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DCMom - I do the same thing with the melatonin - this is what it's for, do you want it? Half the time, she says no and I respect her decision. Probably because I don't sense it gives her quality sleep and also because DH (who ironically has sleep apnea) isn't keen on it. Neither of us like how it makes us feel when we use it and since DH is generally silent on supplements, when he voices an opinion, I try to respect it. Pr40 - I agree on the importance of sleep - but as I said, I don't think the melatonin gives her a good quality sleep. So it's not a supplement I've been inclined to push. Just a gut feeling that I can't explain. ThenMama - thanks for all your thoughts, esp. on the hormones. I don't think this is an OCD thing with her. We've done lots of CBT for anxiety but she's never really had true OCD (my DS has). She does however,, psych herself out. DH does it too. After the first 10 minutes, they can tell it's going to be a "bad" night and then they both get all worked up over the "need" to fall asleep and get frustrated. Becomes a self-fulfilling prophecy. We do have a general routine and DH and I trade off every other night. Tonight I'll read/talk with DS and he'll read/talk with DD then tomorrow night, we switch kids. I do back and foot massages, scalp massages, lymph massages, deep breathing, think happy thoughts...Sleep eludes her no matter what. Except last night when we didn't get to bed until 10:30 pm - and she fell asleep in about 10 min. - and slept until 8am. Prior to 6 months ago, it rarely took her more than 10 min to fall asleep. So something has changed. I did dig up her thyroid results and will start a new thread on that. Time for me to learn about another body system...

T-cell cancer caused by a virus, epigenetics, immunotherapy - all in one article! My own DD just started sublingual immunotherapy for environmental allergens. Won't know for a year if it's helping, but three drops/day under the tongue sure beats the heck out of hearing her scream over a shot, even when we'd finally worked out way up to only once a month. And I checked with the maker of the sublingual drops - the only ingredient beside water and the allergen is a minute amt. of phenol as a preservative. I was so impressed with this doctor. Can we clone her?

I know this may sound hypocritical coming from me, queen of supplements, but I'm actually trying to reduce the number of pills the kids take. They're getting to the tween age where I don't want them thinking there's a pill to cure every problem in the world. For the pills they do take, I try to hold up the vitamin C and say "this is the orange you won't eat. If you start eating oranges, this pill can go away. This Omega is the fish you won't eat. Start eating fish and this pill can go away." Trying to point out that a large portion of their pill load is to compensate for poor diet. There are days that I dish out the pills and the Rolling Stones song "Mother's Little Helper" goes thru my head "She goes running for shelter of her mother's little helper..." referring to Valium. I'm starting to get more sensitive to the subliminal message I might be sending. So "here, this is to help you sleep" worries me. Don't get me wrong - we do resort to it. And if my kid only took a few pills, I'd have less concern. But because DS has lyme and because DD can't take a multivitamin (due to MTHFR mutation, she takes separate vitamins for D, C, K, separate minerals etc), they take a lot of pills already. I worry about creating a mindset I never intended. So I'm trying to fix the sleep problem in a different way.

Ha - you're funny! No - she's been quite diligent and hasn't let any new foods past her lips in years.

I know that IVIG helps many and I am not posting to be anti-IVIG. If you are in a position to do it and feel it's helpful, by all means go forward. I only chime in for those who are new and might feel pressure that they "have to" do IVIG in order to be "good parents" or to give their child every chance at recovery, yet may end up going seriously into debt to do it. I personally don't feel IVIG is your only treatment option. You can get often get your child back in other ways. Not everyone will agree with me, some have experienced remarkable recovery with it. Others, including my son, were not helped. So I only post this for those who have this internal struggle going on - do we get a second mortgage? Do we raid the college fund or 401K? $10K for a treatment that may give temporary relief but isn't a cure is a lot of money! As I said, if you can swing it and your gut tells you it's the way to go, do it. But please don't feel like you have no alternatives or "need" to do this for any chance of recovery. Many parents are able to achieve remission, over time, with antibiotics. Some with combo abx. Some with a combo of abx, supplements and ERP therapy. There is no single right answer, no universal path. And absolutely make sure you don't have a chronic infection going on or it's money down the drain. If you haven't ruled out lyme with a specialty lab (quest and labcorp tests don't count IMO), if you haven't tested for mycoplasma, run recent strep titers, done a viral panel for HHV6, coxsackies, EBV...then do these tests first. Again, not trying to bash the procedure or talk anyone out of something they firmly believe in. I only say this for anyone who feels pressure but may not have the financial resources. IVIG is a tool, not a cure. It can help some kids. But there are other options if cost creates a serious dilemma.

