait until winter break? Or do we just wait to see if it comes back and then do IVIG? (Obviously not preferred.)

 

On to part 2. For many years his sister, now 19, has had multiple medical/psychiatric problems. Every time brother had strep we knew only because she had it and he got tested. In the past 7 years she has had strep twice (in addition to multiple exposures when younger); pneumonia twice (the latest two months ago when it necrotized--that is the bacteria started eating away the lung tissue--and required a six day hospital stay); mononucleosis twice; two long periods of chronic sinusitis that completely blocked all four sinus cavities, each requiring sinus surgery; and acquired asthma at age 14 along with severe environmental allergies (mild contact with poison ivy/oak that twice caused face swelling so bad her eyes were swollen shut for several days). This is in addition to epilepsy that was diagnosed as well at age 14. The psychiatric stuff I realized in bits and pieces started when she was perhaps 10--I think I was a bit covered up dealing with her brother and her stuff was not so obvious. This included development of severe insect phobia, light sensitivity, need to have a fan going at all times in her room and the bathroom, very frequent teethbrushing (10+ x day), weird occasional haircutting/eyebrow shaving, school decline that got worse and worse (she was in the Johns Hopkins gifted and talented program), followed perhaps bit later by anxiety and panic attacks. I learned much later that she had auditory and visual hallucinations starting at that time. All this stuff is still ongoing. Around 16, following a severe concussion (second one in two years) from a sudden straight drop onto a concrete driveway(unclear whether seizure related or shock response to a hallucination), the bottom fell out on her behavior. I won't bore you with the details but a lot of rage attacks, staying out all night, alcohol poisoning (comatose with a .15 blood alcohol), cutting, suicidal ideation, drugs etc. that could possibly be labelled borderline personality disorder. Halfway through her senior year in high school, unknown to us she was simply leaving school after we dropped her off and going home because of anxiety. She complained a lot of stomach pain and throwing up, lost a fair amount of weight. She was three courses short and failed to graduate last year. She has been home since becoming increasingly agoraphobic though incredibly she has a boyfriend--in college majoring in accounting--that she's been with for a year. The stomach complaints came back again this year and are ongoing--no cause has been identified.

 

She has seen many mental health professionals. They identify her as having generalized anxiety disorder, but this really does not explain everything. They realize it too and tell me "she's complicated." She has so many medical complaints her ped and others now think everything is psychological. But I live with her everyday--I know some of it is over-dramatized, but some is not. If I had listened to her doctors, we would not have taken he to the ER when she first got her latest round of pneumonia--her principal symptom was pain. And I wouldn't have taken her to the ER on July 4th when she complained about being cold and barely able to move with tingling all over her body. Turned out she had severe deydration, a bad asthma attack, and resurgence of pneumonia. Dr. L asked many questions about her when I went with my son. She told me she should be investigated for PANDAS, but of course earliest appointment is not until October 2 and I am not sure how many more psych appointments, doctor appointments, and trips to the ER (we are up to 7 in the last seven weeks)I can take. This child has compltely exhausted me over the last five years. I have gotten her on a jump start on the labs by taking her yesterday to the ENT Dr. L recommended for my son, so we'll see where that goes.

 

So, finally, my questions on part 2. Does this resonate with anyone as possible PANDAS, albeit in a nonclassic form? I know some of her doctors think my search for possible medical problems show that I am in denial about her psychiatric problems. But I would be more than willing to accept a psych diagnosis if they could give one that would explain most of the stuff and could do something that helped. None of the psych medicines have done a thing for her symptoms--SSRIs, lithium, seroquel, abilify, etc.

 

My final question has to do with steroid bursts. Her recent asthma attack was bad enough the ER prescribed a steroid burst. I will respect what seems to be the protocol on this board by not naming the dosage. I will say that I found internet information on steroid burst dosage for asthma. It ranges from "x" mgs of prednisone to "y" mgs for 5 to 8 days. She has been prescribed "y" mgs, the top of the range, for 6 days. So serendipity may have struck, but I want to know what to look for and when to see if this is having an effect. Many questions: for those who know about steroid bursts, does this dosing sound like it would qualify as a burst for PANDAS? If this is PANDAS, when would I start seeing an improvement from the burst--while still dosing or after and if latter how long after dosing ends? How long would improvements last? Is there anything specific I should be looking for other than absence of anxiety/panic attacks, decreased agoraphobia and other phobic behaviors?

 

Thanks to anyone who has managed to read to the end of this. I hope at least my story sends out a big message to you all who have many more options for dealing with your child than I had with mine--treat it aggressively--there are now doctors treating it even if you have to travel (when my son had it one's only chance was to get in at the NIH) and be ever vigilant--be very skeptical of claims one just outgrows PANDAS because the P stands for pediatric.

