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DD to go on psych meds or not during wait until Appt.


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Good Morning! I am sitting upstairs while on the computer while dd is hopefully coming down off of her rage downstairs. She had 2 Advil this am about 15-20 minutes ago. It's usually done something by now. My husband left for work right after we gave the Advil, and he was shaking, which is highly unusual for him.

 

Backing up, she's been taking longer and longer to get anything done. Pretty decent mood yesterday, but incredibly immature. We could hardly get her in the shower last night or dressed once she got out. Not OCD stuff, just lost in thoughts, doing other things, etc. She took a long time to take her supplements and antibiotic, and it was only under much duress. Us counting, her crying, us telling her we were going to have to give it to her if she couldn't take it. (Sorry this is such a long story.) I had to brush her hair, and was trying to be careful not to agitate...she hates for me to touch her hair or brush it, etc., but it is now lower back length, and frankly had become matted in huge knots. I couldn't let her go to school like that another day--they already don't know what to make of this, and I know that we are on our last leg there. She started to get more irritable and would whine and scream, dad would come in and tell her she needed to stop, she'd fly into a panic--wide-eyed panic with screaming and shaking. She kept telling me Daddy was mean and scary and clung to me seeming to understand that I was trying to help her.

 

But she could not stand the hair thing any longer and flew into a rage. She scrambled her hair up and turned on me screaming that I was stupid, horrible, get away, get away, get away!!!!!!! I never could calm her down even when I came up to her room and just sat beside her. She kept screaming and raging and telling me how stupid and bad I was from under the covers. I cannot begin to convey the level on RAGE. I'm sure that I lot of you can relate.

 

I thought that she would wake up in a better state. Sleep usually resets her. But she is very hard to get up, and when I finally got her out of the bed physically, she started raging again. Screaming, yelling, trying to hit and screaming that I was stupid, we were all stupid, etc, etc. My husband had to help me make her take the Advil and try to get her school skirt on. That, along with listening to her scream and yell and fight us about getting up was exhausting. At 115 lbs, she is now a force to be reckoned with.

 

My husband whispered during this whole things--she's gotta' take something. She's gotta' be on something. And while I agree, she needs something, NEEDS something, and we do, too, my concern is that we won't be able to distinguish psych med differences from treatment differences. We have an appt. on the 15th, and I thought we could suck it up until then, but right now I am not so sure. When she's doing okay, she isn't doing anything....no school work, no self help like getting in the shower or brushing her teeth, but when she's having a hard time, she is brutal. I really am concerned that our younger two children (and possibly our teen) will have PTSD when this is all over. For now, I'm afraid this seems normal to them.

 

My question is: would you put her on a psych med? If not, what would you do? We've been using peanut butter, Advil, and I've been giving Chlorella, Magnesium, stool softener, vit d, methylfolate, zithromax, milk thistle, sometimes garlic in a tab and zinc.

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We have seen many of the same things - but our son is only 5, and hasn't even cracked 40 lbs yet (refuses to eat most of the time), so the physical stuff is a bit easier.

 

He does well on abx, but then he gets strep again and we're back at the beginning. After 2+ years, we finally added an ADHD medication, low dose Vyvanse. We had some of the same issues - when trying to get him to do anything (meds, take a bath, get dressed) he wouldn't necessarily rage, but he would do a million other things or run around like a maniac making everyday simple tasks take longer and longer.

 

We added the vyvanse in December - right before break so we could be home to observe the differences first hand. It really has helped us. While for a while after starting it, there was still anxiety about doing everyday tasks - it was less distracted and we could focus on the anxiety itself and help him work through it. It worked wonders.

 

We are headed for our first IVIG with Dr. B the first week in April. We are hoping that we can take him off of it after that. He did reach 100% after T&A a year and a half ago, but relapsed quickly with another strep ifection 6 weeks later.

 

I fought the urge for any psych meds for a long time. The one we chose is a low dose, and does not need to be weened off or "ramped up" before seeing results. The first day was scarry, he was almost manic - talking a mile a minute, but within 36 hours of starting to take it - there was a remarkable difference.

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Hi there,

 

I have been where you are and I feel for you from the bottom of my heart. It is frightening, sad and leaves one feeling desperate. Hang on tight.

 

From my experience, I would say don't treat the ocd with medications until the PANDAS/PANS is under control. Ssri's can make the situation much worse (hard to believe I know!), If you do decide to treat with ssri's consider giving your psychiatrist or other treating provider the ample information about medicating these kids; the smallest dose possible must be used and increased very slowly. Our dd became psychotic on 30 mgs of celexa, a dose normal in treating pediatric ocd.

