LNN

signed.

To my knowledge, they absolutely cannot ignore the medical note nor change the 504 without medical documentation. I needed to provide a doctor's letter in order to end my DDs 504 for illness. You can't just modify a medical 504 without it. I'd be calling the State Dept of Education or google some sort of parent advocacy group in your state. Sometimes just showing them you know your rights changes the tune.

My son had all the things your DD has. Bear in mind my son also has Pandas - that has gotten hugely better, but he's still reactive to strep. So many of his symptoms are common to both lyme/bartonella and Pandas. I actually once drew a Venn diagram with Lyme in one circle and Pandas in the other and the majority of his symptoms were in the parts of the circle that overlap. So I'll list his symptoms but can't say which ones were lyme/bartonella and which were Pandas... OCD Tics Rages (not due to OCD) Idea fixation (Mom - we need to get in the car and drive to Target to buy a Nintendo DS NOW! followed by a 45 min meltdown when the answer was no) Big brain fog/poor recall/poor cognitive functioning (hugely improved with zinc/B6) muscle pain constant swollen gland only on left side of neck (common in bartonella) dysgraphia urinary frequency anxiety adhd He did improve with prednisone and from pex and from T&A. But he could not sustain improvement for longer than 2 months. So after failed IVIG, 10 weeks later we tested for lyme and had positive 41s and IND 31, 34, 39. He responded to lyme treatments (combo abx and cyst busting abx). Then he greatly improved when we treated deficiencies of zinc/B6. This, despite overall negative Igenex and negative bartonella. So for me, it was a proof in the pudding thing. He got better. That's what mattered. He did not have gastro problems. My DD did. But lyme was always a questionable dx for her. Methylation issues seem to be more her thing. The hard part of giving anyone advice is that often it's a layer thing. It's rarely one single thing, one smoking gun. So I'm not trying to say "treat lyme" and you'll be golden. But the only way you'll know if this is part of your equation is to give it a try. Aside from the Advanced Labs lyme culture, there's no test that ca "prove" or "disprove" lyme. Response to treatment - or lack of - remains the best way to tell.

I debated on whether to reply on this forum or the Pandas forum, because it's almost expected that those of us on the lyme forum are going to tell you to pursue and keep the LLMD appt. But...here goes, expected or not I agree with S&S and Philamom - our LLMD also agrees that IND isn't negative. It's responding to something. if it were a numeric value and 20 were positive, an IND might be 19.9. It just means the band was fainter than a line that is absolutely positive. Doesn't mean it isn't there at all. My son was negative on Bartonella but responded wonderfully to the abx used to treat it. So I stopped caring what he had, so long as I saw improvement. Even if you want to completely dismiss the labs, you have mycop that isn't responding the way it should. So it's possible a second infection is getting in the way. Or it's possible there are methylation issues, the MTHFR as well as maybe others, that are keeping things from getting better. IMO, the best kind of specialist to help you with this stuff is an LLMD. (DANs are probably strong in methylation but less so for tick issues). My son struggled with pandas-like issues for 2+ years and could not sustain remission. We treated with an LLMD for 8 months, saw steady progress and then found the missing piece (for us) which was a foundational deficiency (pyroluria in DS's case, MTHFR in DD's case). We've had long, sustained remissions now. Yes, setbacks with strep in Feb, so still Pandas. But mild flair and fairly easy recovery, back in remission now. So for us, this was the clear way forward. No, i have no way of being able to say this would be true for everyone. But your DD has always struck me as potential lyme. I think you owe it to yourself to see it thru and keep the appt.

Hope the doctors have answers for you! FWIW - I was sidelined yesterday with a 24 hr bug. Could not move off the couch - excruciating muscle and joint pain (tho I did have a fever). I had new found sympathy for those lyme patients who have to live with this every day. So here's hoping DDs issue was a short lived virus and nothing more!

