Jump to content
ACN Latitudes Forums

kimballot

Members
  • Posts

    1,737
  • Joined

  • Last visited

  • Days Won

    10

Posts posted by kimballot

  1. Thanks for your responses. We used Motrin Tue & Wed because of the headaches, but didn't today even though she apparently had a headache this morning when she arrived at school. I'll start the day tomorrow with some Motrin to ward off the headache. Is there additional benefit from the Motrin? I've read a little about inflamation being an issue with PANDAS, but am not sure what the connection is.

     

    I will stick with the Biaxin for now. I know that time is often the best medicine... As I'm sure you can all relate...waiting just to know "IF" something is going to work is torture!

     

    One last question. We give her Culturelle probiotic, but have been giving her this at the same time as her antibiotic. I read on another posting that it should be given 2-3 hours after the antibotic. Is this true? If so, do you know why?

     

    Ibuprofen does have some anti inflammatory properties and some people have found them beneficial with PANDAS flair ups in general and also to take the edge off biaxin reactions. I juste learned about this recently from reading posts, but have been using ibuprofen 2x a day with my DS since he had a cold last week and I must say that I have not gotten any bad reports from school (which I would usually get)... so I am thinking it is helping.

  2. Sounds like you've been seeing progress overall but how sad that you had a disappointing outcome to what should have been a positive event. That does happen and it has seemed to happen a bit more with my DS when he was on biaxin (this was before we knew for sure he had PANDAS - whenever he was on Biaxin for sinusitis we we would see some unusual behaviors - doctors could never tell me why). The setbacks were always temporary for us and the overall improvement from Biaxin was worth the sawtooth.

     

    I like the way you handled it by telling her she could do it again when she is ready. Sounds like you are very supportive. Are you using ibuprofen as well? It may help to take the edge off.

  3. HI - I've not read the book, but you've just convinced me to put it on my list! I always do the "aftertalk" with my son. Now that it is all over, when we are calm and not stressed say -"I'd like to talk about what happened this morning so we can figure out what the problem was and how to avoid it next time." I ask him for ideas of why it happened, then try to fit it into my perspective and restate it objectively - something like "Ok, so the shirt was higher than you liked and you felt like you were choking" (for example). How can we avoid this in the future (ex:get dressed earlier so we know if something isn't going to feel right that day), and what can we do to "turn it around" when it starts. I also apologize for losing my patience which happens often when we are rushed.

     

    Is your daughter having sensory issues around clothing? If so, try talking to an OT at her school (if it is a public school) or reading "the out of sync child" - it describes sensory defensiveness nicely and gives some nice ideas, though it is written for younger children. The ideas still apply. Lots of kids learn to "turn it around" by doing something to give tactile deep pressure or joint compression.

  4. I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit.

     

    Glad to hear things are picking up for Noelle. I was wondering if there is a post somewhere with a suggested chart - or where I might find Buster's chart. I am also wondering if any of your kids have allergy triggers. Mine does and I know I we have bad days in the spring when the pollens first start and in the fall with the molds. Also have bad days after certain foods. I am wondering if anyone is charting these and seeing these as triggers. - Thanks

  5. I would like to expand further on the "new" model. I think it would be great to take a formal survey approach - allowed any patients with verfied diagnoses to "opt in" to email mailing lists, and then each time a new question arises (by the scientific managers) or new data is created (by the patients), a survey expert formulats appropriate questions and patients can follow a link to enter their information into a well-designed survey/data collection instrument. Someone expert in data analysis then mines the data at appropriate intervals to look for patterns and generate/test hypotheses and shares this information -- of course with lots of caveats about biases, not "scientifically collected", etc., with interested parties. They can then make what they wish out of it or use it as supportive information to get pilot funding for confirmatory research.

     

    There are sources of bias and it's not perfect (and not interventional), but I think it would be an observational model from which we could learn a TON particularly about orphan diseases with highly motivated patients. Like having everyone's stories organized as data to be able to search patterns, etc.

