Phasmid

Thanks Tampicc, Gosh, I sure hate to hear about another child with this problem. I know the tics are bad, and the ocd is horrible, but a 12 year old who smells like poop... that is just so heartbreaking for us (and for him). I know what you mean about, "...loses ability to process..." and I think you are right on the money. We now know (Dear God, I wish we had been smarter about this and could have made the stupid connection years earlier) that when he is starting to exacerbate, he will have soiling issues. He was doing great until his last illness with influenza A/B or h1n1 (wasn't tested), then had a bad day where he soiled a couple times in a day. I think basal ganglia inflammation causes some sort of disconnect so that he doesn't make the connection between feeling full and needing to go. I too have considered it to be an ocd thing- not able to stop what he is doing and take the time to go. Things are MUCH MUCH better, and this poor boy has dealt with this since age 5 and he is now 12!!! Yes, we had a very brief worsening after the first IVIG- just the first week or so. Then, at end of week 2, all resolved. Have you checked stool for C. diff. toxin? I don't know if this had anything to do with it, but he did have C. diff. colitis. I don't doubt at all that it is probably PANDAS ocd related. Oh... one more thing- have you tried eliminating milk? We think that things are better when he is strictly off milk. Have you tried this? Will be thinking of you guys! Hang in there!

The docs in hospital should be looking at testing for active or recent streptococcal infection, as well as infection with Mycoplasma pneumoniae. There is much in the literature regarding sudden onset OCD and streptococcus as well as Mycoplasma. Searching PUBMED for "obsessive compulsive, Mycoplasma" or " " , streptococcus" should get you some abstracts for a quick look at the papers. Let us know if you need further help getting literature. Does sound like a post-infectious neuro. syndrome such as PANDAS.

Fixit, sorry to hear that the tic is back!!!!!!!!!!!!! What now??? I would say that, with eyebrows STARTING to grow back, with academic performance holding steady with B's and A's, no tantrums/rages for long time, fact that he's getting along with friends, haven't gotten any referrals/detentions at school, no compulsive vocalizations while t.v. watching, no echolalia/mimic stuff while watching video/t.v., no reading problems/stutter, eating normally, not much in the way of poopy pants problem (yes, he's 12!), I would have to say that he is now at 99.5%! Great thing this morning, to add to it all, is that he didn't flip out when he found out we were going to yet ANOTHER dr. appointment! I purposely didn't tell him until 6:00 this morning when I woke him up! Prior to treatment, he would have: 1). screamed and cursed at me 2). refused to go 3). asked me 100 times on the car ride there what they were "going to do to him" 4). been a major pain in the exam room while waiting for doc to enter, like kicking the trash can, ripping off the table paper, knocking on the walls, etc. Instead, he said, "Oh." He got up, came out with a clean shirt on (okay, I got it out of the closet for him!), asked gently if he could play video game a few minutes, asked for breakfast, quit when I told him to, got in the car, drove the 45 minutes there, talked about unrelated things, read a magazine in the exam room, said hello to doc when she entered, made a joke about being too tired to answer a question, left the office, asked if we could stop for food to eat on way back to school... AND NEVER MENTIONED ANYTHING ABOUT NOT WANTING TO GO TO THE DOCTOR! I freaking couldn't believe it.

My son did GREAT on biaxin (clarithromycin) but it had a bad after taste (metallic) that my son refused to continue it! So, he's on azithromycin, which is holding him well too. When my son first started the biaxin, he slept alone in his room for the first time in many years- four days after starting the med, and that was in March of 2010.

