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my ds is nose-diving and we are stuck waiting


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So we are waiting to see if he qualifies for NIH clinical trials and we do have a September appointment with dr. Bouboulis. In the meantime, penicillin this time round seems useless and regular dr won't change it. I'm doing lots of vitamin C and adding ibuprofin. Is there such a thing as kids' ibuprofin that is not full of food dye and other garbage? It's crazy frustrating to watch him deteriorate daily and have the dr content to give it another two weeks to see if that helps. My dh is trained as a counselor and I'm a special educator with a concentration in behavior management - we've pulled every professional trick we know plus those that colleagues have recommended and ds sees a therapist weekly, yet the dr doesn't get that this is not just behavioral somehow. The CBT and rewards and incredible 5 point scale are definitely useful, but not sufficient alone and neither is the penicillin in my observation. And I have to sit and wait to get in elsewhere - dislike! Open to other recommendations of supplements to add, CBT and therapies to try, etc. I really hate to watch him go through a meltdown and then hold his head and weep asking what's wrong with him. At least there's a spot to vent...

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Emily,

 

I was in your position. I just drove to any doc I could find that would help me. I drove to New York doctor and got zithromax 250 mg every day for immunomodulation because my DAN would only give it 250 mg ONCE a week. I drove to 90 minutes to an LLMD when I needed someone to order LYME bloodwork. Look at PANDAS network for their list of doctors....or you can also ask here for doctors in your neighborhood that are PANDAS friendly.Or could you show the doctor a paper on teh zithromax that is immunomodulatory such as Dr. Schulman's article.

 

I don't know what things you can take that will not disqualify you from the study.

 

There is dye free ibuprofen but unfortunately all brands generic that I have found contain some type of sorbitol, etc.

 

Good luck. Like I said, I don't know what are the binders on admittance to the study.

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Emily --

 

I'm not sure what supplements, etc. might eliminate you from the study, either, but I would think that if you can use ibuprofen, then you can use other supplements, etc. that have a short half-life, i.e., work their way out of the system in a relatively short-term period.

 

So, I might suggest you try Valerian Root to take the edge off the anxiety/meltdowns. It seemed to help our DS, and we used to give him a valerian root capsule every morning beffore he left for school, and then again when he got home before starting homework. At night, you might try melatonin; it can help induce sleep even for an anxious, wired kid. I would start low on that (0.5 to 1.0 mg.) and see how he responds; you can take the dosage up higher, but for some people it increases dreaming and/or can make them sluggish in the morning if they take too much.

 

Is your DS taking any Omega's? They're supposed to help inflammation, as well, and help heal the blood brain barrier. I don't know how immediate any impact might be, but I'd tend to think that they would more than likely help and be unlikely to hurt. If your DS has tics, though, I would go there cautiously since there are some anecdotal reports that Omega's sometimes increase tics in some kids.

 

As for CBT/ERP, since your DS is seeing a therapist and you and your DH have some professional exposure to that world, as well, I'm sure you're skilled at using what you know. But if there's a compulsion or obsessive behavior or two that are particularly problematic and you'd like some fresh ideas or new perspectives on things to try, maybe give us a little more info on that? We might be able to give you some ideas.

 

Finally, if your DS is functional enough to be outside, take a long walk or bike ride or something along those lines, I'd highly suggest getting him physically moving; maybe his therapist has already mentioned that. Exercise really seems to help dissapate a lot of the nervous, anxious energy, though I recognize that it can be hard to get a highly-anxious kid out in the world sometimes. There were periods during which my DS was afraid to exercise because he'd had a panic attack, feeling his heart jump out of his chest, and he thought he was going to die; so anything that got his heart rate up scared him badly for a while. :( Once he got over that, he developed a fear that he was going to get run over crossing a street, either by foot or on a bike, so he would pause and walk in circles at every intersection, trying to psych himself up enough to cross that doggone street! :wacko: But he did eventually beat back these sorts of fears, and your DS can, too.

 

Hang in there!

