dcmom

Hi Emma and EA mom, Just thought I would share a few cases that I know: My dd neurologist is very informed regarding pandas. He has a 22 year old patient, that he has seen since she was maybe 9 or 10. She had strep this year, and had a pandas episode with it. He felt she was able to manage it better at this age, but I was disappointed. One woman I have made contact with has a daughter age 16, she was in original NIH study. She had pex twice, and had multiple issues during childhood. She is now 16, and has been symptom free for about 3 years. (Good news!) Another woman I have talked to from the original study, has a daughter who rec'd pex at about age 8. She continued antibiotics until age 16 (she is now 17 or 18 I think) she has been symptom free since the pex. An aquaintance of mine has a son in highschool with pandas. He still struggles with pretty consistent ocd, but is managing with meds and therapy. Based on these (and other stories), it seems there is so much we don't know. It seems cases vary so much. I think we can hope for improvement (or freedom) from symptoms at puberty (with my daughter only be 5- that doen't feel like much reassurance), but we will have to proceed with caution. EAmom- is there something that makes you think IVIG will help in the long term? Do you think (like DR K) that the younger you have it the better? Do you know what the scientific explanation of that is?

Thank you.... it is so hard to figure out what is going on. To those who have done IVIG, have the OCD symptoms completely remitted after that? thanks

My five-year-old had her first (we think) pandas episode starting mid January. She has been on a cephalosporin (14 days), then amoxicillin (14 days) and now zithromax (we are on day 17 of 21 days). These have all been therapeutic doses. While has improved, she still has OCD issues that definately interfere with her daily life. (she can only wear one outfit or pjs, she needs to do excessive wiping after urination, and therefore avoids going to the bathroom, and her appetite and/or taste for foods is terrible). She still has a lot of anxiety surrounding these issues. I am trying to determine if this is still strep, residual brain inflammation that takes time to heal, or a baseline change. Have your kids ever had a pretty complete remission of OCD? If so, how long did it take> I am trying to determine if continuing on a therapeutic dose of zith would be helpful (but of course am concerned about tummy issues). Would a steroid burst at this point be helpful- or is it too late? Thank you!!

Amy, Thank you for the update. That is so great to hear, and it certainly gives us all hope..... Did you try to have the IVIG covered by insurance? Any pointers on that would be helpful...

I am sorry for what you and your daughter are going through.... Please say what area you live in, maybe someone could recommend a doctor....

Hi. We have had some homework issues as well. My dd has, so far, done very well at school (although she did miss 2 weeks during the worst of the episode), but she tends to crumble when she gets home- and at that point I have a hard time asking her to do homework. Firstly, I have learned to let go a little bit. I am usually very strict with school and homework- but I have come to realize that it is definately secondary to a child's health and happiness (especially at these young ages). My daughter is in K, she is a little behind where I would like her to be, but I know she can catch up when she is well (we will be doing "mommy school" this summer). I think it is most important to support these kids, and keep them feeling positive about schoolwork, than forcing them to keep up. In reality, before highschool, does it really matter? Luckily, dd's teacher usually gives the homework weekly (she gives all of it on Monday, due Friday). This way we have been able to do more on good days, and none on bad days. I also have taken the liberty of handing it in on Monday, doing some on the weekend, if need be. So far, 95% of her work has been on time. If things go downhill, though, I definately plan on talking with the teacher, and letting her know that Julia will do it in her own time. I did read in Tamar Chansky's book "Freeing your child from Anxiety" about accomodations to implement in school for anxious kids. One of them was limiting the homework, and she named pandas kids (because of escalating symptoms). I would definately talk to the teacher (maybe get a psychologist involved). The last thing you and your child need is more stress. Hang in there. It is so hard...

Indigo- thank you. Do you love your DAN doctor? I assume he doesn't take insurance? Is he expensive? Are you in Lancaster, PA? I drive through there monthly, on my way to visit family in Western NJ. If you think your doctor has been helpful, I would be interested in his/her info. Right now I am filling out paperwork to see a DAN in NJ, that my sister -in-law recommended. I have no idea, however, how much he knows about pandas, and LDN. We have a pandas diagnosis from a psychiatrist, who we like. We have two neurologists that we like, and a psychologist. All of the pediatricians I have tried here, though, are worthless. I am happy to coordinate between these specialists, but I am not a doctor, nurse or scientist. I feel I need a concerned doctor to consult on all of pandas dd health issues, that will think out of the box. Like- vaccines, rashes, overall health, etc. Please let me know if your doctor guides you through all of this stuff... Thank you!

