dcmom

Gatito- I am so sorry- you and your daughter have been through ######. So- you have a little farther to go, but you WILL get her well. Where do you live, who is your doctor (pandas and lyme)? So- a few thoughts: (we don't have lyme that we know of- so I cannot speak to that) This is your baby girl. She is suffering. She is not eating- which is actually life threatening. I think you need to consider a few things: You need to get Dr B, your lyme doc, and anyone else you think might be able to help on the phone today. Have you considered Dr Fallon in NY. He specializes in neuropsychiatric lyme, and I believe was at the big pandas meeting. He works for columbia, and I think might have access to ivig. Try to get some support at home, your dh, mom, sister- whatever, to help you with your dd. Then get on the phone, and demand help. Your daughter is in crisis and it is life threatening- do not be nice, do not let them put you off. Is this pandas- or lyme- do you know which is causing the symptoms. If you think it is pandas- can you get to Dr L and consider plasma pheresis? I wish there was some way I could help.... Hang in there, keep us updated...

Cassi It sounds like pandas, many of us have been through that same scenario While I agree that you cannot tolerate physical aggression- I also know we had to change the way we parent in order to help me daughters. I strongly suggest seeking a therapist- if even just for you, to help you with strategies to deal with these new behaviors. This was a great help to us. I also recommend learning about OCD and getting the book "what to do when your brain gets stuck: a childs guide to overcoming OCD". We found OCD to be behind most outbursts. Nothing really worked that successfully until we got proper medical treatment.

I agree with all of the above posters. My dd had not a fear of choking, but a fear of vomiting, if she ate. It started, and worsened slowly over two months to the point where she was only eating a small breakfast. It was really scary. She was in pandas crisis at this time. We, thankfully, got her into the hospital for pex- which completely stopped this issue. During this, we did lots of what the above moms did. I let her rent and watch TONS of movies. I would not ask what she wanted to eat, rather make a meal of small portions of multiple things she liked that are nutritious. I have some cute trays with different compartments, I would fill them all (bite sized sandwiches, smoothie (you can put protein powder and probiotics in a fruit smoothie) , cut up fruit, cheese, cookies, ice cream,, etc). Many times she would say she didn't want to eat, but I would leave the tray in front of her during the movie, and she could usually end up getting some of it down. I would say you can use lots of these strategies- but I would at the same time be aggressively pursuing medical treatment. High dose antibiotics, advil, steroids, ivig, pex..... Medical resolution will be quicker and easier....

Bump

I am so sorry- try ibuprofin until you get the steroids...

Have you tried ibuprofin? Many of us find it offers some relief for upticks of symptoms, as a temporary solution.

For those who are reacting to other illness... (I assume you have tried this, but I thought I would ask) Have you tried upping the abx, and adding ibuprofin, immediately upon symptoms flaring? We have found (so far) that this helps. If it doesn't help, we move up to a steroid taper. If that wasn't effective, and I thought infection was an issue, I would want to add another antibiotic to the mix, short term. This is a very frustrating illness.....

NJ PANDAS PARENT SUPPORT GROUP MEETING Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep October 11, 2010 7:15 P.M. JFK Medical Center NSI Conference Room 65 James Street, Edison, NJ Guest Speaker: Rosario Trifiletti M.D. PH.D. Dr. Trifiletti will present an informal discussion on the recent NIMH guidelines regarding the role of infectious disease in mental illness. Dr. Trifiletti is a pediatric neurologist in private practice in Ramsey, NJ and has treated over 300 children with PANDAS. To Register, please email pandashelp@hotmail.com Space is limited, you must register to attend.

I am not a patient of Dr B, but my doc does a tapering burst- starts high, decreases the dose every week, for 21 to 28 days. Are you sure it is a 5 day burst? The longer taper has been really helpful for my kids....

Nevergiveup Do you know of ANYONE else that does PEX? (I do know CHOP will on occasion, and of course Dr L)