Edited by MomWithOCDSon
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Emily --

 

I'm not sure what supplements, etc. might eliminate you from the study, either, but I would think that if you can use ibuprofen, then you can use other supplements, etc. that have a short half-life, i.e., work their way out of the system in a relatively short-term period.

 

So, I might suggest you try Valerian Root to take the edge off the anxiety/meltdowns. It seemed to help our DS, and we used to give him a valerian root capsule every morning beffore he left for school, and then again when he got home before starting homework. At night, you might try melatonin; it can help induce sleep even for an anxious, wired kid. I would start low on that (0.5 to 1.0 mg.) and see how he responds; you can take the dosage up higher, but for some people it increases dreaming and/or can make them sluggish in the morning if they take too much.

 

Is your DS taking any Omega's? They're supposed to help inflammation, as well, and help heal the blood brain barrier. I don't know how immediate any impact might be, but I'd tend to think that they would more than likely help and be unlikely to hurt. If your DS has tics, though, I would go there cautiously since there are some anecdotal reports that Omega's sometimes increase tics in some kids.

 

As for CBT/ERP, since your DS is seeing a therapist and you and your DH have some professional exposure to that world, as well, I'm sure you're skilled at using what you know. But if there's a compulsion or obsessive behavior or two that are particularly problematic and you'd like some fresh ideas or new perspectives on things to try, maybe give us a little more info on that? We might be able to give you some ideas.

 

Finally, if your DS is functional enough to be outside, take a long walk or bike ride or something along those lines, I'd highly suggest getting him physically moving; maybe his therapist has already mentioned that. Exercise really seems to help dissapate a lot of the nervous, anxious energy, though I recognize that it can be hard to get a highly-anxious kid out in the world sometimes. There were periods during which my DS was afraid to exercise because he'd had a panic attack, feeling his heart jump out of his chest, and he thought he was going to die; so anything that got his heart rate up scared him badly for a while. :( Once he got over that, he developed a fear that he was going to get run over crossing a street, either by foot or on a bike, so he would pause and walk in circles at every intersection, trying to psych himself up enough to cross that doggone street! :wacko: But he did eventually beat back these sorts of fears, and your DS can, too.

 

Hang in there!

 

Melatonin is a good idea - I'll go slow with it. He can swallow a small pill, but I'm not sure he'll swallow a capsule of Valerian. I know tinctures taste horrid. I'll shop around and see what I can find. He does find running and biking to be calming, so we try to do a lot of that since he's bouncing around a lot. I'm grateful he's not afraid to go out to do that. Both of my kids have been on omega 3s throughout their childhood. I got the books What to do when you dread your bed, What to do when your brain gets stuck, and what to do when your temper flares, all written for kids as a workbook. He's enjoying the dread your bed one. Those just came in on Saturday. He obsesses about making mistakes and then doesn't want to go to school cause he's convinced he will make mistakes. The school uses a responsive classroom technique and is not punitive thankfully. Urinary frequency quite a bit right now. He's cleaning and cleaning and cleaning - lucky me in one sense but not when it's time for him to switch to something else like dinner or bedtime. His writing is a mess last week and this week and he struggles with classwork and homework. It's getting difficult for him to eat again and I'm afraid he'll go back to the refusing to eat being convinced he'll throw up like before.

 

Ugh - now I know how my mother felt when she watch me at age 9 decline into double pneumonia with doctors telling her I'd be fine and it was just viral. I wound up in the hospital for a week on O2. She was furious cause she knew something more was wrong with her child. My dh had walking pneumonia back in Dec. before my ds fell off another cliff in January, yet no one has checked him for mycoplasm. They just focus on the strep. What if he has both?

 

I hope I didn't sound too know-it-all, I don't but it's frustrating to have the dr discount the things you see in your child and not understand the level of intervention we're applying.

thanks,

Emily

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Emily,

 

I was in your position. I just drove to any doc I could find that would help me. I drove to New York doctor and got zithromax 250 mg every day for immunomodulation because my DAN would only give it 250 mg ONCE a week. I drove to 90 minutes to an LLMD when I needed someone to order LYME bloodwork. Look at PANDAS network for their list of doctors....or you can also ask here for doctors in your neighborhood that are PANDAS friendly.Or could you show the doctor a paper on teh zithromax that is immunomodulatory such as Dr. Schulman's article.

