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TinyTreasures

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  1. My nearly 4-year-old has had dark red circles under his eyes that past two days...I distinctly remember this a over year ago when this PANS nightmare began and a few times since when he's been in a flare. He is in the middle of a pretty bad flare for about a week+ (worse the past few days) but I don't know why - he hasn't been sick with anything in over a month. Any idea what causes the dark circles? Vitamin deficiency, allergies, or any specific infections? Thank you!
  2. Thank you again! I will wait to see what the sulfite strips say before adding any additional CBS supplements. Hopefully they are low so I can slowly start the MTHFR treatment! Also going to see if my son's Neurologist can prescribe any of those tests what will check amino acids, metals, etc and maybe our insurance will cover it...
  3. Okay so crap...the Molybdenum I purchased says "Molybdenum (a diluted solution of Ammonium Molybdate)". Does that mean it has ammonia in it? Exactly what I am trying to avoid?
  4. Thanks so much for starting this thread and for all your helpful information! As I posted on the last thread, my almost 4-year-old's mutations are: Homozygous: VDR Taq MAO-A R297R CBS A360A Heterozygous: COMT V158M COMT H62H ACAT1-02 MTR A2756G MTRR A66G MTRR A664A BHMT-02 BHMT-04 BHMT-08 MTHFR C677T MTHFR 03 P39P MTHFR A1298C I've been reading heartfixer and Amy Yasko's site and most of the time my head is spinning with all of the different mutations and their interactions with each other and all the treatments, and on top of it - my boy is only 3 years old! How do I know if everything is safe for a 3 year old? I want to get him tested with the OAT test and metals test and amino acids test but that is over $500 - and that is just to see where he is initially! How does anyone afford that? =( I did order Sulfate Urine Test strips...something I can actually afford. Waiting to receive those. Right now for an unknown reason he is having a flare - tics, anger, aggression, rages over tiny things, hardly eating anything, bad language, obsessions - NOT my typical boy whatsoever. His Neurologist prescribed 7.5 mg of Methylfolate and 500mcg of Methylcobalamin. Thank goodness I posted on here before using those things - you all told me that was a ridiculously high dose for a preschooler and as I've researched it, it is not hard to find information saying that high of a dose could have been dangerous for him, especially given his CBS mutation. I have given him 1 drop of Molybdenum (25mcg) for two days now. How long before we see any changes? I've been reading about GABA...is that okay for a 3 year old? Does that help with his gene mutations or just something to relax him? Since he is Vitamin D deficient can I start giving him Vitamin D or do I need to wait until the CBS issue is addressed? Off to read for another hour and to try and make sense of things. Thank you again!
  5. Thank you, just ordered our moly drops, Methylfolate, and Methylcobalamin. I will start low and slow and see how it goes!
  6. One last question...what do you think about this supplement? It seems to have both Methylfolate and Methylcobalamin in it and gets great reviews... I would just need to slice off a small bit of the pill for my nearly-4-year-old to take: Active B12 Lozenge With L-5-MTHF | Sublingal Active B12 | 1000 mcg of Pure Non-racemc L-methylfolate | 800 mcg of Methylcobalamin and Adenosylcobalamin Vitamin B12 | 60 Sublingual Tablets | Physician Formulated | Seeking Health http://www.amazon.com/gp/product/B00822JNTC/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A2TW2XLT5W4EN7
  7. LLM, I just want to thank you SOOOO much for all this extremely helpful information! I read it right away but have not had time to really research everything and figure out an exact plan...I want to approach everything the right way and not make things worse. I have no idea why our Neurologist prescribed 7.5 mg - looking it up you are right - that seems so high! I am so glad you responded. Thank you SO much for even posting links to where we can get everything. I greatly appreciate this! Our little guy was doing well but since starting school things have resurfaced including the raging meltdowns (most recently because we could not make a real monster appear...he INSISTED we be able to do that, and then today because he couldn't wave a magic wand and make things disappear like they do in cartoons). Tics are way better but definitely the bipolar behavior has come back - we just traded one thing for another. We should get his Cunningham Panel results in a few weeks or sooner, and the hospital will run a bunch of other blood tests (Mycoplasma, Coxsackie, West Nile, Lyme) when he is under anesthesia to have a lipoma removed mid September. In the meantime I am going to try the protocol you wrote about and go slow with things and hope for the best! Thank you again so much!
