T_Mom

I just have to add one more thought tonight--I know full well that less than a year ago, I did not have time to sit and think about these issues as for about a month my daughter had, what looked like, full blown psychosis--OCD that was crippling, etc. etc. Make that "sudden onset" severe regressive OCD. We wondered if some terrible thing had happened to her it was so sudden and out of the blue. For about two weeks it was full-assist, in that we had to carry her, feed her, dress her, etc. She felt so strongly the OCD was telling her not to do things. Out of the blue (except for a probable "related" case of sinusitis which showed up on the MRI.) Now, I believe this was basically brain inflammation--(remember Dr. ELIA in the news clip?...) and the idea is that basal ganglia is inflamed as in Sydenhams Chorea--and all that may lead to... * This did not show up prior to age 9. It goes away with antibiotics. It goes away with steroid treatments. It is inflammation caused by something. IF this was a systemic malformation, or misinterpretation of the foods she was eating, then I wonder wouldn't it have shown up earlier? If it is caused by strep lurking, the secret culprit, or some other cause of inflammation (autoimmune, etc.) then perhaps antibiotics will treat and remediate, give the body a chance to heal, the brain cells to stabilize again--via quelling the inflammation. What of those antineuronal antibodies? They are indicating the body is fighting off something--why not help it? Evening ramblings--It is good to have the time to be able to think about these things.

Hi MomMD, Can you elaborate on what you said re: the BBB closing at puberty? I have never heard that before--thanks. Also, on another post you mentioned research at Yale (Dr. Leckman?) re: antibiotic use, can you chat about that too-- thanks so much, T.Mom "I do think it is reasonable to suspect that IVIG or steroids will be needed periodically to treat "relapses" until puberty when the BBB closes. Carter's ASO had dropped to 950 (from 1750) and his antiDNase B rose to 1360 from 1320 after two plus months of antibiotics. his symptoms improved somewhat but his ANA is positive at +1:640 which just seems to point once again to an autoimmune course of treatment rather than antibiotics alone."

Hi Michele, yes our daughter had both urinary and bowel accidents periodically during the worst exacerbation last summer. It actually started about two months before her other symptoms exploded (OCD and tics.) Urinary incontinence is on the list for possible PANDAS symptoms (NIH--or Swedo work), but the bowel accidents were also disturbing for a 10 year old. I am sorry, I cannot remember, is your dear child on antibiotics now? Were you ever able to get a doctor to give you the month of full strength antibiotics to try? Have you had high ASO and DNASE titers (not that those are fool-proof certainly)? I do think if it is PANDAS-type incontinence these issues go away when the inflammation goes away. Take care, T.Mom

Hokestra reference- http://www.ncbi.nlm.nih.gov/pubmed/16401548

Hi Caryn -- I feel like I am going where "angels fear to tread" as these issues are beyond my limited academic knowledge. I wonder however if the real question is where or not there are truly immunological issues in OCD and TS period (i.e., in non-PANDAS type individuals as well...) Hoekstra's work appears to suggest a relationship between infection, immune mechanisms, and resulting neuro-psych issues. He appears to broaden the context for autoimmune issues to include other illnesses such as OCD and stand alone TS. In our case certainly something is amiss when a child (mine) has a sudden onset of severe anorexia (basically OCD), 6 months later sudden-onset regressive severe OCD which ends when treated with antibiotics and steroids. I understand that you are reflecting on Hoekstra's work when you say he makes the case that PANDAS is not necessarily "a stand-alone" diagnosis, as essentially I understand him to be saying that there may be immunological issues in a broader range of illnesses including OCD, TS, etc. Best, T.Mom

Great Pat--That is good news to hear! We have also used alot of Kefir, and other probiotics which I think could only help the healing process. Great to hear-- T.Mom

This is to all Mothers reading this post...Though we do not know each other beyond our shared experiences with our children, there is a bond and I wish you a moment of peace today, a time of reflection. You are seeking the best for your child, searching for a help -- May it come soon and stay for all of us, T.Mom

Boychildsmom--Thank you for posting your experience. This is fascinating and I only wish every parent dealing with tics/OCD issues could access your experience and information for reflection... I can only wonder how many could be helped if they saw the right doctors who are knowledgeable enough to know what to try. Sincere thanks, T.Mom

Re stress: Yes, we've experienced this. One theory...stress (epinephrine?) can temporarily disrupt the blood brain barrier. Here's an article http://www.thefreelibrary.com/Stress+may+w...rier-a018976941 So perhaps the stress opens up the blood brain barrier allowing the antibodies or toxins (or whatever) to enter the brain, causing symptoms. Of course it can turn into a viscious cycle, since PANDAS causes the child to feel more stress (anxiety, tics, adhd, depression, anger etc.) thus keeping the bbb more chronically open. Oh my gosh EAMom! this is a really scary thought isn't it! Fascinating. I totally agree with you that stress or fatigue makes a HUGE difference for these kids as their brains heal...they need to rest. There have been mornings when (if my daughter was up too late the night before) I have taken her to school late, just to ensure extra sleep. We cut back on expectations and activities -- I guess most families do after a major illness hits, we all needed a break. Best-- T.

