FallingApart

We are at the ER for a psych admit. What are the correct things to say so that we get appropriate treatment for DD. Our hospital does not believe in pandas. DD wants to kill herself and us multiple times a day. She is ripping her hair out and biting herself in rages. She has told me she wants to start cutting.

I know this is a super old thread. But what have we learned in the process. If a urine test comes back with extremely high neurotransmitters across the board, dopamine being the most elevated, do we stay clear of supplements that increase them? We have given DD phosphatidylserine many times in the past and haven't seen adverse effects. But the supplements recommended based on her urine results have PS as a main ingredient. I saw a few people say their child never gets tired. Mine is always out of energy. Are urine tests reliable? What's the most reliable and accurate way to test? Thanks!

Thank you.

Hello, Dd is 10 and I got my period at 11. Given that anxiety is such a big component for many of our kids can you tell me how you described the logistics of this? Do girls start out with pads or go straight to tampons? A tampon will freak her out but so will the sight of a used pad. Looking for any advice from those who have gone before me. Tia.

I am about to start a protocol for trauma for my PANDAS DD. It is all homeopathic. She has been on a few different remedies these past few months but she isn't taking anything daily. Homeopathy is not a general approach. Meaning your child and mine could present with the exact same symptoms but need different remedies. I am certified through the Caduceus Institute. Given how LITTLE - read nothing- I knew about homeopathy when it was first introduced to us, I still haven't found the "Homeopathy 101 in terms most people can understand." Being treated by a homeopath repeatedly and asking questions of them and then school are how I learned it. And then just seeing the results. It's shocking. Again, I'm not saying it is the road for everyone. That is just my honest answer to your question.

IVIG did help her, but it was never sustainable. The reason was because our other daughter is a silent strep carrier and it took us years to figure it out. That was the reason that PEX failed so miserably for us. That is why anytime anyone mentions PEX here I try and chime in to make sure they aren't bringing their child home to a house with a strep carrier. Our insurance company is who required us to see an ND. I had never been to one before and she was able to have the same effects for our daughter as IVIG. But again, they didn't last. Given that no one was able to get us lasting results I decided to learn homeopathy myself (I wanted to become and ND, but that is a 5 year full time program...) so that I could help my daughter. We are now treating the carrier child solely with homeopathy and I fully believe it will do what antibiotics could not do. This is just our family. I truly believe that whatever works in this frightening and maddening situation is what should be done for your child. Our ped claims that most of her PANDAS families are 1-2 rounds of abx and they are cured. If that option was available to me and produced results, that is what I would do. Remission is really hard for me to answer. I think that she has been hurt emotionally through all of this and so she still exhibits rages. But her body really and truly is healthy. I think that at this point the rages are a part of her and a learned response. My husband and I need to help her with this. When that is acheived I will feel like I can use the word remission. But from a physically healthy standpoint, she is healthy. And that has never, ever happened on this journey. Hope that helps some.

Oh, yes there is a blog. The site is new and so I only have 2/3 of our story up there. You can get to the blog here http://www.holistichealthadvisors.com/blog And the main site is just holistichealthadvisors.com I used to blog much more privately. Since this site is so public and now my dd is older the story doesn't have all the gory details. But I'm happy to answer any questions in detail here. Our journey has been long and brutal. But currently our dd is healthy in her body. I believe she has trauma left over from the severity and duration of her illness. But we have identified that and are working on it. I veneer been able to say before that my dd is healthy!

Hi everyone, Today is Giving Tuesday and I have an offer on my site for everyone. But I especially wanted to let this group know about it. Through our 7+ years PANDAS journey I have now become a health coach and homeopath. Holistic options ended up being the most effective long term for our family. However my coaching is more about getting results for your family. Our family have tried almost every option available, including ivig and PEX. If I can help save some anxiety for your family and be a resource for you I would love to help. And today us the day to investigate if this is right for your family. Take a look here: http://bit.ly/1NFOMwh Have a great day!

Hi there, Has anyone hired help for your home/running of your life/ making things go smoother during all of this? This kind of sounds like a stupid question but I'm serious. We have no family within 2000 miles and I have no ability to ask for help. I can pay someone, but can't just ask someone to help me out no strings attached. I feel incredibly guilty considering this. I'm also not talking about a cleaner, I mean help. We have 3 kids and a mom who is exhausted to say the least. I need an extra mom. Has anyone done this? If so, what do you have them do? Indeed to get stronger in every way to be there for the long haul. But having someone help with my baby just feels so foreign. This seems to be a ramble, but does anyone get it and have any advice? Thanks!

