dcmom

Ok- I am thinking of getting the girls tested. We are moving to NJ- I guess I am thinking of Dr Brian Fallon or Dr Jones (CT). Any thoughts? As far as the igenex testing- I would prefer to get it done prior- I know I can order the kit- do I have the blood draw done at a local lab, and will most do this testing for you? thanks!

I do plan to spray the yard for tics- and keep the deer out (although I know deer are not the only animal that carries these ticks_. I have concerns with using deet on the kids on a daily basis. I will certainly keep them out of taller grass, etc. Any ideas of something less toxic to use on the kids?

Jill- I am with you! When we started this pandas path over a year ago (no one on the forum was really talking about lyme)- my girls had an abrupt onset following a strep episode. We immediately were diagnosed with pandas, and they have been very responsive to pandas protocols. They are both doing really well now, although do have minor ocd/mood flares when exposed to strep. I do think it is a good idea to be tested for lyme when starting down this path- as for many it may be lyme, or lyme may be the underlying infection that is causing the pandas to be chronic. I would certainly suggest this to a new parent, especially one without a clear onset or a correlation to strep. That being said- the financial aspect is rough. To need to do a cunningham test, igenex test, go out of state and see expensive docs- and for many families for more than one child- ugh! And many parents finally make it here after years of expensive therapy and doctor's appts. If my girls cannot maintain their "health"- I will be at Dr Jones doorstep immediately. I do have a lyme question: We are moving to NJ, and area where there are deer and lyme is prevalent. I do plan to deer fence the small yard- keep the grass short, etc. Any other thoughts from those who have been down this road- as to how to prevent- or detect- future exposures? We will be getting a dog also.... Thanks!

Bronxmom I worry all of the time. Don't google this issue- you won't sleep for a week. I live in DC. Our water quality is terrible, and they use chloramines here to clean the water. Chloramines are impossible to filter out. We drink and cook with only bottled water. We reluctantly bathe and launder with tap water. If you have chlorinated water you can, for a price, have a good double process filter put in to remove most of the chlorine.

I think maintaining with pred is a very interesting idea. We have done month long tapering bursts, with great success for both of my girls. I often think how perfect life would be if we could do long term pred- I am SO interested. I think it would take a higher dose for your child to become immuno compromised.... I am going to talk to my SIL (pharmacist) about this- will report back if she has anything interesting to say. Please keep us posted. Also, our doc said when we got to the last week of the taper, that there were no side effects at that level- maybe that is the same with your dosing?

Jag 10- Awesome news! These stories of our kids getting better really lift me up! On the dentist: I have decided to take the opposite approach of avoiding the dentist. I now take my girls every 3 months. We haven't had flare ups with cleaning (I just continue the full strenght abs we are still on)- but I am extremely concerned of letting dental care get away from us, and them having to have anything other than a cleaning. My dentist was very understanding also, and actually looked up pandas after I talked to him about it. I think if you just tell your dentist that it is the same mechanism as rheumatic fever- they will get it.

I am so sorry you are struggling with this- I have been there. I don't want to scare you- but I would really watch. My older daughter actually got pandas at the same time as her younger sister. She was extremely mild- more hidden ocd, defiance, tantrums, etc. We put it off to stress, and ensuing preteen years. Nine months, and the flu, and she was definate pandas and ended up having pex. The nine months prior to her going into crisis were rough. My dh thought I was crazy when I brought up pandas for her- she was exceling in school and functioning well. BUT- my extremely sweet, loving, enthusiastic, helpful child had become anxious, depressed and defiant. There WAS a change- and that is the key. So- if YOU feel your daughter's behavior has changed- I would ask you to really take it seriously. (I think we might have prevented my dd's crisis if we had been treating her). Four, for my kids, has been a great age- much improved over 2 and 3- so I don't know if it is normal to have her regress in behavior now. See if it passes- if it does, I wouldn't be too concerned. BUT if it continues- I would consider consulting a pandas doc if you could- or getting the Cunningham test. For me- the more info I have, the better. If she is pandas- know now and maybe you can head off some stuff. It was SO hard for us to see the second child having pandas- even though it was right in front of our eyes. BUT, many of us on here have multiples, it is not a coincidence. Hang in there!

