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I agree find another neurologist who treats it! Classic symptoms!! Good luck Keri!! You know your child best!! Is it just me or are more parents coming here quicker? I find comfort in that...especially since my son was not a sudden-onset and probably falls into the "chronic" pandas category. He is 10 yrs old now, and had his first (and only) positive strep at 2. If more people had been aware of PANDAS then maybe we wouldn't have gotten to this point! It is wonderful to know that all our efforts of getting out this information are paying off!! Once again...Good luck Keri!!

Anyone thinking about going to OCD conference in July (I think) in D.C.? Some PANDAS will be discussed. Thinking about putting in the request for a "kitchen pass" as my husband and I call it...just wondering if anyone will be there to join me. Sarah

Oh yeah!! This is definitely our situation!! Frustrating isn't it?! You almost feel like the catalyst sometimes. The most frustrating part, for me, of this aspect of the disease is explaining it to friends and family. That was everybody's first question, and inevitably I would end up justifying the situation. It is bad enough you have to explain the disease everywhere you go, but then everybody wants to play psychiatrist for you. Even some of my biggest supporters had trouble understanding this part of it. They would try to "work their magic" when I was not around, and solve the problems for us. I have wasted soooo much time answering and defending the "why doesn't he do it when your not around" question to others, my husband, and myself. It just takes one little remark to plant that seed of doubt, and it puts you on the defensive. It really isn't fair!! Things would have been so much better during this latest exacerbation, if I could have put all that energy into other things besides wondering/defending why he only does stuff around me. Just try to keep in mind that it is absolutely a part of the disease, and it seems to be that the mom gets the worst. Some can control it to an extent, not that they realize it. I was so relieved to know the doctor thought this was perfectly normal for a pandas kid. Hope this helps!! And remember, we are all here for you!!

Sure!! I'll be your friend!! Ah yes.. Dr. K and NIMH . Thanks!! You think if I get these organized my husband will look at them?

After putting all this stuff together...I'm almost positive my older sister has it. Joint pains for years, autoimmune issues nobody can quite diagnosis (not lupus, but not anything else), behavior issues over the past few years during huge periods of stress. I think it has even been proven that she is myc. pneum. carrier. It is just a matter of time before they come up with the adult version, and hopefully, the adults won't have as long to wait as our kids!! And I have been paying close attention to myself too, trying to piece together memories, not sure...the jury is still out.

Ok...I am updating my pandas bookmarks...just so I get this right... Information is available at the following sites - this forum Pandas Network Dr. T's forum on Yuku Pandas Foundation Pandas Resource Network on FB there is Pandas Pepsi Beth Alison Maloney/Saving Sammy pages Any others I'm missing?

I don't think PANDAS has its own diagnosis code, and that is part of the problem. The docs all use other codes that sort of describe it but not really. I don't know what it would take to get pandas it's own code, but I feel like if it had it's own number that would be some recognition/acceptance, and the insurance companies might have to recognize it more. I feel like that might be small step in the right direction. I think I might go research that...

Is this the same bloodwork to check to see if anyone is a carrier? We need to get this done, and I am going to have to tell my doctor exactly what I need.

Some subtle changes/improvements since coming home Fri. He is eating and walking more on his own, washing his hands less, and actually playing with toys again. In fact, just now, for the first time in over a month...he walked out of a room, I got into something, and 10 minutes later had to stop, and figure out where he was. Good bye Separation Anxiety!!! (maybe? )

We just had pex last week at Georgetown, after a battle with the insurance company. It is BC/BC Federal Anthem, and because we were seeking services above a certain geographical marker, Carefirst of Maryland was overseeing it. We were on our third review. I'm not sure what happened at the end. I think some pediatrician came in at the end, reviewed it, and basically revoked the doctor who denied it the week before. I had written this long letter to the insurance company detailing all his daily activities of living and how he couldn't do them. Apparently, the denying doc ignored the letter or is extremely cold-hearted because I didn't sugarcoat the situation at all, and basically, told them they could pay for the pex, multiple stays in psyche institutions, or attend his funeral. I finally had a number that would get me close to a voice mail for the denying doc and left a voice mail. They don't make it easy to contact anyone. I told him I wanted to make sure he received the letter, and, literally, used the term "life-threatening" in every sentence. I said my son was refusing to eat, and was danger to himself and others. My last statement was something like...'just wanted to make sure you understand the situation is life-threatening and as long as your willing to accept responsibility for that." Pretty much, laid it all in their laps!! Within the hour, somebody called and said it was approved. I don't really think it was the voicemail, but it felt good. Also, interesting was about an hour after that the denying docs office called me to say that he had denied it last Friday. Pretty funny, huh? Guess they don't talk much between offices? I happily informed the lady that I had been told an hour ago that it had been approved. She was surprised!! That is why I think a pediatrician came in and reviewed it again and reversed the original docs decision. Part of the problem is there is no actual ICD9 insurance code for PANDAS. Looks like if the disease at least had it's own insurance code number it would a step in the right direction of getting companies to recognize it. I don't how to get it a code, a petition from all of us stressed out parents maybe? Anyway so we got it, and now we are waiting for results... But you can tell your insurance Carefirst approved it. And, Good Luck!!

