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My DS is 10 and just entered 5th grade. He was diagnosed with TS and Pandas about 1 1/2 years ago. He has been on Antibiotics (Augmentin) off and on during this time, as well as 2 trials with Tenex and 1 trial with Clonazapem. He has also had 2 steroid treatments. He sees Dr. B in CT.

 

He does not like taking pills, I literally have to force him and give him a treat afterwards, so it has been hard with the huge ABX pills. I also want him to take Motrin - but he refuses. Again, the taste bothers him. I am sure this is part of his OCD. His OCD, anger and tics come and go in waves. I never know when to expect them. He recently had contact with someone who had strep, but immediately went back on the ABX. I am trying to get him a different pill that might be easier to take, but we need to see the Dr. first.

 

He goes to therapy 2 times a month for CBT and also sees the social worker at school. He currently has a 504 plan that I am going to have adjusted slightly this year.

 

Anyway, here are my questions...

 

He is a super fussy eater, and I know there are certain foods he should not eat and foods that might be better for him. He does eat fruits and veggies, but other than that - he is a big chicken nugget and hot dog eater. Any suggestions as to where I can find some dietary information?

 

Is there something other than Motrin that might help - or does it come in a different type of pill than the orange one?

 

Is there an antibiotic out there where the pill is smaller?

 

Any thought on how to help control his OCD and anxiety - either with meds or therapy? His OCD is not that he is afraid of things - he just likes to have things "perfect". I am thinking about finding a Child Psychiatrist that can prescribe medications.

 

We have not thought about IVIG as I am not sure that is the route I want to take.

 

Thanks so much, in advance, for any advice you could give me.

 

I have researched and researched and I am utterly confused right now.

 

Rachel

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HI Rachel-

 

I am so sorry you are going through this. I have two kids with pandas, age 8 and 11, and have dealt with lots of similar issues.

My girls present with ocd, the youngest has lots of food issues (esp while in exacerbation), and "just right" issues.

 

A few thoughts:

 

We have found when they are ill, the ocd and behavior issues are very intense. When we are able to stop the autoimmune process, we seem to be left with some residual stuff to deal with.

We have found success with steroids, IV steroids, and PEX. We have not seen too much success (unlike others here) with motrin.

 

This summer, we went to USF for intense OCD therapy. Besides the PEX and steroids, this is the best thing we have done for the kids to date. We have seen some therapists here, but none who fully understood. The doc there helped the kids, but in a way also gave us our power back as parents. What happened to us, is that when pandas/ocd hit like a freight train- we started accomodating lots of things. My kids have each had two major exacerbation, and with each, we lowered the bar a bit on our expectations as parents (ie. compliance, chores around house, age level expectations, eating, etc). What we found through therapy, is that we do have to be tougher and hold the line. (Now- in major episode, still not confident this will work as well- will probably have to accomodate a bit, but with more understanding that this is temporary, and constant work on moving back to higher expectations).

 

Hopefully you could do this locally, but I can tell you, the doc we saw at USF cut through a lot of the BS that was keeping us from getting the kids better. Most likely, your son needs to do exposures for his "just right" ocd. Also, sounds like there might be a compliance issue, as far as the meds (and maybe the food) goes.

 

My suggestion would be to try to step back and think about what expectations you would like to have for a 10 yr old. (take his meds, eat healthy foods with the rest of the family, not have temper tantrums, put difficulties in perspective, etc). You should be frank with him- we have let things go since you are sick, but we need to start moving to age appropriate expectations. This process can be done with a combination of ERP exposures, a reward program, and a time out program for non compliance.

 

Thankfully, we have made meds (from the beginning) non negotiable and it worked. But, our therapist would have said something like: what 10 yr old gets to decide if he takes his meds? If your child had cancer, would he decide if he would do chemo? NO. He used the same analogy for ocd exposures with my daughter. Basically, she needed to accept that she has an illness: ocd, thankfully there is a treatment that is proven to work: ERP, and she has no choice, she must participate. Same would go for food: since when does a 10 yr old decide what he is eating for dinner? I didn't do that as a kid, did you?

 

I know this sounds harsh, and it kind of is- but it is the reality. As parents of ocd/pandas kids, we want to help them and ease their suffering, but in the end we (dh and I) were preventing their full recovery by accomodating too much.