Hi Vickie- Even when our kids are well- life will never be simple again, will it? I think you are thinking about, what I would, and will do, when vaccines come up again. I would (like you and others said) look at each individual vaccine: is it really needed? if so when? what are the real stats on the illness the vaccine is trying to prevent? I would then decide which ones I thought were important (hopefully with the help of a concerned ped). I would then check for titers if the vaccine is a booster. Then, I think I would go ahead, one vaccine at a time, and only when the child is extremely healthy. I don't even remember what vaccines are for a four year old! Please keep us posted on what you decide and why- as we will all face this challenge! BTW- I would totally advocate any parent of one pandas child, being as vigilant with their other children. There are just so many of us with multiples!

Needcoffee- You are an awesome person, and a wonderful mom. You have been through it all. I am going to be direct- since your son has a pattern of behavoirs clearly associated with strep, you can be somewhat confident in your pandas diagnosis. I agree with SF mom, it is very important to rule out co infections (especially lyme). There are only a handful of doctors that will help you with pandas. If it is at all financially possible, I would get both of your children to either Dr K (chicago) or Dr L (maryland) as fast as you can. I, and many on this forum, have wasted money seeing other docs regarding pandas. Your son (and possibly daughter- I thing almost half of us have multiple kids affected) needs to be on daily antibiotics, very long term. He needs to be considered for a steroid burst, and he most likely will need IVIG or plasma pheresis. Prior to seeing one of these doctors- you should have the pandas research test (blood test) done by Dr Madeleine Cunningham. Pandas is exhausting (and I can't imagine having this on top of everything else)- but the good news is, with a lot of work and (unfortunately) money, it is treatable. I don't know anything about FASD- but I wouldn't be shocked if some things you attributed to that, could be pandas. Pandas is an insidious, crippling disorder that affects absolutely every part of a child's personality, behavoir, etc.

Colleen- I am so sorry to hear you are having to do steroids- I hope things arent' so bad... I am not sure what a medrol pack is, but, I am a strong advocate of a 4 week, tapering burst. My doc uses these as part of a treatment plan, and many of us have found long term remission from this type of RX. (my dds are little, so my dosing wont help, but I think it would be done by weight?). I really don't think a 5 day burst is enough, at all. Good luck, and keep us posted!

Gosh that is a rough one. I am going to go against the tide, and say- is there a way you could postpone, even for a week, to see what this recent change is? My kids have had some sawtooth healing, but there was never major improvement overnight that was then lost. I tend to panic, but with pandas, need to remember if things are going well, trending positive, I think it is important not to stir the pot. There is a very real possibility he could have IVIG and it could turn things upside down for up to 6 weeks. That is impossible to prepare for. You need to go with your gut, as a mom- you know your child best. I just wanted to add my thoughts, fwiw.

So sorry you are going through this. I agree with the above- it is really hard- but do remind yourself that your sweet loving daughter is trapped in there, and suffering so much. We had a lot of defiance, and anger from my dd during her pandas episode- it all went away with aggressive treatment. From the sounds of things- you need to attack this medically (I know easier said than done). Have you done a month long steroid burst? Are you considering IVIG or PEX? Also- in the meantime, try to keep the house as calm as possible. Sit the other kids down, and explain what is going on- that your dd is sick, and this behavior will not be accepted from them. If they are older than 5, I think they are capable of getting it. Try to treat them once a week (movies with Dad or grandma?) to show them you understand they are suffering- at the same time, try to set some time aside just for you pandas dd, alone. It is a relentless, exhausting, logistical nightmare. I have been there. Call in all of your favors, and hit the caffeine. But- you will be there for these kids- and we are there for you. Also- have you tried smartyjones' technique of repeating from The Explosive Child book- it is extremely helpful.

My ten year old daughter, who four months ago was crippled by OCD (wouldn't eat, bathe, sleep alone, go to school, or leave the house)- thanks to PANDAS, spent part of her day today flying 900 feet over the Outer Banks parasailing!

