gemcitygirl Posted November 13, 2010 Report Share Posted November 13, 2010 I'm very frustrated right now, but I'm happy to have found this board. I have one child, he'll be five in February. My son is normally very sweet, sensitive, "laid back", artistic and imaginative. He mostly stayed at home with me until he started preschool last year. He had his first sick visit when he was 18 months old. He had strep throat and a double ear infection. Other than it being the first time he was ever very ill, I remember little regarding his behavior. Then last fall he got an upper respiratory infection, was put on penicillin. He became very hyperactive, VERY hyperactive after few days of treatment. He also started having bathroom issues after months of progress on toilet training- we went back to square one. After a about two weeks he seemed much better and eventually acted like himself again. Until he got another respiratory infection a few months later- same thing. Then in the spring again- same thing. Then in June he got pneumonia, and he became extremely hyperactive starting peeing constantly, visiting the bathroom up to 8 times in an hour. He had a daycare provider who knew him quite well, and she called me at work several times expressing concern about his constant urinating and bathroom visits, and his inability to stop moving. He also seemed agitated and tearful, and not at all like himself. At his recheck I mention all of this to the doctor, and he just sort of shrugged- just like he did at the previous episodes. Anyway, he finally got better- my daycare provider and I hypothised that it must have been the yellow Popsicles she was giving him, and it was food dyes causing this insane behavior of his. We ceased all food dyes and he seemed much better, a week after that he seemed fine (this was a week or so post finishing antibiotics). All summer was uneventful, until about a month ago, he had a rash. It looked like spider bites, and he said his neck hurt. He was also coughing, and with great dread I took him to the doctor. He tested positive on the rapid strep, had pneumonia and the doctor said the rash was strep also. He was put on cephalexin, and I made my son sit out in the area outside the room we were in, and tried to explain the issues with behavior that I knew were coming. I had no idea about PANDAS at this point, never heard of it. I thought it was penicillin type drugs that caused the behavior.... I asked him to consider Azithromycin- he had been on it in the spring and had very little behavior disorders after 2 days on the drug. The doctor blew off my concerns and said Zithromax was not a good drug for all strains of Strep. So four days after starting Cephalexin my son turned into a monster. This time it's OCD, hyperactivity, night terrors, separation anxiety and tantrums. For example- he woke me up the first morning of this episode and began asking me about when he had to take a nap. I told him after lunch, and he wanted to know when that was. No answer would suffice. He followed me around the house asking WHEN WHEN WHEN? Then eventually he had a total meltdown and was screaming he was sorry. I went ahead and kept him out of school that day. The entire day was a nightmare. The next day he went to preschool and he was fine there- but as we were leaving the parking lot he began throwing fits over naps again. Kicking my seat punching the ceiling. I had to pull over and le stand outside the car while he tantrumed for 20 minutes. This goes on for most day, particularly from noon on- he tries to pick fights, he blows raspberries in my face and walks around doing it for an hour straight. He keeps falling and hurting himself. Yet his teacher says he is acting fine in school- although he suddenly seems unable to sit up straight on the bikes there and falls out of chairs. I found this disorder after he became sick yet again this past week. Positive strep test on Thursday, with another round of antibotics. I found out about PANDAS by googling his pattern on behaviors. I called one of the doctors (the one who examined him that day) immediately upon stumbling upon this information. this doctor acted like I was overreacting- not a single child in that large practice has that disorder. He must have a tic to be considered to have PANDAS. I ended up taking Owen in this morning because he began coughing and wheezing yesterday- I was afraid the pneumonia was back. Same doctor was there today, I sent Owen out with my mom, we began talking about Owen's behavior and the doctor acted annoyed. Then right around noon, Owen started into the hyperactivity. He was making his hands fight each other, bumping into chairs and walls, interrupting us expressing concerns over naps, and blowing raspberries as we discussed his chest xray. The doctor then set him up with a neurologist. He also ordered blood work for immunoglobin and igg subclass. I have no idea if this is a good start. I really hate that there is something wrong, and it has to be this unusual and rare... I feel helpless. If they look for a tic disorder, they won't find one. I just don't know where else to go, or what to do at this point. I'm dreading the peak that will hit in a day or so after this next strep... I just hope we can see something noteworthy on the blood work that will point us in the right direction. Thanks for reading my vent, you may see me around. Link to comment Share on other sites More sharing options...