     

    I have actually already approached a well known clinical research survey company about setting this up as a model for orphan diseases, and have very strong interest. I think I also have funding through personal connections (royal family - not kidding), at least for a pilot, maybe more. But need to choose the pilot disease, finalize the initial data collection instrument with help of experts (have a general one drafted already), organize the medical and patient community around it, and figure out the ethics parts re. consultation with an IRB (e.g. code assignment for surveys to ensure anonymity). I actually think this could be such a promising approach to learning and sharing information about orphan diseases (and maybe ultimately other diseases) that I'm thinking about cutting back my consulting hours to pursue it more freely.

     

    We should really talk.

     

    I am with you - mom to 2 pandas. Keep us posted...

  6. As for PANDAS vs PITAND, I think right now they are being used almost interchangeably. I would think PANDAS is a subgroup of PITANDS, but PANDAS got more known now due to Swedo concentrating on that. Again, I can look up the history Buster posted in the pinned thread. There is the whole debate if the whole thing should just get renamed to PAND, but who knows what will happen.

     

    Thanks - That is helpful. I like the PAND idea, but it does not convey the unevenness of the symptoms based on infection status. We'll see what evolves!

  7. I think it's a complex neuroimmune response. I just mention CaMK2 only because there seems to be the most known about this. Obviously Dr. Cunningham would like to try to try to correlate the 4 antibodies she measures to clinical phenotype. All 4 (and I'll bet quite a few more) are important, but we're just having difficulty making sense of the anti-CaMk2 info. I think this will end up being like the chicken soup of autoantibodies that rheumatologists that treat patients with lupus-like illnesses think about all the time.

     

    Dr. T

     

    It makes sense that we would begin with something that is not infection specific. If we can just show an autoimmune response that was significantly different from the general population or from kids with non-inflammatory tourette/ OCD/ADH (did I just create that term?) then we could show that PANDAS/ PITAND is a distinct "syndrome". Once that is done, we may be able to get insurance coverage for the test - and then future research would be funded.

     

    I am wondering if - currently - there is good normative information for the CaMK2. Do we have large enough normative samples to know what typical - "non inflammatory" reactions look like?

  8. I don't think it was ever said that her findings were unique to strep. I believe what she has studied over the last years focused on strep. Am I right with this? Also, because this is PANDAS forum and for a long time dealt with strep was the main trigger perhaps some inferred it was strep only? But I don't think that was actually ever said.

     

    Perhaps she has not focused on strep, but the acronym PANDAS really focuse on strep, and that is what most people hear. I think this is making it difficult for general docs to think of the PANDAS/PITAND coninuum. Why do we not include PITAND when we talk about PANDAS?

  9. "Actually, I meant in the GENERAL POPULATION, i.e. someone you meet randomly at the mall or something, those are the numbers. That person would have a 20% chance of having a positive strep titer, 10-40% chance of having a positive mycoplasma titer and a 10-20% chance of having positive p41 IgG and IgM on Lyme Western blot. Assuming these to be independent factors (and they may not be) the chance of having all three would be about ) 0.2 x 0.2 x 0.1 or 4-8%. I think at least 50% of PANDAS patients have >2 of these positive and 20% all 3, much higher than the general population. So the key to PANDAS in many cases is co-infection ....

     

    Dr. T"

     

    Ah... thanks for the clarification. So you do think it is much higher in PANDAS.... are you basing this on the kids you have seen or on discussions with other docs, or on research?

    Also, you do note that these may be independent factors but may also be interacting factors.There is also the interacting piece of the child's body. I mean, (as fixit noted) some kids can have all of the positive titers and be just fine... so what makes the PANDAS kids different? I know we are probably decades away from understanding the genetics behind this, but it seem like that is a crucial part of the equation.

  10. Dr. T -

     

    First off - thank you for all you do for our kids!

     

    Second - I am trying to understand this better. You are seeing

     

    1. Peristently elevated ASO, ADB or streptozyme (about 20% chance)

     

    2. Persistently elevated Mycoplasma IgG (about 40% chance)

     

    3. Persistent anti-flagellin (p41 IgG and IgM) - probably no more than 20% chance

     

    The chance of having all three together - probably no more than 5%

     

    I am wondering what percent of PANDAS patients have two of the above or none of the above...