Yes- there could be a connection. Pandas can cause all of the symptoms you describe. I would start by immediately getting to a doctor for a strep culture (not a quick test). I would also get an rx for strep titers: aso and antiDnase. These can be helpful, or meaningless- but it is good to have them done initially. Please tell us where you live, so we can request a good pandas doc. Unfortunately there are only a handful of docs that can successfully treat pandas- and it is important not to waste time and get to them.

I will be there!

Give yourself a break- get the balloons. But then at a quiet time have a talk about him needing to stay calm- give him suggestions like go to his room and count to 50 or whatever. Get your husband on board- suggest the repeating. My dh is same as yours- the repeating gives him a script and helps him stay calm which really helps. Start the day with telling him what the plan is- so there are no surprises. If he then says I want to go here- tell him it is not in the plan right now- but we can look at doing that later in the week (if you can do it then). It is a lot of managing for you and dh.

We definitely had this type of thing with my older pandas dd. It is pandas- it got better as she got better. Try staying calm, and use smartyjones's technique of repeating. It sounds silly but it does help diffuse the situation: I want ballons! repeat: You want balloons? I am sorry, we can't do that now. I need balloons! You are so mean! repeat: You need balloons? I am mean? on and on We find after three repeats, she fizzled down and goes away (but that depends on how he is doing) AND it helps the parent not to get drawn in and agitated- which can worsen the whole thing. Works great for DH too- still use it sometimes- is a great technique for life... Give it a try and hang in there!

Santi- If your child has ocd- I strongly suggest getting an ERP trained therapist to work with you, on how to handle your son. I also strongly recommend the book "what to do when your brain gets stuck". It is a workbook for kids (and their parents) about fighting back ocd. It is excellent, and will help you with tools and a language to use with your son. Good luck. Have you looked into the possibility of pandas?

Kita- I will second what Meg's mom has said. Your daughter sounds like she is suffering from OCD. I would aggressively pursue the possibility of pandas. My dd, at age 5, all of a sudden had MAJOR clothing difficulty. She would only wear a few select outfits, no panties, and one pair of shoes. It eventually worsened to the point of only being able to wear PJs (which she did, to school). She wouldn't eat, and had trouble sleeping. She was on edge. She was diagnosed with pandas, and after treatment, is back to wearing panties and most of her outfits (has not done any type of jean yet). The best advice I can give you, is that if you are in a financial postition to do so- get to one of the pandas docs: Dr L, Dr K, Dr B and Dr T. They are it, for the most part. Unfortunately, pandas is not a disorder where you can go to your local doc for help. They don't get it. Where do you live? In the meantime, I would get a strep culture (not a rapid), and have a blood test for strep titers done. You should also consider getting an experimental test for pandas by Dr Cunningham at OSU done (it costs $400- no insurance covers). There are different schools of thought on this- but I found that when my daughter(s) were in true crisis- keeping them happy was my main concern. If that meant my dd wore footed pj's and rain boots to school (yes- luckily it was Kindergarten)- that is what we did. My goal was: some joy, eating and sleeping- during a crisis. So- if this could be pandas- if it came on quickly and has snowballed- I would work hard to get her treated medically before really pushing the ERP. Once they are helped medically, the ERP does wonders, and they shed their ocd issues rather easilyl. I am sure you are totally overwhelmed- hang in there.

Our experience with UHC and plasma pheresis, for BOTH daughters was as follows. Doctors office calls UHC, and they say not approval needed. Docs office gives diagnosis and treatment code. Daughter is admitted- after procedure we receive a letter stating it is not covered - "experimental". Hospital doesn't bill us right away, and in the meantime other dd goes into pandas crisis and needs pex. Again, doctors office calls UHC, and they say pre approval not needed. This time hospital requires pre approval letter or no go. Ultimately, then, we ended up having to fight UHC for 3 weeks. Doctor and I talking with them daily- saying they are jeopardizing daughter's health. Finally we decide to put the money up front, and just get daughter relief. We pay $25k, after procedure, and a lot of fighting by doc, me and husbands HR - we get approval on both girls. UHC pays their in network rate of $5k each. Now we are trying to get our $20k back from the hospital. Moral of the story- if you really need the insurance $$- insist on a pre approval. It will take time (if you can get it). Call every day, get the insuring company involved, ask Dr K to write a letter or talk to someone. It took us to the 3rd appeal. If your child is in crisis, and you need to get this done. Admit them, get denied post procedure, and then fight with insurance and maybe set up a payment plan with hospital. The surgery center may not even take you without a pre approval letter or code, though. Insurance stinks!!