peglem Posted November 13, 2010 Report Share Posted November 13, 2010 (edited) Hope we do see you around! This is a great board- lots of support and information! I honestly think PANDAS/PITANDS is not that rare- its just rarely diagnosed. Can we help you find a doctor in your area that is familiar w/ it? Immune testing is a great start- but will this doc know what to do with it? Edited November 13, 2010 by peglem Link to comment Share on other sites More sharing options...
gemcitygirl Posted November 13, 2010 Author Report Share Posted November 13, 2010 Hope we do see you around! This is a great board- lots of support and information! I honestly think PANDAS/PITANDS is not that rare- its just rarely diagnosed. Can we help you find a doctor in your area that is familiar w/ it? Immune testing is a great start- but will this doc know what to do with it? Thank you, and I bet you're right. We have a family history of OCD and ADD, so I'm sure that is part of it. We are in the Dayton, Ohio area. If anyone knows of anyone, that would be great. Thanks again for your reply! Link to comment Share on other sites More sharing options...
PhillyPA Posted November 13, 2010 Report Share Posted November 13, 2010 Don't waste time with just any neurologist. I can't tell you how many we have seen who had no clue. Take your child to a pandas specialist. I recommend Dr. Beth Latimer in Besthesda, Md. She is a neurologist. Her office phone number is 301-530-9200. Link to comment Share on other sites More sharing options...
P_Mom Posted November 13, 2010 Report Share Posted November 13, 2010 Don't waste time with just any neurologist. I can't tell you how many we have seen who had no clue. Take your child to a pandas specialist. I recommend Dr. Beth Latimer in Besthesda, Md. She is a neurologist. Her office phone number is 301-530-9200. I totally agree! Don't waste time!! Link to comment Share on other sites More sharing options...
colleenrn Posted November 13, 2010 Report Share Posted November 13, 2010 What antibiotic is he on now and at what dose? This is really important right now b/c it sounds very likely to me that you are dealing with PANDAS and you have to treat strep infections aggressively. That is good that you are having some immunology bloodwork done. If you do bloodwork, you may want to add in a test for mycoplasma pneumonia and do strep titers to get a baseline (ASO, ADB). Colleen Link to comment Share on other sites More sharing options...
Tamistwins Posted November 13, 2010 Report Share Posted November 13, 2010 I am sorry you are going through a difficult time, unfortunately many of us can relate. I just wanted to mention that blowing rasberries may very well be a tic. My son had and now has again a kissing tic. Speedy recovery! Link to comment Share on other sites More sharing options...
aidansmom Posted November 14, 2010 Report Share Posted November 14, 2010 I am sorry you are going through a difficult time, unfortunately many of us can relate. I just wanted to mention that blowing rasberries may very well be a tic. My son had and now has again a kissing tic. Speedy recovery! What is the kissing tic like that you and surfcity mention? Link to comment Share on other sites More sharing options...
tpotter Posted November 14, 2010 Report Share Posted November 14, 2010 I'm very sorry that you are going through this, but if you keep visiting this site, you will find that there are a lot of kids that have these problems. I am completely convinced it is not rare, but many doctors either have not heard of it, or they refuse to accept it exists. I work with children, and have identified 7 children who I HIGHLY suspect as having PANDAS...2 have already proved positive (my caseload is only about 16, and it is not a "unique" caseload!) That's why other forum members have suggested not wasting your time with just anyone. You will save yourself great time and aggravation, and be able to help your son much sooner. This disorder is believed to be related to Sydenham's Chorea, and possibly rheumatic fever, lupus, and others. A lot of families (including my own) have found that our children also had previously undetected Lyme. I do agree with considering using Dr. L (the neurologist), but it also sounds like there is definitely some immune issues going on, since your son seems to get a lot of infections. From my personal experience, I would also consider getting an immunologist who understands the disorder to help get you the right tests, and knows how to interpret them (again, not all immunologists do.) There are several options. If you PM me, I can give you some suggestions. Good luck. Link to comment Share on other sites More sharing options...
