T_Mom

This article should be a big help to many -- Melinda Beck did an excellent job capturing facts and pertinent quotes. Be sure to see the VIDEO embedded in the online article as well -- very well done!!!

gee, I hate to have to reply to this thread, but YES our two daughters both react (OCD symptoms and ticcing at times) to any illness. tpotter has hit the issue -- "It" is an auto-immune reaction which causes the symptoms. In our case, my two daughters have clearly escalating symptoms when simply exposed to strep. Primarily OCD. As with DCMom's kids, they have gotten better with immune modulation treatments and antibiotics. We even had one year (out of the last 4) in which they both had essentially no symptoms... Both girls have been triggered by non-strep illnesses, and by strep illnesses (much more severe and long lasting reaction when it is strep) in others. Note: neither of the girls have had a pos-strep test that we have "caught".

MissJo-- I am so sorry you are going through this and that your son is dealing with this-- Was he "throwing everything up" BEFORE IVIG? Have you seen ANY change since the IVIG? (good or bad) Could the vomiting be a reaction to the antibiotics, or c-diff? I am sure you have already considered all of these. I really wanted to share with you that we currently have our older d seeing an eating disorders team as she has PANDAS Anorexia, and it is not good. We did an immune-modulating treatment and are now looking at doing another. This is nothing to play around with, everyone agrees, that even though it is PANDAS related/triggered, it is STILL ANOREXIA in my d's case. (I keep thinking of the phrase: 'If it walks like a duck, sounds like a duck, looks like a duck...') In which case she needs help and fast. My d is a teen too, and regardless if the compulsions go away, the learned habits and anorexic behaviors may linger, and that is where we felt we needed help from a team skilled in addressing eating disorders/anorexia. It is easy for others to suggest that once he gets an immune-modulating treatment his Ps and anorexia will go away, but the fact is you have a child w/ a NG tube and that has got to be dealt from all sides. While I obviously believe that immune-modulating treatments may work on anorexia if it is Ps anorexia (as we have pursued the same) I am truly wondering whether or not a child can truly "get over" anorexia (Ps induced or otherwise) without getting back to a normal weight -- and is this critical to stabilizing brain function? That is where addressing the anorexia issues comes into play, so their brain gets re-nourished to the point that it is able to settle back to normal, or perhaps be able to take advantage of the IVIG you have done? --regardless, I think you need a anorexia team pronto helping you with this, for his sake and yours. --this is a slippery slope.

If anyone has experience with turning around PANS related anorexia would you please share how you saw resolution to the issues (either here or pm) Our oldest is having anorexic struggles which appear to be PANS based. (This happened once before 4 years ago.) (Sudden onset, not just "thin" related much more an OCD related, morphed suddenly from intrusive thoughts OCD into AN, etc.) My question is: If your child has gone through AN issues w/ PANS, at what point did you see a resolution to the eating disorder "immediately" with IVIG, abx, pex? --or once the body was re-nourished to higher bmi? thanks. *(I see this has been touched on before, http://www.latitudes.org/forums/index.php?showtopic=11839, if anyone has any other experience with pex or IVIG helping I would love to hear the timeline of your experience--thank you!!!)

Thanks All-- I appreciate the info. thank you.

Hi all you parents with kids doing multiple IVIGs w/ Dr B... Is he prescribing multiple IVIGs as a matter of "typical" protocol -- is that correct? Did he indicate how many to expect at the start? -- or is the second one, third, etc. determined by symptom reoccurence?? My daughter had IVIG in May w/ a different doctor, and I am just wondering--thanks.

Hi--I am really sorry your child is going through this--I agree with Kimballot, that your best bet is to get in to see a doctor that has experience treating Ps kids. There are 3 within driving distance from you--pm me if you want their names. While there is no specific "test" the treatment, if effective, should tell you something--and certainly 30 days worth of antibiotics is relatively benign compared to what you are going through right now. Were the symptoms relatively sudden onset? If I were you I would be asking the same questions, and certainly at least trying 30 days of antibiotics to try and see if they help--

Everyone --Great job following up on this --

A similar experience -- 4 years ago at my d's "worst" episode an MRI showed sinusitis...as a result my husband asked our general ped. for abx. She was put on abx and a steroid burst at the same time...she came out of the "episode" .. and healing continued for 9 months. The change was clearly evident though with the steroids and abx, and the only way we knew was the MRI!

