kimballot

I am going to echo LLMs statements (minus the kids being in a love fest -mine are 13 and 15 and tolerate each other most of the time). When my son was young some well -intended people suggested I do family counseling, but I did not think that would help (and I did not think I had time for it), because my son's behavior was not CAUSED by family dysfunction - it was leading TO family dysfunction. However, as he got older we did do parent training for ADHD and family counseling, and it really helped to put my husband and myself on the same page and to help my son develop a sense of being accountable for his behavior without blaming him for his challenges - and I do wish we had done it sooner. It sounds like you are doing a great job of explaining it to your daughter. Please keep us posted on how things go!

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Hi - I think I posted something about the out of sync child last week. Ihave a son who is 13 years old, has had PANDAS issues since he was a baby and he has had sensory issues with exacerbations. At first it was baffling to me, as an OT, because I did not understand why his sensory system changed with each sinus infection - but it is a bit clearer to me now. As I sorted through this over the years, I have adopted the "barrel" model of understanding my son's function (often used by allergists). If you think of a big rain barrel that is balancing (kind of like "don't spill the beans game), then any one bean you put in does not disrupt the balance and the you really do not know how full the barrel is. However, if the barrel is full and you add that one last bean... whamo. My son's nervous system is like this. If he is healthy, he is able to take in a variety of sensory input through the day, like being in a room with lots of stimulation or having a kid bang into him on the bus, and be just fine, because it only fills the barrel up a little bit. However, the sympathetic nervous system tends to put a stimulation from different systems together and also tends to store sensory information for a period of time. So, if he wakes up and his allergies are acting up (barrel partially filled), and he has an infection (barrel partially filled), and the seams of his socks are rubbing on his feet (barrel partially filled)... then when something small happens- like a kid bangs into him on the bus - then whamo - rage or OCD or some other meltdown kicks in. Using a sensory "diet" helped us to get through the day when my son had exacerbations when he was younger. The idea is to give calming sensory input to "empty" the barrel. Calming sensory input tends to be firm touch, deep pressure, neutral warmth, and resistive muscle movements. The out of sync child is a great read for younger children, and Diana Henry's work (tools for tots, tools for schools and tools for teens - http://www.ateachabout.com/) also give some good ideas. When my son was young we used a weighted vest (which has been shown to increase attention and reduce extraneous behaviors - http://www.kidsot.com/kidsotweb_files/weightedvests.pdf) to get through dinner and to get him through table-top activities in the classroom. We also did a brushing protocol, on occasion, but I am not a big fan of that in general and really have not seen any research to back this up. Now that he is older, he is much less variable in his response, though he does get wound up. I sometimes recommend warm baths, pull-ups, electric blankets, and removing himself from the stimulation when this happens, and I try to get him to do some gross motor activity each day, though this is difficult in the winter.

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.

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.

Thanks for changing this!

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.

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

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

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!

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?

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?

"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.

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...

Thanks, Vickie! Is there a place that this is "stored" on the forum? I am relatively new and was searching for something like this... How would a new person find this?

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!

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.

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.

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.

You can also ask the doc about prescription antifungals such as nystatin or diflucan, but they may hold off on those unless there are symptoms of problems.

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.

My DS turns 13 in two weeks. You've brought a smile to my face! Happy birthday!

Thanks for posting this. It is very helpful and makes me hopeful.

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!