 

I don't know what things you can take that will not disqualify you from the study.

 

There is dye free ibuprofen but unfortunately all brands generic that I have found contain some type of sorbitol, etc.

 

Good luck. Like I said, I don't know what are the binders on admittance to the study.

So they don't all have wait lists then? We drive 10 hours to visit grandma, so I don't mind driving! I'll look for Dr. Shulman's article. thanks

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Like Nancy, I'm just going to toss some things out for you to investigate on your own. I don't want to jeopardize your NIH eligibility but many of the the things I'm mentioning are also found in foods and have short half-lives - not titering up or down, all low doses. These are the supplements that worked for us at one time or another. I have two kids - some supplements worked well for one and not the other. You'll have to do your due diligence. I'm only giving you some things to consider.

 

1. Natural antibacterials - there's a thread about natural antibacterials you can look into. Olive leaf extract, garlic, samento/cat's claw...anti-virals like l-lysine, oregano, andrographis... Vitamin D3, B6 and zinc are important for the immune system - consider supplementing these. My DS had an amazing response to zinc + B6

 

2. anti-inflammatories/anti-oxidants (help the body eliminate toxins and damaged cells) - resveratrol (the antioxidant in wine that's good for you - also derived from Japanese Knotwood in addition to grape skins), CoQ10, quercetin, tumeric, curcumin

 

3. natural calming agents - tryptophan, 5-HTP, valerian root, melatonin, gaba,

 

Tryptophan has really helped my DD, who has extreme anxiety and worries about mistakes and has eating issues. It not only calms her but also seems to calm her GI issues, allowing her to eat without having Gerd or feeling like she's going to throw up. We started low dose - 170 mg and built up. At a bad time, she was up to 1 gram. But after a few weeks, she stabilized and then started to have hand tremors. We backed down to 500mg and the tremors resolved and her mood stayed stable. So that's been our sweet spot.

 

The two important guidelines for adding anything is to start slow and go slow. If at all possible, add only one thing at a time and give it a week or two. If you add more than one thing at a time, you end up not knowing which thing is causing a good or bad response. But if you're in crisis, we've all resorted to throwing more than one dart at a time and go back later to sort it out. It's a balance between acting methodically and getting fats relief.

 

If your child isn't entirely pill savvy yet, some of these ideas may not work. Others might come in capsules that you can break open and mix into foods or juices. Or you can look for foods that are high in some of these items - tryptophan, lysine, resveratrol, zinc, B6 - can all be consumed in food form. Just trying to toss out ideas so you can maybe find a few things that will work for you.

 

I also second Nancy's idea - there are some very knowledgeable parents here who have great ERP/CBT ideas & experiences. If you want to post about problem behaviors/fears, we can brainstorm plans with you.

 

Hang in there...

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Melatonin is a good idea - I'll go slow with it. He can swallow a small pill, but I'm not sure he'll swallow a capsule of Valerian. I know tinctures taste horrid. I'll shop around and see what I can find. He does find running and biking to be calming, so we try to do a lot of that since he's bouncing around a lot. I'm grateful he's not afraid to go out to do that. Both of my kids have been on omega 3s throughout their childhood. I got the books What to do when you dread your bed, What to do when your brain gets stuck, and what to do when your temper flares, all written for kids as a workbook. He's enjoying the dread your bed one. Those just came in on Saturday. He obsesses about making mistakes and then doesn't want to go to school cause he's convinced he will make mistakes. The school uses a responsive classroom technique and is not punitive thankfully. Urinary frequency quite a bit right now. He's cleaning and cleaning and cleaning - lucky me in one sense but not when it's time for him to switch to something else like dinner or bedtime. His writing is a mess last week and this week and he struggles with classwork and homework. It's getting difficult for him to eat again and I'm afraid he'll go back to the refusing to eat being convinced he'll throw up like before.

