queenmother

My daughter's alkaline phosphate was high at that age, as well. I was told that it had nothing to do with her issues but that it was usually an indication of a growth spurt. Given what we were going through at the time, I have always wondered about it myself. She is now 18 and we still have flares but everything is better than it was, probably due to antibiotics off and on for years now. Her titers indicate that mycoplasma is her big trigger but any other bacteria/virus seems to re-activate the mycoplasma.

Haven't been on this site for a while which means we are doing pretty well here. :-) This was a HUGE issue for my daughter when she was playing tennis....or doing anything physical. After one tennis match, we literally had to take her to Urgent Care as she was totally out of control. I did extensive research at the time and came to the conclusion that it could have something to do with BH4 levels. I made this connection because she seemed to do well when she had one of those vitamin waters (I know they are not recommended by purists but they certainly helped her). Not the sugary gatorades. Just the vitamin water with vitamin B and C and a few other things. After noticing that it worked, I increased her B complex daily and added royal jelly capsules. Royal Jelly is a fair source of BH4. We continue this even though it has been a couple of years since we have had a major problem. Go to Dr. Yasko's site and read up on the BH4 connection. It is critical and often overlooked in the equation. Dr. Yasko stresses the importance of it when laying the foundation for healing. Sure helped us and I make sure she never goes a day without it and the Mitoforce (b vitamin supplement that helps with mitochondrial support). I truly believe it is a mitochondrial issue but haven't found a traditional doctor who could help us. To get into the metabolic clinic at Duke, you have to have a clear diagnosis and be referred by a doctor. We all know that PANS is not considered a clear diagnosis by traditional doctors. We are left to figure it our on our own. QueenMother

We have seen a really nice difference here, too, since starting the DHA-heavy fish oil. For the first time ever, however, my daughter has been complaining of headaches. Nothing horrendous, mind you, but she has never complained of a headache until recently and she just turned 17. I have read that doctors are using fish oil to aid in healing severe brain injuries so I am hoping that there is some healing going on in there. Obviously, if they get worse or persist, then I will seek medical attention but, for now, she seems to be handling everything quite well. I started using the DHA-heavy fish oil after reading an article about it helping with glutamate receptors. I have long suspected that glutamate is a piece of our puzzle and had been using GABA (though never the doses that have been recommended because she complained of feeling foggy). Did your son complain of headaches? Please keep us posted and I am hoping you have on-going, looong-term success!!!!! QueenMother

My daughter's knee does that, as well, which is very hard because she plays tennis and does a lot of dance in theatre. Popped out for no obvious reason a few times and not when she was playing tennis or dancing. She was also being treated for Lyme, bartonella, and mycoplasma but I have no idea if it is related. I did read (research junkie that I am) that dopamine levels affect hypermobility in the joints and she is a ++COMT so I expect it has something to do with it. Sorry I don't know more but I have been curious, as well. QueenMother

