T_Anna

<<If you "suck up" and thank them for their concern, seem to welcome the "help" they want to give, their words will likely be less accusing. You have stepped on a bee's hive>> This made me smile. I am the queen of sucking up. I serve as the PTA president and had deliver holiday gifts, fundraise etc. We help organize the dinners and attend. I guess that is the only reason l kept DS enrolled and met with them as often as I did. This same psychologist offered to come once a week and chat with DS, we were so open, we even sent his wife a jewelry armoire for the holiday because we weren't paying him. Yes, I am getting things lined up. But I am not confrontational and neither is DH. I KNOW it's not my fault because they purposely excluded the other psychologist that I've worked with. It's a small religious school, only 500 students in the HS. It is sad that the two professionals, female and make psychologists cannot work together. People can be vicious and evil. They can have their own warped agenda. Did BCH take away this child because the parents are aggressive and foreigners? I don't think so. There were many others, they couldn't all have had poor people skills. T.Anna

Thanks School update. I spoke to someone with inside information who said the school is very committed to calling CPS regardless if he is enrolled or not. The same person said that the school is doing research now instead of before the meeting. On Monday I am bringing in Childhood Interrupted by Beth Maloney and will pursue a time to have a conference call with the author and the school. The strategy is to help them understand the illness better and to state my position clearly. I want to be aggressive without burning bridges as I have two more kids going there. This way any "aggressive" ideas will be coming from the advocate and not me. In advance, I sent the school some links to different sources about this illness. I have also started some waves within the school community and among my friends. It will be interesting to see if anything is mentioned on Monday. Btw, the new book is really amazing, even for those of us who already think we know so much. I T.Anna

He's proven in the past that OCD can be stronger than his bowels. He would go only once a week (Sundays) even when he was on laxatives and fiber, he would have cramps, but still not go. The integrative doctor wants to work on gut more aggressively in the voming weeks, maybe that will be the trick. T.Anna

Is it possible to have c-diff and be able to hold it in a few days? DS15 has his most severe OCD in relation to the bathroom. He will only oh once a week and it is surrounded with rituals. He goes to the bathroom after dinner on Sunday evenings. The past two weeks he has been suffering cramps and "not quite making it" to the bathroom on time. Last week it was Saturday afternoon. And the same thing happened last night. Sorry to be gross, but he didn't make it to the bathroom and I had to clean a spot up outside the bathroom door. It was very loose. He had an IVIG on Thursday and Friday and last night was in obvious abdominal pain. This is his 5th IVIG and he has never had a bad reaction. My question: Can OCD have such control that even with diarrhea, you could try hold it in? Also, he won't come out until he is completely "clean". The past few weeks it had become "drastically" longer and longer while everything else has gotten much better. Thanks as always, T.Anna

Thanks! We are now getting a white version. Yesterday he ended up taking it and swallowing so who knows

DS is having swallowing these lately (but not Augmentin), might be the coating?? T.Anna

We are at a private school. The only items on the table at the moment are whether or not I officially withdraw his enrollment. I don't think the principal or assistant principal have a clue about cases like BCH. Neither does the school psychologist, but he's an idiot. The reason it is so much easier for BCH is because they are covered by their twisted patients rights and the fact that they already have custody of the child (by being in the hospital). Putting DS in an inpatient facility to placate a private school?? I'll take my chances, thank you. T.Anna

<<And, with a psych and medical doctor on board, you walk in in a position of strength, you tell them what your son needs.>> Sorry, I misunderstood, many apologies. DS15 is not attending school. I enrolled him last June when we received the Cunnigham results and I was optimistic that he would be back in school this past September. Over the next few days, I will see how serious this threat is, if I feel it's real, I will politely withdraw him from school until he is able to return.