Megs_Mom Posted November 14, 2010 Report Share Posted November 14, 2010 Our daughter started at age 3, had long remissions, and NEVER had a tic. It is NOT required by the definition of PANDAS, and any doc that tells you it is, simply does not understand the disease. Bring them a copy of Swedo's orginal 50 cases - all research into the disease requires sudden onset of either OCD or Tics. They are likely annoyed because so many doctors don't like to look at what they do not yet understand - and very very few understand PANDAS. I agree with the above, go to a great doc, especially as you are catching this early. The earlier the better. I am so sorry you are both going through this. Dr. L is terrific. We also have some good docs here in Charlotte, although with very long waiting lists. Link to comment Share on other sites More sharing options...
gemcitygirl Posted November 14, 2010 Author Report Share Posted November 14, 2010 You guys are awesome! I'm so grateful for all these offers of help I could cry. I will take you guys up on it, and come back tomorrow to sort through your messages and reply. Tonight, I had to get out of the house, while I still could. Owen seems better than his worst last month but he's still having tantrums, OCD symptoms and sleeping issues. The huge difference is (for the time being) I can somewhat reason with him. But with his just having started antibiotics on Thursday- I know the pattern. It seems like it takes a week and a few days after the illness starts for him to hit bottom. The thing is, I knew something was very wrong last fall, but I feel terrible for not recognizing the bathroom issues and nap thing as OCD in the beginning. I guess I thought it to be "oppositional behavior", rather than fear. The nap thing is new this time, and I fought back hard against him- we don't spank here, but we had timeouts. He would howl and howl until he fell asleep on the couch. I did this because I thought that his behavior in part was from exhaustion. But then he would wake up screaming- so I wondered if it was nightmares that he was afraid of. I should have seen it though, I was OCD as a child, and mine seemed to come and go also. I know there were times when my own mom couldn't reason with me, and having heard about and witnessed Owen's behavior patterns over the last year- she's worried that he's going to suffer what I suffered- esp in school. My disorder was a bit different from the norm, a lot of magical thinking and silly rituals. I was afraid of tornadoes in February one year.... Even now I'm still somewhat OCD as an adult- door checking - it's mostly hormonal I think, and it doesn't really interfere with my life. BUT I have the ability to combat it with tools I learned in cognitive therapy, Owen does not- though I'm working with him when he is calm enough to take in information. OCD doesn't affect my self esteem anymore- but Owen thinks he is "bad". I thought I was bad also as a little girl. That breaks my heart. I'm trying to walk the fine line of not allowing him to reinforce his behavior lest it becomes acceptable (like hitting and kicking), while trying to relay to him that I understand. And I know this is only a small part of it. But for the time being, I guess it's all I got! Oh and Colleen he is on Cefdinir 250MG, 1 tsp a day for 10 days started on the 11th. He's still coughing and he sounds very congested. And the face raspberries were attempted kisses! how strange, I'm guess that's what you guys were referring too. Although he laughs and continues to do it until I get upset or he thinks I have- then he'll scream "I won't be bad! Don't make me take a nap! Pleeeeaaaase!" However, sometimes I can hear him do it in his room, if I tell him no he does it. Sometimes he just walks around doing it- during his October mega bad week he did it a lot for an hour or more. If I manage to make him laugh and he'll stop, but its boredom or anxiety over naps maybe? His teacher has not seen this one time- I called her on Friday. The doctor believed it was a ritual or compulsion when he witnessed it this morning. But this doc has his head up his butt when it comes to this so who knows. Having said that, I have some questions about doctors so I'll be back tomorrow. Thank you again guys! Link to comment Share on other sites More sharing options...
thereishope Posted November 14, 2010 Report Share Posted November 14, 2010 (edited) Welcome. Can I start by saying that this whole idea of docs automatically dismissing PANDAS due to a lack of tic is really bothering me on a personal level. My son did not have any tics at all. To think that if I took him to any of those docs that said that, he may still be suffering and his condition would have went undiagnosed and detected sickens me. As for that doc saying he has a large practice w/ no PANDAS...well, they probably have PANDAS and just never diagnosed it in those kids. Anyway.... you've gotten some good questions/advice on here. Here are some useful links you can look through. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Edited November 14, 2010 by Vickie Link to comment Share on other sites More sharing options...
