searching_for_help

jenniferg - compound hetero is when you are hetero for both the MTHFR C677T and MTHFR A1298C. Concerning the zinc conversation: Just throwing this out to muck things up, , but my dd has all the signs of being low in zinc, but is actually high. She is very low in copper. She is also anorexic, so you would think the opposite. Basically, I'm just saying not to ASSUME that your child is low in zinc without actually testing. I know everyone is worried about zinc deficiency, and rightly so, but the Great Plains Lab talks about copper and Vitamin C being necessary for dopamine being converted to norepinephrine and epinephrine. Our dd is very high in dopamine, low in norepinephrine. Not a good combination. I know many of our kids are too high in dopamine. Deficiences of these cofactors (copper and Vit. C) can also be caused by Clostridia byproducts. The tricky part is how to keep zinc/copper in balance, without having to spend more money on testing.

Awesome! So happy for you, and it gives the rest of us much hope.

Yes, there are some using this with success. Do a search, although that thread was written on recently, so it should show up under "View New Content".

Just curious... For those treating gut issues (yeast overgrowth), have you noticed your child's gums being red, or the gum growing over the teeth? I'm just curious... my son has had very red gums for a long while, and the gum between his top 2 teeth is growing way down between his teeth. The dentist always says to brush his teeth and gums more, but he always brushes his teeth twice a day, and does a good job. I'm thinking there is more to it than the dentist is aware of. Hoping to get a stool test to check his gut issues, but I've always felt he probably has some yeast issues, and wondered if the two could be connected. Any thoughts?

sss - yes, she's been treated for h. pylori and is currently taking Doxy for mycoP. (Also on an antiviral.) She's been on 400 mg. a day of Doxy for the last 30 days. Not seeing any improvement with the anxiety or intrusive thoughts. nickelmama- you mentioned your son has the neuro and you have the arthritic. I've had weird pains in my neck, shoulder, back and knee - sometimes it seemed like it was cycling from place to place. I've often had pain in the back of my neck and it's crackly sounding. I've often wondered if it's Lyme, but have been to busy with my kids health problems to have myself checked yet. Think I will now. Also, I have Horowitz's book - I'll have to actually get it read! philamom - Before the kids were born, I had a swollen lymph node under my arm, and doc noticed a cat scratch on my arm. I requested dd to be tested for Bartonella, and it was negative. (Igenex, I'm pretty sure.) I'm wondering if we might need to have that test redone. putting together the piece - Fortunately, our NP is very interested in Lyme treatment and has been learning all she can. She didn't rule Lyme out after we got the results, but started treating some of the other issues first. I think now, it's time to start thinking more serious about the Lyme aspect. Thank you all so much for your responses. I could not survive without this forum.

Is it possible dd could have Lyme WITHOUT any physical symptoms? Her symptoms are intrusive thoughts, OCD, anorexia nervosa, extreme anxiety. Tests show immune system not good (very low NK cells - CD57 and complement 3) Titers high for past mycoP, HHV6, also h.pylori and I'm too tired to remember the rest. Oh yeah. Gut issues as well. This definitely started with strep, but her IGG titers aren't all that high anymore, although her Dad just tested positive for strep (NO symptoms), and ds was positive for mycoP with no symptoms. She did NOT respond to IVIG or steroids (twice). But she has really herxed when beginning Doxy and Valacyclovir. Her Igenex IGM results were: IND for 23-25 IND for 39 ++ for 41 IND for 83-93 So, once again - CAN YOU HAVE LYME WITH NO PHYSICAL SYMPTOMS? With no positive response with IVIG or steroids, should we consider something else?

Here's what we purchased: http://www.bluebird-botanicals.com/Cannabidiol__CBD__oil.php

Same story here, MRI didn't show anything. I remember reading later that it wouldn't be of much help, and was rather ticked they didn't order something that would be helpful. I'm wondering about PET or SPECT. Anyone have one of those done?

I'm very excited to see some having progress with this. We tried it on our dd, she's 22, PANDAS/PANS, extreme anxiety, OCD, intrusive thoughts, eating disorder. It did not work for her. She used it for 2 weeks. It would be interesting to find out why it works for some and not others. That being said, although dd did not benefit, I gave some to our son - only around 2 doses. I don't think I'm crazy (well, that is debatable!), but I thought he seemed to stand straighter and seem more "with it." He has a somewhat awkward gait, leaning forward at the shoulders, head foreword, and often has the masked face look. He was diagnosed with auditory processing disorder as a kid, but Dr. K was around him a bit when daughter had IVIG, and Dr. K commented that son seemed to have PANDAS symptoms. His symptoms are very ASD in nature, as well. We've just had our hands full trying to care for dd - so son has not gotten the same attention concerning medical things. But it was significant enough (with the CBD hemp oil) that I went ahead and ordered a bottle for him. Should get it this week. Price went up on the oil. Husband, as usual is thrilled with the expenses.

