amy s

(((hugs)))) You must be nervous. My thoughts are with you guys. Keep us posted.

Hello to all. I am in the pre planning stages regarding doing a steriod burst with dd. As most of you know one of the criteria as to whether or not IVIG will work is if there is 'measurable clinical improvement following steriod burst'. I would like to hear the stories of those who have tried it with their child, including to what lengths they had to go to get their doc to give it a try and also I am concerned about the 'clinical' improvement part of that. Does it need to be medically documented by the personal pediatrician that improvement took place or what? Also, I have concerns that the current medication my dd is on is masking her symptoms of pandas. (She's been recently increased x 2 of both meds she takes). What if the clinical improvement isn't enough due to the medications? She still has meltdowns at school (had to leave early yesterday) and a few times per day having her ocd stuff going on. Hand tremors are still there and hand licking movement is still there, but much less, but most everything has finally calmed down. I admit I am terrified to take her off the medication right now. We have been through ###### and back and are just getting stable. I think her doctors would think I was medically neglecting her if I just decided to wean her off the meds. I mean, it was really bad and either she is just starting to get to a theraputic level or the Pandas is waning in it's natural course, but either way I am terrified to try taking her off them. What did others do? The severity of my dd's case is such that I can't imagine going back to no medication. Yet I HATE these meds. I mean, if the steriod burst works and we trot off to chicago to get ivig, that's great. But what if this ISN'T pandas with my child? I'd be insisting on medication changes that would destabilize her again. But at least then I guess I'd know, right? I'd know that I'd tried everything, right? Are these the things that went through your heads prior to the IVIG and even the steriod burst? Thanks for your communications... Regards, amy s

Buster, this is absolutely excellent info and all the studies are great.

Thank you for the study, EAMom. This will help. Regards, amy s

Thanks everyone for the warm welcome. There's of course more to the story. She does have a odd movement that she does which has been going on for a year or so. I don't know if it is a complex tic or a compulsion. It is where she has this lick of her hand and then she has to touch it to several places on her body. The psychiatrist thinks it is part of her OCD. She doesn't know why she does it except to say that she thinks it has something to do with hair in her nose. I know that sounds weird. I am not at all familiar with tics and for some reason cannot wrap my head around what they are. Here are some of her other OCD thoughts: besides the thought that she is going to kill me (through therapy we were able to change the word-age of this to 'silly thought'- it got too hard for me to hear over and over again and she easily was able change how she tattled as long as I knew what she meant by it. she thinks she sticks her middle finger out (she does not and has never) thinks she says 'bad words', she has not thinks she smiles when she hears someones belly grumble (she does not, has never) thinks she smiles when we pass a cemetery (she does not, has never) thinks she smiles when someone coughs. She will argue to the end that she did these things, even if you know for a fact she didn't. She is very upset by them all. I can wake her up from sound sleep..."honey, good morning, time to rise and shine" and she will sit straight up and say "mom, I just said a bad word". No amount of convincing works. Our flight (very long) from Europe back to the states was terrible because every single time that someone on that plane coughed, she thought she smiled and she HAD to tell me so. Do you know how many 'coughs' there are on a full plane ride? She heard it even through head phones, and had to say it to me every single time...even if she heard someone cough..she'd say "mom, I just smiled when they coughed" and if someone else coughed in the middle of that sentence she had to say it again immediately after finishing the first sentence. That was a long flight. Anyway, thanks for all the support and welcomes. I'm really glad I found this place. Regards, amy s

EAmom, Thanks for the reply and the information. No, I don't think that the PCN is working as far as helping any symptoms. I am very heartened to hear that your dd is in remission! I am worried about serotonin syndrome very much and want her off these meds so bad. Risperadol is causing extreme weight gain and there is concern of diabetes with that med long term and who knows what the Zoloft is causing. I will research the Azithromycin as that sounds like it's worth a try. Dd is supposed to see a ped rheumatologist, infectious disease, and neurologist (another one) soon but I still don't know when as we are waiting for approval. We got the referral to see him, but are waiting on the Rheum to say 'yes' he'll see her. We have wasted so much time that if someone in our path doesn't know about PANDAS or believe in it or whatever, then I am not bothering with them and just going to move on to the next route. So far we are very pleased with Dr. Ryser as she did about a 3 and half hour history and exam and ordered a LOT of tests. No plans are in place until all the results come back but she believes that she CAN help us, which is better than any of the multitude of docs have done. Oh, they all ordered a lot of tests too but they still just kept wanting to push us to someone else and looked at us with a blank stare. By chance, do you or anyone else reading this, have any 'peer reviewed' research papers regarding the effectiveness of Azithromycin with PANDAS? You know that helps when you hand carry stuff like that in the office. Thanks again for the response and the good info!!! Regards, amy s