 

We have been on a program since we got home, a bit less than a month, of ocd exposures, allowance for chores, chip reward program, and time out for compliance. Really, it is sort of common sense parenting, like we used when they were younger (2 to 4), didn't need after that, then when ocd hit, we let lots of stuff slide, now we are working on getting back to "age appropriate" behavior and responsibility. We have been at it less than a month (they are healthy- pandas wise now) and we are in a great place. I know this will be hard/impossible if/when they have another episode- but I think we will be more concious of any accomodation we make then, and give it contingent on working on that issue. We'll see- its a work in progress.

 

Good luck!

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my ds is quite a bit younger - 7- so this may not be for you, but my 9 year old seems to enjoy it also. we recently moved and somehow, ds7 developed an aversion to the CALM he has had daily for over a year now that's it's served in the new house. he drinks it with only a little water, so it is rather strong. the magnesium keeps things 'flowing' which seems to help us all flow much better, so he NEEDS it!

somehow, he decided it tasted, 'teeeeerrrrrriiiiilbe'.

 

this is new, so we'll see how long the novelty lasts. i started the worst face contest. he's now eagerly drinking it (a shot glass less than an ounce) to be able to try to top his worst face he's made previously. could be many versions of this -- can you go outside and scream louder than yesterday how terrible this is?

 

i do agree with dcmom in theory. in practice, we've seen ourselves draw lines in the sand and then been stuck when he crosses or doesn't cross (sorry -- i'm confusing my idioms) and we're caught with our pants down b/c there's no logical way to fight the intense anxiety and avoidance and we'd all suffer terribly. we've had to be crafty with what is acceptable, non-acceptable and non-negotiable. ds's main mechanism is avoidance and sometimes it's too strong to cross so we have to have contigency plans that yes -- maybe this end result is non-negoiable, but we'll work together to develop plans that help us reach it.

 

i'll try to explain a little -- ds has school issues. this yr, went fine the first day, then tantrum the next two.(more complicated than that but. . .). if we had just stood with non-negotiable, 'you have to go to school', he'd likely now be being reviewed for 'emotional distrubed status' for special placement b/c he couldn't cross the threshold of the school and they wouldn't know what to do with him. i believe the avoidance and anxiety would not have been conquered. 'flooding' just doesn't work with him -- there's only so long school personnel can spend with him yelling and screaming.

 

we have been working a plan that i walk with him and stay smaller times each day. today, i left after morning announcements. hopefully, end of week, will be just walking to classroom. so -- the non-negoitable is 'you will be in this school buidling for the school day'; the negotiable is 'i can walk with you and stay some time.' if necessary, he knows it could be all day in the end of a blank hallway -- but, he will be in the school building. yes, this is intensive for me too -- the main reason i have not gone back to work in 2 yrs; but, if the non-negotiable was going to school without a fight or by himself, i'm 100% sure he'd now be being referred for a special placement. the kicker being that he's actually healthier than he's been in 3 years and doing quite well in general with stress of moving and beginning school pulling out issues to intensity.

 

we've started with a psych that i'm trying hard not to be too excited that we've found a needle in a haystack, but with plans to help transfer that responsibility to ds to manage his anxiety but at this point, he cannot. so the end goal is he can respond with a strict non-negotiable but now it just would have us all stuck.

 

topaz -- are you working CBT plans or ERP plans? perhaps ERP may be more beneficial -- ????

Edited by smartyjones
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smarty-

 

I completely agree with you. I guess I should have clarified that (specifically when in exacerbation) the non negotiable has to relate somehow to what they are capable of at that time. So- I do agree that sometimes it is too hard to do the specific thing (go to school), but, there needs to be (like it sounds like you are doing) a very specific plan in place, to work back to what would be age appropriate. So the strict non negotiable is- you will spend x amount of time in school, behaving as a child your age should, and we are going to work back to a full day. There can/should be rewards/ consequences.

 

For things like medicine though, I personally think it HAS to be non negotiable.

 

Smarty- as a side note, I think I discussed this before- do you know what your son's aversion to school is? My dd had intense school avoidance last year. I learned all of the above the hard way, by being too compassionate, coddling too much. We worked at increasing her day in increments. It was brutally slow, and she continued to hate and be anxious about school. This summer we focused on the obsession that caused the school avoidance- fear of vomiting- through repeated exposures. (saying the word, looking at photo and video of people vomiting, writing scenarios of vomiting in school, taking a photo with fake vomit on shirt, etc). This was hard, but our psych was non negotiable, and she has responded really well- back at school, and not anxious while there.

 

Unfortunately, which is NOT in my nature, I am learning a mom of ocd kids has to be a little mean, tough, for their child's own good. I am working on that.

