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Newbie here, both in this forum and with PANDAS


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I was wondering if anyone has any very young children with PANDAS? My son was diagnosed last January right when he turned 3. So far we have treated him 3 times, this last time the antibiotic didn't help much at all. My Dr. put him on Penicillin for 6 months and we just started that on Tues. Reading through these different groups and forums, I'm noticing most of the kids affected are school age. I was hoping to find a parent of someone very young like my son. Both myself my husband and my sons Dr. are kind of learning as we go with all of this, so really I don't know a whole lot about this other than what I've read online. Thanks in advance!

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Welcome, ecmama

 

My son is now 12, however, he was 3 when he first started having trouble. It all started with him when he became really ill with strep that wasn't fully treated. From then on, he had complicated pharyngitis, tonsillitus, ear infections, sinus infections.

 

My son has been on azithromycin recently, and we just switched to penicillin vk prophylactically at 500 mg/day.

 

There are many reports of one antibiotic working for a while, then not working. This may be due to antibiotic resistance by some bacteria. You may need to switch to one of the other more broad spectrum drugs, just in case there is another infection other/in addition to streptococcus.

 

What are your son's symptoms?

 

 

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Welcome. There are some on here with younger children. I'm sure they will chime in once they check the forum:) Otherwise, you may be suprised to learn that many parents realize their children had their first exacerbation at a very young age that went undetected and undiagnosed. It's just harder to realize what one is seeing is PANDAS symptoms at a very young age if it isn't extreme or their children had their first onset occur at a time when PANDAS was non-existent or rarely known (more rare than now). My son had his first exacerbation surface on his 5th birthday.

 

I, too, would like to know what antibiotic your son was given for active strep infections. If it was penicillin or amoxicillin each time, it may not have cleared the strep. How close together were the 3 infections?

Edited by Vickie
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Thank you for your replies. Here is our story, I'll try to keep it short. Last fall, a year ago, I noticed his behavior changing. He was much more defiant, emotional, extremely hyper and just didn't listen. I started to think that this is what people mean when they say age 3 is worse than 2. It was very frustrating. Fast forward to Dec. or so and he was having tantrum after tantrum after tantrum, he started getting aggressive, I started to think, this JUST isn't right. Then he started complaining of knee pain toward the end of Dec. I took him to the Dr. and took whatever Dr. could see me, which wasn't our normal one. Anyway, she said immediately without even examining his legs that he might have leukemia, instant freak out on my end, so he had to get bloodwork. (the tests were neg.) New years eve, I took him back to the Dr. because his eye started to blink constantly. Again could not see my Dr. the only one available was the same one. She told me to put him back in diapers and stop potty training because he was so stressed out that he developed a tic. This didn't sit well with me. That night he got very sick, was shivering in the bathtub, had a fever, just wasn't right. The next day he was ok, but the eye was still blinking. I ended up taking him in again and told them I wanted to see our Dr. I explained everything that had been going on the previous couple months and he said that he didn't know much about this, but he said our child was interesting and was going to do some more research, but he thought it was PANDAS. He gave us an antibiotic and within a few days the tic was gone and we had our little boy back, it was literally like an exorcism or something. SO everything was great up until May and I started to notice the behavior declining again. I called and told them that the same sort of thing is happening that happened in the winter and I want to catch it early because I didn't want it to get to that point again. The Dr. wanted a blood titer done and it showed no signs of strep. He concluded that his allergies were preventing him from getting sound sleep at night which would explain the behavior, I said fine because there were no visible signs. Now this summer was pretty hazy because so many things went on with our son between ear infections, traveling, etc. that it's hard to remember the timeline, but the Dr. wanted him to have an eeg, that came back normal. Now, at the end of July his Dr. called out of the blue and said he had been doing more research and talking to colleagues and decided they wanted him on another round of antibiotics because he should have had 2 rounds back in Jan. I said great that's what I've been wanting since May. So we did that round and right at the end of that, he developed a massive ear infection, so he was put on a different antibiotic. Now, for about a month or more the behavior has been declining and a couple of weeks ago the tic came back. I can tell you the last round of antibiotics he had, which we just finished on Mon. was Ceftin for 2 weeks. After 10 days we had a follow up and I told him I hadn't noticed much of a difference and that the tic was starting again. He decided to put him on Penicillin for 6 months as preventitive and that is where we are now. Just started that on Tues. So basically in a nutshell, his symptoms are hyperactivity, ODD, the eye blinking and general behavior problems, which all usually go away with treatment. Honestly, he's been on different antibiotics for ear infections and this whole thing in the past year, that I couldn't even tell you what he's had. He's never once complained of a sore throat, so my theory is that it's in his sinuses because he's always so sniffley. I don't know. It's all so new and we live in a somewhat small area and I'm pretty sure this isn't very well known around here. Like I said, we seem to be learning as we go. It's all very frustrating, but I'm happy that my Dr. is working on it with us. Geez that was long, sorry.

