fightingmom

Seriousy? He picks today to pull this crap? (I know it's not really that way, but jeez) I tried to wake him up at 9:30am - let him sleep in and stay home from school instead of taking a half day. Told him he needed to wake up, take meds, take dog out and he can lay back down for a while if he wanted to. He starts screaming at me to get out of his room and he's not getting up and he doesn't care about his meds or the dog and to LEAVE, LEAVE. Kicking his legs around on his bed, flailing his blanket all over like a nut. I picked up an empty bag of potato chips on his floor in the middle of all of this (which I don't even know where they came from, I didn't buy them) and he freaks out about me touching things and KICKS ME from his bed in the side, very close to where I just had surgery. I tell him calmly that he better watch where he throws his feet and he tells me that if I just get out I don't have to worry about it. Then tells me he isn't going to the doctor and he doesn't care and he's not doing anything I want him to do and if I don't get out of his room I'm going to really be unhappy because then I'll have to deal with more of his crap...not exact words but told me if i don't leave him alone and do what he wants he basically is going to make me miserable. So, will we even make it? Who knows. I'm so over this ######!

i assume the reason for the folic acid with IVIG would have entirely different reasoning and this is not even something on Dr. K's radar. My son has not had IVIG, and i am suggesting he has high histamine levels and is an undermeythlyator. So for some, maybe, folic acid could be activating (but maybe not if methyl form) because it may cause a bigger block in the pathway. Not everyone is this way, so treatments would be different for everyone. Though, I suspect that the reason Dr. K. includes folic acid after IVIG has no bearing on this association. It likely has more to do with the IVIG effects on the body, perhaps folic acid gets depeleted during the treatmen? Or, there are other changes in blood plasma, etc. that require increased folic acid? I have no clue. I do wonder though if supplementing with methyfolate would be better...??

Okay, apparently the link I am about to post requires you to become a member in order to remove the annoying box that hovers over the text. However, if you keep scrolling, you are able to read the post and it's rather relevant and important info. If you can withstand the annoying box, or would rather become a member of this forum to read it instead, it's worth it. Okay for some reason when I attach the link it takes me to their log in page and not to the post I was referencing. So, I have posted the link again, but put a space between http: and // Try copying and pasting into your browser and deleting the extra space. http: //forum2.aimoo.com/OMGthread2/Scientificness/Biopterin-BH4-1-331082.html

We use methyl protect from xymogen (have to get it from a participating provider, such as a chiropractor.) It has B-2, B-6, Folate and B-12, but methylated. Chiropractor prescribed it for my children by doing muscle testing. That sounds very interesting. Have you noticed any improvements? How long have you been using it?

Hang in! You are doing great. Very interesting that he was labeled as an undermethylator/high histamine kid in the past. Can't wait to see what your new labs show. I had no idea about the augmentin thing you posted earlier, too. Thanks for sharing that. Its been in the back of my head since I read your post..

No, no. Sorry, I was SUSPECTING that Pepcid and Vit C are HELPING!! Poor choice of words calling them 'suspects'! Sorry! Reducing the histamine, can reduce the inflammatory response. So, I do think there is a anti-inflam property. So, it sounds like you are seeing it too!

Makes me want to punch them, of course, then I would be 'violent' and a bad mom -- which would then lead to them suggesting my son's issues stem from my violence. LOL....so I don't punch people. Though, I often want to. Airial, so sorry you are having such a rough time. I feel your pain.

My son has his adenoids removed and tubes put in his years around 4-5 years old. For some reason they kept his tonsils. Maybe it was because during this time he was having serious sinus and ear infections, but his throat wasn't too bad. In any case, it was pretty easy on him. He was fine the next day. No kidding.