Hello, Has anyone done these as injections? These are the remedies from Sanum that come in glass vials where you break off the tip. We were introduced to them with the sipping method; that did nothing. Our current ND did an injection of them and is allowing us to do 1/week at home. I'm excited to try them and am not concerned about doing so. I'm just wondering if anyone here has done this and if you saw beneficial results. Thanks so much!

Thank you for this idea. Our DD has had paradoxical reactions to meds as well. Like you with certain meds, she either had no reaction or not enough time on xanax but right now our ped (who prescribed the xanax) won't re-prescribe it - even for just a weekend! it's soooo frustrating. I don't want to do any of these meds but I want my daughter to be happy!!!! emst - did look in to abilify and liked what i saw. I was just a bit nervous given that she has had paradoxical reactions in the past to certain meds. i have no preference of one drug over the other - just one that might help her!!

Hello, First, let me make it clear that I don't WANT to use psych meds for my daughter. However, the longer this goes on I feel that her behaviors can only become more ingrained. I've recently become aware of a relatively new (already a negative for this drug) psych drug that has been described as helping with anger/rage. It's called Viibryd. There are a lot of negative reviews on the drug in general but I have seen several people tout its benefit re:rage. I don't even know if it is approved for pediatric use but wanted to know if anyone else has heard of it, used it or considered it.

thanks for the answers all! The bloat has been studied for YEARS! Nothing has ever shown positive - except for an xray of constipation at 4 years old (almost 10 now). Subsequent docs have ruled it out as not chronic because of the feeling of the abdomen and her bowel habits. We are going to see our ND this Thursday, thank God. DD is beside herself and it is NOT helping with the anxious rages... We've tested/treated for yeast. She has muscle tested as NOT having a gluten intolerance although we do as little gluten as possible. All of this said, I'm not still sure that she doesn't have any or all of the issues mentioned. The belly now has cellulite on it - thankfully DD doesn't know what that is. But at almost 10 this is becoming an issue. We've talked about body image in a very positive way - but let's face it - if you are a woman, you get it. I've asked her for another month of patience (her version of patience would earn any of us a spot in heaven) while we try targeting some minerals that could be causing this because of a deficiency - namely zinc. But given how hard she worked this summer- and the actual change I've seen in her body everywhere else - I'm not hopeful. As for IBS - if you have thoughts on this based on what I've just described, PLEASE share. I believe that I have IBS-C.

Hello, Most of our children have some form of anxiety. Who has a child with EXTREME debilitating anxiety? Do you have something that has worked to lower the anxiety to survivable levels? Our DD is always horribly, paralyzingly anxious but then there are times where it gets even worse. Start of school, Christmas, birthday parties, etc. We've been doing this for a LONG time so of course I know the general supplements that help with anxiety. But what forms, doses, combinations have you taken that have had a lasting impact? On another note:bloated belly. DD has always been a fine size. She's never been super skinny but recently (at least 6 months) her belly has really expanded. Her belly is like a beer belly and has cellulite on it. We've seen this before but DD was too young to notice. Now she is almost 10 and has noticed that her belly isn't like her sister or the other girls. She is devastated by this. We've spent the summer exercising and eating protein. She has a major sugar craving and will sneak sugar whenever possible. But she has learned that isn't a good idea and hasn't been sneaking sugar as much. Her hard work from the summer helped her arms, legs and face have thinned out but her belly didn't change or got bigger. She has been tested for celiac, diabetes and food allergies/intolerances. Anyone dealt with this or made progress with it? The bloated belly is playing in to her overall feeling of anxiety and despondency. TIA.

Thank you so much for your validating comment. I feel like a weirdo. I had to ask my girls if they thought I could handle the Minions movie. It's not just a given anymore...

Am I the only parent in America who pretty much cried throughout the entire movie Inside Out? I just felt like I was watching the inside of my poor PANDAS head and brain. I sat next to her during the movie and tried not to cry. She completely freaked out each time she noticed me sobbing. The trailer for that movie should have stated PG-not intended for PANDAS parents. If you loved the movie, I'm really not trying to start any kind of a debate here. I was just so excited to see it with my girls and was blown away that I pretty much sobbed throughout the entire movie. Actually, I would be happy if I was the only one who was saddened during the movie.

