momslove

Hard to also figure out when to fit some of these things in the day. We give DD various antibiotics that need to be spaced out and away from probiotics. Have been told that some of the detox options (e.g., charcoal and clay, maybe the "binders"?) need to be taken away from "meds" and probiotics. That sometimes seems like it only leaves us with the middle of the night... Do other detox supports need to be taken or done away from meds and probiotics? One additional comment--Haven't offered vinegar to DD, but think it would be easier to get her to try that than the glutathione paste we ordered at the recommendation of our lyme practitioner.

Is detox also supported by charcoal or activated charcoal? Apple cidar vinegar? Glutathione? Or are those for some other purpose?

But the NYT article about autoimmune firestorm uses the word "CURE" when they mention this facility... That's what I want!

Called a major medical center about scheduling an appointment with a doctor. Was told they "don't support a PANDAS diagnosis, but will treat the symptoms". I tried to ask if that meant they did not see that infection could be related to the symptoms. She basically repeated what she was told to tell patients who call with that diagnosis. What does that really mean? (I was calling to see a doctor mentioned in the fire storm article that was just recently posted on this forum so I know the doctor looks at AE. Is it a potato-putahto thing?)

I thought when people talked about detox, they were talking about helping the body to flush out dead bacteria or viruses. Now I'm not sure what all is intended in detox. Is the intent and reality that it is to flush out "die off" (dead bacteria and viruses) and/or medications taken? What are the primary methods? Clay? Epsom salt baths? ???? Thanks.

I'm wondering if anyone here has had cytochrome P450 testing and how the results helped you/your child. As I've been reading about CBD oil, checking for potential problems, I've read that it uses these particular enzymes from or in the liver (CYP450 or P450). Seems there could be drug interactions with other drugs or supplements that use these same enzymes. The effectiveness of the drugs/supplements could be altered. When I check for general drug interactions and look at the professional information, I also see mention of CYP450--for many of the meds my DD is taking or has taken. Then I remembered an article I read and saved when we sat in the Mayo Clinic for CBT a year ago. I pulled it out and sure enough... A man was found to be a poor metabolizer of medications so they built up and became toxic. This was found by testing his CYP450. His history was 16 years of struggle with OCD, depression, anxiety, fatigue, tremors, abnormal thyroid function...all following a simple strep infection. When I read more about CYP450 testing, it seems it is used when people respond poorly to SSRIs. Hmmm. DD has been on 3 different ones now. Any thoughts on this?

So tonight DD is stressing. The special education teacher told her that starting tomorrow she needs to check in with her each morning to let her know what she plans to accomplish that day and what she did the previous day and where she will be during the class periods. DD says, "So I'm supposed to tell her every morning how sucky I'm doing because I can't do work all day and I won't earn credits... Then I'm supposed to go to my first class..." I totally get how this is NOT a good plan for her at this time. I also totally get how the school needs to know where she is. I told her I am on her side on this and what she is doing to "do" 3 classes and rest inbetween is AWESOME. She said I will look like a helicopter parent. I told her I don't care. My vision of the checking in at this point in her recovery was to begin to build a relationship and to keep track of her location. I guess I have some work to do tomorrow...

Anyone else out there currently or recently using CBD?