Ophelia - we've had similar issues here. Dd's PANDAS started with overnight bladder issues. We took her to a ridiculous number of specialists, but she had no UTI's or other issues. Psych drugs were no help. I totally feel it's completely part of the OCD/PANDAS thing. She's had the bladder thing since she was 9. She's turning 22 today. Thankfully, the bladder frequency isn't nearly as bad anymore, except at night, as she's never been able to sleep well. I'm assuming that it's better due to the abx she's been on. I'm not sure what all your doc has tried, but it seems to be high dopamine that is aggravating the problem (but the high dopamine is caused by some infectious trigger...) Unfortunately, finding the trigger is the hard thing. But it might be worth giving this info to your doc/psychiatrist: This link is from Denmark, talking about PANDAS/PANS. Note they call it "Dopamine (post streptococcal)related autoimmune encephalitis" http://pandasnetwork.org/wp-content/uploads/2013/07/Dopamine-related_autoimmune_encephalitis.pdf This might be good to print out for him, concerning bladder and dopamine: (Link is at end) Enuresis Pathogenesis "The proposed condition PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections) has been used to describe a set of children who have a rapid onset of OCD and/or tic disorders following a streptococcal infection, with a link to other symptoms such as enuresis.[4] A broader classification of this hypothesis, PANS, has been proposed which states that some patients suffer these symptoms in response to mycoplasma or lyme disease or even viruses rather than streptococcal. PANS is an acronym for Pediatric acute-onset neuropsychiatric syndrome. This hypothesis describes children who have abrupt, dramatic onset of obsessive-compulsive disorder (OCD) or anorexia nervosa coincident with the presence of two or more neuropsychiatric symptoms. It is believed that these children experience a rise in dopamine levels as a result of a of cross-reactive anti-neuronal antibodies. The rise in dopamine can cause such side effects as enuresis, bed-wetting, and urinary urgency.[5]" http://en.wikipedia.org/wiki/Enuresis You still have to find a doc willing to find and treat infections. With all your health problems, your autoimmune issues seem to be reacting to everything. (Same thing here, we just don't have the exhaustion you feel.) I know you don't tolerate meds well, but maybe your doc/psych can check dopamine levels and if high, try and get those lowered, to give you some temporary relief. That being said, I can't remember what all you've been checked for. Has anyone checked for viral conditions - HHV6, EBV, etc. Has anyone checked your gut - clostridia and yeast overgrowth? Has anyone tested you for H. pylori? I think you said you've been checked for Lyme? Hang in there. I so hope they can find something to give you some relief.

Yes, my almost 22 yr. old dd has PANDAS/PANS with OCD, intrusive thoughts, extreme anxiety, anorexia, exercise anxiety, etc. I know Dr. Jory Goodman has written articles on how adults can have PANDAS. Honestly, I think most all things considered under the psychological field are caused by infections, deficiencies, etc. Dr. Goodman also promotes T & A to help with this. I know that some on here have had good success with that. That being said, our dd had a T & A when she was 20, and we didn't see any noticeable improvement. But like I said, I know some here have seen great improvement, and honestly, it's best to get them out. But, if you continue to have problems, continue looking for the source (often sources) of the problem. My dd is being treated for viral infections, mycoplasma P, yeast/gut issues, clostridia, and finished treatment for h.pylori. Started her back on Augmentin due to concerns over boyfriend possibly spreading strep or something. Guess it would be rude to ask him to be tested for all these things? I think her doc will probably look into Lyme more closely, I know her results are consistent with many on here being treated for Lyme. Also want you to know she doesn't have the physical symptoms of these illnesses. Only the mental. Hang in there and don't give up finding an answer. We spent years with docs and psychiatrists and therapists, and no one had a clue. It wasn't until I searched for an integrative type doc (actually, she's a nurse practitioner), that we were able to find someone willing to test and try things. I'm sure more parents will get on and share their experiences.