SarahJane Posted November 14, 2010 Report Share Posted November 14, 2010 Here's my 2 cents...tho' some of it's the same as the others. Just call one of the experts. Get your kid the dx & then worry about finding a local doctor. That's what I had to do. Or do both consecutively. My ds(6) has what I suspect is early onset PANDAS, but bigtime exacerbation hit after he had strep last Dec. Behavior changed within a month. We thought it was school issues (and I'm still convinced the stress he experienced there was a BIG factor). I found PANDAS in May & took it to my dr. I too found it thru Google after trying to figure out what was going on with my kid. (I didn't find this site then OR I probably would've pushed harder than I did back in the spring.) When I talked to my dr, I was told it couldn't be PANDAS for various reasons, which I know now were bogus. I met with our doctor EIGHT times to discuss behavior and/or possible illness from March - May...and she still said no PANDAS. I focused on getting him out of kindergarten in as few pieces as possible (we had an official anxiety dx)...and over the summer he got a bit better. Then he got sick with a cough at the end of Aug...I took him into the dr's office mid-Sept for a strep test based on the mental illness symptoms I was seeing (ds is asymptomatic for strep...like many of our PANDAS kids--he had vocal tics, fears, OCD, rages & more--basically, it was a "classic" PANDAS presentation of strep). The swab was negative & the doctor told me I needed to take him to the psychiatrist & put him on meds for the anxiety. Then the culture grew & he DID have strep, so I expected the dr to at least consider PANDAS. Nope! We had drawn titers in order for me to get abx, so the titers were too low for PANDAS (or so I was told, but again...that's bogus as the culture actually trumps the titers to show a current infection). So I go to another dr to try to get a 2nd opinion...nope, not PANDAS...my kid had PDD-NOS according to her (but he doesn't! & she wasn't qualified to say that anyway!). And, I want to tell you that both of the doctors I saw locally said they have PANDAS kids in their practices & treat them. They knew what it was...CORRECTION...they thought they knew what it was. So, even if you're successful in finding a local dr who has PANDAS patients, don't automatically assume that your son will fall into their definition. When I talked to Dr. K, he said he was 95-100% sure because nothing else would have the symptoms we were seeing. Nothing else. We got our dx from Dr. K on 10/13 & go for IVIG in Chicago this week. I did find a local doctor by asking around for a referral...he'd never seen PANDAS but has read the book (Saving Sammy) that I gave him & other materials. I also believe, like many others on here, that PANDAS isn't all that rare but rarely diagnosed. So...don't waste your time. Call one of the experts and get their advice. It'll take at least a week to set up a call...maybe more with the holidays coming up, & they'll want medical records, so go ahead & get a copy on Monday. You've done a lot of thinking about past illnesses, so you already see the pattern. My son got all wild when he took abx...or so I thought...now I figure it was PANDAS but I didn't know it then. Looking thru his medical records let me realize that many times when he'd been sick, I could remember issues at preschool or home or whatever. He was also basically sick off & on from 2.5 (1st ear infection) until just before he turned 4.5 (when he got his tonsils out). Then just one sinusitis & seasonal allergies & a 1-day virus last fall...then his first dx of strep throat in Dec & our world got turned upside down. Another dx'd case of strep this past Sept & everything went even more topsy-turvy. Good luck! There are several other sites with articles you can take to your doctors & schools. This forum is a great place to find the answers to your question. Here, we know where you are coming from & what you're going thru & you have a virtual support group that's there behind you during the darkest hours. Hang in there! P.S. Not sure how the immune panel will turn out. Even if the numbers are normal, it doesn't rule out PANDAS. Likely your doctor is looking for another way to tell you no. (I have trust issues now...can you tell?) You may want to stay at the same practice for various reasons, but I'd advise you to go ahead & start looking for a new one. We stayed after previous issues when our son was young & just would only see certain doctors. BUT, now I wonder if we'd switched back then if we'd have had to go thru everything we went thru while we stayed there. So...I say now that if you sense issues just go ahead and switch. It's your son's health & your insurance & your co-pay...you do not need to feel compelled to stay where they don't want to listen to you. YOU know your son better than any doctor could in the 15 minutes they see them when they're sick or getting a well-child check. If you stay with this practice, just be prepared when they start using these "behavior" issues YOU keep bringing up to explain the development issues THEY'RE seeing. (Again, yes, I know I have trust issues, but they're there for good reason.) Link to comment Share on other sites More sharing options...
Tamistwins Posted November 15, 2010 Report Share Posted November 15, 2010 I am sorry you are going through a difficult time, unfortunately many of us can relate. I just wanted to mention that blowing rasberries may very well be a tic. My son had and now has again a kissing tic. Speedy recovery! What is the kissing tic like that you and surfcity mention? Link to comment Share on other sites More sharing options...
Tamistwins Posted November 15, 2010 Report Share Posted November 15, 2010 My son would purse his lips as if he was blowing me a kiss. Seemed sweet at first then I noticed it was a tic. He would want me to mimick it back. Then it got worse, he would actually need to physically kiss me but can be my elbow or butt, wasn't just a sweet kiss on the cheek. Before he goes to bed needs to kiss both of my cheeks then hug and a routine goodnight. I researched this alot finally found a site where they listed a kiss as a tic, think was tourettes site. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now