Nancy and llm, Thank you both so much for your thoughtful responses! I will check out the Gail Adams book and revisit the IEP goals with the supportive IEP team. I realize too that the special education teacher involved has not heard many of the horrible and personal details of the impact of this on DD. I sometimes forget that others can't simply know and appreciate how devastating it can be, especially when they don't see it in her because she holds it together (which in itself is an improvement). She is doing more social things now too. This can make some people think that if she can do that then she should be able to do all of school, but we have learned otherwise. The social is hugely important AND still difficult. I appreciate the encouragement to also think about what might be missing in DD's treatment. When I say she has been fighting this since 4th grade, I mean that was when "it happened". It was 2 years later before a mental health provider diagnosed PANDAS. His approach was SSRI and antibiotic with positive throat cultures. Improvement was made, but seriously not enough. It was another 2 years (of searching) before we connected with Dr. T who has aggressively (in my opinion) evaluated for triggers and treated (found 2 kinds of strep, mycoplasma pneumonia, lyme, low vit D, declining immunoglobulins). He also referred us to an endocrinologist as other problems became apparent. Improvements were clearly made over time, but again, still struggling. This past summer, we connected with a nurse practitioner who specializes in lyme/co-infections and began utilizing her expertise as well (further attention to lyme and bartonella). Treatment over time has included allergy sublingual drops, dietary changes or attempts, SSRIs, antibiotics, antifungals, probiotics, vitamin D3, fish oil, levothyroxine, T & A, IVIG, CBT/ERP. MTHFR testing was negative. It appears there may be other problems with methylation, but I don't really understand all of that. We have a prescription for anti-viral now too, but have not used it yet. Early on this journey, DD said to me as we headed off to an allergy clinic, "I kinda hope I have allergies, but what if it's not allergies?". I told her I had a lot of ideas of what else to do, but we were going to check this out first. I really didn't have ideas at the time, but she needed to have hope. That's the mindset I keep trying to hold. This group helps me generate other ideas. Thanks again, so much.

I need to think about this with my "forum friends". Sorry if this is lengthy... Our DD has been battling PANDAS/PANS since 4th grade. She is now in 11th grade (although credit deficient). Our school has been very supportive and accommodating. I have no complaints. Last year, DD basically stopped attending school in the middle of October. She was set up with some online classes which she worked on when she could, earning 2 credits. We had been utilizing a basic "health care plan" until the end of last year when we went to a special education evaluation. She now has an IEP under the Other Health Impairment category. This year she has started attending school again. In fact, she got to school on time every day for the past 10 days straight!!!!! Nine of those days she stayed in the building the whole day!!!! Her schedule is such that she is "in" 3 regular classes and then is assigned to various locations for periods to work on her online classes or to have study time. In these past 10 days, she has attended her 3 regular classes each day and is participating!!! During the other times, she has found her way to the office or one particular classroom where she has rested/slept and decompressed (helping the teacher or doing art work). These are not her assigned locations, but have been allowed because this was her previous plan for when she couldn't be in a class. Now there is discussion about holding her more accountable and expecting more work towards credits from her. I'm still in the mode of "Holly Cow! You are doing awesome!". I don't think she can do more work right now. I think being in school the whole day is hugely beneficial to her even if it is not clearly academic. The day she went home early, I asked her if she wasn't feeling good and she said, "I never feel good." I know she is pushing herself. The school nurse rallied to say this is no different from other medical conditions where the school would allow a student to "rest" during the day. All team members are in agreement that we must not push too hard or DD may give up. Then when the school nurse was talking to me again about therapy for the OCD, getting more expert information for the school regarding the OCD, and making sure DD had the "tools" to deal with her OCD, I realized I was bothered by this. We have done therapy over the years. The best experience was intensive ERP/CBT at the Mayo Clinic. We learned a lot. Locally, that kind of therapy is not available--at least not that I have found so far. I believe in the benefits of quality therapy. What hit me today though was this--I feel like school staff think that the crashes won't happen if DD has all the correct "tools"and that if crashes happen it is because she doesn't have the "tools". I have heard "She's going to have to learn how to deal with this." I think she deals with it better than many other people would... She (and DH and I) would all probably continue to benefit from quality OCD therapy if it was readily available, but it is not. The nurse asked if there was an OCD expert we could request assistance from for the school. I think the school has done a great job. I was thinking then about Dr. T's fever explanation. Maybe there is a way to help create understanding by talking about how a person can't cognitively stop a fever from happening any more than they can use CBT tools to stop a flare from happening. Am I way off base? Do you know of any literature that addresses returning to school--successfully?

As I read through past posts, I see members have tried CBD from RSHO, Bluebird Botanicals, Cibdex, Hempmedspx, and private sources. I see the Bluebird Botanicals has 4 varieties... It's hard to sort it all out. One of our doctors says go ahead and try it, but did not direct specifics. Can any of you tell me what you are currently using as your source of CBD, what "kind" you are using, how you are administering it, how you are starting with the dose, and how it is impacting your child? THANK YOU FOR YOUR SHARING!