I am very interested in the results. I had strep B and was given antibiotics during delivery. I have mentioned this to docs, but no one has ever made a connection.

I know what your going through. Been there and know that feeling of despair. My mom is still there for me and my daughter is now 17. Don't do the psyc ward they would not have a clue. BELIEVE ME!! A supportive family and people willing to help you is your best choice. Is your daughter better at your mom's or is her behaviour the same there? It seems to me that that alot of these children target there moms. Thank you, Thank you for saying that about the "moms"!!! I am printing this out so I can carry it around and show it to everyone. It is gonna save me a lot of talking. I get so tired of defending my relationship with my son!! I have to explain this aspect of the disease to everyone...even my biggest supporters and the people who "understand" the most!! I really get tired of explaining it to my husband every other day!! It is so frustrating!! Nobody gets it!! And I'm tired being made to feel like a bad mom!! I'll be the first to admit things aren't pretty here...there are good days and bad days for both of us...but we are plugging along. And I feel that when we get through this...our bond will be that much stronger. Well don't want to get off topic...just a BIG THANKS!! Thinking about you EarnestFamily!!!

Yes...Thank You!!! Happy Trails!!

I'm so sorry for you earnestfamily...I'm praying for you! We have been walking that fine line ourselves the past 3 weeks. Tried Ativan the first week...Benadryl helped just as much. One night last week I finally gave up, and called the rescue squad cause I didn't think we could get him to the ER alone. He had spent practically the whole day screaming, we couldn't do anything to help him. Of course he settled down long enough for them to put us in the ER waiting room, no hurry, kid seems fine!! After several minutes though he started getting more and more agitated. I finally got them to put us in the back in an unused room, but still not to be seen. Two hours later, around 10:00 pm I sent my husband to check when we might get a room. I don't mind the wait, but at this point I was tired of appeasing him in the ER, and I might at least have a shot of getting him to bed at home. In the process of checking on this, my husband overheard the nurses laughing at our son's behavior. Needless to say, between the wait and the unprofessional behavior we left. I managed to give the nurses a quick lesson in PANDAS and kindness before we left though. The next day I called our local psychiatric facility, just in case we got desperate again. They were very nice and sympathetic, but pretty much told me they probably couldn't take my son because there is an underlying medical condition. Interestingly enough, we dealt with a similar scenario with my dad a few years ago. He has Alzheimer's and that, like PANDAS, falls in that gray area, where its hard to get help medically, and the psychiatrists can't or often don't seem willing to help because it is "medical" and they dare not cross the line!! Anyway...I guess what I'm trying to tell you is that calling your mom was probably the best thing to do!! The ER just ended up upsetting us all the more. If we get bad off again, I don't know what I'll do, the psyche ward, another ER...who knows!! One day at a time...I guess? Remember we are all thinking about you!! And I agree, thank you Dr. T., for all your dedication and care for these children!!!

Thanks everyone for the information! I think I will start writing it all down so I can organize it in my thoughts. Faith - you asked about sore throats....I forgot to include he had scarlet fever when he was 2. And last year, he had recurrent sore throats which never tested positive for strep. He also had a history of snoring and waking up very tired in the morning...so the ENT decided to remove the tonsils/adenoids. Dr. L is the only doc we talked with. She felt things were getting too bad too fast...and since the antibiotics and tonsil removal didn't help...she felt pex was the way to go. More and more, I'm thinking I want to follow-up with an IVIG. I hadn't talked with Dr. L about it. Do you think she will even consider it or will we see another doc for that? My son is definitely more compulsions than tics, but he has had both.

