Posts posted by kos_mom
If you don't want to take your dd, may my dd take her appointment? Just kidding--we have to wait until October 2. Am in the same position--dd's brother had a quite classic presentation--he was dx'ed 11 or 12 years ago at NIH, didn't make it into the study as he was deemed too chronic, and we were sort of left on our own to deal with it with a sympathetic ped who prescribed abx and loads of ERP. His symptoms came back in college, and we just saw Dr. L in June. She suggested dd be evaluated, but her presentation is quite different. She mostly has a few subtle OCD things--way too much teeth brushing, cannot stand being in a room without a fan going, etc--but mostly has great anxiety, panic attacks, and a few phobias--but with extreme reactions. When she saw a spider on the porch last summer she began hyperventilating and fell straight down unconscious. I have noticed a symptom in common, but with different reactions. DS had a huge list of words he could not hear without a severe tic reaction. DD is constantly saying to me she doesn't like the sound of particular words I say. Am trying now to notice a pattern. At 19 she's pretty dysfunctional, so I am definitely going for Dr. L
Thanks--I did check with the doctor--she said it was fine to go ahead with the test.
Thanks for the quick reply--do you think the lab would be helpful? She need some liver function tests and perhaps I could go ahead with that and ask their view on testing for the other tings.
DD 19 has piled up a bunch of lab tests accumulated from the first week of May that I haven't been able to get her to the lab for. They now include all of the immunoligcal tests as well as the usual strep tests. I am hoping to get her to the lab this week as I am off. Yesterday she just finished a six day steroid burst for asthma. Would the steroid burst interfere with the results? Should I wait yet another week or two?
DS from 13 and a half to 18 with no symptoms. (Nine and a half to 13 and a half were spent fighting off severe OCD triggered tics with amoxicillin and a year and a half of ERP.) Then strep at 19, and they came back--not like before. There were few tics but a lot more classical OCD--handwashing etc., also a scary episode of body dysmorphia accompanied by suicidal ideation. I had to fly up to his college and spend two days in the ER with him while they found him a psych bed. They put him on ativan for six weeks (in retrospect a weird choice) and he seemed better. Then another strep at 21 and the OCD once again came back. He just had T and A and am praying he can go back to college in fall and at last have a normal semester.
DS: PANDAS, Hashimoto's
DD: Possible PANDAS, Epilepsy (Autoimmune variety?)
DH brother: RF
My mother: Scarlet fever, frequent strep throughout life
My sister's DD: Crohn's
Thanks for all the really informative replies! I've spent a good part of the weekend following up the information. Given my DD has epi;epsy--untreated at present and under-investigated when she was dx'ed--I was really interested to find that excess glutamate is implicated in both PANDAS and autoimmune epilepsy. No tests were done for autoimmunity when she was dx'ed with epilepsy. But could it be she has two autoimmune disorders--PANDAS and epilepsy? Her brother has two with PANDAS and Hashimoto's. Hmmm.... My priority this week will be to get all her bloodwork done, as well as the sleep derived EEG she was supposed to do four months ago. When I get the results, I'll see if there is anyone local to follow up with--perhaps a phone consult with Dr. T--while awaiting appointment with Dr. L.
I took my DS to Dr. L and she also told me to check DD--she asked lots of questions about her while we were there, although DD is not classic presentation. When we took DS to ENT Dr. L recommended--Dr. H--he said he is getting a fair amount of siblings seeing him for PANDAS.
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?
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.
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.
Severe Bad Moods Cycle Every Nine Days
in PANS / PANDAS (Lyme included)
Just a thought--has her thyroid been checked? In Hashimoto's (autoimmune thyroiditis) the body cycles between hypo and hyper thyroid until the the thyroid burns out. I have heard that some people feel they have fairly predictable cycles that last days, rather than weeks or months. My DS is dx'ed with Hashimoto's in addition to PANDAS, although there is no family history of thyroid problems. He does not have rapid cycling. I ran across an interesting study that mothers of kids with PANDAS had much higher rates of autimmune diseases than mothers without PANDAS kids. The most common form of autoimmune disease found was Hashimoto's.