Well, no B vitamins given at bedtime. Only give 1mg melatonin when we give it and when we do give it, it works in about 15-20 min. regardless of if it's 8pm or 10:30pm when we're desperate after 2 hrs of tossing/turning. She just doesn't wake well rested when we use it. She sometimes gets tryptophan in the a.m. when she's had a few moody days in a row - to help with anxiety induced by a teacher who doesn't "get her". Tryptophan turns to serotonin before it turns to melatonin, so it helps with anxiety and she's never gotten sleepy from it. I've tried a few times to give it an hour before bed with no effect. She's taken probiotics at bedtime for 2+ yrs and the sleep problem is only for the past few months, so I don't think that's it. She only pulses abx every other day and she was treated for lyme or chronic infection for a year in 2011 - that ended over a year ago and her C3d levels are now normal, her GI issues are resolved. So no signs of infection playing a role. We did test for metals and mercury was in normal range as were all other metals. Slight elevation in lead (like 6 where below 5 is normal) and she took EDTA + artimisinin for 6 weeks right after that for EBV, so I doubt it's a metals thing. She also takes milk thistle and liver levels are tested every 4 months - always normal. She also takes garlic for anti-yeast and anti-films. No yeast issues since March '12 when we started garlic (yeast was common before that). Parasite testing has come back negative. It doesn't seem to be anxiety - the insomnia occurs even with a parent next to her, with a night light. She just says she cannot get comfortable. Mama2alex - we did not test MSH on my DD - did that for DS. So I suppose I could ask about that. The problem is that the nearest labcorp is an hr away. And her allergies, which were causing a chronic dry cough, have greatly improved since we bought mattress and pillowcase allergy covers and got vigilant about keeping her room well vacuumed/dust free. We've replaced carpets with wood flooring, emptied the basement of all organic materials, take apart/clean the washing machine drum for mold every 6 mos., fumigate the bathroom and her bedroom with thieves oil...so it could be mold but if it is, I'm stumped on what more I can do. She's been in the same school for 3 yrs - no carpets. Has the sleep problem even on school vacations. The thyroid is one for my radar. Her TSH has come back ever so slightly elevated (like 5.2 when 5 is the cutoff for normal). But not enough to do more than monitor, per the LLMD. I do appreciate all the thoughts. If I ever figure it out, I'll let you all know!

You can also test for antibodies to candida albicans - which is a blood test. Here's a decent intro to all topics on the gut - scroll down until you hit yeast http://www.medicalinsider.com/bacterial.html#top There's tales that you can also detect yeast by a white coating on the tongue and that you can do a spit test into a glass of water first thing in the morning, before getting out of bed. Spit into the water and wait 20-30 min. If the spit dissolves, no yeast. If it's stringy, you have yeast. However, this is coming from your mouth, so not sure it's really reflective of what's going on in your gut. If you google yeast, you'll find a number of blog sites - some with good info and some not so good.

For the past few months - maybe since the fall - DD8 has been struggling to fall asleep. Once she's asleep, she sleeps thru the night. But the getting to sleep is a real struggle. Sometimes she will toss and turn, sometimes she'll lay quietly - but sleep won't come. Even with a parent next to her, even when anxiety isn't an issue, even when she's complained of being tired, she just can't fall asleep. It often takes 90 min - 2 hrs, so she isn't asleep until 10:30 or even close to 11pm. Any thoughts on what can cause this? I'm not asking for supplement ideas. Melatonin will (sometimes) help her fall asleep. But then she doesn't wake feeling as rested as when she falls asleep of her own accord. I'm that way too. Melatonin will get me to sleep but I have weird dreams and don't wake feeling like I slept soundly. So sleep aids like melatonin or valerian root aren't what I'm looking for. I'm looking for what might be causing the problem. Prior to this, it never took her more than 10-20 minutes to fall asleep. We supplement with Vit D and her last test showed her level at 66 (january). I know that sometimes, a lack of D or too much D can interfere with sleep. So I stopped supplementing for a week and no change. In addition to the insomnia, she often complains of fatigue and pain (she's been treated for lyme, her C3d level is now normal for the first time in 2 yrs, so I don't think it's an infection behind this). So I started CoQ10 about 6 weeks ago in the morning and her complaints of fatigue went away - until yesterday. But the insomnia was going on months before the CoQ10, so I don't think that's it. She's had cold sores, so I've been giving her 500mg of l-lysine every morning for 10 days. But again, insomnia has been going on for months. Has anyone found that a particular supplement or food or anything - has caused trouble falling asleep? (Have also tried an earlier bedtime - no luck). Ideas?