     

    I know the ideal study is a prospective study with large numbers, but is it possible to do a retrospective study with your patients and everyone else's patients? Perhaps that could be the basis of a prospective study. Could we (or do we) have a national PANDAS database, where we can enter this information on kids that we think have PANDAS and then crunch numbers to make some sense of it all? You sent the excel file, which is a great start. I know I would gladly sign a consent form to share my son's info (especially if it is anonymous info) with a database if it would further the research...

     

    just wondering...

  11. I think what you recieve at an IEP mtg is different in each state. I live in Ohio. My son has an IEP for speech. I don't recall getting a 'Procedural Safeguards Notice" but we get a booklet entitled something like "Who's I.D.E.A." or something similar. It's their "bible" that they hand out at every mtg.

     

    Legally - you should receive procedural safeguards with each IEP. It is pretty thick packet of info, or perhaps the procedural safeguards are in the IDEA bible. I would be interested in knowing if you do not receive them.

  12. HI - just set a PM so you will get a larger history on my son.

    It's not that the school system is doing nothing for our son, they are, some more than others, others more than nothing and some just nothing. Its just become WornOutMoms second job of steering the boat continuously, there is no one at the school that has stepped up to lead the way utilizing his IEP.

     

    Yes - I know what you mean about some doing more than others and some doing nothing... and some actually make matters worse at times. I know the problem for me is my son's inconsistency. I know it is difficult for teachers to understand that when he is doing really well and then all of a sudden is annoying, inattentive, and irritable, it is NOT because he is choosing to act that way. There is an underlying medical condition.

     

    I do have a school psychologist and social worker who are very supportive. I have a meeting with them and the entire team next week to develop a "plan B" for when my son is sick and for the weeks after. I am planning to use the new fact OCD / PANDAS sheet that I heard about on this forum (the link is http://www.ocfoundation.org/uploadedFiles/...ct%20Sheet.pdf) at the meeting, so that I don't sound like an overprotective mother who is making excuses for her son. I liked it for my son because it talks about subsequent PANDAS symptoms being triggered by something other than strep, and it also mentioned attention problems and handwriting and math problems -all of which are seen with my son.

     

    I will let you know how the meeting goes. Keep me posted on your son!

  13. You and I actually have much in common. I am battling many of the same issues with my 7th grade son - and he is sick now and just went back to school today - complete with homework meltdowns and all tonight. His IEP is good, but only as good as the teachers that follow it. I know what you mean about make ups not being the answer. I tried to send you a message but your inbox is full. If you can make room - I'll send the draft.

  14. Does your son have a 504 plan at school for accommodations? Something like a plan to pick up work when he is out... guaranteed permission to take tests later or to bring him in after school to take tests he missed during the day, extra tutoring during study hall for work he missed. If he knows that being out sick will not affect his grade, it may help to reduce the anxiety a bit.

  15. Our little guy is only 2 1/2, so we've struggled a bit with dicipline as it relates particulalry to his OCD related meltdowns. Tonight, at dinner, he was in a super good mood, laughing and smiling, not freaking about anything (and mealtimes are usually sensitive for us). However, he must have been freebasing pixie sticks at day care or something because he was bouncing off the walls!!! We couldn't get him to sit still and eat for anything. Normally, we'd send him off to time out until he was ready to come join us - even if he didn't eat, he's still required to sit at the dinner table during dinner time. However, it's been so long since we've seen the fun guy, neither of us really wanted to ruin his good time.

     

    Are we getting soft? What do you all do in situations like that. We don't want to spoil him because of the PANDAS, but at the same time, we're so afraid to rock the boat!

     

    How do you see OCD in toddlers? When my ds (now 12) was 2 he was a chronic biter. I was covered in welts and he targeted specific kids at day care - oddly they were the kids he later chose as friends. When he was 3 1/2 and I could ask him why he bit (as it was still an active behavior) he told me that if he did not bit he "could not breathe". If that is not a preschooler version of a compulsion I don't know what is!

     

    We got through dinner using a weighted vest from an occupational therapist. It uses deep tactile pressure to calm the nervous system down, and worked for about 20 minutes at a time... just enough time for me to get a few bites in my self and take a couple of deep breaths.