So sorry. My daughter has struggled with this but (knocking wood now), we seem to be having a nice long run of pretty normal, whatever that is. My daughter's big triggers are mycoplasma and bartonella. She also had strep in her gut confirmed by a stool test but it did not show up on any other test or her titers. Interestingly enough however, strep in the gut has been proven to be directly related to anorexia. Definitely build up her vitamin D3 levels as D is critical. Originally, we hit the mycoplasma and bartonella hard with a few months of doxycycline. Doxy treats both mycoplasma and bartonella and is well-tolerated for long term use. After the first couple of months, we put her on a maintenance dose which is the same as for acne and we were told teens can take it safely for a year. We took a break from it last summer and she did great!!! When school started back in the fall, I started her on the maintenance dose and plan to keep her on it until we are past 'sick season.' She has a fantastic winter thus far. (Really scared that I'm jinxing it but really want to share our experiences as it may help your daughter) Every morning I also give her one Mitoforce (HolisticHealth), one Holistic Health MTR/MTRR/SUOX methylation support, a sprinkle of phosphotidyl serine (helps the dopamine receptors), a sprinkle of Metfolin, a sprinkle of HOlisticHealth MTHFR A1298 Liver Support (she does not have the A1298 gene mutation but the compound formula has a lot of stuff in it that she needs and was recommended by Dr Yasko), and I give her a colostrum tablet. I compound all the sprinkles of various stuff and some hydroxyB12 and put it in the capsules myself. I also give her a Royal Jelly capsule every day to help with her BH4 levels. (It has low levels but definitely helps) I also give her a cup of chamomile most nights and put a packet of xylitol in it. Dr. Yasko says that xylitol helps kill strep in the gut as does papaya. We also have hit a new awareness that anorexia is more like OCD and my daughter's brain gets locked. Now I gently remind her that we need to unlock her brain and its easier to deal with it. Sometimes the tea helps. Sometimes I have to resort to Advil (not for a while....knocking wood again). I also give her Sambucol occasionally to ward off viruses. And we talk about what we can do to get un-stuck. Piano helps. Writing in her journal helps. I have heard that inositol is great for anorexia and OCD. I've been reading about it but, honestly, I don't want to change anything right now. I hope some of this helps. By chance, do you know any of her other genetics? I have some theories..... QueenMother

blastocystis hominis was one of the critters that showed up on DD's stool test about 3 years ago. After treating other parasites - and h. pylori - it has not shown up again. I assume something in the pharmaceuticals, herbals, minerals, and ritualistic cleansing ceremony must have killed it. Just kidding about the ceremony, sort of. We were pretty desperate at the time. QueenMother

Hello, dear. Not on forum much because of travels.....which means we have been doing well here. (HALLELUJAH CHORUS INSERTED HERE) Monolauric acid is (if I remember correctly) high in sulfur. If your child has CBS morph, proceed with caution. We had a great summer a few years ago when taking small doses (1 T daily in juice) of virgin coconut oil (which is monolauric acid). However, we do not have the CBS morph. I am a big fan and, if you google "monolaurin + CDC", you will see that even the CDC states that there is nothing more effective against virus (98% effective). That being said....my daughter ACTS like a CBS mutation and presents with high ammonia, high AKG, and high cysteine. She also has a negative response to sulfa drugs. While the coconut oil worked great a few summers ago, I recently introduced monolaurin as part of her protocol and she did not do well AT ALL. Instead of the virgin coconut oil, I tried the monolaurin capsules by Ecological Formulas that I bought from our PA. It may have been a herx response, but it was so bad that I took her off of it after a few days. It also had a small amount of inosine in it so that may have been the difference. I may try the virgin cocnut oil again later this summer as I think it is more pure, organic, and milder. This is my only experience with monolaurin. The clarithromycin has been amazing for us, thus far. I am writing this as an affirmation and trusting that the other shoe will not drop. :-) Health and hope. Queenmother

Thank you all so much for your input. I'm giving it a shot to see if we can resolve some of the restrictive eating issues. It could be a verrrrrry long flight if it throws her off-kilter. I hope it helps her as much as it seems to have helped you all. With a grateful heart, QueenMother

My dd16 is scheduled to start clarithromycin in the am and I have been reading the insert. It states that it could cause psychosis and, Lord knows, we have dealt with enough of that with the disease so I don't want it with the treatment. I see that several of you have experience with clarithromycin/biaxin and I am hoping that you can share your experiences with me. I am doubly worried because we are flying cross-country on Wednesday and I really do not want to create a problem. She is currently doing pretty well, although we are still dealing with eating issues and a very short fuse. She hasn't really been raging, however, and I am afraid to give her something that could trigger a backslide. I need to get her started on it because her summer is short and we need to get as much healing done as possible before school starts again. Soooo.....anyone have experiences? The good, the bad, the ugly???? Thanks so much for taking time to help. QueenMother