If I recall correctly, speaking for bulldog, too - we both took our kids off the steroids after a few days due to being overemotional, etc. -- so I don't think that has anything to do with it in our case, plus we've always had these symptoms and he's only been on steroids once. Actually, once we stopped taking them the week or two after was absolutely AMAZING and my son was doing great. Then they came back with a vengeance which I suspect is after the effect of the steroids wore off.

http://lymedisease.org/news/lyme_disease_views/dr-phil-chronic-lyme-disease.html?utm_source=Dr.+Phil&utm_campaign=Dr+Phil&utm_medium=email

Glad your DS is on an upswing at least, I won't jinx by saying anything else. We get lots of headaches here, too. Specifically after he has a big rage, he always winds down into a really bad headache that night and next morning. DS is very up and down. One minute he's "hi mom" the next minute he's yelling at me. If I don't say the exact thing he wants to here, I'm getting it. And, god forbid I change something. Poured a glass of milk with breakfast the other day and he flipped about that. Changed the cat litter I bought, flipped about "changing everything", changed the toothpaste, he screamed!! (wound up liking it better, too) We've seen upswings in school. For a week, he's great, getting in all missed assignments and working hard on projects. Then last week he wasn't doing anything again and I'm getting emails from teacher. It's that saw pattern for sure, but overall I'm avoiding major rages and meltdowns with advil. I need a better solution...and I honestly don't think the augmentin is doing anything.

You hanging in there? It's getting closer!

Oh yes, I certainly don't want to cause a stir of emotions or imply that it's not PANDAS/PANS -- or project my thoughts in a way that suggests that. When dealing with an illness that is so greatly dismissed and misunderstood as it is - that's the last thing anyone here needs. So, thanks for making it clear that this was not the intent! Mostly, I am thinking out loud, I suppose. Two sentences of yours above that I put in bold, are exactly where my thought process is going. When my son's aunt was initially explaining PANDAS to me (because my son's two cousins were diagnosed over the past few years) and she was telling me about the basal ganglia and the BBB, etc. -- I remember clear as day saying to her, "Well, can't you strengthen the blood brain barrier?" - and she told me there was "no way" to do that. Hmm, really? No way? Well, why not? What's causing it in the first place? There HAS to be a way, there has to be an explanation for all of this at a biochemical level, there just has to. That's where my head is. So, no way, no how am I trying "diss" PANS! This is first time EVER my son's illness is finally being taken seriously -- my kid has serious exacerbations when he is sick, he has recurring infections, his behavior has curbed when on antibiotics, ibuprofen and recently prednisone. And, I'm suspecting Pepcid and even vitamin C. Something is making our kids predisposed to PANDAS/PANS. So, now I'm saying, why? What's the link? And, what the h*ll has compromised my son's immune system so badly, and what's the cause of this inflammatory response that responds to advil and prednisone? Whaat causes this breach in the BBB? I feel like if I can work my way back to the "why" I have a much better shot at finding a lasting solution. Does that make sense?

Patric, ibuprofen can be rough on the stomach and possibly liver long term. So, it's best to just give in a flair, or for a few days in a row, but it's probably not safe for long term use. I have not found any difference between brand, but I have read here that some have found a dye-free ibuprofen that I have been keeping my eyes open for, but can't remember where they said it was available. I would prefer dye free, as you just never know what little thing is going to aggravate our kids. Besides, that, I am not aware of any difference between brands of ibuprofen. I would stick to the standard dose for your child's age/weight, too. and don't exceed the recommended doses in a day. I have been doing 2x - maybe - 3x a day, but mostly twice as needed.

I don't know a thing about IVIG or have the experience that the rest of the members here do, so I can't comment on that (though I too have read there is some discrepancy about HD or LD IVIG -- but you'll find that with just about anything, I suppose!). Just wanted to tell you that you are not alone, quite a few of your symptoms seem eerily similar to my son's who is 14. The other thing I wanted to say is that you have a good head on your shoulders, you are very mature, and it takes a lot of guts and determination to be proactively looking for information about your illness at your age. Kudos to you, and your parents. I wish I could offer you more, but I'll just wish you the best and hope that you get some reassurance and some helpful answers from the others.