THIS is a great synopsis of PANDAS THANK YOU!!!

10,000 ? hmmmm....that must have been some type of protocol to include that many subjects, and some type of funding to support it! seems suspect to me, do post more info on this "paper" -- to substantiate.

GOOD HEAVENS!!! I surely hope a parent sees the post you made Kimballot--re: possible PANS !!! Now this is frightening...

Hi HT'sMom-- Good to hear from you. I will be anxious to hear the updates over the next few weeks and pray the treatment is entirely effective. It does seem that adolescent changes add fuel-to-the-fire at times. I believe you are in good hands with Dr K -- and only wish we could all sit for an hour to ask the man questions. I will be thinking of you--

Pandas16--your question to Nancy hits home to me this morning (so I wanted to chime in.) I do not believe that the issue is that anyone has "waited" to treat PANDAS. -- it is more often the case that parents may suspect a PANS reaction is contributing to their child's (essentially) physically-based mental struggles, but they are entirely unable to find anyone to HELP them. (sorry, get ready for the rant/vent) -- the issue is NOT that parents may not know, but that the MEDICAL FIELD is not responsive to the plight. The medical field is WAY behind on this one. The best thing that has happened for any of us on here, in the last 5 years, is the publicity brought about by pockets of "effort" to publicize, meet, organize, and get the face of PANS in the public eye. --AND these groups of parents are seemingly not connected!!! --except by this horrid illness. If any of us wants to "help" others get through this -- get involved when you can, once your own child is out of "crisis" mode.

I am so sorry you are going through this. DID you ever see Dr Dale? Can you at least CALL or email him to ask his advice? Sending a description of your d's experience may get him to be in touch with you. This is really a severe crisis case and your child is suffering. I agree you need a Ps knowledgeable eye to discern if treatments should go ahead or not. I agree a call to Diana Pohlman via the www.pandasnetwork.org may be of help-- Also, would anyone consider trying pheresis? Just keep an eye on the protocol that was used in the research studies (ie., NIH -- Perlmutter study for example) so the dosing and timing is done. The dose of IVIG of course is supposedly critical. Also the pheresis protocol. Dr Grant at National Institutes of Health can help you get the protocol that was used in the NIH studies, and/or is being used at the current study at NIH. *(I wonder if that would be a possible option for your child?) I agree the spinal tap by a knowledgeable doctor, and an MRI -- time to rule out all other physical possibilities if these have not been done. My best to you, don't give up hope. My d did not speak for a month--finally started with a strong steroid burst (14 days long including a taper) and full strength antibiotics...it then took 9 months and another steroid burst to bring her back.

CandKrich-- Hold steady. It has only been 9 days since IVIG. The results of IVIG may not be seen within the first few weeks. Many families have seen a turn-around at 4 to 5 weeks. Don't be desperate, yet. --that would be my perspective having been through it in late May for our youngest daughter (11)...I could see "glimmers" of our previous sweet child just fleeting -- but definite glimmers those first 10 days...then the improvements gradually built (after a year of horrible times.) The turn-around was marked and obvious, but not overnight! I would encourage you to carefully track the behaviors, the number of times, the symptoms and perhaps "rate" the day on a scale of 1 to 10 overall. Remain objective and remind him that the IVIG is going to be working to make him completely better, so he has that expectation too...then hold steady.

I think at some point you have to trust your mom instincts. Despite your fears or the words of the nay-sayers (whoever they may be in your family/friend circle.) Do YOU think your child has PANDAS or PANS? If so, then one way or another you need to get treatment for this autoimmune illness. Have courage and let us know what happens--all the best to you!