I totally agree with everything these dedicated moms ( and dads) have already said. I would never accept a bi-polar diagnosis at this very young age. I know that you are worried because of your sister's condition but we all have a "different" fruit dangling from our family trees and that doesn't mean that your son will carry that same fate. There may be a genetic link and, in fact, your sister may have a genetic underlying condition that has brought about her diagnosis. How fortunate for you and your son that you have an opportunity while he is young to help correct any future problems. I encourage you to explore every avenue - infection tests, genetic panels, antibiotics, LLMDs, PANS/PANDAS specialists -whatever you can do to get to the bottom of what is going on inside your little boy's body. 23andMe is a great, non-invasive way to get a genetic profile which can be a roadmap on your journey to healing. There may be mutations that are relatively easy to bypass (like staying away from sulfurs or adding in methylfolate or extra B12) and that knowledge can be life-altering. Most importantly, love him up as much as possible. No matter what happens, love him, love him, love him. Like all of us here, I adore my child but there are so many challenges at times that I have to remind myself that she is not well. And, God forbid, if her illness was more well-known (like diabetes or epilepsy or cancer), I would probably respond in a different way. This has gotten me through many raging tantrum episodes without becoming a raging mess myself. Little things you may want to try now which may help while you wait for testing.....limit his glutamates and calcium. As Dr. Yasko says, "Glutamate is the gun but calcium is the bullet." It may be of some help for now to try eliminating dairy to see if it helps. I would also suggest a comprehensive stool analysis to rule out parasites, strep, h. pylori, yeast, fungus, etc. You can learn so much without having to be "poked." Big fans here of the poop test. :-) Give your little guy a hug. You are doing a great job getting to the bottom of this while he is so young. QueenMother

Sending prayers up and healing thoughts your way. qm

Kind of intrigued by all the math and science.....even the music is basically math. Interesting. qm

We are pretty new at all of this and do not have coxsackie as a trigger so I am not much help. I will say, however, that if you saw improvement with the advil, then I would definitely pay attention. You are fortunate to have a doctor who would even suggest PANDAS/PANS to you to begin with and I would strongly recommend that you follow up on it. I would suggest that you do a trial of doxycycline to treat the mycoplasm. It is a pretty benign antibiotic and well-tolerated by most and is recommended for myco. Since your son is so young, however, do not do it long term because it discolors teeth. It sounds like your doctor may know a little about PANS so I would consult him on it. Antibiotics are worth a shot to get the source while he is so young. Wish I could be of more help and, of course, that is just my opinion. QueenMother

Nary an engineer here. All business/entertainment. However....I always excelled in math and science and my PANS dd16 breezes effortlessly through honors and AP science and math courses with A's. (Thank God!) Interesting to see how many engineer-related. Kinda feeling left out. QM

Thanks, JPDad! I watched it after reading your post and saw Dr. Trifiletti. Interesting that all the girls got better after starting antibiotics except for the one with Lyme. They reallly presented it unbiased because I wasn't sure if people accepted PANDAS or the psychiatrist who said it was psychological. Of course, it was late and I was tired so I may have to find it to watch it again. What did you think? QueenMother

I still think you should give the GABA/magnesium citrate a try at night. Even moreso, given that he is only pooping twice a week. The mag citrate would help with that alone and it is a calming mineral anyway. Just don't give it within 2 hours of antibiotic. QM

t.Anna, gaining an hour is definitely a step in the right direction! Great idea, SF Mom, to do a comprehensive stool analysis and check for yeast. And good advice, LLM, on possibly lowering the CBS load. As you lower the folinic and give TINY amounts of methyl-folate, you may see all of these moods and behaviours changing. Keep us posted. And I hope you continue to gain hours each night! QM