Link to comment
Share on other sites

ko's mom,

 

Having just come through a tonsillectomy/adenoidectomy that was recommended.....please be aware that it can cause a flare.

 

He did receive IV antibiotics during procedure but it did not seem to help as day 4 after tonsillectomy, we started a flare that is still ongoing and moderate..chorea exacerbated, anxiety, etc. etc. still 5 weeks postop. IVIG is scheduled so I am praying so much that will help.

 

I assume they will culture his tonsils with Minnesota doc. Are you seeing Dr. H at Georgetown? Possibly you could ask him about benefit of infusing IV antibiotics as other parents have told you about flares afterwards.

 

K

Link to comment
Share on other sites

I read your thorough post and my personal opinion is that you MUST have your daughter evaluated for PANDAS. But keep in mind that the name has changed to PANS - Pediatric Acute Neuropsychiatric Syndrome. Many of us here disagree with the removal of the "A" representing "Autoimmune." PANS can have infectious triggers other than strep. Read Dr. Swedo's latest paper here: http://pandasnetwork.org/2012/02/the-white-paper-is-released/

 

There are many symptoms of PANS that people seem to commonly report with their children - your daughter seems to have the teenage version of them. It just looks slightly different in teenagers/adults. OCD is very apparent in your daughter with some of the behaviors you have described.

 

I encourage you to find a doctor to look for all underlying infections - Mycoplasma, Lyme and Co-infections, Viruses, etc.

 

I will PM you the name of a doc. Hopefully others will chime in.

Link to comment
Share on other sites

Sorry to admit I skimmed your post- short on time, but I wanted to respond:

 

Dr Latimer is fabulous. I credit her with saving my two children (pandas) childhoods, singlehandedly.

 

I, personally, would stick with her. Get your daughter in with her- sounds very much like pandas, and so many of us have multiple pandas kids. If you are close enough, and it is financially possible, I would book appts for every thirty days for both kids for about 6 months. I found this necessary, until things were under control, and we had a treatment protocol worked out. She will do IVIG or PEX, if needed- but typically works in a methodical fashion- one step at a time.

 

Steroids have been the number one lifesaver for my kids. I am a HUGE believer in steroids, dosed according to the situation, as a pandas treatment. However, since your daughter has been possibly pandas for so long, six days may not be enough.

 

Good luck!

Link to comment
Share on other sites

ko's mom, most definitely PANS in your daughter too. I do believe Dr L is wonderful but since it takes so long to get in for her, keep that app. and you could alternatively contact Dr T in NJ to get the ball rollong, he could order all the app. tests, try some different psych drugs in the meantime (he has a phD in neuro pharm) so when you do see Dr L in a few months you've moved further down the line. I'd also go ahead with T&A for your dd. Even if the steroid burst works it's usually temporary.

Link to comment
Share on other sites

I think your daughter sounds like PANDAS/PANS, also. If you are going tonsillectomy, do it before IVIG.

 

My DS has PANDAS/PANS, although he's never had a positive culture or titers to strep. His symptoms are classic. IVIG has helped tremendously, keeping in mind he is now 8.5yo, had IVIG a yr ago and all this PANDAS business started just after he turned 5. He was having mild symptoms we did not recognize. Things fell completely apart after he had the flumist that fall, 9 months after his milder symptoms appeared.

Link to comment
Share on other sites

Wow youhave your handsful1!

 

I am sorry if I missed important details as my brain gets distracted.

 

definitely work both kids up for PANDAS/PANS

 

I would also suggest LYME testing through a goodlab like igenex.

 

I am new to the steroid burst stuff.

 

My daughter 10 didnt do well and had to stop after melting down on day 2. She is mildly PANDAS

She got her tonsils out and still got strep 6 weeks later. i wish I had done things differently with her. the first problem is that the ent refused to culture the tonsils. I wish I pushed for that a ###### of a lot more but I am sick and my sever pandas kid was in crisis it was a mess. The ent also refused abx during and after surgery which was dumb. I am mad I didnt insist harder.

 

so those were my mistakes.

 

nowmy severe pandas kiddo 6. We were going to take his tonsils out at the same time. I am glad I didnt. I didnt do it because he got accepted to NIH study around the same time.

 

he got IVIG and got to 100% eventually. he is having a set back ATM and trying a steroid burst. day 1 is today.

 

the thing is if someone has lYME and gets steroids it can get worse,mostly if there are no abx at the same time.