Folic acid is also known as folate. The gene that helps your body process folate is your MTHFR gene. If you have a mutation in this gene (estimates are all over the board - have read 18-40% of certain populations have a mutation) - then supplementing with folate doesn't help because your body can't process it and convert it into methylfolate - the form that the body uses. One option is to assume you have a mutation (a family history of heart disease, stroke or macular degeneration wold be a clue) and just supplement with methylfolate instead of folate. Your other option is to have the genetic test done - any lab can do it. It cost us $10 (we had met our deductible, otherwise the cost was $50). In either case, whenever you start to supplement, start at a low dose and build up. If you have a folate deficiency (or zinc or magnesium, etc) and you supplement, the body's conveyor belts start to work better and clear junk that's been stuck. Very very common to hear of people having short honeymoon periods when they start supplementing for a deficiency and then feeling worse. Starting slow and building up helps reduce this effect. Princess1 - so happy to hear about your well-deserved recovery!

FWIW, even tho Sacc B is supposed to have all positives and no negatives, my DS and I both have issues with it. It seems to agitate him and make him act out, lose impulse control - sort of like yeast would. For me, it makes me bloated/gassy. When we go off of it, we both improve. As usual, we don't follow the script. I only mention it in case you don't like what you see. Fingers crossed for you.

One theory is that the non-sick child's immune system reacts to the perceived threat and arms for war, despite no active infection. Instead of attacking strep, it attacks self. I know others can give you a better explanation than that. My personal theory is that your body needs a certain level of nutrients to function normally. When you get sick, those nutrients are diverted toward pathways that fight infection or potential invasion. That leaves other pathways depleted and produces symptoms. If you hover at borderline deficiency on, lets say zinc or C, and then your body needs extra for the immune system, then you crash into a red zone. You need 120% but only have 80%, creating a 40% gap. But that's my theory only, gathered from all my methylation research. It's not the one I've heard from Pandas docs.

I think of detox in three categories: put stuff in to help the body's detox systems help the body bind up toxins so they stop circulating excrete the toxins Things that help the body: glutathione - the mother of all anti-oxidants. But as Coco said, glutathione is poorly absorbed. We've used liposomal, some use cremes. They may help but it's hard to put a lot into the system. Other antioxidants - alpha lipoic acid - a precursor to glutathione, but I wouldn't use until you've ruled out metals. resveratrol - a really good antioxidant. milk thistle - speeds up a specific liver pathway, which helps the liver detox more efficiently. However, it's related to ragweed, so be cautious if you have a ragweed allergy. Also google to make sure you're not on any contra-indicated medications. MT can cause certain medications to metabolize too quickly or too slowly, resulting in an unintended level in your body. coconut water - have never used - others may have info lemon water or any water to flush the kidneys zinc/B6 - essential to the body's trans-sulfuration (detox) pathway Things to bind toxins - (take binders away from abx) activated charcoal bentonite clay chlorella chelators - DMSA, DMPS, EDTA pysillium husk- to help things from getting compacted/stuck in the bowels Things to help elimination magnesium (to help transit time) fiber/miralax (ditto) epsom salt baths - elimination thru the skin sweat/sauna - elimination thru the skin exercise - aids transit time and sweat water/hydration I'm sure there are many others to add to this list. Hopefully other people will jog my memory and add their ideas. You don't have to do all of these things and I'd only add one at a time to measure any effects. Some of these things are more practical than others depending on the kid. Pick your battles. I'd also work with your doctor to build a plan that's tailored - especially on supplements. When we added zinc/B6 for pyroluria, it came with the expectation we'd go thru a rough spot as detox started to really kick in. The "worse before better" thing. Having a medical sounding board was key. Wouldn't have known what to do - or how much - without the LLMD's advice.

Here's the wiki page that explains IFN-g http://en.wikipedia.org/wiki/Interferon-gamma IFN-γ, or type II interferon, is a cytokine that is critical for innate and adaptive immunity against viral and intracellular bacterial infections and for tumor control. Aberrant IFN-γ expression is associated with a number of autoinflammatory and autoimmune diseases. The importance of IFN-γ in the immune system stems in part from its ability to inhibit viral replication directly, and most importantly from its immunostimulatory and immunomodulatory effects. IFN-γ is produced predominantly by natural killer (NK) and natural killer T (NKT) cells as part of the innate immune response From reading the rest of the article, what I gather is that your daughter has had very high candida issues and her body has learned to develop lots of t-helper cells to fight it. In the process, it's developed a very high inflammatory response. I'm curious why you say you don't have a leaky gut issue. My understanding is that candida attaches to the inner lining of the intestines and grows little legs that bore into the lining. This boring creates inflammation and greatly increases gut permeability. So high candida infections would greatly increase your odds of having a leaky gut. Once you have a leaky gut, all sorts of nutritional imbalances can occur and you'd see a variety of neurological issues as a result (regardless of any current infection beyond candida). So it's surprising that you'd say a leaky gut wasn't involved. Curious why. I might have this reversed, but I think diflucan is for localized yeast infections and nystatin is used for systemic infections. If the infection has spread beyond the gut, she may need the one used for systemic infection. There are also natural remedies - garlic pills have helped my kids a lot and we take one at every dinner. When we started this, I saw die-off behavior in my son, even tho I never suspected yeast was his problem. A week later, his behavior was way better and his cravings for carbs dropped a lot. His focus and memory also improved. I guess my only advice is to not underestimate the power of yeast and how much the behaviors can look like Pandas. I was amazed. Gut health has now become a huge focus in our house.