 

We are working on: for them- acceptance that they have an illness, learning how to care for that illness, what steps they need to take, and putting lots of the responsibility on their shoulders. It is my job to prepare them for a future (with possible ocd).

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Thanks so much for all the great advice.

 

DC - we did a reward system over the summer and it did help a bit. I hear you completely about giving in to make things easier. Unfortunately, I am totally guilty of doing this over and over again. I am such a peace maker and I want things to be calm, that I give in a lot. I need to stop doing this because I am sure it is not helping. As much as set guidelines, I am not good at sticking to them. My next plan is to make a chart that includes daily goals, including taking medicine. If he can fill in all the boxes - he will earn something at the end of the week. This is sort of what we did over the summer. I know that he is getting old enough to figure out how to manipulate me if he needs to. But, sometimes I do feel like I am walking on eggshells and when I get angry at him, he can't handle it. Unfortunately, my husband and I are not always on the same page, so this makes things more difficult.

 

Yale has a program for OCD, but it does not take our insurance and costs quite a bit of money. I am looking into some more therapy to see if I can find someone to help with ERP, since his current therapist is only doing CBT with him, and does not specialize in the ERP.

 

We have tried liquid antibiotics and he hates that more - will have to find out about the chewables. Not sure what will be best for him at this point. What is PEX? I am not sure I know. I may try the steroids again, since that did seem to help before.

 

Smarty - that is a good idea to kind of meet halfway - I try to do that sometimes as well. He will go to school, but complains a lot about it. His biggest thing is that he just wants to stay home and play all day. His mind is always going and he is distracted at school. I am wondering if there is a little ADD there.

 

Has anyone tried medications that work well for these symptoms?

 

Thanks again

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Topaz- PEX is plasma pheresis, a medical procedure that cleans the blood of antibodies. It resulted in a complete remission for over a year for both of my girls. Only two docs in the country do it regularly for pandas, but it is done regularly for other things at most hospitals.

 

Don't beat yourself up- I am SO guilty of just wanting to make it all better for my kids- and sometimes, that is needed. However, sometimes, it does make things worse. I think I was jolted awake by a tough psych, and the results he got, this summer.

 

We are on a tight-ish budget these days. We went to University of S Florida, in St petersburg for intense ocd therapy. It was one hour per day, for three weeks. My insurance covered it. We stayed for free (most meals included) at the Ronald McDonald house. It was SO much cheaper and more effective than once a week therapy in NJ, out of pocket. Something to consider anyway. I cannot say enough about our total experience. It was near the beach and two hours from Orlando, so we were able to have a little fun at the same time.

 

Hang in there!

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Smarty- as a side note, I think I discussed this before- do you know what your son's aversion to school is? My dd had intense school avoidance last year. I learned all of the above the hard way, by being too compassionate, coddling too much. We worked at increasing her day in increments. It was brutally slow, and she continued to hate and be anxious about school. This summer we focused on the obsession that caused the school avoidance- fear of vomiting- through repeated exposures. (saying the word, looking at photo and video of people vomiting, writing scenarios of vomiting in school, taking a photo with fake vomit on shirt, etc). This was hard, but our psych was non negotiable, and she has responded really well- back at school, and not anxious while there.

 

so interesting that the intensive FL is less expensive than on-going treatment in your state!! do you continue contact with FL?

 

no, we don't fully know where the issue lies. we have hopefully found a good psych to be able to help us. your thoughts are helpful and i certainly appreciate them. was your dd afraid she'd vomit at school and you couldn't help her? how did you uncover that as the issue?

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He is a super fussy eater, and I know there are certain foods he should not eat and foods that might be better for him. He does eat fruits and veggies, but other than that - he is a big chicken nugget and hot dog eater. Any suggestions as to where I can find some dietary information?

 

Unless you're able to acquire and get him to eat organic versions of these "kid staples," chances are he's getting some nitrates, MSG and other pro-inflammatory components in the mass-produced versions. Maybe you can slowly introduce some other options and reward him for just trying them, one bite at a time. That has worked for us in the past; "You don't have to eat the whole thing. Just one bite, and if you don't like it, you're done." It's this method that's introduced him to some things he's surprisingly turned out to love, like asparagus and sushi!

 

Is there something other than Motrin that might help - or does it come in a different type of pill than the orange one?

 

CVS has a dye-free ibuprofen; I know you can get it in the stores, but you might be able to order it online, too.

 

Any thought on how to help control his OCD and anxiety - either with meds or therapy? His OCD is not that he is afraid of things - he just likes to have things "perfect". I am thinking about finding a Child Psychiatrist that can prescribe medications.

