NMom

How is your son doing? Dr. L did not initially give me a RX for steroids but I traveled back to DC a second time and asked for a prscription just in case. I haven't used it yet and am not sure if I should now or wait to see if this is progressing. I'm tracking how much I see the OCD and my son is doing an 'experiment' where he logs how much he feels the OCD daily so we can see quickly where this is headed. I'm curious why Dr. L would suggest steroids for your son initially but not mine. Have you had any exacerbations since the initial diagnosis?

Thank you. I read your posts and I know that you have dealt with so much more than I have. I have prayed for you and your daughter and I appreciate your words of support.

I have to start this post with full disclosure - this is about me, not my son who was diagnosed with PANDAS and I'm going to whine for a bit about how unfair this all is. My son was diagnosed last summer after a sudden onset of tics and OCD symptoms following strep. No one here (in Houston) would even admit that PANDAS exists much less diagnose it so I took him to Dr. L. I did manage to convince my pediatrician to give us 3 months of antibiotics which got us through until we could see Dr. L. It all happened so fast. One day DS was fine, the next he was telling me he felt like something was wrong in his brain and four weeks later he was moving fast towards non functional. We dealt with it...just like everyone else. You push aside everything else going on in your life and you become a machine...my whole world became a series of acronyms and medical terms... Anti-DNase B, ASO, IVIG, PEX, Augmentin XR, etc., etc. Then we saw Dr. L. She told me that she had rarely seen anyone get diagnosed and treated this quickly and that with antibiotic treatment there was every reason to think he would recover fully. I thought we were blessed. And over the next few months, the antibiotics and ERP therapy worked and he became symptom free....or so I thought. Then I started to deal with the ramifications of what this all means...will it pop up again, what happens if the antibiotics stop working, etc., etc. Since the day this started (May 16, 2010), I feel like I've been standing at the edge of a cliff and one word from DS, one odd behavior, one abnormal reaction and it's like I've been kicked off the edge. So here we are today...two days ago he told me that he was feeling the OCD again. He also told me at different times that 1) it never went away or 2)that it went away and now is coming back...regardless of whether it was ever compeletly gone...it's back now and he has been saying for months that he didn't feel it at all. He's now telling me that he was lying sometimes because he is fighting back and can handle it. He's seven. I know that this is nothing compared to what so many of you are going through and I hate myself for being so weak and scared when my kid is fully functional. But I don't know how tall this cliff is and if we're going to get to the bottom again and I'm scared. I've been crying for the past two days and even though I know the steps to take (upped his antibiotic, treating with motrin and let his teacher know to watch for anything out of the ordinary), I'm just flat out scared of what I know can happen. I have no reason for writing this other than that I know someone on this forum will understand the feeling and just maybe there is one other person out there who has a story of recovery that they can share....something for me to hold on to.

Dave - I think I was sitting at your table that night as well - right next to you and your wife if I remember correctly. I was picking everyone's brains about doctors as well and we had an appt with Dr. L that following week for my son. If I'm correct...I remember your story very well and am so happy to hear how well your daughter is doing now! Good for you for pushing the issue and getting her the help she needed! Rachel

Well the fun continues. My nephew is now at the ER with what looks like croup (woke up not able to breathe last night). My son is having terrible stomach pains (last night), diarrhea and nausea (this morning). He's been thinking he's going to throw up but has only thrown up a very small amount once. No fever. This seems so minor right now ... he's running around and seems to feel just fine now but I'm terrified about c-dif or colitis. I've been lazy about the probiotics while we were on vacation...just out of my routine and forgot with all the excitement. Does anyone have experience wiht C-dif? What are the main symptoms and how should we treat it? I'm terrified of c-diff b/c it means he'll have to come off the antibiotics.

Well the fun continues. My nephew is now at the ER with what looks like croup (woke up not able to breathe last night). My son is having terrible stomach pains (last night), diarrhea and nausea (this morning). He's been thinking he's going to throw up but has only thrown up a very small amount once. No fever. This seems so minor right now ... he's running around and seems to feel just fine now but I'm terrified about c-dif or colitis. I've been lazy about the probiotics while we were on vacation...just out of my routine and forgot with all the excitement. Does anyone have experience wiht C-dif? What are the main symptoms and how should we treat it? I'm terrified of c-diff b/c it means he'll have to come off the antibiotics.

I am with my family for Thanksgiving and my nephew has been on antibiotics for strep for almost 10 days. He has chronic strep but has never had any PANDAS symptoms. I felt pretty good about this trip because he was already on antibiotics so it seemed like a good time..and I know that my son (PANDAS - age 6) is exposed to everythign at school anyway but it still makes me crazy know that there is a specific exposure to strep. So my nephew woke up this morning with fever and sore throat (while on antibiotics). My sister immediately took him to a local clinic and they refused to do a rapid strep but did a 72-hour test...but also refused to extend his antibiotics until they have the results. She's already called his local pediatrician to ask about extending the antibiotics. So now what do I do???? He's on antibiotics and we're hoping to extend...I'm trying to keep them apart but anyone with six year old boys knows how well that works. I can hardly pack up, change our plane tickets and leave before the holiday and I'm not panicking yet but I'm definitely worried and watching. I've spent months waiting for the other shoe to drop...please don't let this be it.