VERY interesting about the PET scan. Thanks! Our new neurologist worked with Chugani at UCLA! She won't do the PET though, as it involves injecting dye and she doesn't like that. Went to the neuro. consult and this doc is REALLY WONDERFUL! Very good with my son (usually our docs have no personality and docs rarely engage and involve the kid!) She has two kids with autism so she knows adversity. The highlight was her telling my poor boy that SHE TOO had trichotillomania as a child and pulled all lashes and brows out! He could see that she has them now, so that's reassuring! She totally agrees with the PANDAS/PITAND diagnosis (poor thing- she read five pages of his history which I brought) and supports continuing IVIG for as long as immunologist wants to do it. AND... she offered to jump into the ring with insurance appeal (ins. paid for one replacement dose, but won't cover more), stating that she is familiar with the literature and says there is enough there to support this therapy. She is going to write a letter as well. Her suggestion was to accept what insurance will cover for the replacement dose, and then I work out a deal with the hospital to pay cash for the remaining amount to bring the dose up to the "high dose" of 1.5 g. if that is what works best. However, my son appears to be doing so well even after just one low dose. She asked, finally, about Lyme! I told her negative by Western Blot and asked if she trusted that. She just sighed... She is ordering MRI just to rule out tumor, vasculitis, or OTHER cause for these neuro. symptoms. She was not concerned really about the reading problem he recently developed (re-reading and stutter) and which resolved, and says that this is OCD. I know many of us kick ourselves, and we needn't, but it did hurt a little to hear her say, "How could his pediatricians have dismissed chorea! You never dismiss chorea!"

Wilma, I am glad that you are not giving up. Is she still on vancomycin? So, you do see an improvement on vancomycin? I have no idea what happened or why, for my son- whether pure coincidence, or if his C. diff. infection (he had toxin A and B test that was positive) was part of the problem, (or all of it), but I can say that within 24 hours of my son being on Flagyl, and then Vancocin (vancomycin), his overnight occurence of OCD, coprolalia, hugely dilated eyes, rages, and autistic-like behavior all began to disappear as they came on, gradually going away completely in 14 days. The trick with C. diff. if that is what is being treated is to completely treat it. I had to consult researchers in hospitals who were authors of papers on C. diff. treatment regarding the process of tapering off vancomycin over a period of a couple months to avoid recolonization. Anyway, I am glad that she is getting somewhat better. Is there anything else to investigate, in your opinion? What is her treatment plan now? Mary

First, any antibiotic can cause an overgrowth of C. diff. Even the antibiotic specifically FOR C. diff. has been associated (in the literature) with overgrowth of C. diff. My biggest concern, if I were in your place, would be the adverse psych. effects of Cipro, being in the class of antibiotics that it is, namely the flouroquinolones. I took Cipro for an infection one time and had a panic attack. I did the same with Avelox, but MUCH more severe (like some of your kids, I could not leave my husband's side, terrified of who knows what, but completely anxiety-wrought). Then, my doc said, "Oh, yeah, this class of antibiotics is associated with anxiety attack." They don't know why these drugs have this side effect. Not a reason to NOT take it, if that is what is prescribed, but just something to watch for! You will know immediately if there is an issue with this med.!

I know there are a few with kids who have/had trichotillomania. Wondering if you had MRI and what was outcome? Also, those who had reading OCD (re-reading compulsively), did your child have MRI? Wondering if there have been abnormal MRI's. I am just guessing that if we go to a neurologist, she will want to do MRI. IVIG helped apparently- eyebrows growing in. Only second time he has stopped pulling in five years. Going to neurology consult tomorrow at the urging of our PANDAS doc because my son developed a reading problem (re-reading over and over prior to IVIG, that worsened for short time in first two weeks after infusion). Good news is she has challenged kids of her own (autism) so she will probably be open to the possibility of PANDAS. My son is doing great. But doc wanted us to consult with neuro. after his reading ocd grew worse. He was nervous that we were ignoring a bigger problem. I'm okay with ruling everything out. Even though he is not doing it anymore (stopped two weeks after infusion), he wanted us to follow up. Anthem has refused any more infusions (he only had one for specific immune deficiency). Also, since we lost our doc at UCLA, wondering if the neurologist would be a likely person to take over locally. I'm not certain that we will do additional infusions. If the trich. returns, I will resort to classical pharmaceuticals at this point, as it is not fair to my son to let him go untreated for the trich. any longer as he approaches 8th grade. I don't even know what I'm asking anymore...

I may purchase these off internet just to have handy at home for myself and ds. Anyone using these? Are they just as reliable? One brand better than another? Source better than another?