  8. Thank you both! We will be testing for mycoplasma and hopefully bartonella also in early September. I appreciate your posts and also the one in my other thread....sorry for the delay, I've just been waiting till I had a few hours to process everything to respond. Thank you!!!
  9. LLM - thank you SO much for such a helpful explanation! That really makes sense as to why things get so bad when he is sick. His Neurologist did not give us any advice for the Vitamin D...should we start him on Vitamin D supplements since that level is so low? I just posted his genetic genie results hoping I'll get some advice on how to treat his other issues so the methylfolate and methylB12 can work efficiently. http://www.latitudes.org/forums/index.php?showtopic=21249 Also, she prescribed one 500 mg methylcobalamin lozenge per day, and one 7.5 mg methylfolate capsule every other day. Are these too high to start off with? PIK - thank you for your post! It is hard to know exactly what a 3 year old is hearing/seeing/smelling so I appreciate hearing from someone who is old enough to explain. For the first couple months while he was hallucinating he would get furious when I would ask questions about who he was talking to or why he was yelling "Stop It!" or why he would say things like "They won't let me do this". He was constantly flapping at his ears, plugging his ears, always mad. Then suddenly things changed - got better in many ways, and he started talking freely about his "Head guy" and telling me the things the head guy was saying to him. Must be such a terrifying experience for anyone, let alone a 3 year old. I hope you are better today! And now that we know more, we are certain he is not bipolar and not going down that road whatsoever.
  10. Okay so I have the information for my 3.5 year old from 23andme...but I am so overwhelmed about where to go from here! Only the MTHFR is something his Neurologist feels comfortable addressing, but from what I am reading it looks like other things need to be addressed before the vitamins she prescribed will take effect, and they could even have bad negative side effects if I don't address the other things first. Looking for some advice from people who have been there! He is "compound heterozygous" for both MTHFR mutations, so she prescribed one 500 mg methylcobalamin lozenge per day, and one 7.5 mg methylfolate capsule every other day. What I am reading says "Slowly build up doses of methylfolate and methylcobalamin." Are these low doses? His vitamin B12 level was more than double what it should be - just building up in his body but not being used. Also, his Vitamin D level was at 15 (normal is 30-100) but I don't remember her giving us any instructions to address that other than getting more sun. Should he take a Vitamin D supplement? ----- Here are his gene mutations: Homozygous mutations for: VDR Taq MAO-A R297R CBS A360A Here is a tiny bit of the information genetic genie provided about these mutations: CBS Mutation: "Dr. Yasko recommends that one supports their CBS enzyme for at least 6 weeks before starting methylation supplements. When one tries to take nutrients to support their methylation cycle before addressing the CBS upregulation, all the nutrients basically lead to nowhere. Instead of generating glutathione, the supplements may deplete the rest of the cycle" VDR Taq: With COMT V158M + and a VDR Taq + status, the body may have further trouble tolerating methyl donors MAO-A R297R MAO-A (Roamine oxidase A) is a critical enzyme involved in breaking down important neurotransmitters such as serotonin, norepinephrine, and dopamine. Combined with COMT V158M mutation, one may be more prone to develop Obsessive Compulsive Disorder (OCD), mood swings, aggressive and/or violent behavior, and personality disorders He is Heterozygous for these mutations: COMT V158M COMT H62H ACAT1-02 MTR A2756G MTRR A66G MTRR A664A BHMT-02 BHMT-04 BHMT-08 It says since COMT + individuals often have trouble tolerating methyl donors, they tend to do better on a combination of hydroxy B12, adenosyl B12, and/or cyano B12. ------- So he has several gene mutations that make it difficult for him to tolerate methyl donors, and two prescriptions for methyl vitamins waiting to be filled. Where do I start? Is this something a homeopathic Dr would be helpful for or should I try and figure this all out on my own? Thank you so much for any advice you can give, even if it is just in one of these areas. ______________________________________________________________________________________________________________________________ PS****** Posting all the info given by genetic genie below: MTHFR MutationsFirst we'll look at a few of your MTHFR mutations. According to research, these mutations are important and can be implicated in various disease states. You have 3 heterozygous (yellow) mutation(s). These are generally not as bad as red homozygous mutation, but they may still worth paying attention to. They include: MTHFR C677T MTHFR 03 P39P MTHFR A1298C Now let's move on to discuss what these MTHFR mutation(s) mean. MTHFR C677TOne function of MTHFR (Methylenetetrahydrofolate reductase) is to help convert homocysteine to methionine. A MTHFR C677T mutation means that the MTHFR enzyme may have trouble performing its task leading to high levels of homocysteine. According to Dr. Ben Lynch, impaired function of the enzyme can cause or contribute to conditions such as Autism, Chronic Fatigue Syndrome, Fibromyalgia, Miscarriages, IBS, many birth defects, Multiple Sclerosis, Alzheimer's, Bipolar Disorder, blood clots, Stroke, Chemical Sensitivity, and many other conditions. MTHFR C677T can also lead to high homocysteine. You can ask your doctor to test for homocysteine levels. If you have high levels of homocysteine, it may be related to your MTHFR C677T mutation. But even if one has a (+/+) or (+/-) mutation, it does not necessarily mean that they will have high homocysteine levels. As S-adenosylhomocysteine (SAH) accumulates, the COMT enzyme may become impaired. Inhibiting COMT can increase dopamine levels for those with COMT V158M (-/-), but for those with COMT V158M (+/+), the high level of SAH can lead to behavior problems and mood swings according to Dr. Amy Yasko. Nutritional Support of MTHFR C677T Supplementing with Folate (preferably as L-Methylfolate) can help alleviate the effects of MTHFR C677T as well as lower one's homocysteine levels. There are a lot of different types of folate on the market, and I recommend reading this article by Dr. Ben Lynch about folate. It might be a good idea to avoid synthetic folic acid and folic acid fortified foods such as cereals. Also, lowering other doses of forms of folate or folinic acid may be important as it can compete with L-methylfolate. To avoid adverse effects, one can start with very low doses of folate and work to higher doses. Side effects can occur as a detoxification effect as this pathway becomes unblocked. In the case of extreme adverse effects, time-released niacin and/or potassium may be able to stop the side effects. MTHFR 03 P39PThere is currently not enough research or data to draw conclusions from this SNP. MTHFR A1298CMTHFR A1298C is involved in converting 5-methylfolate (5MTHF) to tetrahydrofolate (THF). Unlike MTHFR C677T, the A1298C mutation does not lead to elevated homocysteine levels. This reaction helps generate BH4. BH4 is important in the detoxification of ammonia. The gene is compromised about 70% in MTHFR A1298C (+/+) individuals, and about 30% in people with a heterozygous (+/-) mutations. BH4 acts as a rate limiting factor for the production of neurotransmitters and catecholamines including serotonin, melatonin, dopamine, norepinephrine, and epinephrine. A MTHFR A1298C + status may cause a decrease in any of these neurotransmitters or catecholamines. It's also a cofactor in the production of nitric oxide. If your BH4 cycle is not working effectively, you may experience mental/emotional and/or physical symptoms. Mercury, lead, and aluminum may act as a drain on BH4. Adressing MTHFR A1298C L-methylfolate supplementation may be implicated. One should start with low doses of L-methylfolate, and in the case of adverse reaction time-released niacin and/or potassium may help. Metal detoxification (especially aluminum) can help address dysfunctions associated with MTHFR A1298C and BH4 deficiency, and can help many other biochemical abnormalities as well. Aluminum toxicity can hinder one's ability to fight infection, so addressing the gut and treating chronic bacterial infection may be important. Since the A1298C mutation can lead to excess ammonia, one can address these elevated levels with things like charcoal/magnesium flushes, Yucca Root, and L-Ornithine. Keeping ammonia low helps preserve BH4 levels. Low doses of BH4 may be helpful after one's methylation cycle is fully supported. All of Your Other MutationsNow we are going to look at all of your mutations. You do not necessarily need to worry about all of these mutations, but certain mutations may cause problems in