 

Ugh - now I know how my mother felt when she watch me at age 9 decline into double pneumonia with doctors telling her I'd be fine and it was just viral. I wound up in the hospital for a week on O2. She was furious cause she knew something more was wrong with her child. My dh had walking pneumonia back in Dec. before my ds fell off another cliff in January, yet no one has checked him for mycoplasm. They just focus on the strep. What if he has both?

 

I hope I didn't sound too know-it-all, I don't but it's frustrating to have the dr discount the things you see in your child and not understand the level of intervention we're applying.

thanks,

Emily

 

You don't sound too "know-it-all" at all! Hey, most of us have here earned our "I told you so!" stripes, sometimes the hard way, so we can relate! To the extent possible, I think I'd keep looking for that needle-in-a-haystack doctor who might listen to you without rolling his eyes. I know where you're coming from, as we've had the same experience. It is incredibly frustrating! :angry:

 

If you've had a chance to peruse the threads here, you'll see that deteriorating handwriting/small motor skills is common among our kids in exacerbation; I don't know if you have an official 504 Plan or something along those lines, but you might inquire as to whether your DS could dictate his answers and you can scribe them for him, or perhaps he could use a keyboard if that would help him keep up with homework and classwork? Both of those options are accommodations we acquired first in a 504 and then later in an IEP. Our DS doesn't always need the accommodation, but even now, as healthy as he is, it can come in very handy for keeping the workload under control.

 

Perfectionism is a big OCD bear, that's for sure! A couple of things you might try: 1) have your DS make silly mistakes on purpose in an assignment (1+1 = 5, for example); crack a joke, make a big deal out of how ridiculous that is, etc. In other words, turn a mistake into something to lighten the mood, rather than bring it down. (After you've both had a good chuckle at the mistake's expense, he can erase and correct.) 2) Make some silly mistakes yourself in his presence and then, again, show some humor about it, laugh at yourself, own the mistake, show him how easily it is corrected, etc. 3) Have him create some short, easy, affirmation/mantras for himself that he can use . . . even rhythmically . . . to help push himself through a tough homework spot. Our DS had them written down inside the front page of his assignment notebook, and when he was feeling overwhelmed by or scared of his homework or of making a mistake, we'd encourage him to chant for a couple of minutes and then try moving on: "I can do this." "It gets easier once I start." "I'm good at math/geography/science/etc." It's not a quick turnaround, but over time, helping to lessen the avoidance (or "homework fight or flight" as we call it in our house) at home bleeds over into the school day in a positive way, also. Unfortunately, most teachers don't get OCD, so when our DS gets visibly stressed, their first instinct is to back off, let him off the hook, take the work away. And sometimes that truly is necessary. But it also feeds that avoidance that you're trying so hard to curb.

 

When it comes to the neatness and cleaning, you probably should start trying to curb that some, also; it may continue to grow if he's permitted to indulge in it as compulsive behavior or a ritual that makes him feel better and more "in control." You might start by trying to distract him with another activity. If he resists, then you know he's ritualizing and you'll have to get more assertive about it. You could try telling him, "Okay, I'll give you 10 more minutes to straighten up your shelf, but then it'll be time to do something else." Use a timer, maybe even let him set it himself; a timer is objective, it's not Mom or Dad busting in on his ritual. It's an inanimate object. He may still get angry at it and hurl it across the room from time to time, but at least you're not on the firing line and he still gets the message. If the timer works, you can slowly trim the time that he spends engaging in any ritual down, from 10 minutes to 7 minutes to 5, etc.

 

Another technique is to delay the engaging in the ritual; sometimes, delaying will put it aside altogether, without the person even realizing they've foregone it. So, say, he says he needs to wash his hands and you know he just washed them 15 minutes ago, he's not sitting down to a meal, etc. Ask him to wait 5 minutes, and if he still feels he needs to wash, then he can. Keep increasing that delay period slowly over time until the compulsion takes a hike altogether!