This has veered from topic a little. I don't want to debate whether I need to add a psychologist. I do. We thought that this same psychologist was going to help us (he had offered), but now it seems something has changed. I was freaked by the idea that the school psychologist was going to weigh in on my son's treatment protocol. or worse, that someone will show up at my door to take my son. T.Anna

Thanks Ifran. I was going to call a local child advocate/attorney, but figured I'd wait and see if there was one more familiar with PANDAS first. I'm not interested in Rogers. I have heard a number of stories that kids get more functional short term, but then relapse because the AE wasn't dealt with medically. DS is really in a good place besides the bathroom and yes, we have more thank one (Dr.T's first question when this started). We also live in an apartment building so there is a bathroom in the basement for real emergencies, not to mention our next door neighbors who we are close with. DS is safe and no longer talks about death, not violent, etc. He calls his friends and chats on the phone. He is even wearing an entirely clean outfit (down to the underwear) : ). I see progress, I think that DS is too therapy/treatment resistant to get much bang for my buck right now. I'd rather save my money for the IVIGs and integrative doctor and maybe a trip to Duke. T.Anna

Nicklemama & PowPow, that's what freaked me out. Hoping Beth Maloney has some good strategies about the most aggressive way to prepare. Thanks for all the support!! T.Anna

Wow, flmom. He sounds very similar to my DS15 (well, except for leaving the house), with the food and pill along issues. We got to a point last year where I paid him to take the pills. Thankfully, I don't have to do that anymore, it adds up. T.Anna

Tuition: yes, for all three. However it's reduced so I didn't want to argue about reducing it by a third. T.Anna

Clarification: He called CPS as a consult on a "hypothetical" case. Yes, the school has called, sent gifts, etc. encouraged kids to call/email/text. This was a new approach. DH and I have analyzed the meeting. We think that maybe it was meant as a push so that we add a psychologist. When I countered the whole mention of CPS it seemed like they hadn't "though it through" and were clueless. Even if it was meant in the kindest way, I feel too uneasy that they could really put a well meant call to CPS and we will be in real trouble. Thanks for all the Beth Maloney recommendations. I emailed her and we will talk tomorrow, she was appalled. I'm in shock, I never liked this psychologist (the woman is much more of a liaison/friend). I keep running over the conversation and wondering why anyone would bring up CPS without meaning to use it as a threat. Yes, PowPow, we have that other appointment, and that does make them feel better, but they still cannot imagine that there isn't a more "accepted" way to handle this illness. They ended the meeting with the psychologist asking if we would allow him to talk to DS's treating doctors. I said I'm not sure, but I will think about it. He said he just wanted to be more informed, I said I'd send him information. He said "it's one thing to hear from you, the parents, that this needs to be treated mainly medically, but it would be better to hear it from a doctor." Ughhhh! T.Anna

DH and I had a meeting with DS's HS this morning. It was called by the school and it included the Principal, Assistant Principal and school psychologist. Background: This is a private school I serve as the PTA president DS has not set foot in the school since mid. January when the flare hit and he is still registered (as are two sibs). We have just started getting paperwork in order for HB teaching The principal opened, that the school wanted to make sure that they were being responsible and fulfilling their obligations to us, to DS and to the State. He passed it to the psychologist to elaborate. The psychologist said that although he has only see DS twice for an hour each time, he sees he is worse (not sure compared to what), that DS only responded once to his emails and that was to say "No, please do not bring so and so to visit." The psychologist said that he consulted with Child Services to see if a child is home sick and if the school feels that he is not receiving complete treatment, and that the medical treatment alone is not enough, then they are obligated to make sure we add psychiatry to our treatment. He knows that we hope that the medical treatment alone will do its magic, but that DS is practically a shut in and it does not seem feasible that he will be able to cope and function even when he feels better. I was shocked. I told them that child services has taken kids like DS away from there parents for Munchausen by Proxy. DH chimed is about BCH and the case there. I said that I did not appreciate the words "hope" and "magic" being used in describing my sons medical care. I told them about the Rhode Island Conference and how difficult it is to treat a child in a flare. I quoted Dr. Storch and his comments regarding teens and CBT. I empathized, I said I understand how crazy it is to think this is a real illness that only presents with OCD. That there are no hospitals treating this. That's when the principal chimed in that there is a specialist they hear of at Yale that treats PANDAS. Background, the Board president's grandson has PANDAS (mostly tics) and was treated by Dr.Leckman. Shouldn't I try to talk to that doctor. I totally lost my composure and started to cry. I said that MANY of the severe cases of PANDAS present as shut-ins. These are children afraid to leave their bed, the kitchen, their room, these are alos children who get better. The psychologist said: "I don't think DS is part of his treatment." I said, how can you say that? He takes 25 pills a day, swallowing each one. His response, well conciously he is, but not subcon. I said it doesn't matter, if the treatment works, he will get better in-spite of himself. When he was drowing in OCD, but still at school, he worked his butt off in CBT 3-4 times a week. The issues just moved somewhere else and the whole time he was getting sicker. I reminded him that our therapist, his buddy, was overconfident in her own abilities and was telling me that 10 days of antibiotics is enough, that it stays in your system a week. I said what do you envision? Whom do you envision us adding to the team to help DS? I am so upset. These are people I know personally and now I think I need a child advocate (next thread). They back peddled and the principal said "we come here humbled, we know you are in the trenches, we just want to help." But I don't want to be naive and then have a psychologist who calls CSC beacuse he thinks he's helping!! Btw, this is the psychologist who actually read Saving Sammy! What the heck! T.Anna