certain individuals. Genetic Genie does not look at the expression of your genes, it only looks at specific gene SNPs. Keep in mind that even if you are homozygous or heterozygous for a certain mutations, it doesn't necessarily mean there is a problem with the functioning of that gene. You have 3 homozygous (+/+) mutations and 9 heterozygous (+/-) mutations. Here are your homozygous mutations as indicated in your SNP gene table above (not including MTHFR): VDR Taq MAO-A R297R CBS A360A CBS Mutations CBS (cystathionine beta synthase) catalyzes the first step of the transsulfuration pathway, from homocysteine to cystathionine. Dr. Yasko considers addressing CBS mutations as first priority aside from addressing the gut. CBS defects are actually upregulations. This means the enzyme works too fast. In these patients, it's common to see low levels of cystathionine and homocysteine since there is a rapid conversion to taurine. This leads to high levels of taurine and ammonia. The NOS mutation can exacerbate ammonia issues. Furthermore, addressing CBS can help lower excessive levels of taurine and help detoxify ammonia. Dr. Yasko recommends that one supports their CBS enzyme for at least 6 weeks before starting methylation supplements. When one tries to take nutrients to support their methylation cycle before addressing the CBS upregulation, all the nutrients basically lead to nowhere. Instead of generating glutathione, the supplements may deplete the rest of the cycle. Addressing the CBS Mutation Before one starts adding supplements, it may be a good idea to get a baseline UAA from a doctor. This will determine one's Taurine levels. After about 4-6 weeks of following the CBS protocol (outlined in the book Autism: Pathways to Recovery), one should retest their UAA. Once one's UAA is at 50% or below, one can add the methylation supplements. It's important to regularly use UAA testing as taurine should remain at 50% or less. If taurine climbs one may need to address ammonia. Yucca Root and Charcoal/Magnesium flushes can help address high ammonia levels. High doses of L-Ornithine may be effective as well according to medical studies. The CBS mutation not only leads to excess taurine, but can also lead to excess sulfur groups. For this reason, it may be a good idea to limit sulfur intake. Excess sulfur intake can trigger a stress response or chronic stress. Sulfur is normally bound to amino acids, but the CBS upregulation can instead release the sulfur groups to sulfites in the body. There are many things one may need to avoid with a CBS upregulation. Some of the items include garlic, broccoli, eggs, onions, legumes, meat, Epsom salt baths, alpha lipoic acid, glutathione, chelating agents such as DMPS, NAC, Milk Thistle, various other supplements, and much more. Please look to other sources for foods and supplements that are high in sulfur. Supplementing with molybdenum may help as excess sulfites deplete it. Manganese is also important in ammonia detoxification. A Low protein diet can help as the body will have less ammonia to detoxify. It's important to measure molybdenum and manganese with a minerals test before supplementing. BH4 can also become depleted with a CBS upregulation. BH4 helps regulate neurotransmitters and mood. Other mutations, such as MTHFR A1298C, Chronic bacterial infections, and aluminum can also lead to low BH4 levels. Lack of BH4 can lead to mast cell degranulation and possibly mast cell activation disorder (MCAD). While difficult to obtain, BH4 supplementation may help in the presence of BH4 deficiency. Other supplements that may help are Slippery elm bark for the gut. And according to Dr. Yasko Molybdenum, EDTA, carnosine, and zinc may help balance the copper/zinc ratio. The CBS Upregulation is a complicated subject and for more info, I suggest purchasing or finding the book Autism: Pathways to Recovery. Searching for other websites or online support groups talking about the subject may be of help as well. VDR MutationsVDR (Vitamin D Receptor) encodes the nuclear hormone receptor for vitamin D3. Low or low normal vitamin D values are often seen in those with chronic illness and even the general population. Low vitamin D is related to a lot of neurological and immunological conditions. Vitamin D stimulates enzymes that create dopamine. VDR Fok has been associated with blood sugar issues and poor pancreatic activity. With COMT V158M + and a VDR Taq + status, the body may have further trouble tolerating methyl donors. VDR Taq (-/-) individuals may already