 

The urinary frequency is tricky, since PANDAS can legitimately cause some of that, though in our DS's case, it turned into an obsession with always having a 100% empty bladder; in the end, it was the OCD that convinced him he "had to go" over and over again, and frequently he'd use a trip to the bathroom as another form of avoidance . . . I can't do my math 'til I've gone to the bathroom, etc. Again, in our case, we knew we had some of the medical pieces of the PANDAS under control with antibiotics so we saw the prolonged, frequent urges as another OCD behavior. We used the delay technique on him, and he was eventually able to separate true, physical need from the OCD nagging in his head.

 

Hope some of that helps and is not entirely redundant in terms of your DS's therapy. Feel free to keep putting some stuff out there and finer minds than mine will chime in, I'm sure! :P

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How about trying to get into an LLMD? Many of them are very knowledgable about Pandas. Zith is an accepted treatment for Lyme. I would go to www.lymenet.org to search for a good doctor near you. Also, ask to be put on the cancellation list for any and all practitioners you want to see.

 

I'm sorry if this sounds like doctor shopping, just trying to get you to a doc that might help.

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How about trying to get into an LLMD? Many of them are very knowledgable about Pandas. Zith is an accepted treatment for Lyme. I would go to www.lymenet.org to search for a good doctor near you. Also, ask to be put on the cancellation list for any and all practitioners you want to see.

 

I'm sorry if this sounds like doctor shopping, just trying to get you to a doc that might help.

What's LLMD stand for - something with lyme, right?

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Like Nancy, I'm just going to toss some things out for you to investigate on your own. I don't want to jeopardize your NIH eligibility but many of the the things I'm mentioning are also found in foods and have short half-lives - not titering up or down, all low doses. These are the supplements that worked for us at one time or another. I have two kids - some supplements worked well for one and not the other. You'll have to do your due diligence. I'm only giving you some things to consider.

 

1. Natural antibacterials - there's a thread about natural antibacterials you can look into. Olive leaf extract, garlic, samento/cat's claw...anti-virals like l-lysine, oregano, andrographis... Vitamin D3, B6 and zinc are important for the immune system - consider supplementing these. My DS had an amazing response to zinc + B6

 

2. anti-inflammatories/anti-oxidants (help the body eliminate toxins and damaged cells) - resveratrol (the antioxidant in wine that's good for you - also derived from Japanese Knotwood in addition to grape skins), CoQ10, quercetin, tumeric, curcumin

 

3. natural calming agents - tryptophan, 5-HTP, valerian root, melatonin, gaba,

 

Tryptophan has really helped my DD, who has extreme anxiety and worries about mistakes and has eating issues. It not only calms her but also seems to calm her GI issues, allowing her to eat without having Gerd or feeling like she's going to throw up. We started low dose - 170 mg and built up. At a bad time, she was up to 1 gram. But after a few weeks, she stabilized and then started to have hand tremors. We backed down to 500mg and the tremors resolved and her mood stayed stable. So that's been our sweet spot.

 

The two important guidelines for adding anything is to start slow and go slow. If at all possible, add only one thing at a time and give it a week or two. If you add more than one thing at a time, you end up not knowing which thing is causing a good or bad response. But if you're in crisis, we've all resorted to throwing more than one dart at a time and go back later to sort it out. It's a balance between acting methodically and getting fats relief.

 

If your child isn't entirely pill savvy yet, some of these ideas may not work. Others might come in capsules that you can break open and mix into foods or juices. Or you can look for foods that are high in some of these items - tryptophan, lysine, resveratrol, zinc, B6 - can all be consumed in food form. Just trying to toss out ideas so you can maybe find a few things that will work for you.

 

I also second Nancy's idea - there are some very knowledgeable parents here who have great ERP/CBT ideas & experiences. If you want to post about problem behaviors/fears, we can brainstorm plans with you.

 

Hang in there...

Right - I wanted to go buy a bunch of things but settled for melatonin first to try to be methodical. He does love seafood and yogurt which are both reportedly high in zinc. Also his natural vitamin supplement cover zinc and B6 pretty well, I'll go read more on those. I've not been able to get him to ingest any food with tumeric or cucumin.