 

In my personal Lyme experience, Lyme can make you seriously have severe mental issues all by itself.

 

So if time allowed and youcan do this

I would

get them both tested for Lyme thru Igenex. Its roughly $200 for Igm and IgG Lyme western blot.

some ins will reimburse you for the test. Then I would test for other coinfection thru quest. Like bartonella(that can cause mental issues) mycoplasma etc.

 

I would try to get the tests drawn before you start abx or steroids. But if you cant you cant,oh well.

 

then I would try like ###### to get them both on some antibiotics ASAP and for as long as possible regardless of the test results.

 

My mind is going to mush at the moment so I will be back.

Link to comment
Share on other sites

Dear All,

 

Thanks for all the replies!

 

My son is seeing Dr. H for the tonsillectomy. I asked about IV antibiotics during surgery (thanks to this forum). He said something about immediately testing T and A for strep and then using IV antibiotics, presummably if positive. I may not have got this quite straight, but I'll ask again before surgery. I'm thinking he will test positive--DS has been on clindamycin prescribed by Dr. L for three weeks and says it makes a difference (he's getting too old to admit all the OCD stuff to me, but I do notice I am not finding piles of tissue everywhere). After reading many of your posts, I'd really like to get the IVIG out of the way before he goes to college--he really cannot afford to mess up another semester.

 

As for DD--I am somewhat hopeful that so many of you think PANS coud be a fruitful route to explore. I really regret not thinking about this earlier, but I have really been out of the PANDAS information loop for nine or ten years. At that time everything required the very classic sudden onset, which I knew all too well from her brother. The more insidious suddenly noticing one quirk then another and another over time didn't qualify, and I wasn't aware of the hallucinations as symptom angle until my recent renewed research. Most of the mental health professionals she's seen became quite uninterested in really exploring them once it was very clear she is not psychotic. Various explanations included conversion disorder, somataform disorder, bipolar (put on lithium--no effect), GAD,or borderline or some combination of all of the above. And most of the MH people have been unmistakeably dubious about looking for medical causes. I personally had kind of settled on borderline--but am now seeing a fair amount of overlap between BP and PANS symptoms--is it possible some of the people dx'ed borderline could actually be PANS?. She was completely turned off by the standard treatment for BP, dialectical behavior therapy, so we had to discontinue that. I had thought because she's self-diagnosed since 14 or so as schizophrenic and thinks everything is hopeless in any case. This led me this year to switching her P doc to one of the leading, if not leading, world's expert on childhood and adolescent schizophrenia in the hopes he could get off this very unproductive line of thought. Her boyfriend thinks P doc has not yet succeeded. P doc is open to treating her with azithromycin for possible PANDAS--he knows Swedo well--but really thinks she needs to be in residential facility as drugs are not a minor concern. He also understands getting her to go to one would be challenging.

 

Dr. L is really great, but waiting until October to see her without doing anything in between is nervewracking as I am concerned by drug issues becoming a real problem by then. Dr. H ordered a lot of tests for her--I'll wait for those results, and will observe behavior after steroid burst, and see where that leaves us. MDMom--thanks for the PM on doctors--if results from Dr. H's tests point to issues, I will definitely contsct them. Will reply separately.

 

Again much thanks to all.

Link to comment
Share on other sites

I would do a general culture on the tonsils, not just for strep as you can find all kinds of bad stuff in them. is he getting is adenoids out too? I would MAKE SURE you get post op abx. dont let it be an option.

 

I feel from reading your posts that you have alot of guilt and self blame. try to take it easy on yourself. It sounds like you have done the best you can. Thats all anyone can do. There illness is not YOUR fault!

 

hugs

Link to comment
Share on other sites

Bulldog24.

 

My post went up before I have read yours. As it happens, DD was put on antibiotics for pneumonia at same time as steroid burst so perhaps we won't get an adverse reaction if Lymes. ABX is Avelox 400 mg--same prescription she was sent home from hospital with after 5 days of IV vancomycin and cefepime for pneumonia. I think Avelox is one of the bigger abx guns, but I haven't seen anyone mention it for PANDAS. Since ABX and steroids prescribed for medical conditions couldn't really manage getting tests first. She sees pulmonoligist next week and will see what she does about further ABX. If she says discontinue, I can get ABX through P doc. DD had adenoids out with one of her sinus surgeries but still has her tonsils.

