VickyLH

I know each child may respond differently to different probiotics (or at least I think so), but I'm not sure which one to start with. Any recommendations? What dose do you give? Thanks, Vicky

Wow, I can't believe how much I learn from this forum every day! It still blows me away the extent of symptom similarities amongst our children. Luckily we home school too so I don't have to worry about this issue at school. Although I must say, I gave ds11 a pretty hard time about this before I understood PANDAS. He's been on antibiotics for about 5 weeks now and just this past week I've noticed his writing has improved and he doesn't seem to have as much margin drift or urge to re-write words. I asked him if this was OCD today and he said it was. So far antibiotics has helped him get back to about 80%. He's now reading again, he can function around the house (aside from getting dressed), he plays outside a little more, he's much quicker with his math and I notice more clarity in his thinking and reasoning skills. He still has some anxiety about returning to Boy Scouts and home school band. We're also seeing some hyperactivity which I suspect may be due to yeast. We're giving him probiotics, but probably not enough (only 1-2 billion per day). I'm in the process of educating myself on diet changes that will help. My heart breaks for all of the children and families who have undiagnosed PANDAS and are struggling. I feel so fortunate to have found such a wonderful and supportive group!! Vicky

Hi everyone, I noticed another parent posted about their daughter's margin shift in her writing and I wondered if anyone has observed this behavior. I thought it was odd that my ds11 would start writing in the middle of the page and then progressively shift his margin to the right as he progressed down the page. I asked him if this was OCD and he said it wasn't. He doesn't know why he does it, but continues to do it despite constant reminders to start each line at the margin. He would also tend to skip many lines and/or only have a few written words on one page. I just thought this similarity was interesting and wondered if anyone else has experienced this with their child. -Vicky

Hi TH, I'm so glad your appointment went so well! Sometimes I wonder if a long journey to a well respected PANDAS doc is in our future. I've had a couple of appointments where at first the doctor seems understanding and somewhat knowledgable of PANDAS, but then makes comments here and there that show skeptisism and my heart sinks. There's one thing that I found strikingly familiar in regards to your daughter's writing. My ds11 also has a margin shift in his writing. He would start writing in the middle of the page and then slowly move over from line to line until there was almost no room left to write. I thought it was OCD, however he said that he didn't know why he did it. So from Dr. L's comment, I'm assuming this isn't unusual to see in PANDAS kids writing? -Vicky in NC

Good morning everyone, We just got a call from our doctor that our non-PANDAS 4 year old's 72 hour throat culture came back positive. He was diagnosed with Strep a month ago and went through a round of Amoxicillin. This certainly explains his behavior for the past week. I guess we're in for another go round of strep in our house! We'll be taking our other non-PANDAS son in tomorrow to make sure he doesn't have it again as well, since he too had a mild fever a couple of days ago. Our PANDAS son has been taking 150 mg/day of Azithromycin for the past 21 days. Overall he has improved while on it however we've had ups and downs. Over the past several days he's regressed a little and developed some more facial tics and now I suppose we're seeing him react to his brother's strep (and possibly his other brother too). I am assuming that since he is on Azith, he is safe from actually getting Strep. However, my question is, since we're seeing increased PANDAS symptoms, should we up his dose? We already feel his dose is low anyway and we were planning on asking for a higher dose the next go round in 10 days. Should we just up it on our own right now - at least to 250 mg/day? Thanks for your help. This is so frustrating!! I feel like we're never going to get rid of this Strep virus!! Vicky in NC

We too saw the spacey behavior in DS11 mainly during the first 4 days of starting Azith. He would basically zone out and crouch in a ball on the floor somewhere. At times he would do this for several hours and if we tried to help him snap out of it he would go into fight or flight mode. We quickly learned just to let him ride it out and also deduced that his brain was just in overload at that time and he was trying to completely minimize any type of stimulation (he avoided all movement, sound, and visual stimulation). At other times he acted spacey, but would pace around the house unable to sit or get settled at all. We are on day 17 of Azith and although he still has moments like that, they are farther apart and now only last about 5-30 minutes at the most. Hope this helps. We too are only a month or so ahead of you in this journey. Vicky in NC

I just saw a show on TV about this. Apparently they are finding many kids now have teeth discoloration and they think it's from too much fluoride; fluoride in water, toothpaste and treatments at the dentist. The show mentioned that they are considering lowing the amount of fluoride they put in drinking water.