I bought the kit when I was desperately searching for a starting point to fight this disease. It was helpful in two ways...it gives you a format to start a daily log. I didn't use that format in the end but it made the point that you should and that has been a huge help when meeting with various doctors, etc. I also wanted the list of lab tests that I should have run and it was included in the kit. I had those run before I ever saw a doctor and that has been oen of the best things I did...every doctor I've seen since has looked at the lab results. But...having said all that...I had not yet found this forum and you can get all that information here and it's probably more up to date now. I'm happy to send you the list of tests that I had run initially with my local pediatrician and the format I use for our daily log. If it was me...I'd save the $$$$ now that you've found the forum.

Stephanie - Where do you get Sambucus and how do you dose it? I'm really interested in any homeopathic options.

I really appreciate the feedback and that no one yelled at me for even considering the shot! There are just so many opinions circulating and I'm terrified of a bad bout with H1N1 and how serious that could be. But it's a gamble either way I suppose. Still not sure what I'll do but it's nice to hear some stories about why others are choosing one or the other option.

Ok..so the big question. The outbreaks of H1N1 have started here...one kid I know of already hospitalized. Several in my son's school have had high fevers, etc. We vaccinated last year and didn't see any issues but then we didn't have PANDAS yet. That started in May...who knows if that was related to the vaccination he got the previous October. I had made the decision not to vaccinate - just to take my chances - but it looks like he is going to be exposed pretty quickly. Last year we had 400 kids in his school out at one time with the flu. So do I vaccinate and know that his immune system is only dealing with a dead virus or do we roll the dice and hope he doesn't get sick. Or should I go get the mist and let him be exposed to me so his immune system has a chance of developing a resistance before he's exposed to the actual, full-strength virus? I know there are many critics of vaccinations in general and I'm hoping to hear from both sides here. This is an incredibly difficult decision! Dr. Latimer told me that she asked Dr. Cunningham this question and Dr. C said the vaccination creates less of an immune response than the actual virus so we should probably vaccinate. Confused in TX!

TXPandaMom - I have a younger son (6) that was diagnosed with PANDAS this summer and we live in The Woodlands, TX. We saw a great psychologist in Kingwood in case you need someone who specializes in OCD. She is now very familiar with PANDAS after treating my son. We also have had no luck finding a dr. in TX and my son is treated by Dr. Latimer in Maryland. There are many PANDAS cases around here and we started a support group here in The Woodlands. Feel free to PM me if you want details. Rachel

Thanks to all of you for replying. I'm holding it together a bit better this afternoon because of your replies. I think this really is like PTSD. I was so happy to be past our initial exacerbation this summer and I think in the back of my head I was just hoping that was it...not realistic, I know. Judging by my very extreme emotional reaction today...I guess I'm not exactly over the shock of this summer. I do have a prescription for steriods but have not yet filled it - think I will do that in the morning. I asked him how his day was after school today and he said fine...didn't feel the OCD...but he was saying that right up until last night too. I sometimes wonder if I've asked him so many times whether something he was doing was related to the OCD...that I've now confused him. He's only six and I think he's genuinely questioning what is OCD and what is not. Think I'm now OCD about his PANDAS! One question about increasing the antibiotics..how do you know what dosage to increase it to? My son just switched from Augmentin ES (suspension) to Augmention XR (tablets) and I don't know how much to increase his tablet dosage to. Our doctor (Dr. L) is not easy to reach for questions like this so I'm feeling very panicked about not knowing what to do if this continues to progress over the next 23-48 hours.

Thank you for replying. I needed to hear that this can happen and it might be minor. When you increase the dosage..what do you increase it to? He just started Augmentin Extended Release (tablets - 1000 mg). Before that he was on Augmentin ES (suspension - 1800 and then 1200 mg). I don't know if those are basically the same drug so not sure if I can take him up to 1500 mg on the Augmentin tablets. I just got complacent over the summer when we seemed to have it all under control. I keep telling myself that this is different - we have a diagnosis, a doctor (Dr. L) and he's on medication. It won't be as bad and we'll deal with it much faster. But I still can't stop sobbing.

My son (6) has his first real PANDAS episode last May. He was put on Augmentin and over a period of weeks the symptoms all went away. He's been doing so well ... no OCD symptoms at all...and then he told me last night that he may feel it coming back a little. It's still manageable and he's not entirely sure that's what it is...but I'm having flashbacks to May. I can't stop crying. I'm literally in full-blown panic mode. I don't know if I should increase his dosage and, if so, by how much. He's on 1000 mg of Augmentin XR right now (recently lowered from 1200 mg of Augmentin ES). If this is a second exacerbation...do I call Dr. Latimer or just increase the medication now? Please help!!