 

I think Dr. H prescribed Western Blot will check--Dr. L did for my DS but we just went to Quest. I'd actually suspect Lyme much more for her than for him. At some point DD tested positive for Babesia and she was tested for Lyme when she was 16--just Elisa and it came up negative. Intersting that her sed rate was tested at same time and came up very high at 85 (normal 0 to 20), but doctor didn't think worth following up as so non-specific and she didn't have other abnormal values. In retrospect, I probably really should have pushed more at further investigation as high sed rate can indicate autoimmune problem. But was pretty covered up at the time dealing with out of control behaviors like not coming home, running away, alcohol poisoning, and uncontrolled seizures. (Was very bad summer!)

 

I'd be interested in anything you may have been told about steroid burst. Told Pdoc about asthma steroid burst and he was pretty shocked at high amount with no tapering. I have enough prednisone around to do my own tapering after we finish six days at the very high dose--is tapering typical for PANDAS steroid burst? Pdoc was concerned about possible bad mental effects from prednisone, but we are now on day 4 and she's been pretty darn good. I've asked her boyfriend to be alert for behavior changes--good or bad--but am not really sure what to expect with steroid burst if PANS. Were you given any insights?

Link to comment
Share on other sites

For many years his sister, now 19, has had multiple medical/psychiatric problems. In the past 7 years she has had strep twice; pneumonia twice (the latest two months ago when it necrotized--that is the bacteria started eating away the lung tissue--and required a six day hospital stay); mononucleosis twice; two long periods of chronic sinusitis that completely blocked all four sinus cavities, each requiring sinus surgery; and acquired asthma at age 14 along with severe environmental allergies. This is in addition to epilepsy that was diagnosed as well at age 14. The psychiatric stuff included development of severe insect phobia, light sensitivity, need to have a fan going at all times in her room and the bathroom, very frequent teethbrushing (10+ x day), weird occasional haircutting/eyebrow shaving, school decline that got worse and worse (she was in the Johns Hopkins gifted and talented program), followed perhaps bit later by anxiety and panic attacks. I learned much later that she had auditory and visual hallucinations starting at that time. rage attacks, staying out all night, alcohol poisoning (comatose with a .15 blood alcohol), cutting, suicidal ideation, drugs etc. that could possibly be labelled borderline personality disorder... a lot of stomach pain and throwing up, lost a fair amount of weight.

 

Does this resonate with anyone as possible PANDAS, albeit in a nonclassic form? None of the psych medicines have done a thing for her symptoms--SSRIs, lithium, seroquel, abilify, etc.

 

My final question has to do with steroid bursts. I want to know what to look for and when to see if this is having an effect. Many questions: for those who know about steroid bursts, does this dosing sound like it would qualify as a burst for PANDAS? If this is PANDAS, when would I start seeing an improvement from the burst--while still dosing or after and if latter how long after dosing ends? How long would improvements last? Is there anything specific I should be looking for other than absence of anxiety/panic attacks, decreased agoraphobia and other phobic behaviors?

 

I think your son is in good hands with Dr L and you'll need to see how the T&A and other possible treatments go. It sounds like he's been able to recover from Pandas flairs, so that's promising.

 

I highlighted the parts of your daughter's story I wanted to comment on:

1. Severe infections - it sounds like your DD (darling daughter) really struggles to clear infections. Sometimes our kids have poorly functioning immune systems. Some find immune deficiencies (by testing various levels of immunoglobulin known as IG panels and IGg sub-panels - which are blood tests an immunologist or Dr L could order). Some kids are zinc deficient. There's an excellent book you may want to get called Answers to Anorexia http://www.jamesgreenblattmd.com/ which explores how eating issues as well as infections can be tied to zinc deficiency. My DS (darling son) suffers from a condition called pyroluria which is a genetic zinc/B6 deficiency. Here are two good resources: http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg 3) and http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf. My DS struggled with Pandas and lyme and could not achieve remission until we finally found and treated the pyroluria. He responded within days - he was a different kid.

 

In addition to the sinus and pneumonia infections, you mention mono. The virus that causes mono - epstein barr virus (EBV) stays in your body forever. In the same way a childhood bout of chicken pox can resurface as shingles in adulthood, EBV can resurface as well. You may want to test for titers for EBV, herpes viruses and cosackies virus just to see whether a virus seems active or could be contributing to her issues. While some docs say you can't treat viruses, there are anti-virals available and L-lysine is an amino acid found in foods and supplement form that can be effective in reducing a viral load.

 

Finally, new attention is being given to the role of viruses and infections in schizophrenia. Here's a great article from the March 2012 Atlantic Magazine http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/ that talks about how a virus can be transmitted from cats that alters lots of human behaviors and risk taking.

