dcmom

Bronx mom- Glad to hear everything is going well- I was wondering. Did Dr B do an immune work up on your son? What were the results? How long do you think he will be doing monthly IVIG?

Thanks, as always Meg's mom. I can tell you, "What to do when your brain gets stuck" is really helping my dd, age 9. She was resistant to discussing pandas or ocd untill we started that book. Now she always asks to do a second chapter at night. While she is not really fighting the ocd yet, she is starting to be able to identify it a bit. It didn't help dd, age 6 during her episode. She was just too far gone to work on it. Now that her sister is doing the workbook- she is asking- so I will start with her soon! Just ordered two of Aureen Wagner's books!

Hi Suzan- thanks. It is not so much that she doesn't have an appetite, but that she thinks she will get sick if she eats. She is refusing breakfast this morning, too.

DD, age 9, has been ramping up in pandas symptoms since a cold. We have started dealing with some issues head on, thanks to Meg's Mom. She is also having some food issues which have been around for a while, but are getting worse. Wanted to find out if anyone has dealt with anything like this: DD is very thin to start, and of course I fear anorexia as I know that can come from pandas, so I don't want to deal with this the wrong way. She typically eats fine for breakfast and lunch, and has an afterschool snack. When it comes to dinner, she barely eats. It started with just complaining that she didn't like what I have made (she used to be a robust eater, that liked everything). I have made the realization that she is avoiding eating because she is afraid her stomach will hurt or she will feel sick. Stomach aches and fear of throwing up/getting sick have been one of her main problems. During the last few days she has been resisting eating almost anything for dinner. I am pretty sure she eats enough during the day to sustain her- but certainly not enough daily calories to thrive. I can't see forcing her to eat- I have always resisted battles about food. We have been talking a lot about ocd, and I think she is starting to understand it- but don't know if she will accept it for this issue. Help!

Thanks Wendy, Unfortunately my dd who has all symptoms of adolescent variant (plus more ocd lately) is only 9, age 8 at onset.....may not totally apply to her, but I will keep my fingers crossed...

Tracy- A couple thoughts: Does your son have issues with the red dye in zithromax? You could try tablets, crushed- or dye free. Maybe it isn't the antibiotics- maybe he was ramping up because of something else? It took my dd 30 days on daily zithromax (200 mg for a 40 lb girl) to see any significant improvement during her first episode.

Kari- I am so sorry. My dd had huge separation issues last year in K, and only minor ones this year. They had suggested me staying in the classroom, but I was afraid to get in the situation that I would never be able to leave. I think you need to work on it in steps. Start shortening your stay slowly. Start by his favorite part- recess, lunch, craft, whatever. Say that you will go sit in the school office during that time and then be back. Then reward him. I went to the dollar store and wrapped a bunch of gifts in a bag. Let him pick the gift as soon as you get back from the office. (the reward needs to be immediate and tangible) Do this for a few days to a week, until it is easy for him. Then add more time to when you will be gone. I am just a mom- but I felt I would rather my dd at school a portion of the day- by herself, than the whole day with me. (For my sanity, but also for her sense of accomplishment). We did a reward type program like this. My daughter eventually could go to school very well. On mornings she was anxious, I would offer to come pick her up at lunch, if she wanted to go home then. Ninety percent of the time, she was better by then and would stay. At the same time, I would explore the option that he needs more medical intervention. Good luck!

Dut- she has been on longterm treatment dose zith. This all started post strep last February. She was mild, we thought it was GI related. Things ramped up a bit after H1N1. Then we did a steroid burst and started zith, and she did great, almost back to herself. Then two weeks ago she got a cold, and it has been downhill since then. Continuing on zith, adding steroids to the mix again. Elizabeth: Do you know what the possible treatments are? Why/ how is it easier? Anything you find out would be so helpful!

colleen- did your kids do this? peg- do you think it is working? Will talk to Dr L about it this month...thanks!

Colleen- when you say two different antibiotics, what do you mean? Two at the same time, for a period of time. Have you, or anyone done this? I have been thinking about this, as I question whether we have eradicated the strep in my kids....