LLM, thanks for putting that out there. I certainly don't mean to imply that this is a one size fits all thing or that everyone with PANDAS/PANS has a MTHFR mutation. Truth be told, I feel as this may actually wind up taking us down a new road down the line, but I'm not there yet and don't have any reason to start traveling. With or without the MTHFR mutation, wouldn't the zinc/B6 deficiency be along a similar train of thought though? That a hiccup somewhere along the way is causing a deficiency o some sort, or in some cases an abundance of certain minerals, nutrients, or even toxins, etc that in effect alters the body to produce or maintain adequate amounts of neurotransmitters, (or it's ability to utilize them correctly)?? I'm on a 10 min break and typing from my phone, so just thinking off the top of my head. I was always that kid that had to know the "why?" behind everything. I have this innate need to comprehend the reason behind things, the science behind it all, so I ask a lot of questions and try to put the links together. So, I apologize if me asking seems like I am doubting anything anyone is saying - I'm not. I'm simply trying to make sense of it all.

I'm headed into a class, but wanted you to know that it's not contradictory. The post you are referencing I copied from online and I'm fairly certain that the person that wrote it an many others are referring to the types of folic acid and b12 that not really bio available but are what's available in most supplements. The key seems to be the methylated forms and getting the pathway in balance so it can be used correctly.

Try these, Denise - easy reads and this doctor seems to dedicate himself to MTHFR. He is available for consult and has a facebook page: Info on A1298C mutations and symptoms: http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/ Potential tests to run: http://mthfr.net/mthfr-mutation-consider-these-laboratory-tests/2012/01/02/ and some other articles he has linked to: http://mthfr.net/mthfr-research/2012/01/27/

Okay, this is ironic to me. Besides, ibuprofen and pepcid seeming to be the best things we've found thus far to help my son -- I have restarted a rotation of supplements that I had put on the back burner when we started antibiotics, etc. I try to rotate things (this for a few days, this for a few days, then back again), so I can gain some perspective on what may or may not be having a good/bad effect and also because I don't want to make DS take too many things at once. He's 14 and already gets annoyed with all the pills I give him. Anyway, I too, have my eye on Vitamin C right now. I have read that vitamin c deficiency can cause inflammation and potentially open the BBB...AND that vaccine adjuvants can rapidly decrease vitamin-c.

You and I are on the same page with this stuff, and I agree with your reasoning. I am going to request testing from Dr. B. this Thursday and no matter what he is able to do/or not do, I'll be headed down the path of reducing histamine and getting this pathway in balance as well. I feel that this completely makes sense and could truly be the root of all these issues. This cycle regulates nearly every function in the body in some degree - including the ability to fight infections - and links to a permeability in the BBB. So, it makes perfect sense that the MTHFR gene and methylation pathways would be an issue for PANDAS/PANS kids or people with any type of chronic immune issues or illness for that matter. Any blip in it could cause a serious domino effect of issues. I keep picking up pieces of the puzzle and the significant reduction of symptoms in my son from ibuprofen or pepcid to me is a MAJOR key in unraveling all of this. I'm no longer going to allow doctors to shrug me off when I tell them Advil reduces his symptoms. I can't tell you how many times I have sat in front of doctors and said in these words "I noticed that in extreme episodes I can give him Advil and in a short period of time he is completely calmed down. There seems to be a major inflammation component to all of this." I just said this to a psych at the children's hospital last week (my son is participating in an MRI study for them) and the guy looked at me gave me a half-###### shrug of the shoulders and moved on to his next question. Completely ignored, AGAIN!! That's fine, I'm keeping a list, and when my kid is well, I'm sending them every study I have from pandas/pans, lyme, methylation, heavy metals, etc. and a nice long letter. And, I'm telling you, if it takes until my dying day, I'm going to figure this out and I will get him better. Oh, Yasko mentioned in a short video clip I watched the other day something about giving 1/4 of a methylfolate pill. Now, I don't know how many mg's the pill was that she was talking about quartering - perhaps if you see what the dosage is of the products she offers it will give an idea?

This is a much easier read. There are many entries on the left hand side in order, if you want to read more: http://naturalhealingforbipolardisorder.blogspot.com/2012/02/histadelia-and-methylation-part-ib-what.html

I haven't opened this link yet, but just read through something that referenced the exact same earlier. Yes, it is all a vicious cycle, but it's slowly starting to make a lot of sense to me.