Indigo- I assume you need a prescription for the LDN? Can you tell me what type of doctor you went to for that? I definately want to try the creme, my daughter also has uncharacteristic anger since the pandas started, and it makes her feel so bad.

If I were you, and this is a tough call, I would consider treating both with a strong antibiotic like zithromax for a couple of weeks (maybe up to a month). Then I would consider putting both on prophylactic antibiotics until school let out. I am sure it will be hard to find a doctor to go for that though, do you have someone really supportive? I don't think it is typical for a child with a normal immune system to come down with strep that often, what does her pediatrician think? The great thing about this forum is that you are not alone. It is so helpful to talk to someone who understands, it is hard to explain pandas (and the lack of help from the medical community) to friends. It can be very isolating. There are also many people on here who have been going through this for a while, and are very smart and informed about the science of it all (this is not me). Best wishes...

Doctors can be so frustrating. I wouldn't totally rule out psychiatrists. We recieved our original diagnosis from a great psychiatrist, who gave us a prescription for prophylactic antibiotics. Also, my daughter's psychologist called me today with the phone # of a colleague (psychiatrist) who would speak to me about plasma pheresis. I am sure they are rare, and I would ask them up front (before you pay the big $) if they believe in pandas and would help you treat with antibiotics if necessary.

I am not a doctor, only a parent trying to figure this whole thing out. Here is what I think: if your non pandas daughter is asymptomatic when she tests positive for strep, then it seems she is a carrier, and should be treated because of her pandas sister. If, on the other hand, she is symptomatic (sore throat, fever) and has strep that frequently, it is time to see an ENT and talk about taking out the tonsils and adnoids (for her health, and also for pandas daughter). I don't think anyone on the forum advocates this, and I certainly am not doing this, but I did meet a family (who was part of original NIH study) that kept all of their children on antibiotics, until pandas child turned 16, to keep strep out of the house. In other words- it is pretty important to limit exposure to strep. Good luck... side note: pandas dd is headed to ent in two weeks- we are planning on removing tonsils. Her sister's were removed two years ago for sleep apnea.

Just a thought: My helpful neurologist was the only doctor to admit to me that cultures are not always accurate. He explained, if one is a strep carrier, or if one has strep with out pharyngitis, the swab can miss the strep cells hiding out in the tonsil/throat area. Therefore get a false negative. It makes sense to me. In other words if the throat is not infected- they may not swab in the specific area where the strep cells are. At the same time, he did not indicate a blood test for everyone in the house. If you do have a consistent problem, though, I might consider it. Also, when you have the strep test done, you can ask them to test it for sensitivity to antibiotics. Antibiotics can fail against certain strains, and you may have to try another. We have done all 3 :cephalosporin, amoxicillin and now zithromax. My neurologist is giving her 20 days on therapeutic zithromax to help insure we have beat the strep. I think there may be a strep carrier in my daughter's class. Kids just keep coming down with it week after week. Some days dd comes home pale and exhausted (maybe because she has been exposed?) Theoretically, the prophylactic antibiotics are supposed to ward of strep. I think the jury is out on that- but we are on them now anyway. (we still have not kicked the OCD and anxiety). The infectious disease doctor I went to was NO help. I would suggest a neurologist who believes in pandas. Where do you live, maybe someone could give you a suggestion... Hang in there!

I read somewhere (sorry I cannot find it again) of a researcher who thinks pandas patients need IVIG frequently. I agree, from a lot of stories on the forum, it sounds as if pandas is a treatment, not a cure. That being said, the daughter of a friend receiveds monthly IVIG treatment at home for an asthma related condition. Her insurance covers it, and she says compared to the relief it has given her daughter, it is nothing. I am beginning to feel that something more along the lines of that treatment would be helpful. The only problem is th #### insurance companies. I haven't approached mine yet for IVIG, and am not sure how to go about that...