Since I'm not very savvy on how to do things, is there a way to move CJsmom and Bradsmoms post to a different thread? I think more people would see their posts and offer advice if it were separate from the Stanford article. Bradsmom and cjsmom - would you please post the things your son's have been tested for, such as bacteria, viruses, yeast, H.pylori, clostridia, deficiencies, etc.? We might be able to be of more help if we know what's already been ruled out. And please tell your sons to hang in there. This is not their fault, and I know they suffer horribly. Our daughter has had 10 horrible years, but she is finally starting to improve some, not due to therapy or psych drugs, but due to treating her mulitiple physical issues. (Yeah, with immune dysfunction you can get LOTS of issues...) We personally are dealing with viruses (she's on an antiviral), mycoplasma (she's on Doxy), results showing immune system dysfunction, treating clostridia, yeast, and just finished treating H. Pylori. (This all started with strep...) Also, it looks likely that we might be treating for Lyme, but we'll see where she is after all this treatment she's currently on. IVIG did not help our dd, although has been helpful for many on here. Don't give up, the parents on here are amazing, and can help guide you. You just need a doc willing to try some things.

I'm sorry I don't have time right now to read your story carefully, but wanted to mention my dd is on Doxy and Valacyclorir (antiviral), and she also has the sunburned look on her hands, and also her nose (She looks like Rudolph...) My hubby is a pharmacist and says it is probably from the Doxy - some people (not everyone) can have a reaction when in the sun. Her hands get itchy and also sometimes feel like they are burning from the inside. Also weird sensations like cold drops of water hitting them. This occurred after she started the Doxy, and is beginning to subside some. Also, my dd has the bright red butterfly (malar) rash across her nose, but she's had that off and on for years, BEFORE the Doxy. It's very smooth, no raised bumps of anything - it just looks very hot and red. We've mentioned Lupus to docs before, but they don't seem to be concerned about that. Not sure why, they know her immune system is screwed up. I so hope someone on here can give you some ideas to give you all some relief.

So very sorry. I know your fears so very well. I'm hoping your doc will be willing to try some things - after years and years we've finally found someone willing to just TRY something new! Please don't forget to use probiotics, and I can't remember all your last posts, but if abx don't work, you might want to have doc test her gut for yeast overgrowth or clostridia. They can cause similar behavioral issues. So many things can set our kids off. Don't assume the antibiotics screwed up her gut - it might have gotten screwed up before by other OTC meds or the foods that we eat now, that are lacking in the good gut bugs. So make sure you either do a stool sample or OATS test. (If you haven't already.) I also found that Helicobacter Pylori can cause neuropsych problems (your doc will probably NOT know this, but I'll be happy to send you some case study links), and our dd tested positive for past infection on that as well. It can cause nutrient deficiencies, thus affecting neurotransmitters, B12, etc. That being said, don't forget to test rest of family. I was shocked to recently learn my son has a CURRENT mycoP infection, with no symptoms AT ALL, and my husband just got results back yesterday and his ASO was POSITIVE. NO SYMPTOMS AT ALL. Ugh... Don't know if this has been affecting PANDAS/PANS dd or not...

Overnight urinary frequency and some incontinence was our first big flag. Sadly, the multitude of docs didn't know anything about PANDAS/PANS, so they just ran tests to assure nothing physical was going on. She was 9 when it started. Layered in over the years since then: extreme anxiety, OCD, intrusive thoughts, eating disorder with exercise compulsion, etc. DON'T WAIT to get this under control. Find a doc who's willing to treat for PANDAS/PANS. Our dd is turning 22 soon, and this has not been a picnic. I don't want anyone else to EVER have to go through this. I just wish I knew back when she was 9 what the urinary thing was about, and maybe we could have avoided this nightmare. The best of luck to you and your family. It's so good that you are aware, and don't let any doc make you think it's all in her head and that therapy will help without treatment. I insisted over and over that the urinary thing might be connected to the other problems, but none of the docs/therapists/ED clinics, etc. would listen to me.

Just a thought. You might want to check for viral infections - EBV, HHV6, etc. (Maybe other moms will chime in on what to test for...) My dd just started Valacyclovir a few days ago and she is really herxing from it. Flu-like symptoms, migraines, strange body sensations (burning nose, fingers- then the feeling that cold drops of water are falling on them!) She's even running a low grade temp, and her temp is always very low. Doc only gave her the script because I requested out of desperation. The only viruses she has been tested for are EBV and HHV6. She did not have a current (IGM) infection for either, but that antiviral is hitting something. She's also been on Doxy for mycoP and Nystatin for yeast for several weeks, but hadn't seen any reaction to that. You commented on the attitude of the OCD clinician. Unless someone has a PANS/PANDAS child, I don't think they can FATHOM what anxiety is. I don't think most therapists have a clue, because our kids can hold it together better around others than they do at home. I honestly had no clue (before having a PANDAS/anorexic kid) that it was possible for anyone to feel this overwhelmed and hopeless. And I'm REALLY sick of people trying to convince her and me that she can just talk herself out of it.