I think any doubt I had about Caroline being pandas was erased last night. Hopefully, same for dh, as he bounces between agreeing with me and accusing me of being crazy. Sigh. Caroline had a 3 hour long panic attack (second one in last month or so) last night that she needed to stay on the toilet, or she would throw up. We had to literally pin her down to keep her off the potty. This took place from 9pm to midnight. Thank goodness, Dr L called in a steroid prescription for her yestarday, so we started this morning. Hoping for some relief. If it was up to me, I would have her in for plasma pheresis next week- but unfortunately it is not, would have many hoops to jump through, starting with dh and ending with insurance co. Sigh, again.

Hi Brooke- I have been thinking about this as well. In fact I am taking myself to the minute clinic today for a swab, my ears feel a bit funny, and my kids are a little bit off. Two kids have had strep in Julia's class this week, with very low level symptoms. I think the answer might be to have everyone cultured. Then have everyone blood tested for the strep titers. It is not foolproof, but probably the best we could do? I think someone mentioned- just treat the dog, the test costs more than the antibiotics. I am kind of thinking, my two daughters are on daily zith anyway- why couldn't my dh and I just do a zpack or two for precaution? Where to get it though? Eileen

Dut- Interesting about the DS. I am pretty anti video game/ tv (except during an episode for the reasons mentioned above). My older, now probable pandas dd, wants a DS and doesn't have one. She suffers mainly anxiety, and some intrusive thoughts- what if I am sick kind of thoughts. We are working her back into ballet, which she left because of anxiety/ocd, using avoidance as her compulsion I guess you would say. We reward her for every step toward attending class. I was thinking of using the DS as a reward (but decided it was too big $$) for when she got back full time. Now I am wondering- she could use the DS the entire way to class- it might be a good distraction for any pre class anxiety. Hhhmmm.

wornoutmom- I am so sorry your family is going through this now. Dr Latimer is very compassionate, and really tailors her treatments to each patient- so have faith she will help you. It took my daughter 30 days on zithromax to see improvement. Two weeks of amoxicillin and then two weeks of omnicef did nothing. The antibiotics take time. If your son doesn't have tics, I would strongly recommend a month long steroid burst. It might jumpstart healing, or at least, give him a break. That has helped my kids dramatically. I am not familiar with any of the psych meds. I would think (like you stated), if it is possible, try to keep him off of them until you see Dr L- that way you can start immediately on her protocol without any weaning time. I know she only likes to change one variable at a time, as well. Hang in there, February will come. In the meantime, I guess if you can keep stress down to a minimum for him. Lots of rest, even extra tv time (helped my dd), good foods, and out door exercise. If he has trouble in school, take some half days- or forget the homework for now. I know it is a horrible place to be in...

NO- all pandas kids do not have tics.

Thanks John, and sorry, as I know all to well what you are going through. I think it is helpful to fill the school in. For right now, you could say something like he is having some medical issues, which are causing him some anxiety, we will be taking the next number of days to explore this with the appropriate doctors. When YOU have a grasp as to what is going on, you will better be able to explain it to the school, and ask them to participate in particular ways. It is very hard for learning to go on when they are not physically or mentally healthy. Did your sons have a documented strep infection? Did your younger son do IVIG, or only antibiotics? My daughter responded well to steroids- but it took longer than her sister to see the improvement. Her symptoms do not present as severe, and I think improvements are a little more subtle also. Both of my girls take prednisone tablets- I am able to crush them up and put them in something tasty (spoonful of ice cream, bite of brownie, hollowed out strawberry), I hear the liquid is awful. PLEASE keep me up to date on what dr K says- pm me if you would prefer. I am anxious to hear what his method of treatment is for these type of kids.

Sorry you are here, will make this quick as I have to pick kids up at school... Stay on the antibiotics for now. If the zithromax helped- THAT is probably the antibiotic you want to be on. Ask your ped for AT LEAST a 30 day prescription of daily zithromax, if possible, to buy you some time. Tell us where you live- unfortunately only a handful of docs really GET pandas- hopefully you can see one of them. Most of our kids need to stay on some type of antibiotic protocol for quite some time. Hang in there- things will improve.