Are there any known specific contraindications for the use of CBD with our PANDAS/PANS children --illnesses, conditions, use of other medications/supplements...? The only thing I have found so far is that other meds that are processed through the liver with the same enzymes (P450?) may be affected.

So we ended up deciding to increase the fluvoxamine a bit and hold off on the buspar for now. Still looking toward appointment with PANDAS doc later this week. DD actually got to school all day today after missing all of last week! (She is on a limited schedule as per her IEP.) I suspect that she was able to get there for a few reasons--recovering from a flare related to a "cold", desire for the social, desire for recovery, desire for normalcy,...) Wondering about antivirals. How would you know if that is what is needed? I read back through the testing we had done through Courtagen Labs and didn't find anything like the genes I see mentioned in the methylation readings. Maybe they don't test that or maybe no problems were found with those? Thanks again for the support/information!

Thank you for your responses. I will read the recommended posts/links--maybe I already have. DD was negative for the MTHFR mutations. Would methylation still be a concern? [i don't mean to be inappropriate, but am I the only one who "reads" MTHFR in my head as what the letters look like? I haven't even tried to learn/remember what the letters really stand for. It just is a silent vent or release for me to "read" it that way.] I don't know yet what we will do. Picked up the buspar today. The clerk told the pharmacist I had some questions. He came over, never asked what my questions were. Started telling me the med was for "the head". Asked if DD was down in the dumps. Asked if she lost a boyfriend or something! I left without asking my questions. AAHHH! Have a different appointment this week with our PANDAS doc who often orders bloodwork so may have a new target. We shall see. Again, thank you all for sharing your thoughts and experiences.

Yesterday, one of our providers recommended adding Buspar to augment the Fluvoxamine which she also wants to increase. DD is still significantly impaired by her ocd and anxiety and sadness. Also taking antibiotics and antifungals. As I read and stress about the risks with the buspar & added SSRI, DH's reaction is thinking we should just stop it all and see what happens. I can't deny that I think about that option too. Have any of you just stopped the meds? (I know that the SSRI must be tapered.)

DD is on antibiotics and now shows signs of catching something I have--something I experience as plugged up ears and sinus congestion and fatigue--no big deal for me... She reports a "gunky throat", increased anxiety, increased tactile sensitivity, and then sadness... Was trying to get back to school this year... Is it possible to sample sinuses and culture to see what it is so treatment can be targeted? I know they check for pertussis this way, but not sure if they must test for specific things or just let it grow and see what it is... I know we could check the throat for strep, but I want to know which "cold" bug this is. She is currently on ceftin and rifampin. Maybe it's a virus and she could benefit from some anti-viral???

t_anna, there have been a number of times that I have read your posts and really related to them. Today is no exception. Our dd, age 16, has been making some improvements over the summer and got to school all day on the first day of school! Day 2 she was different from the moment I woke her. She was "freaking out" and curled up on the floor in her closet, wrapped in a blanket, talking VERY fast and quietly, angry when I can't hear/understand her... She slept most of the day--acknowledging that this was partly fatigue and partly avoidance. Our mental health provider recommended ativan. We haven't been able to get it yet. Today, day 3 of this school year, she woke much calmer. She told me she knew she could get to school today, but just not right away. She made in in by 9:45 for 3rd period. Then today she got her period, which could be another factor... Told her another fresh start tomorrow! Still don't have the ativan. Curious to see what advice others give. Are you still using CBD oil? Does this help with the panic type of episodes? I finally convinced her to soak with epsom salts, but I think I made it too hot. She said she felt worse afterwards--anxious, heart raising, and increased tactile sensitivity...

At one point in our house, DD was very angry and struggling with her OCD. As I spoke to her about the OCD making her feel that way, she hollered at me that she didn't have OCD, that she was just obssessively compulsive, and that was just who she was. I explained to her that when being obsessively compulsive totally disrupts her life and affects those around her, it is a disorder. When friends who know about DD make those casual comments about being OCD themselves, I smile and say something like "you say that so casually" and hold my smiling gaze until they realize what they just said to me. I have also pointed out that unless it is disrupting their lives, they don't have the "D" part of OCD.