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Hi - I have a dd7 and ds3, both with a PANDAS dx. Dd started around 4, possibly 3 and I believe, ds started at 7 months old, same time as his sister had her first recognised episode. My dd is very classic with acute onsets with OCD, tics and a raft of behavioural stuff. My ds sounds much like yours. His presentation is all behavioural with ODD, aggression (actually a very sweet natured,loving child) tantrums, difficult, sensory etc.

 

It's tough with very young children because people will tell you it's all age/developmentally appropriate etc but you know your own child. My ds tanks with most illnesses and takes a long while before he calms down again. Abx can help sometimes but sometimes not depending on triggering illness. Time has, so far, always healed although he is more difficult at baseline than my dd but to some extent we may never have seen his true baseline 'cos he had it so early.....

 

good luck.. maybe you could consult with one of the experts and they could guide with your ped? Most are happy to talk to local drs....

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We have 3 year old twins thought to have had PANDAS and an older DS 6 1/2 who had sudden onset of TICS/OCD after a strep related illness and was diagnosed with PANDAS in August 2009. Its been a long journey and I'll will keep our story short. After 15 months of treatment for our older son and almost one year of treatment for our twins, we have unraveled that all three of our children have congenital Lyme Disease. LD/co-infections transferred to them while pregnant.

 

Our three year old little boy had the following issues: OCD tendencies (hard to tell at 2), rage behavior, sensory issues, back to back illnesses about every 3 to 4 weeks, Livedo Reticularis, Uveitis, IgG 1 & 3 deficiencies, Strep Pneumo deficiencies, Low RBC, High Lymphocytes, Elevated CaM Kinase etc. etc. etc.

 

Our three year old little girl had the following issues: Severe separation anxiety, delayed speech, OCD tendencies around reassurance (hard to tell at 2), mood switching, Livedo Reticularis, IgG 1 & 3 deficiencies, Strep Pneumo deficiencies, Low RBC, High Lymphocytes, Elevated CaM Kinase, etc. etc. etc.

 

With your son's complaints of joint pain you might considering investigating the possibility of Lyme Disease. I've attached a symptom list for your review http://www.timeforlyme.org/signs-symptom-list.html

 

Additionally here is a link on how to find a Dr. that specialize in diagnosing and treating LD: http://www.latitudes.org/forums/index.php?showtopic=10543

 

I like to add that our older DS PANDAS OCD/TIC symptoms are currently in remission. Our 3 year old twins only remaining symptoms are the Livedo Reticularis that is fading and occasional mood liability that comes along with treatment due to herxing reaction. We hope to rerun the above mentioned tests this winter to confirm their immune system is recovering.

Edited by SF Mom
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My son is now 8 but had his first strep PANDAS epsiode at age one year and one month. Now that was in 2003 and Dr's suspected PANDAS but did not know what to do other then give antibiotics to clear the infection. his titers were elevated but his EEG and CAT was normal. He had blinking, finger chorea,irritability, not eating, not sleeping, hyperness. As he continued to get sick his symptoms kept returning and lasting for about 5 weeks post infection. He seemed developmentally on time. Then at age 4 we gave more immunizations and a flu shot and he became like aspergers and adhd full time. The OCD came on over urination, touching, licking, chewing clothing, tics andtantrums. The ADHD didn't go away anymore like in the past. His fine and gross motor skills became delayed. At 5 he had to be put on meds for severe adhd at school. He still had tantrums regularly so he was put on abilify. The OCD and tics would wax and wane. The behaviors stayed. Fast forward, he is still having tics and ocd with exposure to strep. He takes a daily pen VK 250 x 2 day, and risperdal, intuniv and prozac. His ADHD interferes with school and home life. His rage is better on the risperdal. Motor skills are all still delayed so he gets OT and PT. We get him social skills help at school and privately. During exacerbations we take stronger antibiotics for two weeks like 1000 mg of Augmentin daily. Luckily he is a happy well liked kid. He really is dev delayed in maturity though.

 

 

 

 

I was wondering if anyone has any very young children with PANDAS? My son was diagnosed last January right when he turned 3. So far we have treated him 3 times, this last time the antibiotic didn't help much at all. My Dr. put him on Penicillin for 6 months and we just started that on Tues. Reading through these different groups and forums, I'm noticing most of the kids affected are school age. I was hoping to find a parent of someone very young like my son. Both myself my husband and my sons Dr. are kind of learning as we go with all of this, so really I don't know a whole lot about this other than what I've read online. Thanks in advance!

