dcmom

wornoutmom- I have 2 dds with pandas. They are young 6 and 9. I ALWAYS go in to see Dr L first, by myself. This is my choice- but she is fine with it. I can talk much more freely about their symptoms, then. After her first appt with a doc, dd6 (5 at the time) got REALLY tired of hearing me list all of the horrible symptoms. I decided not to make her go through that anymore. I go in, discuss what is going on, then she examines and talks to them on their level, and then we meet again without the kids. I forget how old your child is- and don't know how they would feel. Mine are relieved to spend less time in the docs office- and talking about ocd symptoms is difficult.

Dr L is so compassionate and thoughtful- it will be worth your trip. (We were just there yestarday). Bring a list of all of your questions....the appt time is long- but goes so fast...

Hi Gat's Mom- I am sorry you are going through this, again. Just wanted to offer you some hope. It took my dd 30 days on zithromax before we really saw improvement. It then took another month of sawtoothed progress. At that point, she was at about 90%. Unfortunately, it does take time. I really think you need to be prepared to give it 30-60 days before making any judgements. It is SO hard to be patient, I know. If you don't see a big improvement, will you consider a steroid burst?

Although we haven't had to use it, my daughter's neurologist wrote up a request to create an IEP-OHI on her prescription pad, for me to give to the school. I don't know the process- I would hope if you are under the care of a psychiatrist or neurologist who would write up diagnosis and request for IEP, that there wouldn't be a huge issue, or a need to evaluate the child. I would come up with a proposed list of accomodations requested prior to meeting with the school. Good luck!

Yes it is OHI- straight from my neurologist...

Alex- how is everything going? I have been wondering about your family....

Peg- if the IVIG is helpful to her, it will be easier for her to work on her ocd when that is done. My dd was 5 at onset- we could not even bring up or look at the workbook or ocd. She was in denial and refused. Once she had medical intervention, and some time went by, at calm times, she could admit to her issues being ocd. So I guess what I am thinking is, if you study up, and get your plan in place- it may be easier for you to tackle after IVIG (hopefully). It will (of course) be harder, if you don't know the obsessions- but I think you can still work on it- especially if you feel she understands. The book is fabulous- just to let you know- everytime my kids asked a question along the way, it would literally be answered in the next sentence. The authors must have worked with tons of kids in creating it. Certain tools (my favorite is Delay- that is fairly simple) could work for you, even if you don't know the obsession. So for examply, my dd has the compulsion to sit on the potty (for hours). Her obsession is fear of throwing up. So I try to delay her for 10 minutes, and we will do something (read, cuddle, etc). It works best when they are not in the height of hysteria, of course. So if you knew a compulsion, and told her about the possibility of delaying it (maybe start by practicing with a timer that she can have) and instead doing something fun while the timer is ticking.... Meg's mom could probably be a huge help to you here....

Family of 4 - I completely agree with your doctor's assertion that it takes educated, dedicated and most likely financially comfortable families (for the most part) to figure out this disorder. I agree that is why this apparent "phenotype". I think MANY kids go undiagnosed, or ocd, bipolar, etc. It also takes a lot of confidence as a parent to get help for mental illness in your family IMHO.

Peg- Have you looked at the workbook "What to do when your brain gets stuck"? I have been using it for my kids (age 6 and 9), and they really seem to get it. It has helped me to help them as well. Possibly you could adapt it to work with your daughter while looking for a therapist? It teaches kids to "I spy" for ocd, and then gives them a set of tools (like delay, do the opposite, change it up, etc) to fight ocd. I really don't know your daughter's situation- but if she could listen to you read it to her- it might help?

Hi Jennifer, that is tough. My daughter is in a large, urban public school. She is in first grade, pandas started last year. Luckily, they have been fine with everything. I basically do what we need to do, and they don't have a problem with it. Two thoughts: Does your son see a psychologist? I would see one with him, you could come up with a plan for getting him into school for the full day. The psychologist could also then give you a letter with diagnosis: pandas, ocd, sep anxiety, and the accomodations or plan for handling it. Possibly follow that up with a note from a medical dr (neurologist?). The other thought is, when my dd's infection was finally addressed in a serious way (long term full strenght zithromax) we saw a huge change, and she was able to go to school much more regularly. Have you had any success treating him with antibiotics and/or steroids?