Yeah, around here many of the schools give "Perfect attendance" awards. DUMBEST. THING. EVER. I've heard 2 parents comment that their kids were puking in the night, but didn't want to miss out on their "perfect attendance" and went to school anyway. (And the parents said it like they were PROUD of their kids determination to go!) And we wonder why so many kids get sick at school...

Our Walmart carries the Lifeway kefir. It's great for smoothies - we use the pomegranate flavored kefir with frozen strawberries, banana, a bit of stevia and the ice. It's yummy.

You can get Nystatin prescribed in liquid form to combat the yeast. If you get probiotics and digestives enzymes in capsule form, you can just open them up and mix with applesauce, or some other food. (I would avoid any hot foods...) My son also hates swallowing pills. So I make this "shot" with all kinds of stuff he needs mixed in, and top it off with a bit of pomegranate juice. It's not very good, but when I tell him he would have to take it in pill form, he says he'd rather have the "shot"! (We're not a drinking family, but we joke about it being as bad as whiskey.) Pomegranate juice covers up the taste pretty much - we just like to joke about how bad it is. I mix up liquid lithium drops, vitamin C drops, vitamin D drops, B Complex drops, and we also have cod liver oil, lemon flavor, in liquid form. You could use the drops in just about anything - maybe a smoothie or something. They also make liquid multivitamins, but the brand we tried was really nasty. $45.00 down the tube... You'd be surprised what all is available out there in liquid form. I was even using a mortar and pestle to break up his magnesium pill and mixing it into food. So try and get liquid form, or capsule form that can be mixed into food and see how she does. Another thought, I think there is a powdered form of probiotic made by Ultimate Flora. It's got like 100 billion varied strains. Don't have time to look it up right now, but I'm sure you could find it online. I agree - this forum and the parents on here are awesome! I really don't think I could manage without all of you!

We've homeschooled for years, but never really found any math curriculum I was thrilled with. One thing that interests me is "Teaching Textbooks". It's an online math program that has its own built in tutor. My son has done the demos and likes it. I think any kid that likes being on the computer would like it. The only reason I haven't gone ahead and purchased it is all of these darn doc visits, test and med expenses! Along with the demos are placement tests, so you'll know which grade level to start with. They have online Math 3 through pre-calculus. Here is the link: http://teachingtextbooks.com/ My son's math skills are poor, so we were never able to use the spiraling methods of math, such as Saxon Math. He needs much more repetition.

Has anyone tried Now's Super Colostrum? I picked some up today at the healthfood store. It says it supports Natural Killer Cell Activity (dd has very low CD-57). It has 1 gram Bovine Colostrum, Larch Arabinogalactan (ImmunoEnhancer), Olive Leaf standardized extract, Astragalus root, Eleuthero root. "Colostrum has naturally occurring Immunoglobulins IgG, IgM and IgA, which are important immunological proteins for both animals and humans. In addition, NOW has also included Eleuthero to support a healthy stress response." 90 veg caps for $15.00. (This store is rather high priced - I'm guessing it could be purchased online at a cheaper price.) 2 caps - 2 to 3 times per day. Dd is on too many things now to start this, but am considering it for the future. Anyone tried this?

Qannie47 - what dose do you use for yourself?

3bmom, were the titers IGM or IGG? I know it's best to treat for both, but just curious which results were high for you and son. I was shocked our son had the current infection.

Yep, my son just tested positive for current mycoP IGM infection. My PANS dd had elevated IGG, so I thought I should have son tested for mycoP, even though he has absolutely NO physical symptoms of it at all. No cough, no sniffles. Strange as it is, this seems to be very common, not only with mycoP, but strep and the like. Oh, and PANS dd didn't have any physical symptoms, either. She seems to test positive for everything, though. So glad to hear your dd is feeling better!

So, we've been at this PANDAS/PANS thing for EVER. Eating disorder, exercise compulsion, extreme anxiety, OCD, intrusive thoughts. She had high strep titers, but they are slowly coming down. Treating for mycoP IGG (NOT IGM), and they are slowly coming down. Treated for H.Pylori. Treating for yeast and clostridia. Just tested for HHV6 - no results back yet. SO, we finally get brother and myself to doc. Tested for several things and son has elevated mycoP IGM. (No physical symptoms AT ALL.) I know several of you have mentioned similar situations happening. Could treating him finally be a turning point for her? Another question... dd is older. Now there's a boyfriend in the picture. How in the world do I keep her from catching something he might be carrying? I SO want to make him go get bloodwork done, but I guess that would be too much to ask.