Thanks...we'll need it! A little over a year ago I started to notice issues with my son 9 ...mostly behavior. By spring, the behavior issues had grown and his tactile defensiveness had also increased. He was diagnosed with sensory integration disorder when he was 5 so some behaviors we were use to and could write off as that, but when they didn't go away...I knew something else was wrong. He had been sicker than ever last school year with frequent sinus infections and sore throats, but they never tested positive for strep. In April/May, I began noticing compulsions, and I remember saying "uh-oh". When he was 5, we saw a 6 week spell of compulsions, which was considered ocd caused by the stress of the upcoming kindergarten year. At the end of May, he had a strange rash in the groin area which was dxed as bug bites with impetigo. The day I kept him home from school for that was the first real day things were bad. He wanted to go play catch with me, but he couldn't because he couldn't get his shoes on the exact same way on both sides...we now call this "being even". I had seen info about PANDAS on the ocd web site, so when I mentioned it to the doc who was treating him for his sick visit she told me there wasn't really much treatment different than normal ocd especially if it wasn't affecting his daily activities of living. It was of course...not to the same extreme as now...but I wasn't vocal enough. He had seen a behavioral therapist when he was 5, so I figured we would go back and see her. So we struggled through the summer with behavior and the compulsions...not really realizing they were compulsions yet...and by July I was ready to revisit the PANDAS info thanks to a chiropractic neurologist. Our pediatrician started him on Lexapro for the behavior/anxiety and ordered blood work. We found out the strep came back negative, so once again I was disillusioned. Then Saving Sammy came out and my mom saw the interview on the Today show. She called me to tell me how much this looked like my son, so we were more convinced now than ever. My ped. said okay when I said I really felt like this was it and sent us to a neuro. His bloodwork also showed possible celiac, so we went to a gastro doc (he felt there was a slim chance he had celiac.) By the end of Oct. we saw Dr. Latimer. He was treated with steroids and Augment 475mg with not much improvement. She ordered more blood work, but I not sure if our local lab sent it to her. My ped. office told us it was negative, but I have never seen any numbers. (This drives me crazy.) Dr. L also recommended his tonsil/adenoids come out, so that was done at T-giving. We went a few weeks without abx, but by mid Dec. he was back on them. We saw some improvement after the surgery, but at Christmas he caught a cold and things got worse. He has pretty much been washing his hands ever since. Dr. L. saw him at the beginning of Jan. She didn't like the looks of his hands, and the fact that he has lost weight. Food makes him "sticky", so he doesn't want to eat. In the past week, his compulsions have quadrupled, probably for a number of reasons...slight cold, stopped Prozac due to lack of inhibition, and we sent our daughter to live with my sister (the strain had gotten too much for her). I am lucky to get one meal in him (usually soup), and we are attempting to keep weight on him with unlimited milkshakes. He was going to school, but hardly in the past 2 weeks. Luckily, I took a short leave of absence from work for the pex because otherwise, I would be able to go. I hope we can make it to Tues....I'm afraid if we can't do the pex we might end up at a psyche hospital. We had to call the on-call doc on Sunday, and she gave him Ativan, but I can't say it helps. Benedryl does just as well, and I feel safer using it. His psychiatrist gave him Depakote to start after the pex, but I'm tempted to go ahead, especially if the pex isn't happening on Tues. Ugh...now I think I have moved from his history to complaining. Sorry!!

We hope to be doing plasma exchange next week with Dr. L (as long as the insurance company comes through). Does anyone have any advice for during or after? What to expect? Chances that it will work? Anything?

I'm praying for you! It is heartbreaking! And, unfortunately we all have those times! I've been feeling guilty cause I started giving my son Benadryl so he fall asleep easier at night. Hang in there...I'll send good thoughts your ways!

I hope the snow didn't keep you from your appt. with Dr. L! We saw her Tues. and they are working on scheduling our PEX. Sending good thoughts your way!!

Good luck!! I'll be thinking about you!! We go see her tomorrow...

I think this applies to us too, not sure. I need to absorb this more, printed it out on paper so I can really study it. Thanks again Dr. T for all your hard work!!

Vickie, Thank you for asking!! Sorry haven't responded sooner! Been crazy lately, full-blown PANDAS and husband with a kidney stone. Fun! My son is waxing and waning. Back in October we saw Dr. Latimer, and she placed him on steroids and antibiotics. He had his tonsils out at Thanksgiving, per Dr. Latimer, and I do feel that helped. We had relief in some areas. There was a lapse in antibiotics for a few weeks, but he is now back on them. He has been one Augmentin 500mg 2x/day, Prozac 20mg for about 3 weeks. Was doing better, except for the occasional tantrums, and compulsions were manageable for both of us. A few days before Christmas he got sick. Two days later the compulsions got worse, and hasn't stopped washing his hands since. His little hands are so chapped. On Christmas Eve he was in the shower at 11:30 p.m. because he was feeling sticky from candy canes he ate one week before at school. Ugh!! I'm sure a lot of this has to do with irregular routine, can't wait for school. He pulls it together for school, at least right now. We see Dr. Latimer next week.