Others have given some great advice. So not sure I'll add anything different. I was fortunate to be working part time with flexible days when this hit. But I think figuring out some way to gain job flexibility is going to be important. This probably isn't something that's going away in a few weeks. So figuring out the job thing early is important. I think it's awesome that you recognize your son's needs. It's so tempting to ask the healthy one to "suck it up" and compromise while you deal with the crisis child. Don't worry about "leaving your DD out". Your son's needs are equally important. So I think you're doing the right thing there. As someone else said, letting go of preconceived notions of how things "are supposed to be" is really helpful to. Forget about what others think. Two other key things - take care of your marriage and take care of yourself. This will test your marriage in ways you never imagined. It will test your finances, your time together, your ability to communicate and to support each other when you're exhausted from supporting your children. Our family therapist kept pushing for "date night" but I was never comfortable with that. We couldn't afford a night out when we had medical bills and my reduced work hours were already hurting our finances. I didn't trust a babysitter to be able to handle behaviors. So we eventually carved out "us" time in the mornings - shower/shaving/bathroom time became our time together to compare notes, talk, be honest with each other. Sounds lame, but at night, we were just too tired. So carve out whatever time of day works, but schedule in some time every day to check in with your spouse. We sometimes had "lunch dates" when the kids were in school and daycare so we'd have an hour alone. Hardest of all will be taking care of yourself. Generally, both parents don't play the same role in this journey. One will be "alpha dog" - usually the parent who joins the forum. Alpha dogs become the conductors. But they usually forget to take care of themselves and feel guilty when they do. But the rest of the pack needs a healthy alpha. So indulge in small ways. Take long showers. Play your favorite music when you're alone in the car. Insist on carving out 30 min a day where you exercise or read or talk to your mom or drink a cup of coffee alone on your deck or whatever you need to do to nurture yourself. Just small gestures to remind yourself that you matter too. You won't believe any of us that it gets better. Sometimes it takes a long time to get better. But it does - because you learn more, you learn coping tools, you connect with doctors and parents who can support you.

Coco - Yaaaaay!!!!

There's no single "best" abx - every individual seems to respond differently. Most lyme patients use combos of abx, not just one. If you're worried about lyme, I'd pursue lyme testing rather than worrying about using any particular abx. I know it's got to be terrifying to lose your son twice. But you know you can get him back. There are some good things to read under the helpful threads section that may help.

We used it for a time but never saw any change one way or the other. It seems to effect some people greatly and others not much. Agree with Bulldog - either cut back or stop until Monday. Also focus on detox.

Y'all made me blush In addition to your boys, TPotter, I really hope new Pandas parents watch this. If I could turn back the clock, this is the path I wish we'd gone down so much earlier. When I was new to this, my whole focus was on getting abx and making things stop, on suppressing things. I now think the best way to make it stop is to help the body's systems go. Support the body, support methylation, and the body can do a lot to heal itself, which is what it's wanted all along. It sounds really new-agey but this stuff is scientifically sound and makes so much sense to me.

Great explanation! So as I start giving low levels of methylfolate, I will have to dig out the dusty bottle of niacinaminde (knew I bought it for a reason, but then forgot why ) FYI - niacin can sometimes produce a flushing sensation. Niacinamide is a form that doesn't produce the flush. I believe there's one other form as well, but can't recall what it is.