Tmom- I once had a copy of Tamar E Chansky's book "Freeing your child grom OCD" (can't find it now). She had, in the back, a list of accomodations she suggests for pandas. I would think it would be helpful to bring to a meeting, I am sure you can use any back up paperwork. I KNOW one of the items was limited to no homework during an exacerbation. We haven't don a 504, but I will throw out a few thoughts: excused lateness (due to pandas ocd issues in morning) excused absences (due to same)- if school work is really a pressure, it might be helpful to take one day off a week, and work on stuff at home (if you think she could work better that way) limited or no homework extra time on tests or quizzes (or the possibility to take them afterschool, or in the school psychologist's office, if you think those would be helpful) NO marking papers for spelling or neatness during exacerbation I know one mom on here has a "safe place" in the school for her son (nurse's office, vp's office, school psychologist?), where he has a free pass to go, and there is an adult there who really "understands" pandas- and lets him have a little space, if he is having a rough time with something. Unlimited bathroom pass- not needing to ask teacher to go to bathroom unlimited locker access (so as not to add stress of remembering everything for class all of the time) I would think your ultimate goal now, would be to keep your dd calm, happy(as possible) and in school. I would, and make this known to the teachers/school, NOT worry about academic progress at this time. You KNOW she is smart and more than capable. Anything she were to "miss" during exacerbation, she could certainly catch up on when she is well. I would set that expectation with the school- that your and their goal now is to be as positive and encouraging as possible, and when she is "healthy" to offer her the opportunity to catch up on anything importante that she missed. Good luck.

This is a subject I have been dealing with for the last year. I will tell you what I have done... First, regarding cleaning of the classroom. I really think we cannot keep them in a bubble. And, as a mom of two kids with pandas/ocd (one germ ocd), I really think it is important NOT to make them paranoid of getting sick, or afraid of germs and sick kids. They are kids, they will be exposed to germs, and they will get sick. It sucks, and is scary, but we as parents need to come to terms with that. In school there are a million places to get germs. Handrails, bathrooms, cafeteria, library, specials classes, playground equipt, etc. I think it is probably a waste of your worrying and effort, to try to shield your child from germs. It is an impossible task. Of course, commonsense approaches that all families should take (washing hands after using the restroom, prior to eating, when you get home, etc) are a good idea to teach. That being said, my kids are on daily abx, which I am a strong believer in, to protect them from illness as much as possible. Also, I watch very carefully if I know there is strep in the class. If there is one child with strep, dd usually has an uptick in symptoms for a few days- I hold my breath and stay the course. There have been two occasions when 3 children have been diagnosed in a few days with strep, and at that point I have chosen to pull dd out for a full week. Those two times, there were subsequent additional children diagnosed, and dd was reacting. I worry constantly- but I don't want my kids to worry.

mommd- SO sorry you are going down this road again. Do your doctors have any idea why? was he sick? could there be an underlying infection? So as far as insurance goes. We had two daughters have pex. The first went in supposedly pre approved, but the insurance co denied it post procedure. They wouldn't pay the hospital. We hadn't really done anything with that when the next daughter went into crisis and needed quick pex. Of course the lovely insurance co denied the initial request, so we went into appeal (which can take like 20 plus days- which we did not have). Because of the mess up with first daughter, hospital required written pre authorization or pay up front. We waiting on the insurance co two weeks, while dd suffered and got worse. Finally we said we will pay up front, get us in. We paid about $26k to the hospital. After dd got home from procedure, we rec'd approval for both girls from insurance co. BUT the insurance co only sent us $5k (that is the contract rate) for the dd we paid out of pocket to. To make a long story short (lots of phone calls and aggravation), our insurance co said the since it is an in network hospital they are required to reimburse us- and the hospital did end up finally sending us a check for $19k. So- if your doctor/hospital/etc is all in network, I think you would get reimbursed. Be prepared for it to take a few months. Make the doctor hospital etc, aware you are still pursuing insurance coverage. We finally got approval in an appeal AFTER the peer review (that was denied). We called on my husbands human resource dept to fight with us- which I think helped. During the appeal process, my husband, myself, our doctor, and my husband's hr director called the insurance company every day. Our doctor wrote a letter and sent med records stating that delay of treatment was endangering my daughter's health. We gave them any study we could find. Good luck. Pandas is SO difficult to deal with- I found myself really angry at having to deal with insurance co too. Hang in there. PS: We were resigned to spend the $26k in order to get dd well- I think that is a good place to get to when dealing with this- so you are not devestated if you don't get reimbursed.

Tenacity I pm'd you my email.... I agree with everything Alex said- we have followed those rules, and me kids are doing well. Alex- I have been thinking about your family- how are things?

We had some of that with healing too- dd hadn't gained a lb in nine months. After pex, I think she was making up for lost time. She ate, she gained, she grew, and it has leveled off. Try not to worry, offer healthy choices, keep her active, breathe, and things will most likely level off.

I haven't done IVIG- but am her all of the time so I will give you a thought... Who is your treating doc? I know Dr K, who sees a lot of the kids, and has done the most ivig- is pretty adamant about some things. The first is that (I think) it takes at least 6 weeks to start to see improvement, and during those 6 weeks kids often get worse. The other thing is, I think he prefers to wait about 3 mos in between treatments. I would consider a consult with him if you are unsure..... The other thing is, I would be sure to test for possible underlying infection and/or allergies prior to ivig #2 (if you didn't do so already).