Similar symptoms -- I don't think I can pick it apart enough to analyze the type of problems, it is global functioning and math is one area that is affected (as is the ability to write coherently.)

Bulldog24--I know how scared you may feel, as I was terrified to do IVIG for our d last year. I can tell you that it made a WORLD of difference. Her OCD and severe ODD did a 180 degree turn around within 4 weeks. The year was essentially a total waste until we did the IVIG (we had used antibiotics continually--and these had "held" her for over a year...we also tried a steroid burst which did not help her.) Finally, finally we did IVIG. I was terrified, but would do it again if necessary. (We paid out of pocket and we are still dealing with insurance on it.) My regret is that we did not do IVIG the very first time she got sick with sudden onset, illness triggered OCD. We would not have lost the last few years to the Ps illness, that will always be my heartfelt regret. I wish you the very best in the study--and hope you get the IVIG right off the bat!! Spinal tap is often recommended and very understandable to rule out any other CNS infection, more scary in the "idea" of it more than anything else in my opinion--don't worry. Look down the pike 20 years and keep reminding yourself of your child's future.

I don't know if you saw this or not, but this is a list by parents of doctors they have seen-- http://www.latitudes.org/forums/index.php?showtopic=5023 I would NOT use aspirin. Some have had success with Advil though. Take care, TMom

In follow up to BeesKnees-- Two kids, now 12 and 14. We have been at this Ps "stuff" for 4 years now. It has eaten away our resources, energy, and the "normal" childhood my daughters might have had. 4 years ago Dr K suggested IVIG for my most severe d. He was right. I was too scared at the time, and we did not do it. The 4 year history for both of my d's is too involved for this short reply, but you can read our history through old posts. Yes, antibiotics full strength held very well for about a year and a half...I thought it was gone, then it DID come back, and much worse. One d had IVIG in late May, and we saw a 180 turn around. The other d will have either pex or IVIG this month. She has had a sudden onset episode now of anorexic/OCD and we are desperate. Please realise that antibiotics may work, maybe entirely help--(especially if a child is young and in the first exacerbation it seems.) However, my advice would be don't let fear hold you back from helping, no matter how afraid you.

Mom-Me, Well done--thanks for sharing this. We all are fighting for our children, and I certainly understand your mother's heart--it comes across beautifully. I hope one day we meet in person, with children well and whole. My best, Tmom:)

Hi--I am so sorry your d has been struggling. My d had a very severe Pandas OCD "storm" where she had severe symptoms including not speaking for over 3 weeks, holding painful positions, refusing to walk, age regression as well-- In hind sight, it was Pandas, though the best of the best docs in the DC area could not tell us that at the time. A strong steroid burst and antibiotics literally snapped her out of it. You do not want this to get worse, believe me, and it can be a swiftly steepening hill downward if you are not careful. In our case, my d was treated medically for what we believed to be a physical issue--basal ganglia inflammation, a Ps reaction. If the mutism continues it may "just be" OCD but it can get worse without treatment. As an aside, Mom-me, I hope you take this the right way--from one who has had a heck of a time fighting Ps for 4 years. Mom-me -- I do not think you should post your "talks" publicly on Youtube. The reason being, there are a selection of true PANDAS advice videos on Youtube by Dr Schulman which are excellent and provide accurate help for parents searching on Pandas and are labelled as such. With your "Youtube" titles having PANDAS in them, this could potentially dissuade a parent from finding some truly helpful medical advice from Dr Schulman, (if the parents were to google Pandas.) I feel you are misrepresenting what Ps is, by definition. If you do wish to post, would you please consider taking the "PANDAS" label off of the title of your posted YouTube "talks". You had some nice insights and feeling in the talk you did for this thread. I would think your kind suggestions may be a help to parents with children with worrisome thoughts caused by ANYTHING --I liked the worry-box idea. We need to get the medical community to recognize this true physical illness. I feel very badly about posting this, but we need to be very careful and work together for accuracy in labeling. My best--

Good for her!!! Thank you Dr. C.! This will be good for so many!!! I wonder what the description of the effects/results will be? It will be great to have this resource.