Non ABX Meds and Side Effects for PANDAS Kids

[cab40]

Anyone been given PANDAS child tenex?

Edited March 23, 2012 by cab40

[MomWithOCDSon]

We tried tenex (Intuniv) for our DS's ADHD-type PANDAS behavior. Initially, we all thought we saw some good impacts on his ability to pay attention, sit still, etc. But long term, the effects seemed to wane, and like you, we just weren't willing to increase the dose to see if the positive impacts would return. And it did lower his blood pressure measurably, too, though we did not see any tics as a result of it.

 

What we came to realize with our DS after a lot of trial and error, but it took a lot of push-back from us with his dox, is that the anxiety/OCD is primary to his PANDAS symptomology, and once the anxiety is under better control, ALL the comorbid behaviors -- ADHD, PDD, etc. -- fade away. So we kept pushing at treating the anxiety first and foremost, rather than those ancillary pieces.

 

You say that abx has not helped . . . just worrying what you've been trying and for how long? I'm sorry, I can't remember your particular story. Have you tried any other interventions for the anxiety/OCD?

 

We really feel we've gotten some very real support from a glutamate-modulating mood stabilizer, lamictal. Don't know if that'd be something you'd be willing to try, but FWIW. Feel free to PM if you'd like to trade some more info; don't want to go on too long here lest I begin to sound like a broken record, since I post fairly regularly!

[LNN]

CAB - can't offer any input on tenex. We were offered when DS was 6 and in his first episode (Tics were a major major issue). We declined.

 

I do want to say, abx do not necessarily work immediately and it's sometimes a matter of finding the right one. But since you're also dealing with spectrum symptoms, this may be something to consider...the article comes from a lyme perspective, but the message is the same regardless of which bacteria is the trigger - biotoxins can be a major contributor in a case of chronic illness.

 

Biotoxin Pathway

 

Given your concerns, I'd suggest trying alternatives first - such as ways to support the body detox (milk thistle, clay, charcoal, chlorella, et al), things to help inflammation (ibuprofen, curcumin, tumeric), and encouraging super regular BMs - minimum once a day, using fiber and/or miralax disguised however you need to. Can't tell you how these things, together, have helped DS feel better (not great but far better).

 

I know it sounds crazy to suggest detox/anti-inflammatories for ODD and impulsivity. But when we focus on these things, my son's impuslivity resolves and I hear "ok, mom" instead of 10 minutes of arguing.

[beeskneesmommy]

Cab - we have not tried Tenex and our situation is quite diff. as my 4 yr. old son does respond well to abx - just hasn't seemed to stick in the past and and we have gone up and down. He also is pretty clear cut Strep:PANDAS, However, along with the other classic PANDAS symptoms, ADHD is a biggie, emphasis on the H! I am not a fan of using stimulants in a little guy, having seen long term use cause marked tics in sick kids with which I have worked in the past. We have tried several abx and I belive that it is often a matter of finding the right "fit". Cefdinir is one being used in a research trial right now because it is unusual in that it crosses the blood brain barrier more easily than other abx. Although we did well with Augmentin, Cefidinir was responsible for giving my son a big push forward for a couple of months. I have a lot of faith in that particular abx. I wish you well and send my hope and positive energy your way!

 

Kath

[cab40]

thanks!

Edited March 23, 2012 by cab40

[cab40]

We tried tenex (Intuniv) for our DS's ADHD-type PANDAS behavior. Initially, we all thought we saw some good impacts on his ability to pay attention, sit still, etc. But long term, the effects seemed to wane, and like you, we just weren't willing to increase the dose to see if the positive impacts would return. And it did lower his blood pressure measurably, too, though we did not see any tics as a result of it.

 

What we came to realize with our DS after a lot of trial and error, but it took a lot of push-back from us with his dox, is that the anxiety/OCD is primary to his PANDAS symptomology, and once the anxiety is under better control, ALL the comorbid behaviors -- ADHD, PDD, etc. -- fade away. So we kept pushing at treating the anxiety first and foremost, rather than those ancillary pieces.

 

We really feel we've gotten some very real support from a glutamate-modulating mood stabilizer, lamictal. Don't know if that'd be something you'd be willing to try, but FWIW. Feel free to PM if you'd like to trade some more info; don't want to go on too long here lest I begin to sound like a broken record, since I post fairly regularly!

Edited March 23, 2012 by cab40

[cab40]

OCD MOM,

 

How old is your DS?