Wendy- What did the doctor say? Do you think this is a current strep infection, recent, or how long ago? Did you dh have any symptoms of illness in that time frame? Does he have any history with strep? Has he been cultured recently? My dh and I have both been cultured twice, negative, in the last year. We are planning to have our titers done this month. Keep us posted...

swim- Words cannot express my sympathy. We are going through this ourselves now. My younger dd had an acute overnight onset of pandas last year. We have now come to realize that her older sister, 9, has also been suffering with pandas, although milder. It was so hard with the first child, but I have to say in some ways with the second child- it feels harder. It just takes the wind out of you completely. I feel like I have been punched in the stomach daily. I have to tell you, you are not alone. There are many of us who have two kids with pandas on this board. Most that I have talked to have the same experience of kids ramping up at the same time. Mine seem to. The good news is, maybe you have caught your younger son early. Maybe you can get him on high dose antibiotics and a steroid burst and see fantastic and long lasting results. Do you have a good pandas doc? My heart goes out to you. It is really tough having two kids showing symptoms at the same time...

Faith, I haven't read this whole thread, but I really feel for you trying to figure this all out. I just wanted to mention a few things from my family's experience, for what it is worth: My younger dd had clearcut, textbook pandas onset. Overnight urinary frequency, ocd, separation anxiety, tantrums, spiraling down over a few weeks, then with positive strep culture. No high titers. Responded at first onset to a month of , very positively. She then has has subsequent episodes- one week post T&A, then strep exposure, minor blip with lost tooth, major episode post H1N1. After the first episode, unfortunately the antibiotics alone did not stop the symptoms. She has done 2 steroid bursts with extremely positive results. We did end up doing plasma pheresis for her, because it felt like she was more often in an episode, than out. That seems to have helped calm things down generally, although not a cure so far. Older dd had strep at same time as sister. Keep in mind neither had ANY symptoms. We found out because younger one had it in class, then I found pandas and had them tested. Since older one had strep she has changed, but it was MUCH milder than her sister. We may have never found out she had strep if it wasn't for her sister. She has had anxiety, ocd, stomach aches, restrictive eating, moodiness, etc. that has come on more slowly than her sister. But it is there. So I guess I am saying- you don't need to find the strep- or what initially triggered this. It may not be possible. My kids definately seem to have reactions when they have any immune challenge, though it doesn't always make sense. I would really consider a steroid burst. I know it is scary, but if Dr L is confident- I would try to trust her. I can tell you it has made a HUGE difference for my little one, she has gotten longer than temporary relief. The jury is still out on her sister, she is on he second burst. The first one worked wonders, but temporary. I can tell you, even if the relief is temporary, as a parent it is SO helpful (although heartbreaking) to see who they should be. It helps you to push forward with treatment. This is a tough road.

Momofgirls- That is wonderful news! It has made my day! PLEASE keep us updated, esp at 6 month and 1 year mark. I am planning on bringing my girls to Dr B soon- but want to see that monthly ivig is working for some, before we consider it.

We have been doing one culturelle capsule per child everyday. I am interested in what others are doing. My children cannot swallow pills and are picky eaters... If you can suggest a brand, dose, and how you administer- that would be great! Thanx.

Hi everyone. As most of you know I have two dd's with pandas. One has had pex, the other only steroids. While they are both managing, and the one who had pex is 90% better- they both still suffer some pandas issues. They both seem to react to many illnesses, not just strep, now. I am contemplating IVIG. I know from the forum that likely my kids will need more than one. I am kind of holding out to see how those who are doing monthly ivig progress in the next six months. I, as I am sure many others here, would love to hear your child's journey with the monthly infusions. What is the progress like? How much better are they, and how many symptoms remain? If you could please remember to give the forum an update every three months or so, and especially at the 1 year mark- it would be so helpful to us!!!!