Laure- IVIG is intavenous immunoglobulin. It is a product that is made from the plasma of thousands of people. It is typically done in a surgical center, infusion center, or hospital. For pandas, it is generally thought that high dose IVIG over 2 days is preferable. It is thought that the good antibodies bind to the bad or autoantibodies, and/or the high dose reboots the immune system. This hopefully causes a remission or "cure" of the current pandas episode. The jury is still out : for some ivig does not work, for some it takes more than one ivig procedure, for some it brings relief from the current episode, and some think it is a cure. The answer you get, depends on what doctor you see, and what parents you speak to. Many times with ivig, the child will experience a worsening (sometimes dramatic) of symptoms for up to six weeks, prior to seeing improvement. It is invused through an iv. Side effects are usually mild to moderate: headaches and naseau. There is little risk- mainly that it is a blood product (although tested and cleaned). PEX is plasma pheresis. (full disclosure: my daughters had this) It is currently only being done regularly at one hospital for pandas. If this is the treatment you want- you need to see this specific doctor. It is an in hospital treatment. A central line is inserted into a femoral vein under anasthesia. The child is then hooked via this line to the pheresis machine for one treatment a day for three days. The treatment lasts about 2 hours. The machine withdraws blood, spins it to remove plasma, and returns it with a man made solution. The theory behind this is that it removes the antibodies, therefor ending the current episode. I can tell you from my experience- pex ended my daughter's current episode. They were both in crisis- which remitted immediately. Not everyone has had this success. It is also not a long term cure. The risk here is small as well- mostly due to anasthesia and a central line. Many insurance companies will cover neither procedure for pandas- if they do it is usually after a fight- so be prepared. I do not know Dr B- although it sounds like he is pro IVIG and somewhat helpful in getting it covered by insurance. IVIG is much more readily available, and less expensive than pex. PEX fared slightly better as a treatment in Swedo's original study re pandas. Most doctors do not have access to prescribe PEX- so options for that are very limited. Your first step should be in looking for and dealing with any possible sources of infection (strep, mycoplasma, lyme and tick related diseases) which Dr B should be well prepared to do. You cannot successfully manage pandas without getting rid of the infection first. Once the infection is addressed, if there are still issues, you can consider steroids. So- you have a few steps to try before these procedures- Good luck with your appt with Dr B. Whatever path you choose, try to be patient, time is part of the healing equation...

Wornout mom- the taper has given my two girls immediate longer term relief- you might want to give it another try...

Just want to chime in, stomach aches are DEFINATELY a pandas symptom. Read Dr K's adolescent onset. My dd has stomach aches as her first and one her her major pandas symptoms. This I think was caused by heightened sensory, and resolved with antibiotics and steroids. I am not saying that it is or isn't pandas- just want the fact that stomachaches are a symptom of pandas out there...

I think it is great your ped wants to help. My advice, however would be to see one of the pandas docs, and use the ped for local support - if at all possible.

Have you ever had success with steroids?

My daughters at one point improved to about 90% on antibiotics (30 days on full strength zithromax). For them, though, there was a point where tha abx did not do it- we had to do a steroid burst- eventually both had pex. I felt very strongly, considering my children's symptoms, that is was very important to erradicate their symptoms as quickly and completely as possible. It was very difficult for them dealing with the symptoms, they were not happy, and I did not want them to live like that one minute longer than necessary. My one daughter had a very mild initial onset, that lasted for 9 months (she was w/o treatment, because we did not know it was pandas at the time)- it only eventually went away with treatment. Some kids seem to resolve on their own, many do not. If you are lucky enough to have a diagnosis (many do not)- I would pursue treatment as aggressively as you are comfortable (always relying on the risk vs reward equation).

HI Laure- You will get your daughter back- and more importantly, she will get herself back. This happened to our older daughter at age 8.5. She is our oldest. We are/were fairly strict and she was thriving, she was a high achiever in everything she did, and such an enthusiastic sweet girs. YOU need to hang on to who your daughter really is- because she is there, under all of the ocd, fears, and anger. AND you will be the one to help her find herself, and remind her of what she can do, once she gets treatment. My dd has really turned around. YES we still have residual issues, BUT they do not interfere with her life. She still has some anxiety, and I think some cognitive difficulty (spelling- but no problem with conceptual). BUT- we can talk about it and work on it. We let go of everything during crisis. It was basically get her to eat, and not be miserable. She was out of school for 2 months. But, after treatment she went right back to school- and the teacher commented that she was immediately back on track. At home, I could tell it took a bit longer, but she is doing really well now. I have let go of a lot- eased on schoolwork, extra curriculars, room tidiness, etc. But- I try to be tough on the ocd- which means we go out if she doesn't want to, we eat out, she tries out for the school play (because she wants to) even though the anxiety is high, etc. And I am militant when it comes to a healthy lifestyle (to bed early, eating healthy with frequent snacks, limited screen time, time outdoors and family activities). Oh- and one thing I wish I tried much earlier- Melatonin if your daughter has trouble getting to sleep at night (although don't use with steroids).

