dcmom

LLM- According to your research, if one has a hetero C677 mutation, but homocysteine levels are normal- do you still consider supplementing with methyl folate (and B12)?

Sorry to admit I skimmed your post- short on time, but I wanted to respond: Dr Latimer is fabulous. I credit her with saving my two children (pandas) childhoods, singlehandedly. I, personally, would stick with her. Get your daughter in with her- sounds very much like pandas, and so many of us have multiple pandas kids. If you are close enough, and it is financially possible, I would book appts for every thirty days for both kids for about 6 months. I found this necessary, until things were under control, and we had a treatment protocol worked out. She will do IVIG or PEX, if needed- but typically works in a methodical fashion- one step at a time. Steroids have been the number one lifesaver for my kids. I am a HUGE believer in steroids, dosed according to the situation, as a pandas treatment. However, since your daughter has been possibly pandas for so long, six days may not be enough. Good luck!

Hi Lisa- I think from your other posts you are considering an intensive ocd program. I cannot say enough about USF- pm me if you want details. My younger daughter at the time was having major meltdowns triggered by ocd and sensory issues. The psych at USF helped us to work on this, along with the ocd. We were there three weeks, which is their typical program, and I wanted to stay forever I think a program like this is necessary, along with aggressive medical interventions. A lot of what the program did for me was to give me my power back as a parent. Regardless of ocd, tantrums are unacceptable and need consequences- I found I had become too accomodating. Both of my kids are flourishing, and have no social issues (now).

Hi EA! My dad is having a high cholesterol issue, and cannot take statins due to very bad side effects from them. He recently found this book "The Eight Week Cholesterol Cure" which works on cholesterol with diet and supplements. This method is based on medical studies, and sorts through all the info. The author is a medical journalist who ended up having a heart attack, and developed this program for himself. While I certainly do not advocate any kind of diet restriction for kids (esp pandas kids with a history of AN), there are some things to add to the diet (oat bran) that helps lower cholesterol. The book may have some useful tidbits for you. Also- I don't know how your family eats, or if you bake much (I bake quite a bit- as I have one pandas kid who eats very little...I am always trying to find something she will eat). I am a vegetarian (aspiring vegan) and LOVE EnerG egg replacer for any baking. Which lowers the cholesterol of the final product substantially. After the research I did (for Dad) on red rice yeast- I would not be comfortable using that as a method of treatment, esp for a child. The levels of statin in the supplement is untested, varied, and actually now not supposed to be present. The latest thinking on cholesterol/ heart disease is that in theory cholesterol is not bad for you- BUT when there is inflammation in the body (specifically the arteries/ vessels) that is what "catches" the cholesterol and causes high cholesterol and heart disease. So working on lowering inflammation helps. Good luck! PS- my kids also had a very low (above normal) myco number that indicated possible past infection (or exposure)- but it does not seem to be causing any pandas issues now (thankfully).

Awesome!! What is the theory behind doing another IVIG if she is 100%? Just asking...

Emily- Technically, strep is not considered a "reinfection", but most likely a chronic infection, if a recurrence happens within a certain amount of time (I think 2 to 4 weeks). This may be the case. What abx are you treating with? You may want to consider a course of clindamycin.

My older daughter had a brief period of low IGM (or IGG- don't have labs in front of me). We took a wait and see approach, and her numbers have gone back to the normal range. I definitely think (esp with pandas kids) lab numbers should be followed for a while prior to any intervention. IMHO pandas can mess up lots of lab numbers. Good luck!

Hi Kiera- We had the same issue. Blood was taken during a pandas flare up, and both of my kids tested allergic to many, many things. Neither has ever had an allergic reaction. We are chalking it up to the possibility of an immune system gone haywire at the time the tests were done.....

I have heard- maybe on here- that laying down is less "painful". We haven't tried it. But to EAmom- I had one daughter get strep while on a treatment dose of zith, plus a treatment dose (2x day) of Augmentin. The other daughter was on treatment dose zith plus rifampin at the same time, and got strep. Neither had their tonsils. This was the point that we kinda gave up on the antibiotics

Hi all- I just wanted to add an additional thought First, let me preface it by saying that I COMPLETELY agree with all of the above info. However, in addition I like to keep in mind that the ultimate goal for our pandas children is to be able to live life and attend school with no accommodations. These goals can be a combination of short and long term goals, depending on each situation- but I do think it is important. I think the accommodations should be approached with the understanding (of both parent and child- not necessarily school) that they are a temporary measure, until medical treatment, therapy, and hard work, make them unnecessary. Unfortunately, sometimes our kids have to work harder But, in reality everyone has their own cross to bear...