I am with you on the PTSD front. No MD (at least one that can help with it) will take me seriously. Sleep is a disaster for me. I can take 2000 mg of magnesium and it does nothing. I am a certified yoga and meditation instructor and I am wide awake. Melatonin only sometimes works for me. The lack of sleep and the inability to sleep make me very angry and I decided to do whatever it took to sleep. I go through periods where I take an RX sleeping pill to fall asleep and an RX pill to stay asleep in the same night and for several weeks in a row. The reduction in stress is worth it for me. Many of us are in this for the long haul so we need to take car e of ourselves. I hope you find something that works for you and that you don't beat yourself up about it, but rather sleep peacefully.

So, I have my own RX of Adderall and gave DD 5mg of instant release in the am and 5 mg in the early PM and she didn't fall asleep even with her melatonin until midnight. I'm guessing the Adderall was the culprit. I gave nothing today and may try 5 mg in the am only tomorrow. Does Vyvanse work the same way?

I have not yet figured this out yet. But I will say the one thing I have learned through this. I am no longer able to relax. I cognitively know what to do to relax-I'm even a certified yoga teacher, but am unsuccessful at it. The only respite I can get is if I pay someone to relax me. I have 2 personal suggestions. Neither solve my problems, but they make the day a bit better. My body is stuck in fight or flight so I belong to massage envy as the most affordable way to get some temporary relief. Organization skills are not my strongest skill and dds rages further destroy the house so we have cleaners whenever we can stretch the budget. I would rather not eat and have a peaceful living room because it does more for my sanity. I highly suggest finding even one thing that can even slightly help and focusing on it. Forgo something else to afford it. And don't forget yourself either because both parents need to be in as good shape as possible.

oh - Atarax - we have used this. tj21 what dose did you use? Benadryl is helpful for us so perhaps we should give this one another try. Only problem with Benadryl is that we can only give a full dose at bedtime. Ok, I just looked up pseudoephedrine and see that it can help some people with anxiety. I believe the anxiety is what causes the rages. Adderall is also mentioned several times with the pseudoephedrine. Has anyone ever tried that? What dosage would/do you use? DD weighs almost 90lbs- so pretty close to an adult. I can't tell you how much I appreciate this discussion. I hope it is also helping others.

bad reaction was really nothing - I just couldn't sleep. no matter how many sleeping pills I took or how much magnesium I took. I was awake for 2 days. Sleep is something I have huge anxiety over since dd didn't sleep for 2 years. I probably would have gotten used to it but I didn't even give it a chance with a second dose... I don't know what Atarax nor pseudoephedrine. I will definitely be looking these up. DD is a bit chubby and is becoming aware of it so the potential weight gain from Abilify is terrifying to DH and I. We are only giving her 1mg right now and we did skip a day. I read somewhere that someone said it could help instantly - we gave it situationally today and I think it did actually help. Still, I really don't want to use it if there is another alternative.

I guess each route truly is different for each child. We tried the trileptal and just didn't see any change - neither good nor bad. tj21, what success did you see for that first year? We are seeing a new LLND next week so I am hoping to use this very short term or else with even more guidance. But stories are so helpful. thank you all!

Thanks ladies! emst, what does is your child on? Have you seen any side effects? How long did it take before you noticed any changes? I myself tried Lamictal and had a terrible reaction so am averse to go that way. I have also tried Abilify myself (not sure why I went off it) and recall having positive effects without bad side effects.

Hello, Has anyone tried Abilify for rages? I've just spent the day reading about its use in autistic children and rages. The only thing I am unsure of is whether it would be beneficial to dd or not since she has 2 COMT mutations and 1 CBS mutation. It looks like if it works, it works and there isn't a lot of in between. I'm interested in any real life stories.

Hi guys, Where is the best place to go to figure out information for the individual mutations? It appears that we do not have MTHFR, which I guess is good. But both DD and I have ++ Comt V158M (AA) which is the one that covers mood, executive function, behavior, rage, schizophrenia, etc. I have found loads of info explaining the mutation in the gene but nothing about what can be done to support it. Surely this info exists....?