Give it 24 hours. If you think it is coming back, increase the dosage and give advil every 8 hours. I would try this for 5 days, and then slowly try to wean back down (one thing at a time). You probably wont be able to get to Dr L in time (I usually do this on my own)- but I would set up an appt with her sometime in the next month- you can always cancel if he is fine. Does he have a loose tooth? exposed to strep at school? another illness? Lots of kids have what I call "blips", not full blow episodes, from exposures. Stay calm- you need to see a pattern over the next 3 days. Was it a false alarm? Is it a small increase in symptoms that plateaus? Or is it continuing to get worse daily? Update this thread often- and everyone here will walk you through this...

Laure- I know this is so hard. My daughters both had these issues. My little one, 6 at the time had it the worst. It definately went hand in hand with her health, and the more successful we were at treating her pandas medically, the better these issues became. When she was "healthy", we had to work a little to break some bad habits- but right now I am happy to say hygeine is not an issue at all. My older one, 9 at the time, had a milder form of this- but as she sunk to crisis level it became worse also. First- I re prioritized life (which I am sure you have done), and pared hygeine down to the minimum. In the morning, I really only required breakfast. During the worst times she went to school in footeed pjs (luckily she was in K) and rainboots! Obviously if your daughter is 9- this won't work. For my dd the issue was comfort (sensitivity), but there was more, there was ocd wrapped around the sensitivity- where she was really worried about the possibility of being uncomfortable. So, for clothing- I would try to find the minimum that you can bear and she will agree with. Can you buy some gymboree or hannah anderson leggings and a tunic- in plain white and gray. This is the time to get her into some kind of clothing EVERY DAY- and get her out of the house in the morning EVERY DAY- even on weekends. See if you can get her to school in something halfway decent (and I really mean halfway- the minimum standard you could accept) and send her to school but pick her up prior to lunch (so she only has to do a half day in the outfit) and do a reward- lunch out? shopping trip? rent a movie? Ease her into it- but at the same time be firm that she takes the next step. Bedtime should start early. Maybe don't allow tv during the day (if that is possible)- have an early dinner, then she has to brush her teeth and hair, get in PJs and lay out the outfit for the next day. Then reward her with her favorite show. I insisted on teeth. If needed, I held her down and brushed them, because like I said dental issues can cause a problem for pandas kids. I don't like to force things either- but if it comes to it, and it will cause them harm not to do it- that is the option I chose. It didn't seem to affect the outcome- in fact, she HATED when I held her down, so the next few times usually she would cooperate. It will be much harder with a 9 yr old- my daughter was 6- but TINY. You can empathize- I am sorry, I know brushing your teeth is hard, but there is no option, if you do not brush your teeth you will have cavities. I love you and it is my responsibility as a parent to keep you healthy. I did let brushing in the morning go. If at all possible, ACT rinse is helpful. I also get them in for a dental cleaning every 3 months. I only required hair brushing at night before bed. (luckily she has thin blonde hair that falls into place). I would hold her and brush if I needed to. We REALLY minimized the baths. At age 6- I could get away with once or twice a week- and that is what we did. I have done sponge baths standing in the tub if needed. We did all of the hard stuff at night. I tried to stay very calm, nice and matter of fact with it. Your daughter will definately react to your level of frustration. We did this for months- it was okay. Mornings were hard- so she really had to do nothing other than get dressed. She got a wrapped prize every morning on the way out the door to school. All of these things helped us cope- but the only thing that really helped was treatment from a real pandas doc. Both dd's needed abx, then steroids, then eventually pex. But- they are pretty well now- no hygeine issues- some minor clothing sensitivities. Our psychologist was helpful in helping me to plan this stuff out, and in having someone to talk to Hang in there- your daughter will get better. The hard part is, they know this is going on: two weeks before my older daughter (who had taken to wearing only old tshirts and shorts, and avoiding bathing, etc) had pex, I was in target with her and she saw a cute dress. She said maybe after pex I will want to wear dresses again. (so sad) But- she does! So there is a light at the end of the tunnel- and it doesn't have to be pex, many here get remission with long term high dose antibiotics and steroids. Have hope, and give your daughter hope too...