 

Our dd is currently taking 0.75 of risperdal. I wish we didn't have to use this, but it is the only thing that keeps her somewhat calm and functioning. You're right when you question how you will gage the efficacy of treating PANS if you have a psych med on board. We are in that position ourselves....not sure what is working because we chose to use risperdal to keep her from destructive rages. It's a hard call to make.

 

While we were in the worst of it, I allowed dd to watch tv all day for about 3 months. Previously I was a parent who allowed tv on weekends only. I was already homeschooling when she got sick so attending school was not an issue for us, but during that time she was unable to do work of any kind. It is frightening to veer so far away from 'normal', but nothing about these situations is normal. Do what you have to do to get by until treatment is underway and then reclaim your child and your life slowly.

 

This has been my experience and you'll get other, perhaps better, advice from members here. Whatever you do, take heart and believe that things will improve.

 

I wish you and your family the best.

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I just re-read your post from 2/10 - with possible lyme and/or strep still in the picture, I'm not sure you'll see benefits from a psych med, yet I have lived in your shoes and understand the feeling that you need to do "something" - especially when your spouse starts pressuring you. If you do decide to use a med, insist that you start at a dose that's half the usual starting point. As you suggest, the meds may treat a symptom, but they won't be treating the underlying cause and it will be hard to know what's what. By starting low, you'll be better able to eliminate the possibility that the med dose is causing problems by being too high. Pans kids tend to need much less dose-wise.

 

You say you're giving methylfolate but I don't see methylB12 (methylcobalmin) in the list. The two need to be given together in order for the methylfolate to do its thing. Have you tested for MTHFR or just giving it on the chance she may have a mutation? My daughter had many of the same reactions you describe - the rage when I brushed her hair and it hurt, the not wanting me near her yet not wanting me to leave, the provoking of fights, the freaking out when we urged her to get going in the morning, the daydreaming - she was just awful to be with. Yet she needed me so much. She was out of her mind with anger and irrational reactions. Turns out the dose of methylfolate I was giving her was too high and I wasn't giving methylB12. I used this case study as a guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ and gave my DD 50mg of niacinamide hidden in the creme of an oreo (so much for health food). It calmed her rage in about 45 min. That's what convinced me to stop her methylfolate for a week and then re-start at a much lower dose. That seemed to do the trick for her and she's now very stable at 67mcg methylfolate + 1000mg methylB12 every other day. Here's her story http://www.easytolovebut.com/?p=2782

 

Not saying this is your answer. Only that sometimes you might be giving the right things but in the wrong amounts. And you may still have active infections. So if your gut makes you hesitate abut psych meds, talking yourself into them may not be your only option.

 

That said, I am not anti psych meds. I think quality of life - for the child and for the whole family - trumps "natural" vs. pharmaceutical ideology. I just think that ultimately, the greatest relief comes from finding and treating the root cause. But in the meantime, you do what you need to do to get thru the day.

 

As for vyvanse - my son (not my bi-polarish DD) started taking PS100 (which is 100mg of phosphatidylserine) plus a combo of Omega 3 flaxseed oil/Omega 6 primrose oil (he needs both) - which is similar to what you find in vyvanse. It has helped his focus and demeanor. But not sure if it would help with your bipolar behaviors.

 

You may also want to treat for yeast more aggressively - do the garlic consistently - and make sure you're using a good blend of probiotics. You can google grapefruit seed extract for yeast as well. An increase in bad behavior for the first week would actually be a good sign you're hitting yeast (yay - I bet you're thinking - just want you want!). And I'd still pursue the chronic infection piece. You can ask for a C3d immune complex blood test to look at how activated the immune system is - it won't tell you what the infection is but it can tell you how hyper the immune system is or isn't. Also consider mold. Last summer when DD was out of her mind, I found mold in the bottom of all our window a/c units and her allergies were thru the roof, which also made her manic.

 

Sorry - I know how hard this is. Hang in there. It's often a ball of string that needs unraveling, not one quick answer. But you'll get to the bottom of it. Don't stop believing that.