 

2. Allergies/Toxins - there are several older discussions on this forum on how lowering histamines seems to help our kids. Some have found that using pepcid (which blocks a certain kind of histamine) helps both stomach issues as well as behavior. Be aware that singulair can cause neuropsych issues.

 

The body rids itself of toxins using something called the transsulfuration pathway. This "waste management system" is highly dependent on zinc and on glutathione, which is the body's master antioxidant. So doing things to help the body detox can also be very helpful. You can google oxidative stress or search the lyme forum for many discussions on this topic. When a body is killing of bacterial infections, the bacteria release toxins which can cause as many health and neurological issues as the original bacteria. So it's something to look into if chronic infections are playing a role. (look into herxheimer response or "herx" for background).

 

Finally, mold can trigger or compound a number of health and psych issues. This too has been discussed in depth on the lyme forum and if you want to learn more, I'd recommend www.survivingmold.com as a place to start.

 

3. Methylation - I can go on ad nauseum about this topic. Some of our kids have a genetic mutation that makes it hard for their bodies to process vitamins (folate and B-12) and this results in a chain reaction of problems that have far reaching health consequences. Among them is an inability to correctly produce seratonin as well as properly get rid of toxins. Addressing this genetic issue has made a huge difference for my DD, who suffered from some serious bi-polar behaviors. If methylation is a problem, SSRIs may not be as effective. Also be aware that PANS kids are often super-sensitive to SSRIs and dosages of 5-10 mg work much better than typical hgiher doses of 50-75mg that many docs are used to prescribing.

 

4. Steroids - if your DD has a chronic infection, longer term use of steroids should be avoided, as steroids suppress the immune system. But for her current treatment, there's no hard and fast rule as to what to expect. Some people see immediate relief while others see relief a week or two after stopping. Some see no effect. Responses seem very individual. IMO, steroids are an effective treatment for a crisis or to head off what looks like an impending crisis. But you can't use response to steroids to confirm or rule out PANS. Only that a positive response suggests that inflammation was contributing to your problem. But what's triggering that inflammation still needs to be addressed (bacterial infection, mold, autoimmune responses, allergies - all trigger inflammation).

 

I know I've thrown a ton at you and haven't gone into much detail on any of it. I know in the moment, you won't be able to look at all of this. But I wanted to give you some topics to jot down as a checklist. If you find that x approach works but then stalls, you can take a look at y or z and see if that helps. Most likely, your DD has multiple things contributing to her struggles. It will take time to sort out.

 

I think Dr L is a good place to start. She was able to take my son from a bad place to a place where he could function pretty well. We then turned to an integrative osteopath who was able to get both of my kids to a place I once thought impossible. So it's a process of peeling away. Hopefully, you're on your way with both kids. I highly recommend reading through the forum archives and I know that many parents here can help be a sounding board for ideas.

 

Bets of luck with the upcoming T&A for your son and the steroid burst for your DD!

 

Edit - given your DD's past positive on babesia, I would really pursue lyme testing. Either Igenex or Advanced Labs - which does a blood culture that can take a picture of live spirochetes. I think it's worth re-posting your DDs story on the lyme board as well. Standard WBs and Elisa aren't very reliable. If you go to the lyme forum, you'll see "helpful threads" at the top of the forum. In there, you'll see some articles that discuss lyme tests and the controversy/reliability.

Edited by LLM
Link to comment
Share on other sites

get the copies of any Lyme and babesia testing. There may very wellbe positive indicators on the test but it was read as negative. babesia needs special treatment. that will not go away with antibiotics alone as it is a red blood cell parasite similar to malaria. I would be shocked if she had babesia and not Lyme with it. Lyme could make a high sed rate, but its a general marker like you mention.

Link to comment
Share on other sites

In addition to the sinus and pneumonia infections, you mention mono. The virus that causes mono - epstein barr virus (EBV) stays in your body forever. In the same way a childhood bout of chicken pox can resurface as shingles in adulthood, EBV can resurface as well. You may want to test for titers for EBV, herpes viruses and cosackies virus just to see whether a virus seems active or could be contributing to her issues. While some docs say you can't treat viruses, there are anti-virals available and L-lysine is an amino acid found in foods and supplement form that can be effective in reducing a viral load.

 

LLM, didn't know you can check the coxackies virus titers! my ds had these blisters on the palms of hands and soles of feet 2wks post ivig and now he's terrible. we're checking for other hidden infections and am wondering if maybe the blisters were HFAM dx (it was a very mild case if it was, no fever or mouth sores) but could I do the titer test now to check if these levels are elevated? Do you know what exact test to order? It's coxackie A, right? Going to Pandas Dr on Monday. Thanks so much (sorry to hijack post!)

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...