karam- A couple things. I would say that you can hope for 100%. BUT, it will take time. My dd is doing really well now- I think almost 100%. But it has taken about 9 mos of healing, along with aggressive treatment to get her there. Whatever treatment methods work (abx, steroids, ivig or pex), I really believe TIME is a huge factor that cannot be eliminated. We were able to get my dd to 90%, but time has helped her improve more. The other thing is keeping them away from exposure and any immune challenges (easier said than done). I also want to know- Dr B said they failed strep titers and they do not have the ability to fight strep. I am thinking you are talking about the strep pneumo titers that your child failed. Does Dr B say that this means your child cannot fight GABS? From what I know, these are different bacteria. Many parents seem to have found their kids fail these titers, I am looking for any info that would tie them into Group A strep- the type that the NIH has linked to pandas. thanks- glad you have seen such great improvement!

A good place to start, would be getting the research test for PANDAS by Dr Cunningham. I think the test costs about $400 (not covered by insurance), but with your son's age, and length of symptoms- I think it would be important. I would also get his strep titers done (although a normal result is meaningless, high titers could give you a clue to a recent or ongoing strep infection). You will need to get a pandas doc on your team- I don't know if there are any in Texas- that is where it gets rough financially. Treatment should start with at least 60 days of full strength antibiotics (either zithromax, or augmentin xr). Depending on the doctors clinical opinion, the reaction to antibiotics, and/or the Cunningham test results, a month long tapering steroid burst may be indicated and could provide real help. Good luck- lean on the parents on this forum, there are several with older kids.

Unfortunately, as with most aspects of pandas- there is no way to plan around the steroid burst. I have two girls, who have done a total of 5 steroid bursts over the last year and a half. EVERY time was different, ranging from maintained improvement until today (from 9 mos ago) to beginning a backslide on the tapering dose. I really don't think anyone is going to be able to give you the answer you are looking for

Sweet cheeks mom- The first and immediate thing you need to do, is GIVE YOURSELF A BREAK. You did not cause pandas- you could not have prevented it. Pushing your child does not cause pandas. I have/had a high achiever (and a not so high achiever), and they both got pandas. I pushed my high achiever because she thrived on it. Performing with a prof ballet company, class representative, homework, piano, etc (she is 10 now). She loved and thrived on the attention and accomplishment. Then she got sick (with pandas) and her whole world changed. My priorities changed, appropriately. New priorites were happiness, eating, sleeping, etc. Homework, school and ballet went out the window. BUT, it is not forever. You need to channel your drive into aggressively treating pandas, and your son will be well again. He will achieve what he did in the past, and more. You will be mellower. My daughter is now doing really well. She is healthy, and starting to embrace life and challenges again. I am slowly and gently pushing her back into the world, and she is thriving. Her sister was actually the first one diagnosed. She was overnight, changed, in crisis (ocd). When I finally learned of pandas- I sat up all night reading this forum. Then I spent every night for a week crying myself to sleep. My dh didn't get it. He also wanted me to move on, and not be so upset. I think many families go through this. But, in the end, he eventually "got" pandas, and we are on the same page. My little one is also doing well now. It was a rough year dealing with both kids getting pandas- but we got through- and will get through in the future. My kids ( and yours) will be okay. You can do this, you will get your baby back, it will take some time. Dr K will help you. Your post really hit me hard- you are an awesome mom- you will adjust your expectations for now. You will be there for your son. You will get through to your dh. Take a breath, line up one or two friends or family for support- lean on them, lean on the forum.

Alex- no embarrassment needed- thank goodness you are not in harms way- your family has enough to deal with right now. I am SO glad to hear you are seeing improvement in your son. I really think time is a huge factor in healing, that we just cannot bypass. As you know, pex was successful for my girls- but only time spent healing has truly brought them to 100%. Caroline was just as you describe your son- pex ended the crisis- but she needed time (and we did some therapy) to bring her to where she is today. Hope you see continued improvement!