Hi Big Mighty- Well first- YAY for your son- that he is doing well!!! IMHO PANDAS needs to be treated based on symptoms alone. If a child is doing well- (IMHO) DO NOTHING! Do not even change your laundry detergent! Stay the course, and enjoy life. If/ when things go south again is the time to treat. IMHO each episode should be treated quickly, and in order of least risky to more risky treatments. This means- within 24 hours of seeing pandas again, start with advil and increased or switched antibiotics, then if needed proceed to steroids, and then if needed proceed to IVIG/ PEX. Unless your son is sick very frequently (CVID) or is in a pandas flare, I would not even consider an IVIG. My older daughter had IGG in the 600's also. Our doc took a wait and see approach, we tested about 4 mos later, and she is now back within the normal range. I think pandas can completely mess up most test results, not to mention that the immune system has gone haywire. I think it is prudent to take a "wait and see" stance, and retest, and retest with most questionable results. I personally would not consider treatment for CVID unless there is chronic or constant illness, there is chronic pandas flare ups, or if the immune numbers remain alarmingly low (not borderline) for a year. I do agree with the doc on one thing, however. I think the best case scenario would be for you to work on slowly weaning your son down to a prophylactic dose of augmentin after a six month remission. Some kids seem to be dependent on antibiotics (then by all means- keep them on) but some do not (mine) and I think it is best to figure out what situation you are in. Best of luck to you- enjoy the good days to the fullest!

smarty- permethrin is toxic. Supposedly on shoes or clothes, once dry, it can be touched, but will be effective for thirty days. In my mind, anything like this should be handled as a toxin. I wouldn't want this to be sprayed anywhere near anything that would be eaten. We spray rock walls, tall grassy and bush areas an perimeter areas, and my husband's boots with permethrin- but nothing that gets near the kids. Yes, I have become very suspicious of everything- and basically use my gut, and common sense to make decisions. If you have to ask- it probably isn't a good idea http://www.healthychild.org/issues/chemical-pop/permethrin/

cobbie- I am sorry you and your son are going through this. Unfortunately it seems pandas families have to suffer so much, and in relative isolation. However, if you are fearful of leaving your son home alone (and we have been in that situation b4- my kids were too young to be left alone at the time, but I know what you mean about the depression...) it is time to really consider this a family crisis. In a family crisis- it is time to call in all your support system and favors. Call the doc, and tell them you are fearing for your child's safety due to the depression. If at all possible, consider the family leave act at work, or at least tell them that your child is in crisis, and you will need to be able to take care of him. Call in grandparents or aunts/ uncles or college age cousins to come spend a week at a time at your house to help you out. If you have a spouse in the picture, tell him he also needs to sound the alarm at work. I think you will find family, work and even strangers will rally around you if you ask for it.

Hi Dean, I am so glad your daughter is doing well! I have two daughters with pandas (initially triggered by strep), diagnosed at initial onset a little over three years ago. Both had plasma pheresis within a few months of diagnosis, which brought them to (or close to) 100%. Since then we have had definite flare ups due to losing baby teeth and/or illness. Most of the flare ups have been MUCH milder than the initial onset, but we also have a protocol to address flare ups immediately, which seems to be helping. One daughter seems to flare up immediately, or even slightly before we see signs of physical illness. In the other we usually see pandas symptoms appear after (up to a few weeks) illness. Both have had one flare up with no corresponding trigger that we knew of. Thankfully, both girls are able to live a fully normal and happy life, they have great friends, excel in school, participate in extra curricular activities and are generally happy. They do struggle with some ocd with flareups, that sometimes takes a little while to leave- but, thankfully, it is mild. It has been a rollercoaster three years, for sure, the first year being by FAR the worst, this last year, the best. Our current protocol (which is always open to tweaking) is that the girls are not on any prophylactic antibiotics. They both get daily probiotics, and one gets vit D plus calcium (for a deficiency). If I see ANY signs of pandas, I usually wait 24 hours to be sure, and then start them on a z pack along with 5 days of 3x/day advil. MANY times this takes care of the flare up immediately. If this does not work, or they do not maintain improvement, we consider a burst of oral steroids. I have been using the dosage of 40 mg/day for 3 days, then 20 mg/day for 2 days. This seems to take care of things. Both have done steroids 3x (in that dosage) this school year. Usually, the summer is good for us. I hope this helps! I have found, for us, the KEY is an immediate and aggressive response to any pandas flare up. Once "the train has left the station" I think it is a little harder...... I hope for the best for your daughter!

Hey Kim- Sorry things are not going well. I will just give you my 2cents FWIW- I have two pandas girls. For us the KEY to getting them well, and keeping them there has been immune modulation, and not antibiotics. We use antibiotics briefly for illness or flare up to clear infection- but what clears the pandas is something that halts the autoimmunity. We have used pex, but most frequently use steroids. Have you tried steroids? It could be the infection is gone, but the autoimminity continues. My kids end up needing about 2 to 3 steroid bursts per year. This keeps them at 95%, 95% of the time.