After reading this post, I did a little reading on some other sites. LDN does look promising, and I would definately be interested in trying it. Do I need a prescription for the creme? If so what type of doc might do this (my pediatrician is useless)? Do I need to see a DAN? I haven't done this yet.....

My non-pandas daughter had strep two months ago. She had no typical strep symptoms, except stomach-ache. (This was at the same time my pandas dd had strep that caused pandas.) She was treated with amoxicillin for 8 days (had to go off two days early because of hive-reaction). She did have a negative culture about a week after stopping the antibiotic. Since then the stomach aches have not gone away. This has been going on for two months. I took her to a gastro dr., he took a lot of tests with so far no results. He is suggesting she might have Irritable Bowel Syndrome, that it can be triggered by a virus. This is too much for me-can one strep strain have left both of my kids with ongoing chronic disorders? Could this still be strep that is not gone? Should I re-culture- even though I don't trust cultures (her tonsils are already gone, and my neurologist definately thinks cultures are unreliable)? I am considering begging the gastro (or ped) for antibiotics... One more question: Pandas dd has raised skin color bumps on both of her knees (this is relatively new), any thoughts? Thank you...

worrieddad- Were you able to get insurance to pay for IVIG? If so what diagnosis/ reason did the doctor give? I am considering IVIG for the future. I have a fried whose daughter gets IVIG treatment every month at home for severe asthma issues. I find it so unfair- our kids would probably really benefit from more frequent IVIG. If I took my daughter to the doctor and she couldn't breathe- they would do everything they could. It seems like (most) medical doctors are not interested in helping with mental health issues. And the mental health doctores are satisfied to treat with therapy and psych meds.

Thank you for the vaccine info. I found a lot of interesting vaccine advice on generation rescue (recommended by someone on the forum). The dr on that sight recommended: no vaccines with thinerasol (that would be the flu vaccine). I will definately discontinue that at this point. He also recommended to vaccinate no more than once every 6 mos, one at a time. That sounds reasonable to me. There were other vaccines he doesn't like, my kids have had them (MMR, Varicella, live virus polio). The only vaccine in the near future, for both of my kids is the 2nd Hep A. I will definately delay untill I feel pandas dd is back to baseline- I guess. I know my pediatrician will be of NO guidance, and tell me it is safe. There was also something on the site that mentioned do not vaccinate when child is on antibiotics. Well that could be always- right?

I am sure my five-year-old pandas daughter is due for some vaccinations this year. Should I be concerned? Are there some that are worse than others? I certainly don't want to not vaccinate her.... I feel like I have been researching pandas with every available minute, am a little overwhelmed, and the thought of researching vaccines has me running out of steam. Can anyone offer their insight? My pediatrician is useless, should I consult a DAN doctor? Can anyone suggest one in the DC area? Thank you.

I know and have talked to two families (not on this forum) that each have two children with pandas. In one family, the children have suffered greatly, and they both went quite a while before initial diagnosis. Those children are now teenagers. In the other family both children were treated with plasma pheresis (one about 9 years ago, one about 9 mos ago), and it has, so far, been a cure for them. It sure makes me think. Both of my kids are perfectionists. My pandas dd is the younger one, I have an eight year old, who is fine, so far. As per my neurologist (and to ease my own mind), I am working on having them see a ped cardiologist to rule out any cardiac involvement. All doctors have said it is rare to have pandas w/ any cardiac problems- but I can't help thinking they are both succeptible to complications of strep. My older daughter had her tonsils out two years ago after a case of strep left them swollen and infected, causing sleep apnea.

Oh Lacy, I agree. It is easier to have her crumble at home. So far, if I can get her to school, she holds it together. That is a comfort to me. It must be such a worry for you during the day- wondering how her day is going. It is so hard to even focus on anything else. There must be something at school that triggers this for her. Is there something that increases her anxiety level? Outside of her pandas, was she more anxious at school? While we are out of the worst part of the pandas, I can see my dd is always kind of on the edge. If anything bothers her, it raises her anxiety level to where she is over the top crying or raging. I think it is very hard (if not impossible) for her to control at that point. Our child psychologist has been helpful with giving me strategies to handle some of the anxieties. Best wishes to you and dd...