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I am so sorry. I can so relate. I have been there, just not with a 115lb child. If you are going to do psych meds, I would recommend lamictal. Before we knew anything about PANS, our son was seeing a therapist and psychiatrist. We put him on lamictal. It will not completely get rid of the raging but it will tamper it down. The plus is that it is a glutamate modulator, which seems to be "off" in PANS kids. The negative is it will not work over night. It will take you many weeks to work up to a therapeutic dose. We saw some relief within two weeks but got the most after we reached a therapeutic dose. We were desperate. We did not know our son had serious OCD and intrusive thoughts. It has a black box warning about allergic reaction. You have to start low and go slow to avoid a rare allergic reaction. Every psych med has its drawbacks. We felt lamictal had the better safety profile. My best friend has taken it for 15 yrs or more for seizures. It's actually an anti seizure med. it's used in bipolar disorder, too. You may need a neurologist or psychiatrist to rx it.

 

A little insight I've come to understand is when your daughter is dawdling, she' s probably going through some sort of OCD ritual in her mind and disrupting it causes anxiety to go sky high, hence the raging. She may have unfounded fears about you touching or brushing her hair or it may be sensory in nature. We've seen the wide eyed terror look too.

 

My son was on lamictal for about 1.5 yrs. We weaned him off three months after his first IVIG.

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I just re-read your post from 2/10 - with possible lyme and/or strep still in the picture, I'm not sure you'll see benefits from a psych med, yet I have lived in your shoes and understand the feeling that you need to do "something" - especially when your spouse starts pressuring you. If you do decide to use a med, insist that you start at a dose that's half the usual starting point. As you suggest, the meds may treat a symptom, but they won't be treating the underlying cause and it will be hard to know what's what. By starting low, you'll be better able to eliminate the possibility that the med dose is causing problems by being too high. Pans kids tend to need much less dose-wise.

 

You say you're giving methylfolate but I don't see methylB12 (methylcobalmin) in the list. The two need to be given together in order for the methylfolate to do its thing. Have you tested for MTHFR or just giving it on the chance she may have a mutation? My daughter had many of the same reactions you describe - the rage when I brushed her hair and it hurt, the not wanting me near her yet not wanting me to leave, the provoking of fights, the freaking out when we urged her to get going in the morning, the daydreaming - she was just awful to be with. Yet she needed me so much. She was out of her mind with anger and irrational reactions. Turns out the dose of methylfolate I was giving her was too high and I wasn't giving methylB12. I used this case study as a guide http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ and gave my DD 50mg of niacinamide hidden in the creme of an oreo (so much for health food). It calmed her rage in about 45 min. That's what convinced me to stop her methylfolate for a week and then re-start at a much lower dose. That seemed to do the trick for her and she's now very stable at 67mcg methylfolate + 1000mg methylB12 every other day. Here's her story http://www.easytolovebut.com/?p=2782

 

Not saying this is your answer. Only that sometimes you might be giving the right things but in the wrong amounts. And you may still have active infections. So if your gut makes you hesitate abut psych meds, talking yourself into them may not be your only option.

 

That said, I am not anti psych meds. I think quality of life - for the child and for the whole family - trumps "natural" vs. pharmaceutical ideology. I just think that ultimately, the greatest relief comes from finding and treating the root cause. But in the meantime, you do what you need to do to get thru the day.

 

As for vyvanse - my son (not my bi-polarish DD) started taking PS100 (which is 100mg of phosphatidylserine) plus a combo of Omega 3 flaxseed oil/Omega 6 primrose oil (he needs both) - which is similar to what you find in vyvanse. It has helped his focus and demeanor. But not sure if it would help with your bipolar behaviors.

 

You may also want to treat for yeast more aggressively - do the garlic consistently - and make sure you're using a good blend of probiotics. You can google grapefruit seed extract for yeast as well. An increase in bad behavior for the first week would actually be a good sign you're hitting yeast (yay - I bet you're thinking - just want you want!). And I'd still pursue the chronic infection piece. You can ask for a C3d immune complex blood test to look at how activated the immune system is - it won't tell you what the infection is but it can tell you how hyper the immune system is or isn't. Also consider mold. Last summer when DD was out of her mind, I found mold in the bottom of all our window a/c units and her allergies were thru the roof, which also made her manic.

 

Sorry - I know how hard this is. Hang in there. It's often a ball of string that needs unraveling, not one quick answer. But you'll get to the bottom of it. Don't stop believing that.

 

Hi LLM,

Where are you buying methylfolate in small doses such as the one your daughter is taking? I went to Dr. Lynch's site and can only find it in 800mcg doses. Even breaking down that dose wouldn't get me that small of a dose. Thanks in advance.