My son stopped wanting to wear his seatbelt a couple of months ago. It makes him "sticky" along with most everything else. I reluctantly relented out of desperation. It drives me crazy,and I feel bad for not enforcing it, just hope nothing happens. Last night while we were riding with my friend, I let her make the call since she was driving. She eventually got it on him, but then we paid for it later at bedtime with a full-blown tantrum. If I hadn't with been with him, I'm sure he would have done whatever my friend asked him to do. Anybody else have seatbelt problems?

I found it on the internet, specifically the ocd foundation web page around last April. My son had a bout with ocd when he was 5. He is now 9. Last Christmas I started to notice behavorial issues with my son...something was not right. He had been dxed with sensory intergration disorder, and was currently undergoing intensive 3 month vision therapy. So the behavior issues got blamed on the sensory issues and possibly the adjustment to the vision therapy and the improvement in his eyes (which worked wonders by the way). However, my instincts knew something else was going on. In April/May I noticed a tic I hadn't seen since his 6 week episode of ocd when he was 5. It was blamed on stress then, and the impending kindergarten. Last year, my son had been sicker than ever with constant sinusitis and sore throats, never positive for strep. He had scarlet fever when he was 2. On one visit in May I asked the doc treating him (not his regular pediatrician) about PANDAS. She said if is not affecting his daily activities there really wasn't much different to do than the normal treatment for ocd. I am afraid I tend to downplay my issues when I get with a doctor, but at the time it wasn't so bad. I ended up taking him back to the behavior therapist he saw when he was 5, because that is what we did then and I figured that is all he needed. Needless to say things got much worse, especially behavior, and we ended back at the doctors. We visited a chiropractic neurologist in July who offered several different therapies for kids having problems. On his exam, he felt like my son's ocd wasn't typical ocd and advised having him checked for PANDAS. The next day we were seeing his pediatrician and I mentioned it to her. She was very receptive and we did blood work. Unfortunately, my son's bloodwork has never shown anything so once again it was put off for a month or so. It wasn't until Beth Maloney and Sammy were on the Today show. I had been looking at all the PANDAS info again because ever since I read about it in April, I kept it in the back of my mind, but then my mom saw the interview. She called me and said this looks just like my son. Once I watched it online, I was convinced. We asked the pediatrician if the blood tests were conclusive. She said no and sent us to a pediatric neurologist. By Oct. we ended up with Dr. Latimer. Interesting note: in August a cat "adopted us"...just decided this is where he was living. The sweetest cat and he just loves my son. He has come to sit in my son's lap during a tantrum and calm him down. The kids named him Sam. By Sept. Saving Sammy came in to our lives and saved us. I tell my son it is no coincidence that we saved Sam the cat, and then Sammy saved us.

I totally understand where you are coming from Tattoomom, and agree with what Dut and Momto2Pandas said. Men just see things totally different, which is extremely frustrating. It is such a shame...the pandas is hard enough, but when you have to convince your spouse it is even harder. We wasted a lot of time because I felt in my gut something was not right, and he didn't back me. We always had other issues to blame it on...sensory integration disorder and the brief period of ocd my son had when he was 5 (obviously before I knew about PANDAS). As a result I started second guessing my instincts. Believe me, I will never do that again! Finally, after things got so bad with his behavior, my husband had to start going to appts. with me. At one the PANDAS dx got mentioned by one doc. which gave me the encouragement to pursue the issue with his pediatrician. So he was at least there to hear a doc say maybe it is this. If I had told him that I had been considering this for months and had already presented it to one doc he would have told me no way. He had to hear it for himself. He is finally on board with the dx, and can at least describe it to people. However, he won't read up on anything...not even Saving Sammy...he only skimmed it. Even my 60 yr old neighbor read the book when I gave it to him because he had to "save" us during a bad tantrum one night. It is very frustrating...I just don't get how they can stand to be uninformed. The worst part is...even though he will talk about it intelligently to people now...he can't get past the compulsions. He constantly questions my son about them and complains about them. So as a result...I am the only one that can turn on the faucet or carry him from place to place. My son will ask my 7 yr old daughter to turn the water on before his dad. Ugh!! Ok...I think I have crossed the line into venting. Just wanted to let you know that I know how you feel and you are not alone!!