Hi Lacey, I am so sorry for what you and your daughter are going through. This really sucks (sorry only word I could think of) for these kids; it must be so confusing and horrifying for them. I only wanted to add, my daughter is the opposite. She holds together beautifully at school, and crumbles at home. The main reason (I think), is that all of her OCD issues are related to things she has to do at home (get dressed, eat, use the bathroom), and when she has to do those is when the rages and/or anxiety begin. Does your daughter have OCD issues, and if so are they related to things at school? Don't question yourself, and hang in there.

ARMom, It sounds a lot like pandas. My dd did not get any tics, but she showed the other behavoirs your son has. She had rages, urinary issues, separation anxiety etc. She is normally a sweet and very loving child. During her worst days she would one minute rage and say she hated me, and then crumble into tears and say she loved me too much. I can't imagine the guilt she must feel- saying anything mean is so out of character for her. My doctor was not much help either, luckily though she did the culture when I asked. My daughter had NO strep symptoms- the quick test was negative, but the 48 hour culture was positive. I have read in a clinical paper that many kids with pandas present without the typical symptoms. Maybe it is a certain strain of strep that is most likely to trigger pandas. All I can say is try another pediatrician, and lie. Say your child has been complaining of a sore throat and had a fever the night before, or try a CVS minute clinic or other quick clinic. Let us know where you live, and maybe someone could recommend a doctor. I have found just asking the receptionist if the dr treats pandas patients gives you your answer (they either say yes, or treats what?). I know many haven't, but I have had good luck with pediatric neurologists. Antibiotics asap will be the key if this is pandas.

eamom, We are new to this as well. DD just diagnosed in Feb with pandas (OCD started in january). I have heard some say that kids will grow out of pandas, but my fear is that they will not. To my knowledge there are no long term studies. I know a boy who is 16, and still struggling with OCD/ pandas. My neurologist also told me of a patient he has had since she was young, she is 22, and although doing well-ish, still struggles with flare ups. This is not encouraging. I do know a family who participated in the NIH study, and their child has been completely symptom free since plasma pheresis (about 10 yrs ago- I guess). This really makes me think.My neuro definately seems to think pex is a cure, but he also thinks its risky. Do you have any insight into the difference of the risk and results of IVIG, and pex? I know a lot of families have had IVIG on this board, but the results seem mixed, at best. I am reading and researchin so much, but there is just not a lot of info on prognosis, any thoughts or conclusions you have come to about where to go from here would be so appreciated. (MY dd is 5. She improved after initial course of abx- but now still on abx and her OCD has stalled. Have you done a steroid burst? Her first titers were drawn last week- after 2 mos on abx and were not high- around 150 and 200, is this meaningful?). Thanks, Eileen

Deedee, It is great to hear your son is doing well. We definately need more success stories on the forum. My next stop is the ENT. Do you feel it was helpful at all having the tonsils out?

EAMom: I like the idea of the clothes to bed, but for my dd it seems the clothing is an OCD thing and not a sensory thing. (If that makes sense) None of her preferences, dislikes, regarding clothes make sense- it is more of a mental block than a comfort thing. All of her clothes are already hanna anderson or gymboree leggings with tops- these are not comfortable. There really is no difference from her pjs in feel- again just a mental block. She also really stress about wiping after urinating- I guess she feels she can't get dry. She has taken to avoiding using the bathroom untill it is an emergency. We have just not had enough improvement on the antibiotics. It is so frustrating. Strep is still going around in school (a friend was just diagnosed today). I would love to pull her out for the rest of the year, but she absolutely loves school. Do any of your children have trouble with eating. She will say she is hungry- but cannot find anything that she would like to eat. She now dislikes many/most of her old favorite foods. Indecisiveness is now a problem, as well. I guess it is just an overall raise in her anxiety level. Momtotaylor- behavoirs started mid Jan 09, positive strep after 4 weeks, she has been on antibiotics since. How far are you from Morristown, NJ? There is a doctor there that has been helpful...