Edited March 23, 2012 by cab40

[cab40]

Will get there I guess! (Some pos thinking!)

Edited March 23, 2012 by cab40

[Ozimum]

Hi cab40,

 

You are not alone. Our Ped was useless, along with our now ex family doctor! I'm not sure a psychiatrist is likely to be that PANDAS savvy. A psychologist might be helpful, particularly when the PANDAS symptoms abate. I'm not sure - have you found a PANDAS dr? Do check the helpful threads right at the top of the PANDAS/PITANDS page, if you haven't yet found them.

 

Have you considered/heard of a DAN! doctor? DAN! stands for Defeat Autism Now! Google ARI - Autism Research Institute (I think) to learn more. A DAN! dr or Biomedical dr is one who has done training in alternative treatments for kids on the spectrum and usually involves sorting out suitable diets (eg gluten free and casein free) and checking vitamin and mineral levels for any deficiencies. Many on the spectrum will be deficient somewhere. It's important because deficiencies wreak havoc on the immune system causing issues with allergies/asthma/ADHD and Autism. These issues often stem from gut problems so DANs will recommend probiotics. A good DAN! dr is a real treasure, particularly if they have had experience with PANDAS. I have a friend who credits our DAN! dr for sorting out her kids' ADHD issues and he helped my son with PANDAS, leaky gut/gut dysbiosis and Aspergers.(My son's DAN! is my no 1 hero!)

 

I also recommend reading Dr Ken Bock's book "Healing the New Childhod Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders". He's a DAN! dr and he also discusses PANDAS.

 

Someone in your local Autism support community is bound to know of a good and hopefully local DAN!/Biomedical dr. Ask around until you find a recommendation. (Don't be put off if you don't find one straight away. Not everyone in the Autism community has cottoned on to how good a DAN! can be. So you may need to persist.) And check out the ARI website for some advice on finding a DAN!

 

Good luck! Hang in there!

[LNN]

Cab,

Ozimom has good advice. Successfully treating a complex illness requires finding the right key for the right lock. You are more likely to find the right key with either a DAN doctor or an integrative doctor who can blend western medical practice with natural treatments. We see a DO (doctor of osteopathy) who is like an MD but the focus of training is on the whole body as a system rather than isolated body functions. The drawback is that many integrative and DAN doctors don't accept insurance payments. They'll probably give you the forms to submit a claim to your insurance co. for reimbursement but you're out of pocket for any difference that your insurance co. won't cover. It's expensive, but sometimes it ends up being the only path that yields results.

 

As for beating yourself up about time lost - stop. It isn't helpful to anyone and it isn't the result of not caring or not trying. You gave your best and trusted the doctors we've all been taught to trust. And along the way, you've picked up clues. You know what didn't work. And while that's not very satisfying, it is useful. Take the energy you're using to beat yourself up and turn it against the disease(s) that are kidnapping your child. You can blame yourself after he's well. Right now, it's a distraction.

 

My son has been ill since the end of kindergarten. He just finished 3rd grade. Do I wish I could go back and do things differently? Absolutely. But each road block gave us clues. We move forward and inch toward answers. As for not recognizing OCD, I read somewhere (maybe on the OC Foundation site) that the average OCD sufferer goes 14 years before getting help. OCD is like a kidnapper - it terrorizes the child and tells him that if he tells someone what's going on, something really horrible will happen and it will be the child's fault. How are you expecting yourself to see through that and "know" that your young child has OCD?

 

So in this order, I'd do the following:

1. Stop beating yourself up

 

2. Read as much as you can on OCD in young kids (What to Do When Your Brain Gets Stuck, Up and Down the Worry Hill to read with your child and for you - Talking Back to OCD by John March - it's for teens and their parents but will help you understand that your role is to be a coach - that you can't fight the OCD - only your child can).

 

3. AFTER you understand OCD a little better, you can look for a therapist - you'll be better able to interview therapists and find someone who "gets it" - make sure they understand CBT (Cognitive Behavior Therapy) and ERP (exposure response prevention). Any other therapy won't touch the OCD. I personally would not seek a psychiatrist because they primarily prescribe medications without therapy and until you unravel what's going on, psych meds may complicate the picture - but if you're at wits end, no one here would judge you for trying a low dose of something to help the family cope - very personal decision.