Might be safer, but few providers doing this, and procedure is a little more invasive and painful for the child. Also, some docs think it has to be followed by IVIG eventually anyway, so yes, it gives immediate relief (since autoanibodies and harmful antibody-antigen complexes are removed) but symptoms may return quickly if the underlying immune system malfunction is not corrected.

this really is just a call for further research, nothing new

I had never seen "hot ear" discussed before. My son had "hot ear" constantly for years until treated aggressively over past six months with antibiotics. I don't know the cause. One popular physician author, Leo Galland, MD, describes the "hot ear" as being caused by food allergens. Who knows. But, now his ears are not blood red all the time.

Wow- great to hear your story. Thanks for posting. So happy your son is doing so well! Congrats!

Wow, good job girl!

Can you elaborate on the "rare parasite" diagnosis?

Hello, sorry to hear about your son's troubles. Hope you will find support here. I sure did- I wouldn't be here without this forum. There are so many supportive people with great information to share. Each person can offer something helpful. So, are you comfortable with your present doc, or are you looking for a doc who will address the PANDAS issue, and treat aggressively with antibiotics and other therapies? I would do lots of reading here regarding which antibiotics have been effective. Seems to depend on the child, but there are a couple of preferred drugs. My son was managed almost entirely with antibiotics. He did need some help last year for anxiety so we tried an SSRI, but it really didn't help all that much. It caused some additional problems, so he went off that. His anxiety has resolved with aggressive treatment with antibiotics. Diet is important for my son- he really responds to super nutritious eating habits. It just makes him feel good, which helps overall. Yes, unfortunately, even if you DID have insurance, you wouldn't be guaranteed to get IVIG covered. We have very good PPO insurance and were denied. Share some more details and we will all help as much as possible! Take a deep breath, and go give your boy a hug and tell him things will get better...

yah, isn't that wierd? It's a very defensive posture... I don't get it. Then there's a whole rant by TS folks against Dr. K. Is that warranted, or are these folks just very .. defensive? I don't understand.

Oh, I didn't catch that. I'll go look at that. Uh... yes, plenty of "feist" in me too. Don't really think it's a selling point for me, according to my dh. I know of, hmmmm, about half my friends, family, and acquaintences who would like it if I went and got a rx for some serious sedatives. Sigh... I like Wiki, too. It's not really the article itself that is "feisting" me up . . . it's the editor's sanctimonious railing at Buster on the "Discussion" page that got me going! Bet you're feisty, too! I've yet to meet a PANDAS mom who isn't!

I am not at all above BRIBERY and use it often. It gets expensive, but I have had to use it in the following cases: taking meds getting allergy shots getting IVIG going to dentist I don't know what monster I'm creating for the future, but right now it does the trick! Like I said, it gets expensive, so be careful what you "trade" for!

just fyi... I actually think highly of wikipedia entries and find them to be highly accurate, very up to date, and well written. So, don't take it so offensively! Boy, you're a fiesty one!

No, but the interesting part is "...or refute..." what does THAT mean- that it should be left up to the care provider to decide! Like treatment in general should be left up to the care provider not these stupid insurance companies.

thanks Melanie, and is there a diagnosis code for this that is standard? THIS IS SO FRUSTRATING!!! The insurance company can't tell me if they cover this (selective antibody defiency) because they don't have a diagnosis code - I have to get this from the doctor's office. So, we conference call the doc's office and the girl tells us that they don't keep the dx codes there, that they have to call a different department! AAAGGGGGGHHHHHHHhhhhhh!

My son has "specific immune deficiency" as he has no antibodies to 11 of 14 serotypes, even after re-immunization. He was rechecked one year after, so there was plenty of time for him to respond. In the Blue Cross descriptions of covered diagnoses for IVIG, this condition is a qualifying diagnosis. Have you gotten IVIG covered with this diagnosis?

Wilma, you want to make sure your child gets the correct dose for her weight. It will usually say an amount based on age. I don't know if you are giving pure "ibuprofen" in tablet form or a "Motrin" liquid mixed with other active ingredients. Please see the Motrin link below- cursor over the left will give you dosing information. It is possible to cause much harm by overdosing children. Please be careful- http://www.motrin.com/

my son vomited once or twice, even had a low fever for a short time. doc said it was common, not to worry. started day 2, ended on day 3 following IVIG