 

Cognitive behavior therapy (CBT), inclusive of some Exposure Response Prevention (ERP) therapy (which is a type of CBT) works best for OCD and can help even with these "just right" kinds of compulsions and obsessions. My DS has the same kind of concerns, and therapy has helped him tremendously. If you're not sure where to turn for a good therapist who knows OCD and ERP well, try the "Find Help" button on the IOCDF (International Obsessive Compulsive Disorder Foundation) web site. You can search by location, patient age, and even the type of OCD behaviors (like "just right") that you most need to address. You might also consider picking up some books by Dr. Aureen Wagner; she's written some for parents and for kids, and she knows this "just right" variety of OCD very well.

 

As for medications, these might help your son be more responsive to therapy and/or function in his everyday life better while in exacerbation, especially. It's important to know, however, that most every approved medication for OCD (mostly SSRI's) take anywhere from 2 to 6 weeks to build up to full efficacy, so they are not a "quick fix," even if they're right for your child. I would start with a therapist first. Even if they're a psychologist and not a psychiatrist who can prescribe, they should have adequate experience to assess whether or not your child is one that could benefit from the addition of medication. Sometimes, if the child is healthy enough to be receptive to therapy alone, and you're on the right path with your PANDAS child in terms of medical interventions, psych meds are not necessary.

 

Good luck!

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His biggest thing is that he just wants to stay home and play all day. His mind is always going and he is distracted at school. I am wondering if there is a little ADD there.

 

Has anyone tried medications that work well for these symptoms?

 

Thanks again

 

OCD is hard, and fighting it is hard work. So our kids would, of course, prefer to stay home in an environment in which they feel they have more control, less stress, less expectation, fewer rules and fewer strangers. Plus, let's face it, they know we know what they're about and what their triggers are, and we tend to help them "get around" those things just to keep some semblance of peace in the house. But their peers and the teachers? Even if they "know" about the PANDAS/OCD, they're less likely to know how to react when it appears before them, like we do over time.

 

As for the ADD-type behaviors, those are most likely part of the PANDAS, in our experience. When the PANDAS and our DS's primary behavior set (OCD) are in remission, the ADD/ADHD is virtually nonexistent. Plus, most texts on childhood/adolescent OCD will illustrate how many OCD-related behaviors are frequently misinterpreted as ADD because the kid looks distracted when he is, in fact, attentive -- just to the wrong thing(s). He'll be focused on an obsession or a compulsion when he's supposed to be doing a math problem or taking notes in science, and the teacher or parent thinks he's lacking focus. He may even tell you that he "got distracted," but if you dig a little bit, you'll probably find out that he was thinking about something fairly intently; it's just that the "something" was something other than what he was supposed to be thinking about. ;)

 

Long way of saying . . . I'm not sure I'd move toward medicating it. We tried it, and it didn't work because it wasn't ADD or ADHD. It was PANDAS OCD, and it's only been through PANDAS treatment, OCD treatment and time that the distractability taken a backseat.

 

Hang in there, and good luck!

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topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

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topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

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topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

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topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

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Nancy - thanks so much for the wonderful information and advice. I really do not want to medicate him, as we have tried a couple in the past without any success, but it also makes me extremely nervous. I think I want to know that if he is having mood swings, it is not from a certain medication. I think I will hold off as long as possible. He is currently seeing a therapist who specializes in CBT but not ERP. I am going to talk to her about it, because I really like her, but need to look into the ERP.

 

I will definitely start to try and introduce some nitrate-free food. It is funny, because I thought about nitrates long before he was diagnosed. He loved Salami growing up and would eat it every day, and also loves hot dogs. I know both of these contain nitrates and I also craved them when I was pregnant - funny, huh :)

 

He always used to be a very healthy eater, but as he is getting older, he is really enjoying the "junkier" kinds of food.

 

I really like you explained the familiarity of being home vs. school. I never really thought about it that way. My son also said that even though he is distracted, he still gets good grades. This is true - he got all A's and B's last year.

 

We will be having a 504 meeting, hopefully next week, to update his current plan. We are really lucky that we have an amazing support system at his school. I am very involved and I am also a substitute teacher in the school system, so I know a lot of the people. I think communication is very important - so hopefully that will help out this year as well.

 

I was not sure if the ADD was related to the Pandas or not. He was evaluated several times for ADHD and was never found to have it - so it could just be part of the exacerbation.

 

Thanks again.

 

Rachel

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