have higher levels of dopamine, and it's worth noting that combinations of variations COMT and VDR Taq can lead to a wide range of dopamine levels. Those that are VDR Taq (+/+) and COMT (-/-) may have lowest dopamine levels. Nutritional support of VDR Mutations Dr. Yasko advises patients to rotate methyl-containing supplements (instead of using them all daily) for those with COMT V158M + and VDR Taq (-/-). Ginkgo biloba may increase dopamine uptake. Small doses of Mucuna Pruriens contains natural dopamine, and can be helpful for those with low dopamine. VDR Fok + can impact vitamin D levels. Research shows that supplementing vitamin D may be beneficial. Sage and rosemary support vitamin D receptors. It may be necessary to support the pancreas when having a VDR Fok + mutation using vitamin and digestive/pancreatic enzymes. MAO-A R297R MAO-A (Roamine oxidase A) is a critical enzyme involved in breaking down important neurotransmitters such as serotonin, norepinephrine, and dopamine. While a homozygous (+/+) mutation is very common, prolonged periods of stress, violence, or trauma can lead to epigenetic changes that further decrease enzyme activity. On the table above, males only have one allele since the gene is inherited through from their mother since it is located on the X chromosome. Males are more likely to have this mutation, represented on the table as homozygous (+). Only females can be heterozygous (+/-) for this mutation. When a (+/+) MAO-A mutation is combined with a (+/+) or (+/-) COMT V158M mutation, one may be more prone to develop Obsessive Compulsive Disorder (OCD), mood swings, aggressive and/or violent behavior, and personality disorders. Chronic infection can deplete tryptophan stores, and this can be tested with an organic acid test (OAT) and urine amino acid tests (UAA) according to Dr. Yasko. This test may indicate high levels of 5HIAA (5-hydroxy indole acetic acid). Nutritional support of MAO-A R297R Dr. Yasko says that her Mood S RNA formula and 5HTP may help balance serotonin. Furthermore, she satiates that BH4 deficiency (often caused by aluminum toxicity), increased levels of ammonia, and MTHFR A1298C are all factors that can negatively impact serotonin levels. There is not a whole lot of information out there on how to increase the activity of the enzyme. And while not nutritional, there is a product called Respen-A developed for Autism with intention of increasing MAO-A activity. Respen-A can only be obtained from a few compounding pharmacies and requires a prescription. Here are your heterozygous mutations as indicated in your SNP gene table above (not including MTHFR): COMT V158M COMT H62H ACAT1-02 MTR A2756G MTRR A66G MTRR A664A BHMT-02 BHMT-04 BHMT-08 Addressing ACAT and SHMT SNPsACAT1-02 (acetyl coenzyme A acetyltransferase) plays a role lipid metabolism and energy generation. It can also deplete B12. As with CBS, Dr. Yasko views this as a first priority mutation. Going by Yasko's clinical experience, she says to address them first if you have elevated iron on a UEE, elevated iron on a UEE test, Short Chain Fatty Acid (SCFA) imbalances on a CSA test, suberic acid, beta hydroxyl methylglutaric acid, or other ketone and fatty acid metabolites imbalances on a MAP or OAT test; or if there are severe gut issues or muscle weakness (which can be related to aluminum retention)". She says people with ACAT or SHMT are more likely to experience gut dysbiosis. Because of disrupted flora, microbes may have an affinity for and retain toxic metals. Stabilizing the gut environment is very important. More info to come as Genetic Genie continues to research these SNPs. MTR/MTRR MutationsMTRR (Methionine synthase reductase) helps recycle B12. The combination of MTR and MTRR mutations can deplete methyl B12. MTR A2756G, MTRR A66G, MTRR H595Y, MTRR K350A, MTRR R415T, MTRR S257T, and MTRR A664A all work together to convert homocysteine to methionine. MTR (5-methyltetrahydrofolate-homocysteine methyltransferase) provides instructions for making the enzyme methionine synthase. Methionine synthase helps convert the amino acid homocysteine to methionine. To work properly, methionine synthase requires B12 (specifically in the form of methylcobalamin). An MTR A2756G mutation increases the activity of the MTR gene causing a greater need for B12 since the enzyme causes B12 to deplete since it is using it up at a faster rate. Mutations in MTR have been identified as the underlying cause of methylcobalamin deficiency. Megaloblastic anemia can occur as a consequence of