Does anyone know what her protocol was for her son? I would hope, after all these years, she has shared it with someone. From the little I understand about homeopathy, the remedy can be very patient specific depending on the child's personality type, health history, current symptoms and behaviors. I'm currently working with a homeopathic friend of mine to treat my non-PANDAS son using his constitutional remedy. He also recently had strep throat and has had a difficult time controlling his temper through December and January. In trying to determine his constitutional type, I was amazed at how well certain constitution descriptions so accurately described his personality type, tendencies, health issues as a child (right down to his proneness to ring-worm on the scalp - which we battled for over 4 months when he was a toddler), and his likes and dislikes. It'll be interesting to see if we notice a change, but from what I understand it can take several months. Vicky in NC

I just found this website which you might find helpful. http://www.pandasconnection.com/apps/videos/videos/show/12296049-out-of-the-fog-into-the-light-2-wmv -Vicky

My son definitely got worse on Azithromycin for about 5 days before he started getting better. All of his symptoms escalated; his tics, OCD and anxiety. He also had a severe flight response where he ran outside with no shoes, socks or jacket in 33 degree weather and refused to come in. He sat in a ball on our back deck for 30 minutes before I convinced him to come back in the house. Only 4 days later, today was his best day in a long time. He's probably only about 80%, but that's a far cry from where he was just this past Monday. Best wishes, Vicky in NC

Your right, it may just be low and not a deficiency. My husband took the call from the nurse so I don't know the actual number. We've asked for a copy of the lab results so I'll find out soon. It's good to know low IgA is not unusual for PANDAS kids and that IVIG with low IgA content can be used. My son rarely shows the usual signs of strep as well. Years ago when my son had a PANDAS episode (before we knew what it was), I actually thought he was extremely healthy because he NEVER got sick even though his younger brother was ALWAYS sick. Now I realize that he was constantly reacting to his brother during that time - anxiety, tics, mild OCD and ADHD symptoms. Thanks for your replies! I feel a little better now. :-) -Vicky

My son is on day 9 of Azith and we saw the same thing the first 4 days. It was very scary. He would shut down almost every evening and basically sit in a ball on the floor staring with dilated eyes. On day 5 things started to improve, although his recovery has been jagged. Today was a very good day. His OCD is manageable and he had a great day homeschooling. He actually started reading again (first time in 6 weeks) and has started playing outside with his friends more! I hope you see improvements soon!! Best wishes, Vicky

Hi everyone, We received our son's blood test results. He has elevated ASO titers (not surprising since we had a confirmed strep infection a month ago), strep titers were normal (how is this different from ASO titers?), his IgG was normal, however his IgA was low. Unfortunately the doctor didn't order an Antidnase B test. From the little I have read about IgA deficiency, there's nothing you can do except avoid people who are sick and eat healthy. Is this correct? I've also read that people with IgA deficiency are at an increased risk of anaphylactic reactions when receiving IVIG, but that this is largely preventable. Does anyone else have a PANDAS child with an IgA deficiency who has received IVIG? I feel like this has thrown a wrench into his possible treatment plan. Thanks for any input you might have. Just trying to figure this all out. -Vicky

Thanks, that's good to know! I need to look into it more, but with the new Health Care reform, are pre-existing conditions a non-issue now?

Well, I just got off the phone with a social worker from NIMH who did an eligibility phone interview regarding my ds11. Unfortunately she said she didn't think he was a candidate because his symptoms had been going on for too long. I really don't understand this, because although we now believe he exhibited PANDAS symptoms on and off when he was ages 5-8, he was never diagnosed or treated for it. His most recent exacerbation has been going on since later November/December. He also was well for a solid 2 years before Strep crept back into our lives and turned it upside down this time. He has never been treated for PANDAS symptoms, other than the 30 day abx he is currently on - no IVIG, no steroids, nothing! I don't get it. She said she will discuss it with the core investigators and if they decide he is eligible she'll contact me in 1-2 weeks, otherwise I won't be hearing back from her. I'm praying that he is eligible because my husband's company is in the midst of bankruptcy and he won't be employed much longer. I work part-time and will eventually switch the family to my insurance (United), but I'm worried that insurance won't cover IVIG and we won't be able to afford it for a while. Please say a prayer for my son so he can get the help he needs. Thanks, Vicky in NC

I found our local group (that will be meeting for the first time next week!) on Facebook. Here's the link, http://www.facebook.com/#!/topic.php?uid=104887432702&topic=16965 -Vicky

I've also noticed my son is more able to talk about his OCD when he's having a good day. On days when it's overwhelming for him, he just shuts down and won't say or respond to anything. So I think the fact that your son is talking about it is a great sign!! Here's to his continued recovery. I hope we follow in your footsteps. He sounds like such a bright child! By the way, I had to laugh that you got frustrated by your six year old not being able to get dressed.... try dealing with that in an eleven year old before you realize it's OCD/PANDAS. Our poor son has struggled with OCD and PANDAS for years, and we didn't even know it. I feel horrible thinking of all the times we got frustrated and yelled at him for his behaviors. It was mostly because he tried to hide it from us, so we saw his actions as a choice rather than a compulsion. Best wishes!