Thanks, Chemar!

ataloss- I would change pediatricians. To be honest, this is over most of their heads. Starting with a new pediatrician puts you on a stronger footing. We moved after pandas diagnosis and treatment had begun. I just brought some paperwork that stated diagnosis, told the pediatrician that my kids have pandas, and that it is handled by our neurologist, who I told them we see regularly. I do not consult the ped on anything regarding pandas. We go to them for sick visits and yearly physicals (skipped last years!). They admittedly do not know much about pandas, have been mildly interested, and supportive. Good luck!

I am with you EAmom. My dd was due for meningococcal and TDap to enter school this year. Last year was tough, with 2 pandas episodes and some "stuck" ocd. She was finally in a great place in the summer. There was NO way I was even considering vaxing her. I went the route that I thought correct and obtained a letter from our neuro which just stated no vaccinations this year (not forever). Well our school nurse would not accept it. NJ only accepts medical exemptions for very specific diagnosis, and the doctor needs to write the diagnosis and the reason for non vaxing in the note- I looked on the website and even patients with aids and chemo are not exempt! Unbelievable. I ended up having to lie (I do NOT like being put in that position- very unfair) and taking the religious exemption, because as of now NJ does not question it (there are groups that want to rid the state of this exemption). I am an agnostic- so it doesn't really apply I do plan to test for tetanus titers this fall. I was wavering recently on vaccinations, just had some private conversations with someone from Lats on this. I think my position is strengthening back to NO vaccinations.

missmom- I think if you could connect with some parents of autistic kids in your state, they may have navigated the system and have advice for you. I would look for parent groups for kids on the spectrum, or look on Jenny McCarthy's website and contact an "angel" in your area. My kids are not autistic- but I was fortunate enough to connect with a mom of a son with autism and pandas (ugh!) who had been through this. She encouraged me to write the letter for religious exemption, and talked me through the wording a bit. Autism is not (in my state) acceptable as an exemption- so I am thinking it may be the same in your state. Is there no religious exemption?

Missmom- I would suggest connecting with some moms of children with autism in your state, hopefully they can give you some guidance. My state (NJ) is tough on exemptions. The medical exemption is very difficult to get, because it is only allowed for very specific diagnosis, a letter from our neurologist was not good enough. Thankfully, we have a religious exemption- which I took. Good luck- as if it is not hard enough to have a sick child, have to fight with insurance, travel and pay $$$ for doctors- now you need to worry about your state forcing vaccinations that even your doc says is contraindicated!

nmama- I had two daughters have PEX for pandas. It was initially denied, but approved on the third appeal thanks to doctor and HR intervention. United healthcare administers the policy for my dh's company. Dh's company ultimately pays for all, UHC just administers. BTW- the cost of PEX wast $26k, since the hospital was in network the insurance co paid about $5k!

I see what you are saying. I will watch this thread and think about getting the zinc- luckily it is cheap. I am pretty sure her copper is normal (it has been tested)- but I am going to re look at our bloodwork today to be sure. I find myself saying EAT YOUR PIZZA!- and then I say to myself "what am I doing?" During healthy times- it is more of an inconvenience for me- but, during pandas flares- it does become a big problem, she doesn't eat nearly enough calories, and her diet becomes very limited

LLM- thanks for the info. I saw Jarrow has a supplement that is 15mg zinc plus 1 mg copper- that looks like perfect dosing for kids (to start). I was about to buy these, but stopped myself, and am thinking out loud. I (like everyone else) have a cabinet full of unused supplements. We currently do none, as I haven't felt that any really did anything. So I am just wondering- If a child has certain "issues" that are triggered by pandas, and if when the child is "healthy" these issues are not there- would these supplements work? My little one is picky always. But, when healthy she eats: tons of veggies, salad with dressing, yogurt, kefir, fruit, whole grain pastas, cheeses. She, thankfully, likes a lot of healthy food, and a lot of what she won't eat: pizza, meat, etc- is not actually that healthy. The problem is when pandas strikes, almost exclusively after illness, she will, for example, stop liking yogurt and pasta. This ends up leaving a huge hole in her diet, and sometimes more things go. With treatment (like steroids) this resolves, and she goes back to her baseline of eating, sometimes however a couple months have passed with this very limited eating. Anyway- I think I will hold myself back from adding another $9 supplement from the cabinet (just ordered her a good multi, which I haven't started yet- so cannot make changes right now anyway) and watch this thread. So- parents- please report back with your results

Let me know what type of zinc (brand, etc) you are contemplating....

HHhhmm. I am really interested. I have one VERY picky eater, who becomes MUCH pickier when pandas flares. It is actually usually her first symptom that pops up. She is not/has never been anorexic (although she is VERY skinny, and does not see herself that way!), however there are few foods she really likes/eats well, and then when pandas strikes she starts eliminating them because all of a sudden she HATES foods that she typically eats daily!! It becomes very problematic, because she will be hungry but nothing is appealing. I have strategies, but it is still a problem. Has anyone used zinc for this??