Is it bad to admit that it helps me to hear that there are others out there dealing with the same issues we have had? I have found that, as long as she is not harming herself, we do better to give her paper and time alone. Many, many, many sheets have been shredded and it does seem to calm her. After a while, I go back to check on her and she will be watching tv and knitting or skyping with friends and it is almost as if the episode never happened. However.... if it is a really bad episode (and we have had many like the ones you described), things escalate quickly. I have learned to hurry and get a little orange juice with 2 little drops of valerian root tincture in it, and a Motrin or Advil (NO tylenol). If I can get that in her, it takes the edge off. Then I give her a capsule of 200 mg GABA combined with app. 75 mg magnesium citrate. This has been working for us. Of course, there have been times that I could not get her to take the juice and pill.....times that she has thrown it in my face. Times that defy all human comprehension. When my kid is in one of those flares, there is no way to negotiate or reason with her. She is not in a state of mind that trying to talk with her will help. I have learned to let her vent, just let her get it out, without saying or doing anything that will provoke her further. It is unbelievably hard to sit and take the abuse but I have come to realize that she really cannot control it. If your child was having a hypoglycemic crash, would you punish him? If he was having a diabetic episode, would you punish him? This is almost like some kind of verbal seizure and I can't bring myself to punish her for a medical condition that is out of her control. I did not feel this way in the beginning but I have grown to see that this is truly out of her control. Interestingly, we have not seen any of these episodes since starting doxycycline for the active mycoplasm and bartonella so I am hoping we are at the least knocking down the infection. I have read that mycoplasm and bartonella both cause explosive, raging behaviours. And at the recent Bartonella seminar that our PA attended, they said that most self-injury is caused by Bartonella. Interesting stuff..... Anyway, as you guys should know by now, I am a HUGE fan of GABA/mag citrate. It helps my daughter calm down amazingly well. QM

Very low dose folinic acid is definitely fine if there is a MTHFR problem but the methyl folate is still the one needed to bypass that mutation....and that, too, should be cautiously low and then increased slightly. Without the genetic testing, it is hard to know for sure, but since there was a problem with NAC, my brain immediately went to CBS problem instead of MTHFR. NAC is a sulphur donor and, if it is not tolerated, I would be cautious of anything that affects the CBS until I knew for sure. Folinic acid is not good for CBS upregulation. My daughter has MTHFR and COMT problems and she cannot handle high doses of methyl folate at all, even though she needs it in very small amounts. Every kid responds so differently . I very much agree, LLM, that it is difficult to know for sure without the testing. It's sort of like trying to drive in London. on the wrong side of the street. with the steering wheel on the passenger side. in the pouring rain. without a map. I am still thinking it's the folinic acid and methylcobalamin (though I will concede on the ubiquinol) so please keep us posted. QM

Dr. Y recommends magnesium citrate because the glycine in magnesium glycinate is a fair weather friend and can actually increase glutamate excitability. A little glycine is good but, depending on your genetics and your methylation block, it is a little risky. 50-100 mg of mag citrate shouldn't be too laxative but every kid is different. Definitely give minerals at a different time than abx. We find that zinc is best in the morning and mag citrate is best before bedtime. It is tricky getting everything in...probiotics at least 2 hours after antibiotics, minerals 2 hours after antibiotics, methyl donors early in the day...OY!!!! My daughter just turned 16 and we worked up from a sprinkle to 1/2 cap of GABA which is about 200mg. I have read that some people give 3-7 caps of GABA daily- which I can't imagine but again, every kid is different. We go low and slow on everything and the GABA/mag at those doses work very well for us. QM

I will give up my favorite high heels before I give up GABA and magnesium for my daughter! (And I looooove shoes!!!!) GABA is the single most helpful thing that we've done (along with hydroxyB12) as it definitely helps with anxiety and sleep....for all of us. GABA is not a methyl donor but is sometimes combined with theanine which IS a methyl donor. That's why I always suggest pure GABA. (Zen is a very popular product that is mostly GABA but NOT if you have a COMT++ or +- as it contains theanine, also.) Magnesium, as LLM stated, helps to counter the calcium but is also helpful with the neurotransmitters, like dopamine. The only thing of which to be vigilant is in giving too much GABA as it will make kids 'mushy' and weepy and 'out of it.' At the correct dose, however, it eases the anxiety and blocks some of the glutamate receptors that get over-excited from glutamates. There are glutamate receptors all over the body but I truly believe that some GABA does cross the BBB because there are obvious signs of it's effectiveness, at least we see it here. Lynne, we have been using GABA for almost 3 years, off and on, mostly on. When things would get better, I would sometimes slack off on GABA/mag because I did not realize just how helpful it was. Once I made the connection, well, I don't slack off on it anymore. Glad you've dosed down on the pharms. Lay back and enjoy your cruise! QM