Hi Sam-- No, we have never tried any other antibiotic other than Amoxicillan. Our experience is that my daughter had a very bad episode (sudden severe OCD) last summer. She was so bad that a doctor suggested a steroid burst, we did that and at the same time tried Amoxicillan due to sinusitis that showed up on the MRI, also low zoloft from a psych. She suddenly recovered. Then, in the fall our daughter (who typically never gets sick) had 3 episodes of symptoms of OCD and mild tics coupled with colds, each time we put her on 10 days of Amoxicillan...(only about 10 days inbetween times of getting a cold though)...Until December, when she got a cold with a high temp. and the OCD symptoms came back full force and she was badly affected. This time 10 days of full Amoxicillan did not clear the OCD symptoms. The doctor we were seeing at the time put her then on half-strength Amoxicillan and she went down-hill fast -- stopped speaking due to OCD, etc. That doctor would not provide Azithromycin--So we gave her full strength Amoxicillan again and within 4 days she was able to go to school. We continued full strength Amoxicillan for about 2 months (Jan-Feb) and she was 90% herself again, every week there was noticeable improvement--though not 100%. That was when we tried the steroid burst again, and she came back 100%. We have never done IVIG but I can see us needing to if this keeps coming back. I pray it does not come back. I believe inflammation has been the culprit -- causing the OCD and tics. Keeping her on full strength Amoxicillan for a few months now really seems to have helped, and when she plateaued a steroid burst made a huge difference. This past month I feel like I am getting to know my 11 year old daughter who has been away much of the year. Blessings to us all--as we persevere. T.Mom

If the symptoms were very worrisome and obvious than my opinion would be the same as Dedee's. If the ripples could be "remaining learned behaviors or habits" then I would probably keep her on the preventative dose and wait it out over the weekend and see how she does... We should not be afraid to call our doctors and tell them what effect the changing dosage appears to be having--(though we so often are:) but this is exactly what needs to be tracked and evidence-based experiences of parents are telling us all something... Hang in there dcMom, and let us know what happens-- Best, T.

This article may be helpful to take into a doctor when discussing antibiotic use and PANDAS/PITAND. http://www.pubmedcentral.nih.gov/articlere...i?artid=2413218

Hi Lori, I am so very sorry you are experiencing this with your daughter. Yes, many families have had children with unexplainable outbursts, severe behaviors, severe OCD/tics, etc. related to PANDAS/PITAND issues. Early on, a good friend reminded me that if this was PANDAS related issues it was essentially brain inflammation--and this could touch various aspects of life. I was remembering today our pediatrician telling me last year to hide all the medications of any type in the house because our child was so "not herself." Have you had any success with any treatments thus far? Many with PANDAS have had positive effects when their child was treated with antibiotics, to quell the inflammation -- I believe, have you considered this possibility to see if her behaviors are affected by inflammation/immune modulating issues?

Having lived through our experiences this past year... If I suspected that my child's symptoms were brain-inflammation related (ie., PANDAS/PITAND)-- the steps EAMom has outlined are what I would do, having lived through the past year... We never used Advil (motrin or ibuprofen), but the use of antibiotics for an extended period of time made all the difference, just our experience. We decided it was benign enough to try and thank God we did. T.

Thanks Vickie and Caryn--I appreciate the input. It helps to know what has worked for others. (Caryn, no we have not had OAT testing via Great Plains, though I appreciate that these may have been helpful to others, we have had our hands full with other issues. Seasonal allergies are a regular this time of year with tree pollens etc. I appreciate your suggestions --) Thanks-- T.Mom

My daughter is really suffering with allergy symptoms right now-- Has anyone found anything that they would recommend for use that won't affect the PANDAS issue? She was on Zyrtec for two days and her pupils got huge. Thanks.

Also, on the PANDAS forum discussion look up posts by ACDRoberts -- a parent to a child with tics. If you can search on the PANDAS forum for the Susan Swedo video from the fall 2008 DAN conference that may help explain more. Best to you as you sort this out--

Yes, I have read that this is not an unusual report (as I understand it) when kids have severe OCD exacerbations. I have read the critical question is whether or not the child says that the voice is "IN my head telling me..." (this can be thought to be OCD related) BUT if the child reports hearing the voice/s coming from outside of themselves this may signify something else. (Seemed like an unusual distinction - but acknowledged in the OCD psych. world.)

Hi CWMom, I know from previous posts you saw an improvement (dramatic) with antibiotics...and your son continues virtually 100%. You used Keflex for 10 days (?) and then Amoxicillan 250 twice a day--Is that correct? -- Does he continue on the Amoxicillan now? How much? My daughter is 11 also--and doing well on Amoxicillan, but we struggle now with changing anything, and cutting it down. Thanks--

Thanks EAMom-- It was Amoxicillan that this doctor said was anti-inflammatory--I haven't seen it elsewhere, but that was what we were told. Best to all--

Hi LoriL--Welcome. I am so sorry your daughter is going through this difficult time. I just wanted to add that we also tried the medication and CBT route for a few months. For our daughter it helped her to feel "OK", that there was someone else there-- helped us all. Did she get better because of it? Well, I would have to say I seriously doubt it -- other than we now have a language to talk about OCD with, and certainly that is helpful. CBT and meds. are the standard treatment for OCD, and I was told by one doctor that SSRIs may have an anti-inflammatory impact...(I have never read this anywhere.) However, our daughter would get symptomatic with a cold, sinusitis, etc. She would go on antibiotics for an illness and her OCD symptoms would diminish. She also had tics at one time associated with these exacerbations. I was also told that certain antibiotics can have anti-inflammatory effects. Our child had two severe episodes from which it has taken months to recover, but there has been a recovery for her--lengthy antibiotic treatment has been key, for us (also steroid burst.) Take care--

Lacy--That is GREAT news! Thanks for sharing this with us. I hope and pray the antibiotics continue to "kick" this once and for all and there is significant improvement week to week-- We continue right now on antibiotics (therapeutic strength) for 4+ months. Recent steroid burst, and I am happy to say I see our child back to herself, essentially 100%, schoolwork as well as personality. Best-- TMom