My DS10 gets 500mg/bid of amox as a script. It is our emergency script. he's normally on other abx for lyme but in the winter when an illness causes his OCD to come back, we add the amox (or sometimes augmentin) for a few weeks and that usually puts the OCD back into remission. Some feel amox doesn't do the trick, but it has always worked well for DS.

PMd you

Mama2 - good idea on checking titers. I'll have to ask LLMD if he'll do that for us. Reactive - my hesitation on meningitis more than the other vax is that I don't like the idea of inducing an immune response to anything involving the menages. Too close to home. Nothing based on science. Just my knee jerk reaction. Plus, my kids had all their vaccines until the age of 6 and did "fine". Pandas didn't hit until vaccines were over. So a Tdap booster worries me less only because we survived the same vacc before (at least, it doesn't seem to be related to any of our issues but I'll never know). The meningitis vacc on the other hand is both an unknown and directed at immunity and the brain. Just gives me a bad feeling. Nothing based on "facts". S&S - love your imagined conversation. I didn't realize we belonged to the same religion! I've figured that if I end up taking the religious exemption (they are not allowed to quiz you) - I'd say I was a Unitarian. But I like your answer better.

Yes, but neither you nor I have the funds nor the emotional resources to be that parent who carriers the banner. JAG - I see how the AAP letter allows you to cherry pick but to get into 7th grade in CT, you need to provide proof of meningitis, Tdap and prior 2 immunizations to chicken pox (which my kids have had). And I went to check - there is no pertussis only vaccine. it can only be had as a combo Tdap. The medical exemption form is more complicated than the religious form (which is all of two sentences) and I don't want to invite trouble for my LLMD. But whether religious or medical, I don't see how you'd be allowed to argue that you were ok with one vaccine but not another. It seems like you have to do all or nothing. I just can't come to terms with doing a meningitis vaccine in a Pans kid.

Wow - this is scary. I can understand the CYA for a dr. to have something on file saying the parents were informed and declined anyway. But the language in the AAP "template" just screams "insurance won't pay for your kid's medical bills from meningitis/flu/etc because you could've prevented it with a vaccine and chose not to". Despite that fact that these vaccines are not 100% effective and in some cases (guardsil) less than 50%? effective. Yet insurance doesn't pay for all the extra medical expenses of autism, does it? So damned if you do, damned if you don't. Do you know if you can chose to selectively immunize or do you have to take a full opt-out. There's no way I'm giving my kids the meningitis vaccine or guardisil but would consider a pertussis and tetnus as two separate, single-dose vaccines (w/no preservatives). But I get the sense you don't get to cherry pick, that it's all or nothing and therefore I'll have to take the religious exemption.

Back when DS was first dx'd with lyme, we got his dx the 2nd week of Oct., my mom died the 3rd week of Oct and I was laid off the 4th week of Oct. But even before then, my close friends were gently suggesting I get on meds b/c they were worried about me. I jokingly refer to it as my nervous breakdown but only half in jest. I don't want to ever get that low again. I had such a tenuous hold on things. I was so very, very exhausted. Once I was done crying over all the "events" I was numb and empty for about 6 months. It's like it was just too much effort to feel sad or cry or feel much of anything. I knew I should be scared but that would've taken too much energy that I didn't have. I totally get how you could be feeling. For me, sleep and time were most important (and kids healing). But 1) gaba or 2) tryptophan plus tyrosine were my go-to supps for bad days. Indulged myself in 50 Shades of Gray and the Unfinished Garden (a Harlequin with the main character having contamination OCD - the author is a cyber friend of mine). I normally read "The Pathogenesis of Strep" so for me to read trash was quite a change. But it was a good escape. I also watched/read some Brenee Brown http://books.google.com/books?id=0bvm3UgSlQcC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false and http://www.ted.com/talks/brene_brown_on_vulnerability.html and Byron Katie http://www.byronkatie.com/ and Richard Bach's Illusions (same guy who wrote Jonathan Livingston Seagull) http://xa.yimg.com/kq/groups/17906145/166780938/name/Illusions_By_RichardBach.pdf You should also try to get out and reconnect with your former life. You've given so much of yourself to DD these past years. It's no wonder you're empty. You need to take from others who can recharge you. It isn't easy at first, but the more you dust off those neglected parts of your life, the better you start to feel. It can't all be about disease and train trips to CT. Email me if you want to vent more. :wub:

I think you have to wait for the week's video lecture to be posted. It isn't super clear but I'm assuming sometime today they'll post the video and (hopefully) email those who registered.

From this link it appears that adding magnesium would be appropriate http://www.easy-immune-health.com/vitamin-d-and-constipation.html When vitamin d is taken it requires magnesium- and other nutrients- in order to work properly, and those who have even a subtle magnesium deficiency will then get obvious Signs of Magnesium Deficiency after taking vitamin d. Constipation is one of these signs of magnesium deficiency and if you are getting constipation from vitamin d, then your body is telling you that you ARE magnesium deficient and that you probably have been for a long long time. Most people who complain of Vitamin D and Constipation have had other health problems related to magnesium deficiency for long periods of time, but they simply didn't realize what they were. So, the solution for most people is to simply follow the instructions on the Magnesium Dosage page and remedy your magnesium deficiency. But do remember that vitamin d also uses up OTHER nutrients too, such as Vitamin K and Vitamin A, and many many people get relief from their Vitamin D Side Effects from taking Vitamin K and Vitamin A as well. The article has additional links for information on these other vitamins and minerals and dosing.

BTW - here's the link to the free textbook Molecular Biology of the Cell

If you're looking for a desperate story with a happy ending, you can read Saving Sammy by Beth Maloney. Her son was very sick for a long time and it took two years of antibiotics to get him well. He's now in his 20s and recovered. Some of us have been on this board for a long time and each of us has found significant success - but in many different ways. There's no one size fits all. I think you do need to give IVIG a certain period of time before you judge. Sometimes it takes time. For some, it isn't their answer. Some have turned to multiple doctors for different perspectives. I know you've tried many antibiotics but it doesn't seem like your son has been on any of them for an extended period of time or on a combo. There are also other things to test for that can prevent a sick body from getting well - such as pyroluria, mold toxins, toxoplasma gondii, parvo virus and others. No single doctor is an expert on all these things. Sometimes it takes a very deep well of perseverance and resources to finally find your root cause. But don't give up hope. The answers are there. It took me 2 yrs of chipping away to get to a major root cause (lyme in my son's case) and another year before we found another major root cause (pyroluria). Then an additional year of more treatment to get to a pretty nice place. It took two years on a different path to find different answers for my daughter (methylation issues). It's not an easy journey. But the payoff for not quitting is indescribable.

Hi and welcome to the forum. Is the tenex new for your son? How long has he been on Celexa and at this dose? Zithromax generally has a half-life of about 36 hrs. but it builds in your system. So a 5 day course is in your system for about 10 days. So if there were a bacterial infection, yes, the zith could still be killing it and if that bacteria is a type that releases toxins when it's killed, you could be seeing what's called a herxheimer reaction - the body responding to the toxins. Some strains of strep release toxins (this is what causes scarlet fever rashes with some strains of strep). Lyme bacteria, yeast and mold funguses also release toxins. Has your son been tested for lyme? I don't see any treatment for the HHV-6 - is that being addressed? Perhaps if you could give a bit more history, it would help. Also, as a general rule, we try not to post the full names of doctors. This is a public forum and it's best to keep our own names as well as doctors names confidential. Usually you'll see a doctor called by his/her initial of the last name, so Dr L, Dr K etc. And then if you need to know more, you can send a private message to someone by clicking on their user name, which will bring you to the user's page and you'll see an option to "send me a message". You can recieve private messages by clicking next to your user name in the upper right corner at the top of the forum page and you'll see "messages" where you can go read your private mail. If you'd like to edit your original post you can click on your post and you'll see "edit post" as an option on the bottom of the text box. (only you can edit your own posts).