     

    Regarding your dinner experience... let me get this straight - you had a pleasant, fun dinner with your child who was in a very good (and wound up) mood, but could not sit still... and you are wondering if you should have been punishing him? I say enjoy the moment. As the mom of a child with challenges, sometimes you just have to give it up and enjoy yourself! Don't be afraid to rock the boat if you have to, but don't rock it just for the sake of rocking it. If you and hour dh wanted a calm, quiet dinner, it would be different. Tomorrow night (when he has not had pixie stix) you can remind him of the required dinner behavior and put him in time out if he misbehaves.

  16. An exacerbation would be a sudden worsening in intensity and/or frequency of tics and/or OCD behaviors...or any of the other PANDAS symptoms (ie..urinary frequency, separation anxiety, rages, etc.) for a period of time. Has your son had those behaviors/tics steadily for 7 years, w/o any worse/better periods?

     

     

    Yes... and it is important to go back and look to see if there was a pattern to those worse / better periods over those 7 years. Was it seasonal? (it could be allergy related) Did the tics worsen after a cold or flu or after someone else in the family had strep? You may be able to look at dates of doctor visits for colds and such (get these from the doctor) and also look at old school papers to judge handwriting or look at test scores and see if there is a relationship. You may also have old emails from teachers about behavior or school problems that you could use to see if there is a correlation.

  17. Do you know what the long term effects are of having a child on prophylactic antibiotics for that length of time? Believe me people ask me and I really do not know the answer but, it can not be as bad as what we have all dealt w/ with the PANDAS.

     

     

    My son was on abx basically for 7 years. At the time we did not know about PANDAS, but knew that every time we took him off abx his sinus infections raged and his behavior became unmanageable. Some of the long term negative effects were an increase in yeast & fungus in his GI system and in his sinuses. Basically, the yeast and the "good" bacteria need to be in balance and when abx kill the bacteria, the yeast/ fungus is given free reign. Once we figured this out we had his tonsils out - which turned out to be the main source of the bacterioa. This decreased the need for abx, and then we spent a good bit of time with probiotics, antifungals, and dietary restrictions. Now, whenever he needs to go on abx we do acidophilus for the entire treatment time (and usually a couple of weeks after abx end), along with an antifungal mid-way through the abx treatment. So far, seems to work. My lesson: Abx are serous drugs and no one should go on abx without good reason. PANDAS is good reason. Best of luck to you!

  18. Dr. Stewart is on the science advisory board of the OC Foundation. She is not associated with PANDAS Foundation nor did PF have anything to do with the OC Foundation PANDAS fact sheet.

     

    Dr Stewart consulted with some parents of PANDAS kids (including some who are latitudes members), who provided her with research studies and information. It went thru 8-9 editing versions. The parents who worked with Dr Stewart were disappointed some things didn't make it into the final version, but they fought hard to make it better than the NIMH page and at least got antibiotics and a discussion of titers on there. Anyone who's ever written a "group" paper knows how hard it can be to get everyone to agree on what goes in and what doesn't, especially on something "controversial". I'm happy about what did get in - it says after the initial episode, other non-strep infections can be a trigger and that in some cases prophylactic antibiotics may be needed - something NIMH won't say even with Swedo as a director. Plus it says be careful about SSRIs. For a psychiatrist using OCF as an "authority" - this is a good thing. Most probably have no clue that PANDAS kids can react differently on SSRIs.

     

    Do I wish it said more - absolutely. But I don't think OCF is looking to be the authority on PANDAS. They're trying to educate parents who've gone to their site thinking their kid suddenly has OCD so that the parents at least hear the word PANDAS and get some idea of what to research. In their defense, for all it doesn't say about PANDAS, it says a whole lot more than the PANDAS Foundation site does.

     

    I agree - This paper is a step in the right direction. Just being able to bring this in to school to give to the teachers each year will be a great benefit. In general, Fact sheets contain some bare-bones information to help the lay person to understand a condition. True - more could be added- but that is why the author is identified.. so that constructive suggestions could be made for future updates.

×
×
  • Create New...