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I get the methylfolate from Yasko's holistic health site http://www.holisticheal.com/methylmate-b-nutritional-supplement.html. Someone here pointed out that it contains rosemary, which can lower your seizure threshold. But my DD, who just had an EEG to rule out seizures (due to a bad reaction to cold meds/antihistamines), hasn't been effected by it. I can't recall if Lynch has a liquid or not. We use one drop, which is approx 67 mcg.

Some people like to use the combo of methylfolate plus methylB12 in one pill but as you've said, you can't cut up a pill that small. The liquid has worked well and lasts forever - something like 1400 "one drop" doses - so at every other day, it will probably expire before we use the whole bottle!

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I get the methylfolate from Yasko's holistic health site http://www.holisticheal.com/methylmate-b-nutritional-supplement.html. Someone here pointed out that it contains rosemary, which can lower your seizure threshold. But my DD, who just had an EEG to rule out seizures (due to a bad reaction to cold meds/antihistamines), hasn't been effected by it. I can't recall if Lynch has a liquid or not. We use one drop, which is approx 67 mcg.

Some people like to use the combo of methylfolate plus methylB12 in one pill but as you've said, you can't cut up a pill that small. The liquid has worked well and lasts forever - something like 1400 "one drop" doses - so at every other day, it will probably expire before we use the whole bottle!

 

Awesome, thanks. I Know I'm pushing my luck here - and your patience! - but I looked on both Yasko and Lynch's sites for methyl b12 at 1000 mgs and couldn't find that either. Is its mcgs or mgs? Thanks again!

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I could have written your post 2 years ago. My daughter is better now but we still have days every now and then when she regresses to those rages. Relax about school, it is going to have to take a back seat to your daughter's health. I know that goes against everything in your Motherly instinct. If she misses school then she just misses school. Truth is she probably isn't comprehending much right now anyway. Only a PANS parent understands the torment you all are going through right now. This is going to get better, but it may take some time. Sounds like your daughter has had some infectious issues for a while. My daughter was the same way. I struggled so hard with the same issue as you about the medication. It is a very personal decision. Eventually, I gave in a we put my daughter on lamictal which is a mood stabilizer. It has helped with the rages. We still have not used an SSRI although I have not ruled that out for the future. I did not regret the mood stabilizer as it just calmed things down a bit and allowed us some breathing room while we waited on the treatment to start working. There is certainly no shame in making that decision. I understand how you worry about not knowing the difference between medication side effects and the illness. That was why our practitioner chose lamictal. Very low incidence of those kinds of reactions. In the case of your daugher you may ask about something other than an SSRI. Sometimes mood stabilizers work better for kids who tend to rage.

 

My other suggestion is to find a good LLMD. You mentioned before that you had seen one in the past that wasn't very helpful. You need to find another one. A good LLMD will be able to find the right combination of antibiotics for your daughter. It wasn't until we started using combo antibiotics that my daughter really started to improve. We saw mild improvement with biaxin but the real improvement came by combining antibiotics. Hope things get better for your daughter soon. I know how devestating this is to a family.

 

Dedee

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Thanks very much for the info! I read and really enjoyed your article 'Holy Mthfr' - It was so well written I might even be on the verge of starting to understand some of this stuff...

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Thank you! I'm leaving the health food store right. Ow with natural factors methylcobalamin! Hopeful!

My DD (Lyme& co, PANDAS, MycoP)has one copy of 677T and I had her on 5 MCG of MTHF, her OCD started to come back, compulsions and rages. Bad ones. After reading LLM post I switched it to every other day, and less than 1 MG as best I can approximate. All that stuff went away almost overnight. kid back. Sorry you are going through this. I would definitely recommend trying to take out the methhlyfolate. If Lyme is possibly in the picture, i would try Burbur 5 drops in water up to 4x per day (can order from Nutramedix) I find it helps a lot with rages. I give DD 5 drops per day on a preventative basis and if I see her upset I give Burbur or both Burbur and Parsley (also nutramedix). This seems to work really well. Good luck

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Hi - While I agree with nicklemama that the slow/dawdling stuff could well be OCD kicking in, we get that a lot with our dd (and a general slowness/motivation issue in extended family members) and for her it isn't OCD but, just that, a seeming loss in motivation and drive at a really low level.

 

Low levels of dopamine can cause both this and aggression and would appear to be part of the issue for our dd as she comes back low for dopamine, serotonin and norepinephrine.

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