Fallingapart- I wouldn't worry so much about school. I agree, that kids aren't mean untill around 4th grade and up. For my dd Julia, she could hold it together at school pretty well. She missed a lot of school, and does show some anxiety at school. This has actually endeared her to the other kids, and they all LOVE her and watch out for her. It is very special to see. She is in first grade, it was like this last year also.

mom2pandas- help me here. My pandas dd Julia is TINY. She is always the shortest in her class by quite a bit. She is not quite 5th percentile last doctor exam. I am short myself (5 ft 3 in)- but she seems much smaller. Should I have her tested? No one ever mentioned that....

Hi everyone. I just wanted to start a post to remind everyone to take a close look at the siblings of your pandas kids. My dd Julia (as most of you know) was a classic, overnight onset of debilitating ocd/pandas, with a documented strep infection. Her sister had strep at the same time. Julia's issues turned our family's world upside down. Her sister Caroline, at the same time developed lots of issues, but some went under the radar, and others were attributed to stress and approaching the pre teen age. In hindsight it is pretty clear that she had this pandas variant. Her cam kinase was normal, but her other anti neurals from Dr Cunningham were high. We have started some treatment for her: zithromax and steroids, and she did a complete turn around. She had a cold last week, and we seemed to have lost a lot of ground we gained. I regret missing this for so long- but know I have been doing my best, so don't feel guilty, just sad. I don't want any parents on this board to miss pandas in any siblings. Below is a description of pandas adolescent variant from Dr K's website. Caroline is only 9, but this fits her perfectly: We have indentified a small group of patients with what appears to be an adolescent-adult "variant" of PANDAS. Hallmark symptoms in these patients include an unrelenting, debilitating anxiety, chronic fatigue, and an eating disorder. All patients in this group have exhibited a chronic non-specific gastrointestinal symptoms and have elevated AntiDnase B titer. Symptoms usually start in high school (freshman or sophomore year). Initial symptom (present at one time in almost every patient): chronic, not fully explained and/or diagnosed GI ("stomach") complaint (common diagnosis attached to the complaint: GE reflux). Non-specific epigastric or abdominal pains, "heart burn", "fullness" following a meal, occasional morning nausea and/or vomiting are common. Few patients report loose stools but no clinical picture of diarrhea has been elicited. GI symptoms may disappear at the onset of psychiatric symptoms, or they may continue but with decreased intensity or remain unchanged. Insidious development of an overwhelming anxiety. Anxiety usually developes over relatively short period of time (matters of days or weeks). Patients report waking up in the morning with a feeling of an overwhelming (unexplainable) anxiety that may persist throughout the day and can wane slowly towards the evening. An appropriate literary description of these symptoms can be found in Goethe's "Sorrows of (young) Werter". There has been no discernable connection established between a documented (or distinctly recalled) infectious event and the actual onset of anxiety episodes. There is no "wax-and-wane" pattern of symptoms, however patients appear to be much more comfortable (and thus feels better) in socially non-challenging situations and at home. There is a tendency toward avoidance of going out (of the house), avoiding friends and skipping previously favored activities. Patients are unable to establish appropriate peer and/or boyfriend-girlfriend relationships. Eventually they may stop going to school (or to classes, if college students), curtail or seize completely their social activities and become home bound. Intrusive thoughts are present in most patients. Severe and persistent sleep disturbances. Behavioral regression(s). Insecurity and separation anxiety (adolescent type). Chronic fatigue commonly present.