 

Behaviors: compulsive cleaning/organizing, can't sleep and night waking with anxiety, frequent urination, regressing writing, gets stuck on completing things just right to the point of meltdown/tantrum, afraid of making mistakes, difficulty eating anything mixed (even pizza when bad) and when at the worst refusing to eat at all for fear of throwing up, hyperactivity, meltdown/rage with schedule changes or transitions; thankfully we are not seeing a current resurgence in sensory hypersensitivity to light and sound

 

Things we're trying: 5 point scale for anxiety/rage with labeling of feelings and replacement behaviors to cope(recent addition); What to Do When You Dread Your Bed workbook (new), modifications at school, school intervention with OT, weekly reward for successful homework, running/biking to burn off nervous energy, D3 and omega 3 supplements, ibuprofin (recent addition), kid yoga poses that he learned in gym at school,sing, breathe deep, ask for a hug,weekly CBT and art, timer and advance notice to prep for transition. His 504 meeting is next week. Teachers report high distractibility and needing 2-3 prompts to complete a task. Sometimes unfinished classwork comes home in addition to homework. Usually needs 1-1 to complete a unit review. We're fortunate that his class size is small at 16 with teacher and TA and they use a lot of positive behavior supports school-wide.

thanks

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Things we're trying: 5 point scale for anxiety/rage with labeling of feelings and replacement behaviors to cope(recent addition); What to Do When You Dread Your Bed workbook (new), modifications at school, school intervention with OT, weekly reward for successful homework, running/biking to burn off nervous energy, D3 and omega 3 supplements, ibuprofin (recent addition), kid yoga poses that he learned in gym at school,sing, breathe deep, ask for a hug,weekly CBT and art, timer and advance notice to prep for transition. His 504 meeting is next week. Teachers report high distractibility and needing 2-3 prompts to complete a task. Sometimes unfinished classwork comes home in addition to homework. Usually needs 1-1 to complete a unit review. We're fortunate that his class size is small at 16 with teacher and TA and they use a lot of positive behavior supports school-wide.

thanks

 

Just wanted to say that one of the BEST accommodations we ever requested . . . and got . . . for our DS was one which calls for "Modify assignments/assessments for quantity, not quality." The problem with "extended time" and bringing home unfinished classwork to be completed for homework is that, for kids like ours who already tend to feel overwhelmed by the sheer volume of work that must be completed "perfectly," we're just continuing to roll a snowball downhill while it gathers more and more snow. Until it becomes so gigantic that no reasonable person . . . let alone a kid with anxiety . . . can begin to tackle it! So, if your DS is like many here and is quite bright and capable of grasping concepts quickly, but for whom perfectionism and anxiety interferes in terms of "proof," productivity and timeliness,an accommodation along those lines may prove to be a godsend for you as it's been for us. So, for instance, instead of 20 math problems for homework, DS's teacher assigns him 10 that permit him to demonstrate that he grasps the concepts without requiring the "drilling" that tends to bog him down. Maybe something like that would be helpful?

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Just wanted to say that one of the BEST accommodations we ever requested . . . and got . . . for our DS was one which calls for "Modify assignments/assessments for quantity, not quality." The problem with "extended time" and bringing home unfinished classwork to be completed for homework is that, for kids like ours who already tend to feel overwhelmed by the sheer volume of work that must be completed "perfectly," we're just continuing to roll a snowball downhill while it gathers more and more snow. Until it becomes so gigantic that no reasonable person . . . let alone a kid with anxiety . . . can begin to tackle it! So, if your DS is like many here and is quite bright and capable of grasping concepts quickly, but for whom perfectionism and anxiety interferes in terms of "proof," productivity and timeliness,an accommodation along those lines may prove to be a godsend for you as it's been for us. So, for instance, instead of 20 math problems for homework, DS's teacher assigns him 10 that permit him to demonstrate that he grasps the concepts without requiring the "drilling" that tends to bog him down. Maybe something like that would be helpful?

 

I like that! He is very bright and I dread the days classwork comes home - guaranteed nightmare.

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