What is the lyme treatment protocol? I think it is entirely possible, that even if strep is the intitial trigger of pandas and clears up (does it only have to be strep though- or is that just something that is imposed for research procedures), that if a child is fighting any other underlying infection (like lyme), their immune system is constantly engaged, and therefore they are constantly having an autoimmune reaction.

Momtocole- We have had lots of sleeping issues- although not quite as bad as you describe. I really never found that anything helped. However, after my dd had pex, I wanted to break the no sleep cycle, and get her some rest. I did benadryl for 4 nights in a row. I am wondering have you tried benadryl? Maybe if you tried it for 4 or 5 days, you could try to break the pattern of not getting to sleep. Also- I am totally for letting them sleep in- don't feel guilty- his health comes first, and if you can logistically deal with it, I would let him be late (or take off) school for a month if need be (assuming he is in school).

Sara- It does sound like lots of appts, which I know is hard on the kiddos. Do you know that all of the doctors are believers in pandas? I would think you want to get immediately to the pandas specialist (is that the immunologist?), who will actually offer you treatment (antibiotics, steroids and ivig- if needed). Then I would think you could take time to do the rest of the appts- if it would be better for your dd. It sounds like you will have all of your bases covered. I am interested if your Dr talked to about why you are switching between 2 antibiotics? Which are they? Does your dd take daily? Interesting, Thanks.

Tantrums- I am so glad to hear things are going well. I think you will continue to see improvement over the next few months. My advice: - keep your child on prophylactic antibiotics, and if things look like they are going downhill for 3 days, up the dosage for a week to 10 days - keep the stress level low, lots of sleep, good foods- really baby your child for the next year (health wise) - avoid all immune challenges if possible: surgery, dental work, vaccinations, etc for at least a year if possible - consider having child see dentist for a cleaning every 3 months- do avoid dental work - if you haven't, see a pandas specialist. Have a steroid burst (did you do one?) in your cabinet for use if your child has issues after an illness These are my thoughts, and part of my plan for dd. I think if your child does have another episode, the sooner you zap it with antibiotics and steroids, the closer to baseline she will get. Please keep us posted, especially if things continue to go well.

Gat's Mom- Try to be patient. It took 30 days on full strenght zith to see something we could call major, sustained improvement for my dd. Much of the recovery is sawtoothed. Some things improve, some may worsen, but the overall weekly trend will hopefully be positive. Unfortunately, still now, I have found I have to look at the week as a whole- not individual days. While dd is still doing really well overall- she will have a pandas-y day here and there. Buster and EA mom have developed a system where they chart their dd's behavoir. It is broken down to maybe 10 pandas behavoirs, and each one is given a ranking from 0-10 in severity. I never did this- but think it would be so helpful to see the trend.

thanks- do you remember what the sedative was?

I am planning bloodwork for Caroline, age 9. She really panics. I do the emla cream, but it is not enough for her. I know there was a thread on this- has anyone given any kind of calming med before testing. I want to have an immune panel, along with lyme, mycoplasma, pneumo titers, strep titers, etc. I can't even imagine bringing this up to her. The last two times she had bloodwork done (and her ocd and anxiety were much lower then)- she threw up and nearly fainted after.

Buster- followed our path and it worked out really well. My only thought is possibly the initial box should be expanded. I had no experience with ocd- some of the behavoirs can appear to be other things until you really break them down. Possible add something more eloquent, but the idea of sudden onset of uncharacteristic issues that could include: sensory, adhd, temper tantrums, emotional lability, restrictive eating. Depending on what you are proposing this chart for- I wouldn't want someone to be turned away because their child doesn't have the "handwashing" type issues that many think of as ocd.

Hi everyone! Thanks for the thoughts! I am calmer, she is eating more today- maybe it is the steroids kicking in. She has always been a robust, varied eater. The pandas has brought about stomach aches (we did some testing to rule out some things) and a fear of throwing up and/or getting sick, and less of an appetite. This is, for her, and ocd issue. She says she doesn't want to eat because she is afraid she will throw up. She never throws up. I appreciate the tips- I have been upping the snacks available. We eat very healthy- but I have become a bit of an ice cream pusher since pandas