 

4. Seek an integrative, DAN, DO or other doctor who uses a "blended" approach to health. Many of us have fired our first or second pediatrician and seen several "experts" before finding one who could be a partner. I personally steer away from ones who claim to know it all, as I think our kids are too complex and we need someone who will help us explore, not dispense one-size-fits-all treatments. I'd personally interview doctors and find one who uses some sort of detox to support the body while you're exploring treatments. But that's my bias based on what we've found for my son.

 

5. As for detox, it's hard to speak in absolutes. As Jodie (sptcmom) pointed out in another post, some well-meaning doctors may focus on treating one thing only to unleash something else. So I hesitate to throw things out there as absolutes. Your son could have a lot going on that requires doing things in the right order. So I'll just toss out some general detox ideas, but they probably won't produce dramatic results in and of themselves.

 

The principal of detox is to suck up the toxic stuff floating around in the body. The liver and kidneys are the major detox organs. So you can look at supporting the liver - but with your son's complex and possibly untreated issues, you should do this under the guidance of a doctor. Sptcmom may have more input on this. I'm just not qualified. The second detox tool commonly used to to add a "sponge" that can suck up or bind to the toxins. Activated charcoal, bentonite clay, chlorella - are commonly used. They go into the gut and bind to things and are then eliminated in a bowel movement. How much? Start out slow and build up. The caution is that these binders bind to everything, not just toxins. So you can't take them at the same time you take an antibiotic or probiotic or other medication. Timing has to be a few hours away from other medications. Again, an integrative doctor is your best guide for this.

 

Once you've sucked stuff up, you need to get it out of the body. So you need to make sure your son has regular bowel movements - at least once a day, preferably more, but firm, not loose. A loose stool means things are passing too quickly thru the intestines, before enough liquid, with nutrients, is absorbed. So the goal is frequent, firm but not hard, BMs. Likewise, lots of water keeps the kidneys clean.

 

I wish I could offer more concrete steps, but if I've learned one thing in the 3 years I've been on this road, it's that the sicker kids are like onions, where you have to peel away layers of illness. No simple or quick answers. Read as much as you can and find a doctor who can work with you. I know the thought of dealing with school in a few months is overwhelming. But for now, I think I'd focus on the foundation - learn about OCD and about supporting the body. Then see where you're at in 6 weeks and worry about school then. You can only focus on just so much at once.

[beeskneesmommy]

Cab - you r a good mom and you are doing your best! We went thru 10, yes 10 docs before my son fell apart and we finally ended up at CHOP. He was diagnosed at age 2.5, and they all kept treating the Strep Throat with 10 day runs of abx. He lingered on to his 4th birthday before we got the help that we needed. I kept saying "shouldn't we treat the PANDAS, not just the Strep"? They didn't know what they were doing and rather than admitting it and doing the research or sending us to a specialist, they just kept blowing us off, although they ALL agreed that it was PANDAS. I took my son on my own to a Neuropsych doc at Children's Duke here in NC. He said "It's very suggestive of PANDAS. Come back and see me in 6 months"! That was it. No treatment. We were told to get our son's tonsils out. We were told "No tonsils, no Strep, no PANDAS". I beat myself up a lot when he had a major episode last Fall, from which he is still up and down in recovery. It is likely that he fell apart d/t having active Strep during the tonsillectomy and no sterilizing abx beforehand. Throughout it all, I was actively seeking help for my son day and night. However, the professionals that I looked to for this help dropped the ball. You need a specialist! Sounds like a DAN is the way to go, perhaps also in conjunction with a PANDAS specialist. Can you tell me what state you live in? There are people all around the country that can help, but wait lists can be long. You need to get an appointment now with some docs, in order to get in to see them 2 months from now.

Please don't beat yourself up. You cannot do more than your very best and it is clear that you are actively seeking help!

[MomWithOCDSon]

OCD MOm,

 