Thank you Dedee for your reply! This has been one heck of a journey, as it sounds like you and others here are all too familiar with. Thank you again for the reply and (((hugs))) back to you. Regards, amy s

I just wanted to introduce myself. I have read a lot of good information on here over the course of time I've been lurking and I want to thank the people who contribute to this forum. I feel a bit guilty for lurking so long and not contributing but I just couldn't get the energy up to become involved. As many of you can relate, I'm sure, our family has really been through a difficult time and we have not quite yet gained strength back from this blow. My dd is now just recently 7 years old. She developed normally, early everything almost. She is smart, hilarious usually, quirky and adored by most people from the outset. At age 3 she had glomerulonephritis, which is thought to be from autoimmune causes. This caused a severe and significant amount of RBC's in her urine for about 6-10 weeks. Like thick V8 juice, her urine was. No bacteria, and she never spilt any protein in her urine so she was just monitored. That eventually went away. Then at age 4 she developed hand tremors so was evaluated (MRI with no conclusion) for that. The hand tremors have continued to be there and have gotten worse with things to come. August 12, 2007 my dd began to tell on herself insessantly, bizarre stuff that didn't even make sense. The next day or so, she started to tell on herself that she had 'said a bad word'. She did this 100's, maybe 1000's of times per day. Then within a few days that changed to her saying that her 'head says that she is going to kill me' (meaning, ME, her mom). Because of the phrasing of it the psychiatrists and psychologist first thought there was a rare child with schizophrenia. Eventually they diagnosed Atypical PDD-NOS. ...I remember one point thinking...'oh it's a good day, she hasn't said 'it' yet....that was after 5 minutes timing on the clock upon waking up'...but then she would say 'it'....and that was a good day. Most other days it was a good day if she said it 3 times every 5 minutes to me. These thoughts terrified her. I was not concerned that she was going to do it, no way, no how was she going to do something like that...which was one thing I couldn't get people to understand. At this time my dd and I were living alone in a foreign country and didn't speak the language. We did not have internet at that time so I could not research. We went on months like this, with me almost completely losing it too. My poor dd completely changed. Certain aspects of her personality changed. Bizarre night time terrors and urinary issues did occur. She became depressed, suicidal thoughts came and went, good days came and went, bizarre and extremely violent public meltdowns like I have NEVER seen came and went...one time leaving us stranded at an (mind you- foreign) airport for 4 hours due to the bizarreness of her meltdown. We are a military family so there was some support, but not what one can get (I think) in one's own usual circumstances. She had many many hours of doc visits of various kinds. She had a sedated EEG, had an MRI (a second one), had chromosome tests, had adrenal gland testing, had thyroid testing, lead, anything anyone could think of...including putting our family under a microscope. Personally, I am extremely anxious just retelling this bit of our story. Now we are getting settled back in the states and in the process of getting help for my dd. Our family is back together, (dh's recent deployment is over) and we are living in an area where we have nearby (4-5 hours away) family, besides our college aged kids (dd age 22 and ds age 20) in the same region. In end of June 2007 I took my dd to the doc for fever and sore throat. The rapid was negative and it also cultured negative so no antibiotics were started. However her college aged brother had scarlet fever and at that time her brother lived at home (he left for college the first week of August- went back to the states)...and the change in my dd started august 12. April 2008 was the first time anyone did a strept titer and both were + for strept some time in the who knows when past....but obviously I am thinking it must have been back in June 2007 when I took her in for sore throat and fever, but for whatever reason both the rapid and culture tested neg. I just looked it up and in case anyone is needing to know...her ASO was "HIGH" It says "Positive at 1:2 or 400 IU/ML" Normal value is Negative" Then her DNASE B was 240 with school age reference at 170 titer. That was I believe 8 months after the change in her. She started on Penicillian 250mg twice daily after the titer. She also takes an SSRI and Risperadol. I am not giving any suppliments at this time and besides a multivitamin never have. She is getting a SPECT scan this month, I wanted to mention because someone recently posted about that. Her new pediatrician believes PANDAS is possible, as did her old one. Besides him, she is seeing a pediatrician in the Kansas City region who specializes in autoimmune disorders and has given conferences on PANDAS. That doctor's name is Carol Ann Ryser. We have been in contact with Dr. K in Chicago (via email only at this point) who states he is sure it is pandas. But besides PANDAS I am worried what other autoimmune processes will be to come in the future, etc. I hate this medication and want her off of it asap, but that is not compatible with any sort of normal life at this time. School at this point is only possible about 2 and half days per week. We are hoping for someone to get to the bottom of this and get her the help she needs, obviously, like all of you wish for your own children. Again, I wanted to just tell our story and say that I've been lurking. Please feel free to contact me if someone is going through something like this similiar. My heart goes out to all of you. And thank you for being my support, you guys didn't even realize it. Amy