Interesting -- along the track of methylation pathway: "High histamine individuals are inherently high in folic acid. Although folic acid is used along with B-12 in the production of methionine it is also involved in histamine production along with B-12. Consequently B-12 and folic acid are strictly avoided in high histamine patient care. These patients need to avoid multi-vitamins." http://www.gilbertssyndrome.com/allergies.php Also, this: "Incidence of allergies in the world have been on the rise for decades, as are symptoms that are likely related to the neurological effects of high histamine levels - depression, ADHD, OCD, and several others. Use of antidepressants is rising, as well, and it is likely much of this is a result of the rising allergy levels and lack of awareness or treatment for the emotional/behavioral H3 receptor reactions that go along with it. These problems are prevalent enough to be shaping society, and have produced a new stereotype. Look again at the symptoms of high histamine levels: excess mucus, excess saliva, excess perspiration, frequent colds, phobias, being highly motivated, compulsive working, perfectionist, good creativity and imagination, strong sexual desire, joint pain, runny nose, depression, headaches, muscle pain, poor pain tolerance, slender fingers and toes, hyperactivity, and social isolation. Are you starting to get the picture? Have you known anyone who fits this description? Physically, this person is thin with bony fingers. He is sniffling, sweaty, often sick, and more often than not male. He is competitive, motivated, hard-working perfectionist, who excels at school. His headaches, allergies, low pain threshhold, and joint pain make him uninterested in sports and physical activity. He is creative and enjoys fantasy such as video games, comics, or role playing games. Yet his fears, depression, hyperactivity, and OCD behavior make him antisocial. He has a high sex drive but is too awkward to form relationships. You probably know several people like this. People with these characteristics are called nerds, dweebs, and geeks in high school. They are awkward, unpopular, and not physically active, but really smart and good at difficult but logical subjects. During my first allergy episode, I went from a fairly popular class clown to someone who had difficulties in social situations. I became obsessed with a video game and played it ceaselessly. After the years of allergy shots I became much more social and outgoing again. And now, in this new, far worse allergic crisis, the same has happened again. In the last few years I have found myself shying from social engagements because it's hard to interact with people, and I am obsessed with a new video game." AND: "Folic Acid (Vitamin B9) & Vitamin B12 http://www.patrickholford.com/content.asp?id_Content=1026 * Check your histamine status. If high don't take large amounts of folic acid or B12 Histamine imbalances are another biochemical twist in the tale of schizophrenia. We all make histamine, but some more than others. Some people produce excessively large amounts of histamine and are called 'histadelics'. High histamine levels in these people can lead to compulsive and obsessive behaviour and pits of depression... Since Folic acid and B12 stimulate the production of histamine, these supplements... should be avoided by those with a high histamine status. http://www.diagnose-me.com/cond/C447056.html Histadelics should avoid supplemental folic acid as it can produce excess histamine. In fact, anti-folate drugs may be required. Folic acid increases depression in histadelic patients and a trial of folic acid could be used to distinguish between histapenics and histadelics. In extreme cases, folic acid in food or in multivitamins is enough to produce the adverse effects." --------------------- I'm assuming that when they say to avoid folic acid, they are not referencing, and probably are not aware of the methylfolate that is better able to be utilized. The writer may be referring to the folic acid found in most supplements... LOTS of things coming together for me with all of this.....Lots of loops back to MTHFR, methylation pathways and histamine. MTHFR test is very high on my list now.

Dut ..is that 1st and 2nd generation? i think 2nd is ok???? i hope you can find link. thanks for the heads up I've been scanning multiple articles/studies stating the H2 is fine, and increases the integrity of the BBB as Fixit said above. EDIT: Sorry, misread, you are asking about 2nd generation H1 antihistamines being safe? I'll see if I can find anything.

Probably a good idea, at least for the blender. I, however, saved the spinach for last, hoping the color would immediately become blended into the dark berry concoction in the event DS walked through the kitchen while I was mid-blend! Didn't want to risk him getting an eyeful of a frothy, green mix in the blender and refuse to try it based on looks alone! Now that he's hip to my underhandedness . . . and agreeable to it . . . I could probably do it the way you suggest and get a few more miles out of my blender! Thanks! That was some carefully calculated smoothie blending!