I know some people must roll their eyes when they see my name and the word "methylation". It's a complex topic that I don't do a very good job simplifying. Here's a video that does a good job of explaining the high level importance. Pandas is discussed at min 16. Nice poem at the end.

You will always have my unconditional support, no matter which path(s) you travel. I am a huge believer in CBT. We use it many times a day. Sometimes successfully, sometimes not. But it's just part of our family fabric. My only suggestion on a therapist is that if you have a choice between more than one, ask if they also do ER/P. Because anxiety responds very well to CBT. But for OCD, you need ER/P, which is a specific flavor of CBT. So working with someone who can help her develop both skills would be really useful. As for the respiradol, I know how careful you are and how much of yourself you've put into this child. If this is what you need to do to keep your family functional, then do it without guilt and no apologies. You're in my thoughts.

There is always hope. It's just that there's this key chain with 100 keys on it and you have to find the right one to unlock your child - and you may need more than one key. Very, very frustrating, but not hopeless. What has your doctor said about her lack of progress? Is he an ILADS LLMD or a general practitioner?

Probiotics help with gut issues but I never saw them help with my DDs constipation. For that, we use 100mg/day of magnesium glycinate. She's 7, 49lbs. An adult daily dose is 400mg. But for DD, 100mg does the trick. If we give more than that, stools get loose. She is regular for the first time ever. We also give daily probiotics, but for other reasons.

My DD was just shy of 6 when she started on pepcid. Doc had her at 20mg for her GERD (she was 40? pounds when soaking wet) but you can start with 10mg and see if that's enough.

Here's an article that discusses treatment for mycoplasma http://www.morgellons-uk.net/?p=467 If he is positive for EBV, antibiotics will not do the trick, as EBV is a virus. A few on the lyme forum have battled EBV and used various anti-virals. The one that worked for my daughter was l-lysine - an over the counter essential amino acid supplement from the health food store. You can google l-lysine+EBV for some research. Just be aware that l-lysine can lower seratonin over time, so if you see an increase in anxiety, you may need to also add something like tryptophan of 5-htp for a time. But EBV can go dormant and cause multiple health problems later in life, so it's not something to just "ride out". EBV is the parent virus of mono. You'll want to be on some sort of anti-viral. If he is positive for recent infection and it has not yet been treated, I'd assume it's a current, active infection. Bear in mind both infections are contagious. (EBV is spread thru saliva). So getting your son a separate tube of toothpaste, a new toothbrush kept away from everyone else's - would be good ideas. If anyone else in the house has a cough or symptoms of either infection, testing/treatment for them should be a consideration as well.

I'm so sorry you're in this place. Have no solutions to offer for your mom. But wanted to let you know I've had to deal with the drawing/perfect issues a lot. My daughter is a huge perfectionist and the "I'm No Good" Fairy is very very big for her. We tried inositol, which helped a little. We use ERP/CBT as much as we can (tho not in the middle of a meltdown - that only makes it worse). Abx have helped some but sometimes we deal with these things when no infection is part of the equation. Which is why I get so passionate about methylation - because for my daughter, there's something "foundational" that goes deeper than infection. Anyway, what has really, really helped her is tryptophan every day and tyrosine every other day. So just something to tuck away in case things go as predicted next week. You're right - in many ways rages are easier to manage than when they beat themselves up inside. Breaks your heart.

In what way is he sick - sinus? cough? sore throat? If he has a persistent cough and fatigue, consider mycoplasma (here's a good background article http://www.morgellons-uk.net/?p=467 If he has chronic sinus troubles, consider MARCONS and/or mold http://www.survivingmold.com/diagnosis If he is quite active outdoors, or has muscle pain, brain fog or neuropsych symptoms, certainly look into lyme. Chronic viruses also create havoc. A chronic infection will wear the body down and you end up dealing with secondary issues as a result of the body becoming depleted of essential resources. It sounds like either he never eradicated the infection (so trying a different abx is a good suggestion) or there's an underlying infection (e.g. lyme or mycoplasma or viral) that requires much more aggressive treatment (either longer courses of abx or multiple abx or a combo of abx+herbs) or there's an environmental toxin that's keeping him sick. Sorry to throw spaghetti at the wall to see if something sticks, but there could be multiple things behind this. Is there an integrative doctor nearby who might be able to help him test for these things?

PMd you