Mom2pandas- Please, "brag" all you can. It gives us all hope for our kids. It also helps put school in perspective- the main thing is that they are healthy, when they are healthy- they will catch up and live up to their potential. This is easier to see from the outside, than when you are in the midst of an episode. I would like weekly reminders from you about how bad you were, and how great everything turned out in the end

My dd Julia, classic sudden onset of ocd pandas, tested negative for mycoplasma pneumonia. The test was done 8 months after documented strep infection and sudden onset.

mom2pandas- I want to add this quickly, before you spend more $. We found this to be REALLY tricky. With Julia, there are certainly some low level sensory issues at work- but we also felt it was combined with ocd. Hence- 50 pairs of underwear and none fit? It is really NOT completely about the fit and comfort, only. It might start there at some level, but then takes on a life of its own with an ocd component. And, it will not stop until he is down to one thing only that he can wear. I think your start to the solution, unfortunately, is getting the meds right. I would hold off on buying more stuff. Most probably it is an ocd component- and then, I am no expert, but that might be validating to the ocd thoughts. My dd, 6, who is doing REALLY well- still on most days will not wear underwear We will have to tackle this at some point- but it will not be about finding the softest most perfect underwear. It will be about getting used to wearing it, getting over the uncomfortable feeling. Here is an example- socks were out for a while for her- instead she would wear mary jane type shoes with not socks. I can tell you for a FACT that they would have been more comfortable to anybody with socks. I don't know how she wore them without- it was a mind glitch at that point. I found, during the episodes- sometimes just saying to her "you find something you can wear- we have time- don't rush" was the best way to get her dressed. Any form of pressure or rushing was out- she went late to school most days. Any worry about presentability was also pretty much out; she wore pj bottoms with a dress and rainboots if that was what worked.

I have to also chime in here. I certainly took the route of treating this aggressively with my youngest- that is what I felt comfortable doing- she was a textbook case of pandas, and wasn't able to function. My older daughter is much milder, and more of a variant, so making the decisions for her are a little tougher. We also are lucky enough to live by Dr L, meaning we did not have to fly across the country to go to a strange doc. Our insurance also approved our procedure, meaning we didn't have to lay money (that many people don't have laying around) out up front. Before we decided on pheresis for Julia, I did lots of research by talking to some experts, reading on the forum, reading studies and talking to other parents. The ONLY thing I really learned from all of this is there are NO gauarnatees with any of the treatments. I spent a lot of time reading lists of post by individual parents. It was heartwrenching to retrace their stories of coming on the forum, devestated looking for hope- and since then have had a roller coaster of ups and downs. Many have gone for IVIG, and it hasn't helped or they have relapsed. Since my dd had her treatment- many have also relapsed after pheresis. I want to go into any treatment for my daughter with my eyes open. I don't want the rosy picture. I need to plan for the positive and the negative outcome. And I feel as a parent on this board, it would be dishonest to tell a newcomer there is an easy cure. YES, this can be managed at worst, and at best your child can go into a long term (or maybe permanent) remission.

Mom2pandas- This was one of my daughter's major pandas issues- it started about a week or two into her probable first episode. She literally woke up one morning, tore her closet apart, and then told me none of her clothes fit anymore. She could not get dressed. She could not put on panties. She ended up wearing pjs to school for about two weeks- on the days that she went. She could not get dressed to go ice skating, to a birthday party, etc. During this time we figured out it was pandas. After 30 days on antibiotics, she could get dressed again. Two months later post T&A, she woke up, the same exact thing. Tore her room apart, nothing fit again. Luckily it was summer. She is doing well now, however she still has some clothing issues. The difference is, while it causes her some frustration and discomfort, it does not interfere with her life. For the most part she wears Gymboree dresses and leggings, a certain type of socks, and ugg style boots. However, if for some reason she needs to wear something else: tights for a costume day at school, sweater turtleneck in the snow, etc. she CAN get it together and do it. So I guess I am saying, if these issues (and it sounds like they are) are taking that much time, and interfering with things he wants to do, you might want to try to intervene medically. Maybe switch up or increase antibiotics and/or consider steroids? When she was in recovery mode- we set a program where every morning she had to get dressed, brush her hair, use the potty and she got a prize. That was able to help her ONLY when the antibiotics started kicking in. Of course, we AlWAYS lay out clothes for school the night before. Good luck- I know how rough it is for these kids- and the parents. (Many nights I am doing laundry till 11 because I forgot she was low on her prefferred socks...)