My son was recently diagnosed and has been on antibiotics for about 2 months. He responded very well and is non-symptomatic right now. I just found out today that the sibling of one of his classmates has strep! The doctor said he's seen a lot of cases over the weekend so it's going around. So what do I do?? His actualy classmate doesn't have it yet but has obviously been exposed. Do I take him out of school for a couple of days or wait to see if his classmate comes down with it - her mom will let me know but it'll probably be too late. Or do I up his antibiotics and keep him in school until/if someone in his class gets sick? I'm so panicky right now - cannot go back to our summer symptoms!!

Holly - My son was recently diagnosed as well (July) but the exacerbation started in May - just took us awhile to get the formal diagnosis. He was started on antibiotics about a month after the symptoms started and has responded very well. He was started on Augmentin and then we tried to switch to a maintenance dose of zithromax but he just couldn't tolerate it. He had horrible stomachaches, was pale and had no energy. We switched back to Augmentin about 10 days ago and those symptoms went away very quickly. Everyone is different and I know a lot of people have luck with zithromax - it just didn't work for us. We have not gotten to the point yet of considering IVIG vs PEX. If we do, I'm leaning towards PEX but we see Dr. Latimer (in DC) and she only does PEX. I asked her why she prefers PEX and I liked/agreed with her answers so that's probably what we would do if necessary. Having said that...lots of people do IVIG and probably have input on why IVIG is a good option. In the end..it comes down to what you are most comfortable doing. Both are serious procedures and should be considered for all their risks and benefits. If you don't mind sharing...where are you in TX? I'm in Spring, TX (just outside Houston) and there seem to be a lot of us here. Take care! Rachel

Airial95- Just wanted to say how happy I am for you! The little things mean everything when you are dealing with this disease. My son (6) came home from school yesterday and said he'd gone to the nurse during the day...my heart just stopped. I asked why and he said that he'd bumped heads with a little girl in gym class and they both got sent to the nurse to be checked out. All I could think was...'Whooo Hooo - bump on the head!'. That's pretty normal boy stuff! Anyway...I'm always happy to hear a good story and hope things continue to go well for your family! PS - I still consider Chuck E Cheese the seventh circle of ****!

DataGirl - I am also in Spring and wondered who your dr. is here that diagnosed PANDAS? PM me when you have a chance. We are actually starting a support group (I'm friends with 3BoysMom)in The Woodlands at the end of August. PM me for details if you don't already have them.

SearchingMom - I'm also in Houston and have struggled to find a doctor that will treat. We eventually went to Dr. L in DC for a diagnosis but it shouldn't be this hard given we have the medical center here. There are some doctors that diagnosis and treat in the Dallas area - PM me if you haven't already found their names off the list of doctors on this site. I also wanted you to know that we are starting a support group at the end of the month - meeting in The Woodlands. There may be some ideas about doctors there...we'd love to have you. Let me know if you'd like details.

Grace - I'm curious what Dr. Rotenberg did to help you? I called his office and his receptionist said they treat PANDAS patients...did she just mean the symptoms (with SSRI, etc.)?

I am also in Houston and have been searching for a doctor. I called Dr. Collard and she gave me quite an earful on how we are harming our children with aggressive treatments...pretty sure she's not a PANDAS believer! I've had no luck finding a dr. either - we eventually went to DC to see Dr. L but that has not turned out to be very helpful given the distance. If you find someone please let me know and I'll do the same. We are starting a support group in The Woodlands - if you'd like more info, PM me.

My son was diagnosed in July by Dr. Latimer. I asked her about vaccines in general and specifically about the flu vaccination - at the time we were unaware that the H1N1 vaccine would be included in the seasonal flu vaccine. She was cautious about childhood vaccines but said that she agrees with Dr. Cunningham that PANDAS kids react less to the flu vaccine than they do to the actual flu. So basically she said we should get the flu shot - although again we did not know that the H1N1 vaccine would be included. She also said that if my son is around anyone who has gotten the live vaccine - then he basically gets exposed to the vaccine as well. Has anyone else been told this by one of the 'PANDAS' doctors?

I am trying to get a letter from our doctor confirming for the school that my son has PANDAS. This is part of getting an IEP in place. I'm going to draft the letter and ask my doctor to sign it. Does anyone have a letter that they would be willing to share? I want to make sure I have everything covered the first time!

We just came back from seeing Dr. Latimer in July. My son is 45 lbs and on 250 mg zith daily. It seems to be really hard on his stomach though so not sure if we're going to have to switch or if it'll get easier with a little time. Dr. L prescribed this and said he would be on it indefinitely - no plans to lower it even though he's responding very well to antibiotics. I also asked Dr. L about vaccinations and she said she recommends them. She said that Dr. Cunningham believes that the immune response to vaccinations is much less that the response to the actual illness like the flu so she recommended we get the flu shot this year. I'm still undecided about that but I assume she'll tell you the same thing..if not..would love to hear about it. I don't know about the IEP but I'm in the same boat and meeting with the school next week to discuss. I want exactly the same thing - just don't know how to get it!