How old is your DS? Can lamicatal be used on a 8 yr old 60 lbs? We are so confused. And UI am ashamed and beating myself up. I should have known better. He is so dev delayed now and we knew he had PANDAS in 5/08, (4 yrs 10 mo old)thought he was in remission, then jsut kept trying one ABX after another, tonsils out, then thought the liquid AMOX-CLAV ES was themiracle. Waited too long to fidn out that did nto last very long, and we've got peopel telling us he has aADHD, he def displays ASpergers now, but maybe d/t uncontrolled pANDAS. Nevertheless, we can't ge tthose yers back. SOcially emotionally a mess he is, I feel to blame cause I rally did nothign I guess, though I thought I was.....now cluelss and scared, sending hi back to old school whwere, well, I can't go there. Precioud few options in AZ. Pegy ent me a thread I read a post from you and another mom about OCD. I realize I ddi not undestadn it at all. He cannot write since second big PANDAS episode winter 2009, anxiety riddden turned to computers and comulsions wihtthat, and gets in trouble. What can we DO FOR THIS ANXIETY?OCD? I am at apoitn where we start back school Aug 11, not enough time to get my own poor head on at all. I simply do not know how to even get in touch with anyoen here to ehlp us. No one moves but a snails pace, if at all. SO ashamed I am, and lost and rambling of course.......Tthe OCD realm is so complex, I'm ot sure where to turn. And ok here's more how to even get an advocate worth anything to help us come August.

 

Ok I know it's more than the meds, but you can see we are cluelsss. And I'm not dumb! aAt least I thought I wa snot. My son suffers and I'm not sure what to do.

 

Bottom line, could you tell me how you treated your son? What did you do first? Meds tried? Ages? What age, anything you can tell me..you can Pm me too if you'd like...I'm too upset to have tried to figure out how to do that w/ you this time sorry.

 

Trying neuofeedback, not enough. In counsleing, but not enough. Too much focus on scial skills not enough on anxiety kno wI know that. ut still, like a broken record, don't know what to do. Play-therapy when we knew he had to be in therapy but for what? It was all un-foucsed. I don't know how this all hapened this way. Now he's going into third grade, I fell we have ruined his life. No friends, cannot relate to anyone his age, only much younger.

 

Cab --

 

Here I'll just echo what the others have said: you're a good mom, and you shouldn't beat yourself up. This is a complex illness and a complex issue, and we can't spend too much time and energy looking backwards and wishing we'd known more than we knew then, or done something differently then than now. We just have to look and move forward. I'll PM you with more detailed answers to your questions, so as to spare everyone else info they may already have seen from me. But hang in there and know that our kids are more resilient than they may appear, as are we; you and your DS can make headway yet!

[nicklemama]

My DS is 7.5yrs, weighs 55lbs, had PANDAS majorly impacting him for 1 yr before diagnosis and treatment and takes 50mg 2x day of lamictal. I'll offer this though. It did a decent job, most especially of taking the edge off raging and turned it more into anger but not attacking us. It does not do much for his anxiety and ocd. My DS presents w/ age regression, social issues, etc... so much so that a neuropsychologist gave him a dx of Aspergers last fall before the PANDAS diagnosis. However, we knew our son has not always had these issues. Abx improved the social issues and regression somewhat but after 6 months, he was at a plateau of not further improving. My DS is 6wks post IVIG and we are amazed at the improvement in his social skills and age appropriate behaviors now. He still has anxiety, ocd and is ticcing. We see some small improvements in them that wax and wane.

 

I know we are early in the IVIG game but if you can at all consider IVIG, I would highly recommend it.

[beeskneesmommy]

Thank you Nicklemama - IVig is a confusing issue for me. I had a phone consult with Dr. K, who told me that he has 89% success rate on the first and only go-around, with 12% having to return for a 2nd run. These stats seem very optimistic to me in comparison to what I have read on this and other forums. Our son is deeply affected on and off, but functioning still in preschool and life in general, although when he has a flare-up, he has poor insight and judgement even for a 4 year old and it affects him socially. He has no dual diagnosis - is healthy in all other ways besides Strep:PANDAS. I wish there was some sort of reporting forum for parents to write about ongoing r4esponse after IVig, so I could get a better idea of it's effectiveness. Anyone know of such a venue?

[SSS]

The social anxiety decreasing after pandas treatment has been a big wow for us. Happened when we very first started Azith., and after IVIG, it has been wonderful to watch.

 

We did try Tenex. My dd6 does not have ADHD (oh, but she can be hyper) anyway, it was before IVIG, she could NOT control her body- pinch, run, hit, run (attacking people in the house) and her verbal tics (coprolalia) were also out of control. I was desperate- tried Tenex (intuitiv time release version.)

It ramped up her OCD and separation anxiety to the point I could not leave her side, and left her tired and very scared feeling.

Tried it a 2nd time to make sure, same thing.

Dr. said he never heard of that (of course.)

So, no, absolutely did not work for us, the Tenex.

But, all our kids are different, right? Just thought I'd throw in what we saw with it.