Also, I forgot to add that Dr. Y says that you have to have lithium in place to transport the B12. Get some valerian root at your local health food store and put 3-4 drops (NOT droppers) in a glass of water and give at night. Valerian root is very calming but also has traces of lithium so it helps transport the B12. If you take a lot of B12 but are low on lithium, the buildup of B12 can cause hyper-edgy states, as well. Don't we all wish we had more diligent in our chemistry courses? QM

First of all, I would stop the methylcobalamin and replace it with hydroxycobalamin. You can order this at www.holisticheal.com. I would also drop the folinic acid. The form of folinic acid you are giving is not ideal, according to Dr. Yasko. Folinic acid is a "formyl" type of folate that has to be converted to the "methyl" form. Regular folic acid competes with TMF. You want to get metfolin or folapro or order 5-TMF (you can also order this from www.holisticheal.com or get metfolin/folapro from your local vitamin store). Just make sure that it says 5-methyl-tetrahydrofolate. Give an extremely low dose (a sliver of a pill or a sprinkle of a capsule) early in the day because it is a methyl but this is the form that you need. Are you giving ubiquinol for a specific reason? Ubiquinol (coQ10) is used in mitochondria for energy production and I would drop it for right now. If it is absolutely necessary for some reason as dictated by your doctor, I would suggest giving a tiny amount early in the day and seeing if it helps with the sleep issues. I also would ask the doctor if the Luvox could gradually be lowered. Sometimes too much serontonin presents with hyper, agitated, manic-like symptoms. And definitely try the GABA/magnesium citrate that I recommended earlier as it will take the edge off and hellp your son to relax. Good that you tried getting him up earlier and I would recommend to continue doing that and give vitamins/supps/meds early in the day. I really think the culprit is the methyB12 and the ubiquinol, fwiw. QM

You may have some genetics happening. If your son is COMT++, he may be very sensitive to methyl donors and those definitely keep you awake. Methyl donors include caffeine, theanine, curcumin, methylcobalamin B12, DMG and TMG, PhosphylSerine, coQ10, and even zinc late in the day....any of these can keep you awake if used late in the day. Melatonin is a methyl donor, as well, though usually ok in VERY small doses. Every cellular action in your body requires a methyl donor to activate it so it can perform its job. If you have a mutation of the COMT, then the enzyme is sluggish and can't use up the methyls in your body. This causes agitation and inability to sleep (among other things). I would make sure that your son is getting no methyl donors late in the day and I would make sure to cut out all caffeine period. (May be hard for a teen) Wake your son before noon and make him go outside for a few minutes immediately upon rising. Sunlight will help to reset the pineal gland which controls sleep cycles. Try to limit his glutamate intake as these are also excitatory. And try GABA. Make sure it is pure GABA with nothing else added and give 4-500mg (depending on your brand) between 10-11 at night. A capsule of magnesium citrate works really well with GABA, as well. This is very relaxing and generally helps with sleep. If you get him up a little earlier each day and get him in the sun on rising, cut out methyl donors, and try GABA and mag late in the day, you should be able to resolve this in a relatively short amount of time. Bacteria destroys serotonin. Serotonin helps with sleep. Sunshine, exercise, turkey snack....all help with increasing serotonin levels. 5HTP also increases serotonin levels and helps greatly with sleep but DO NOT GIVE 5HTP IF YOUR SON IS ON A SSRI (Zoloft, Prozac, etc). This can produce too much serotonin and create serotonin syndrome which is life-threatening) Hope this helps. Sleep is a necessary part of healing and regular sleep cycles are so important to recovery. QueenMother

Michelle, I sent you a private message so check your mailbox. QM