Thank you all for responding. Heard from our nurse practitioner's office today. They recommended taking activated charcoal and call if symptoms change for the worse. The nurse practitioner will call next week when she is in the office. DD is taking a number of meds that could be toxic to the liver according to my online reading. She takes rifampin, biaxin, nystatin, diflucan, levothyroxine, fluvoxamine, melatonin, vitamin D, fish oil, and probiotics. I did not give her antibiotics and antifungals last night (2nd doses) because I was feeling so distressed about it. When she asked why, I did tell her that her labs showed her liver was getting a little stressed with all the meds. I told her this, in part, because I was trying to convince her to take a spoonful of the lipid glutathione that was recommended, but smells SO bad. She refused. Today she told me that she is more anxious and ocd so I shouldn't stop giving her the meds like I did last night... I can't link it to just my change in her meds though because she also told me that textures are bothering her more again for the past couple of days... I did read a bit about nac and milk thistle and the liver. It gets so complicated. I have to find her old allergy test results as I read that those with allergy to ragweed maybe should not take milk thistle. I really do appreciate the information, suggestions, and questions from you all! Thanks again.

DD is showing improvements (overcoming some OCD behaviors and doing some online school work), but liver enzymes are elevated. Could it be (wishing) that the antibiotics and antifungals have done their job and she just needs time to learn to be "normal"? I want to give her a break from the meds, but don't want to interfere with necessary treatment. I also don't want to do harm by continuing meds that might be damaging her liver... Have gotten no reply yet from the provider...

Just saw lab results for DD. Her SGPT went from 42 in June to 99 in July (standard range is 6-31). Her SGOT went from 27 to 49 (standard range is 13-35). Liver seems clearly stressed. From what I read, could be related to infection or an autoimmune response which are not out of the question given her history, but most likely explanation is the meds... Just called and left a message for the provider who prescribed the most recent changes. She is on vacation until Aug 12th, but messages will be checked. We are talking about going to local clinic, but not sure... With the first increase on the SGPT in June the provider was not worried and told us to stay the course. What would you do? Do some of you do something to help the liver? Thanks.

Teamtyrion--When DD suffered another relapse, she had "issues" with so many things... One difficulty she had was plastic--she could not eat or be near anything that she thought had touched plastic. The bottle of drops was glass, but the pump was plastic. Also, she had great difficulty with anything she considered chemical and this included her drops. We went to a place in LaCrosse WI which, I think, developed the "LaCrosse Method" of sublingual immunotherapy. They were very good, but the last time we went, we saw the wrong guy... Unfortunately got into discussion about reality of PANDAS... That doctor is no longer there. We would not rule out going there again, but right now treating Lyme and Bart and strep. Also doing our best with diet change... I think Doris Rapp is an interesting read--"Is This Your Child?". This is what led us to treat allergy before we even knew about PANDAS.

Having no particular expertise to offer, I write to say my thoughts and prayers are with you. I hope you can draw encouragement from knowing about the infections and genetics. Others on this forum have much greater knowledge than I do about all of this and will offer information and support, I'm sure.

I don't pretend to really understand how it all works, but I can tell you that the best year (dare I say "normal") we had since this all started with our DD was the year we altered her diet to eliminate/reduce corn AND treated her allergy with sublingual drops daily. Her drops were targeting a variety of common environmental allergens as well, based upon mild reactions in testing. Additionally, she would call me from school some days if she felt increased anxiety. I would bring in her drops and she would feel better. The allergy clinic we used was not covered by our insurance (for ANY medical purpose) because they treated with sublingual drops routinely. People came from far and wide for this type of treatment, but the "establishment" does not support this approach. I can't tell you if this could have been the end of PANDAS/PANS for DD because, in her "normalcy" we dropped the ball and slowly went back to "normal" eating and stopped the drops. When illness returned, she was unable to use the drops. We were off on other paths for recovery... and still searching, but back to diet changes and things are looking up.

What were the symptoms you blamed on braces and sport injuries? Interesting--our DS is planning to pursue an engineering degree.