No - thank you! I've been so excited for the past hour. Went to pick up the kids at school, sat there in the cafeteria waiting with all the other parents - people I know well enough to say Hi to but not friends. Feeling like a total misfit and utter geek for wanting to shout "I just signed up for a 12 week course about DNA!" Can't tell you how happy you've made me to know I'm not alone! (even if I fail all the tests).

This free online microbiology course will cover DNA and cell biology. Free, 12 week online course. Starts tomorrow but you can join after that. https://www.edx.org/courses/MITx/7.00x/2013_Spring/about 7.00x is an introductory level biology course hosted by professor Eric Lander, who was one of the leaders of the Human Genome Project. Although this course has been designed exclusively for edX, the course content reflects the topics taught in the MIT introductory biology courses and many biology courses across the world. As a student, you will first focus on the structure and function of macromolecules such as DNA, RNA and proteins. You will discover how changes in the structure of some of these macromolecules alters their functions and what the implications of such changes have on human health. As you continue in the course, you will apply an understanding of heredity and information flow within cells to human health and disease and will learn about molecular biological techniques and their potential to impact our changing world. After you complete this course, you will have a foundation in biology that will allow you to understand the remarkable medical revolution going on today. Students will complete this course in 12 weeks. At the center of each week is a series of lecture sequences that are supported by interactive video tutorials and interspersed exercises or problems. Additionally, students will work on a homework assignment or exam each week. The course will conclude with a comprehensive final exam. 7.00x – The Secret of Life will let you explore the mysteries of biochemistry, genetics, molecular biology, recombinant DNA technology and genomics, and rational medicine. We are excited to take this journey with you! Estimated Effort We expect that this course will require 6-8 hours per week to review video and complete assignments and exams. Prerequisites There are no prerequisites for this course. Knowledge of basic biology and chemistry is useful but not required at all. This course is designed so that nearly anyone can participate and complete the course without prior knowledge.

We just use as needed, no need to build up or taper down. From April-mid-June, we'll each take one capsule in the morning, then usually another after school. Then a zyrtec at bedtime (which is a 24 hr dose). But we do it more based on symptoms rather than a strict dosing. If it's a rainy day and allergy symptoms are less, we'll back down or even skip the day. We use it for symptomatic relief. DD started sublingual allergy drops last month (stopped allergy shots last yr - too traumatic for DD - 18 mos of shots and her needle phobia got worse and worse). It's remotely possible this season won't be as bad for her but most likely, the drops won't make a difference until next yr. MomWith and NancyD are using it as part of a daily anti-inflammatory regimen, so their dose schedules are different.

My DD and I use this - mostly during allergy season http://www.amazon.com/Now-Foods-Quercetin-Bromelain-Veg-Capsules/dp/B002JNK8EY/ref=sr_1_3?s=hpc&ie=UTF8&qid=1362332048&sr=1-3&keywords=quercetin but I always have some on hand. As MomWithOCDSon says, bromelain and vitamin C help absorption. But I get the kind w/o Vit C b/c we already supplement with it separately at a higher dose. I generally like NOW Foods because they follow GMP (good mfg practices, which is meant to ensure that quality is consistent) and they routinely inspect their suppliers. But not every single supplement I've gotten from then seems to work "the best" - for instance I don't think their Resveratrol is very effective and I use a different brand for that. I also like Source Naturals, tho they tend to be a little higher priced.

:wub: :wub: I'm so, so happy for you! I can't even find the words, so :wub: :wub:

We use quercetin as-needed as an anti-histamine. I love it b/c there's no drowsiness, no spaciness, just relief. The down side is that on high pollen days, we end up dosing every 4 hours. We don't use it as an anti-inflammatory as it doesn't seem to influence/calm down behaviors the way motrin does. Here's a good overview by Theorharides at Tufts http://www.bioxtract.com/plant-based-actives/quercetin/index.html I've read good things about luteolin but never tried it. I've heard mixed reviews on Lutimax. One note to look into in the quercetin if you have Mediterranean heritage. Most commercial quercetin comes from Fava beans, which can be a problem is you have a certain genetic mutation. http://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogenase_deficiency But my DD, who is 1/2 Greek, seems to be ok with regular quercetin. If it's a concern, there's this product http://www.algonot.com/neuroprotek.php but it's a lower dose and didn't seem to do much for my DD.