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Thank you all for your replies. I'm just so beside myself with questions. It seems the more research I do, the worse I feel about this whole thing. I know I should be taking things as they come. From what I've read, it seems like my son has a sort of mild case. Did all of your kids get worse as they got older? Is it going to matter that we started a prophylactic antibiotic right after the last antibiotic we tried didn't help? So far I'm not noticing much change and he had a semi rough week at preschool with being super hyper and "handsy" and not keeping his hands to himself. We've never really had a problem with that. Ugh, I'm sorry I'm throwing out all these questions, but I just feel so alone here, as no one knows what I'm talking about when I talk to people. I hadn't even heard of it until last winter when this all started. I'm pretty sure it isn't Lyme Disease from looking at the symptoms, we later found out that he's very flat footed and needs orthotics, so we were kind of thinking that was what was causeing the knee pain, but I have also heard that joint pain can be a symptom of PANDAS. Since the orthotics, he hasn't complained of knee pain. Is there a specific blood test that will test for LD though? Thanks to anyone who can attempt to answer my questions. I'm going to call his Dr. after a week of the prophylactic if there is no improvement.

Edited by ecmama
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Ecmama,

 

I'm in your same boat. My son was dx with PANDAS in January, at age 2 yrs 3 mos. Like you, we had been struggling for a few months with his overnight, very sudden behavior changes. Thinking it was the "terrible twos". We had a very astute Doctor that made the connection for us. We've tried varying doses of abx, but have been on abx consistently since the dx. We saw an immediate improvement on the abx, followed by a slow and steady continual improvement. We're currently at about 85% back to normal. We still have episodes between exposures - but they've become fewer and less intense as we continue treatment.

 

It is very difficult for our kids because alot of the symptoms are developmentally "age appropriate". Like your son, mine presented with all behavioral issues - ODD, ADHD and some pretty stiff OCD (which until we realized what was going on, we just thought the OCD was raging tantrums - turned out the tantrums were the result of him not being able to complete or verbalize his compulsions.)

 

One bit of advice I can share that has been invaluable to us - track your sons symptoms daily. Keep a log or journal. We've created one in excel that I'd be happy to share with you if you want to PM me. It's based on a system another parent here, Buster, created. We ask his teacher at school to score his different behaviors each day so we can track if things are getting better or worse. It's a little bit more objective than just going by our memory. We also use it to note other things that may be contributing - strep in the classroom, didn't nap, etc...since at this age other things may trigger some of the behaviors. It has helped us tremendously, and has come in handy when talking to different doctors, therapists and school administrators.

 

My son will be 3 on Tuesday, and he is looking forward to his birthday party at Pump It Up with his friends (a very small group). A year ago having a birthday party for him with other children around would've been a recipe for disaster - if not a lawsuit!! We're keeping it small, with only families who are intimately familiar with his condition, so if all heck breaks loose they'll understand!

 

One of the good things about our son's ages and catching it young - we have a wealth of information and advice right here on these forums of folks who have been through that age/stage before us! You've found a very supportive community here!

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Hi EC,

 

where do you live? Maybe someone can rec. a doc.

 

Also listen to these free podcasts http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348 (I'd start with the Dr. Latimer interview if you are time limited. You can upload them into an ipod.)

 

And here is a list of FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 with lots of good info.

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Hi EC,

 

where do you live? Maybe someone can rec. a doc.

 

Also listen to these free podcasts http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348 (I'd start with the Dr. Latimer interview if you are time limited. You can upload them into an ipod.)

 

And here is a list of FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 with lots of good info.

 

Thanks I'll check those out. I live in the Upper Penninsula of Michigan, but also have my parents in Traverse City, Michigan, which is in the northern lower penninsula.

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My DS who is now 7 started with the anxiety just before turning 3. We dismissed it because we were planning a move so naturally he would suddenly have separation anxiety (previously outgoing and very social). When he turned 3 we moved and he went berzerk - raging, hurting himself, hurting others. It was very frightening. Again we contributed it to the move and spent the next 4 years in the psych system before hearing about PANDAS. Now we have high ASO (512), and a positive response to antibiotics and are 99% sure this is what we are dealing with, although I still have my moments of doubt. He started out exactly like your ds - tantrums, hyper, aggressive, knee pain. That knee pain has always made me question every psych diagnosis. No motor tics though, which I guess is where the doubt creeps it.

 

I grew up on the border of michigan (sault ste marie, Ontario), and spent a lot of time in the upper penninsula. Welcome to the forum! I'm so glad you found us while your ds is still so young.

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About your question about switching to a prophylactic at this time.....In an ideal world (but doctors don't follow what moms say), the child would have improved on full dose before switching to a prophylactic. Even if one says that the infection could have cleared and you're now waiting for the antibodies to lower, I would want to see some improvement on that full dose without a spiral down when switching or at the tail end of that two weeks.

 

If you think it may be a sinus infection, have you seen an ENT? Sinus infections can be very hard to get rid of. It could take rounds of antibiotics, more than one antibioics at the same time (my one son had Zith and Augmentin at the same time), some get a steroid as well to take down the excessive swelling in the sinuses so it can start to drain or a nasal spray to help take down the swelling. If you haven't seen an ENT, I'd make that appt too.

 

Have you checked family for strep?

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