I just sent this talk radio interview with Dr. K to my sister last night and she found it very eye opening. It's a little long, but Dr. K does a great job giving an overview. Here's the link: http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=43934 My husband and I found it extremely helpful as well. It's long (55 minutes), but there's a lot of great info in the first 30 minutes if their attention spans aren't quite that long. ;-) -Vicky

Vicky, did you start the z-pak b/c you had strep? Yes, although I didn't test positive for Strep at the time (rapid only) but I had a sore throat and everyone else in the house had Strep at the time so I was treated. Do you remember what dose? I did 1000mg first day, 500mg next 4 days. Maybe that's not enough. Also, maybe we have azith-resistant strains. Yes, that's the same dose I did as well.

Vicky, did you start the z-pak b/c you had strep? Yes, although I didn't test positive for Strep at the time (rapid only) but I had a sore throat and everyone else in the house had Strep at the time so I was treated.

I'm going through the same thing. Started a Z-Pack a few weeks ago and have never really felt right since. Over the last several days my sore throat has come back. I was just telling my husband I think I'll go in for another Strep test. A friend of mine also had Strep in November that didn't go away after abx. She got treated again in December and I think she's better now. Perhaps there's a stubborn strain out there or something. I'm just ready for it to be gone from our house! -Vicky in NC

Sorry, I guess I rambled on a lot about his compulsions before I finally got to the point of my post :-) I was wondering if the breathing in, in between words of a sentence would be considered a tic? Thanks for the reply.

I also wanted to let everyone know that we're seeing some improvement in DS11. After trying Amoxicillin and Augmentin without improvement, I think we are finally seeing signs of improvement after 6 days of Azithromycin!! He's been much happier the last 2 days, has stopped many of his tics and finally wants to play outside with his friends. So nice to see him happier right now!! -Vicky

Good morning, I feel bad for asking soooo many questions lately, but we're keeping a close eye on my younger two sons for PANDAS symptoms following our recent family bout with Strep. If possible I would love to catch PANDAS early as it was so difficult to watch DS11 (PANDAS) struggle for over 6 YEARS without us truly understanding what was going on. A brief history, both of my younger sons (9 and 4) were acting extremely difficult from late November through December prior to their confirmed Strep infections on January 2nd. We've come to find out that everyone was exposed to Strep from a family friend in early November just prior to everyone's attitude kicking into full gear. They both went on a typical 10 day Abx for Strep and during that time they completely calmed down and were once again happy and healthy. Since stopping Abx a couple of weeks ago, their behavior has started to worsen once again. They are both extremely emotional and are set off at the littlest things. My youngest was always so easy going, so this is a very noticeable difference for us. We just learned yesterday that their friend (who we had at our house last Saturday night) was diagnosed with Strep this past Tuesday. In November/December my DS4 was extremely focused on his Legos and started creating very detailed designs which were exactly symmetric (same colors and patterns on each side). If it wasn't perfectly symmetric he would immediately fix it. At the time we were very impressed with his attention to detail, but now I'm starting to look at his behavior differently and am wondering if this is a sign of OCD. He also started getting extremely agitated when his drawings weren't perfect and would immediately freak out, crumple up the paper, throw it across the room and cry and have a tantrum. We also started noticing that he would need to have his bed laid out perfectly at bedtime. He would fold up his blankets in perfect squares and spread out other blankets perfectly across the bed. Sometimes he would be awake in his room still doing this an hour after we put him to bed. One night he pulled out all of his stuffed animals and lined them up around his room around another blanket that was perfectly laid out. I didn't think much of it, however a few days later he needed the blanket at daycare so I took it. When he got home and saw that I took it he freaked out! He also started to have sensitivity to clothes and has been extremely wired at times - constantly jumping/talking. Lastly, he has started taking breaths in, several times in the middle of sentences and he repeats the word "no" 4 times every time he says it. Are these a tics? Do any of these things sound familiar to anyone who has a little one diagnosed with PANDAS? How did you manage to figure it out for your little ones? Honestly, if we weren't looking for these things, we would likely just write it off as having yet another sensitive child who is a perfectionist. My DS11 (PANDAS son) was very similar to this when he was young. Sorry for the lengthy post. I would really appreciate hearing from other parents of young children who have been diagnosed with PANDAS. Thank you, Vicky in NC

Thank you so much for taking the time to post about your son's recovery. Being new to PANDAS (although not new to dealing with the symptoms), it's truly wonderful to hear about the success stories and not just the stories of crisis which tend to consume our lives when we are in the thick of it. We all need hope to carry on. I wish you and your family all the best! -Vicky