Thanks Airial95, what's left : )? I will call ped and ask to bring him again if he's still feeling bad today. He's still sleeping. T.Anna

My non-PANDAS DS13 tested + for strep on the rapid test. He was on Azithromycin for a week and then I re-tested him and it was clear (ish-I wasn't 100% sure). Friday night he was feeling I'll again and sure enough more strep. He has been in 500mg Azithromycin since Friday and today he came home early because if fatigue and generally not feeling well. He keeps thinking he has a fever, but nothing shows up. He fell asleep at 5:30pm and woke at 8 full of sweat (his room wasn't warm). Any ideas? I guess I'll have to take him in, but I figure this is the best place to ask Strep questions. If it's positive and he's on Axithromycin for 3 days can he still have symptoms or should I ask for something else? Thanks in advance, T.Anna

This thread has been an inspiration. T.Anna

Good luck. It's hard with older kids, but hang in there. T.Anna

Thanks QAnnie47. I will take this a step further and say that it has also changed my two non PANDAS kids. They have such compassion for their brother. I had to go out and my pandas son was afraid to be alone while stuck in the bathroom. On his own, his younger brother lay on the floor in the hall and talked to his brother through the door until I got back. That's something I wouldn't know how to teach in a million years. Thanks again!! T.Anna

Thanks JoyBop. Not sure I'm quite "all that" but it's something to aspire to. Do you think there is anything to be gained by calling Dr.Swedo? I emailed last year and I got a response that my son wasn't a candidate for their study. I guess I can try. Thanks again, T.Anna

<<Have you ever thought about dr. Najjar?>> Yes, we met with Dr.Najjar on July 24, 2013. We did not get the same reception as others. At the time we were hoping for plasmapheresis which we ended up doing at Maimonides on July 30th. At this point, I'm not sure what he could do, since as far as I can tell, he doesn't treat with immune suppressants (CellCept, etc). I think I will try a rheumatologist, I have heard that might be a more likely route. I loved your poetic response, thanks.

On January 24th, it will be one year since DS15 voluntarily left he house, bathed, changed his clothes, functioned like a teen. Now he gets trapped in the bathroom whenever he has a BM. Trapped by OCD and rituals he's too weak tired to fight. He cries, he wants to get out. It once took him 4 hours, then 12, then 24, then 32 and now the past three weeks it has been 48hrs. I asked him why it has changed so drastically? He said because before he believed he could be cured. He thanks me for talking to him while he's in there. He apologizes to the whole family for ruining things for them. He is sweet and funny and charming. Putting him in an inpatient psych facility is not an option. We have done months of abx, anti virals, steroids, SSRIs, psych meds, supplements. We have done 4 HD IVIGs and plasmapheresis. We have definitely had improvements. Now it is almost only OCD (no urination issues, rage, brain fog, speech issues, piano fingers, etc). He only has tics after he gets out the bathroom and has been off meds 2 days (they go away with 30 hrs after he gets back to taking meds). We are planning to go another HD IVIG. Can we lick it with this alone? Should we look for someone local to start us on immunesuppressants? We are currently back with Dr.T. So far all his recommendations have brought our son back to us, but I want more, faster! We have an appointment at Duke in late January. I'm just so depressed today. Watching him stuck there and knowing how hard every step is gonna be getting back even when things get better. If you've been as stuck, please tell me your stories. Even if you've written it before I could use some inspiration today. Thanks for reading this, I know it's long. T.Anna

Heard that this has additional benefits, not just anti-fungal/mold. Experiences? Thanks in advance, T.Anna

I was reading about this on Facebook and it looked interesting. I'm not sure how it's supposed to help and whether it does help. Thoughts? Experiences? T.Anna