reduce methionine synthase activity. A homozygous mutation of MTR A2756G is relatively rare (<1%). Some studies have demonstrated that people with a combination of MTHFR C677T and MTR A2756G have persistently high homocysteine levels unless they are treated with both B12 and folate. Nutritional support of MTR/MTRR According to Dr. Yasko's clinical experience, one should first take into account COMT V158M and VDR Taq status. She finds that those with COMT V158M + and VDR Taq - mutations often don't tolerate methyl donors well. She says that those with these mutations should carefully balance their ratio of Hydroxyl B12 and Methyl B12. She often suggests low dose cyano B12, adenosyl B12, and vitamin E succinate. High dose methylcobalamin (5 mg per day and above) may be implicated and necessary with this mutation - especially if one is homozygous and/or has MTRR + mutations. The level of B12 one needs depends often depends on the number and combination of these mutations. Like everything else, one should slowly build up doses of both methylcobalamin and/or hydroxocobalamin to avoid adverse effects. DMG and the supplement TMG also stimulate the BHMT pathway to convert homocysteine to methionine, but one should take caution if they are sensitive to methyl donors. Patients with MTR/MTRR may also benefit from the combination of GABA and L-Theanine. L-Theanine is a methyl donor. They may also benefit from taurine, Pycnogenol® pine bark extract, and grape seed extract. COMT MutationsCOMT (catechol-O-methyltransferase) helps break down certain neurotransmitters and catecholamines. These include dopamine, epinephrine, and norepinephrine. Catechol-O-methyltransferase is important to the areas of the pre-frontal cortex. This area of the brain is involved with personality, inhibition of behaviors, short-term memory, planning, abstract thinking, and emotion. COMT is also involved with metabolizing estrogens. COMT (-/-) individuals can usually break down these neurotransmitters efficiently, but COMT (+/+) individuals may have trouble breaking these chemicals down from impaired function of the enzyme. With a COMT + status, people may have trouble with methyl donors. This can lead to irritability, hyperactivity, or abnormal behavior. They also may be more sensitive to pain. Nutritional support of COMT mutations Since COMT + individuals often have trouble tolerating methyl donors, they tend to do better on a combination of hydroxy B12, adenosyl B12, and/or cyano B12. Methyl B12 is usually much easier to tolerate for those that are COMT (-/-). BHMT mutationsBHMT (betaine homocysteine methyltransferase) acts as a shortcut through the methylation cycle helping convert homocysteine to methionine. The activity of the enzyme can be negatively influenced by stress. The Information on this enzyme related to methylation is mostly based on Dr. Amy Yasko's clinical experience and research. According to Dr. Yasko, a homozygous mutation of BHMT 01, BHMT 02, BHMT 04, can produce results similar to one with a CBS upregulation even if you don't have a CBS upregulation. In her book, Autism: Pathways to Recovery, She also states that a BHMT 08 mutation may "increase MHPG levels relative to dopamine breakdown (HVA)". This can result in attention type symptoms. It is common to see elevated glycine in someone with a homozygous BHMT 08 mutation. Addressing the BHMT mutations According to Dr. Yasko, limiting taurine for BHMT 01, 02, and 04 may be helpful, and supplementing NADH, SAMe, and DMG may help with BHMT 08 + status. According to the Heartfixer Analysis, one may bypass the dysfunctional enzymes by stimulating the BHMT pathway to convert homocysteine to methionine in several other ways. Phosphatidylcholine or phosphatidylserine can stimulate the BHMT pathway. A good quality lecithin is a good source of phosphatidylcholine (it usually comes from soy, eggs, or sunflower seed). Egg yolks are a good source of lecithin as well. TMG is also an option, but one should take caution if they are sensitive to methyl donors. If you have a BHMT 01, BHMT 02, or BHMT 04 mutation and don't have a CBS mutation, information about CBS was not included in your report. If you have these mutations, you can find our info about addressing the CBS upregulation at http://www.geneticgenie.org/all-mutations.
  11. Very interesting, thank you for posting! My son is 3.5 and is type GG for the SNP rs1800629, however I don't believe his trigger is strep. He has never come back positive for strep - throat swaps and bloodwork. Awaiting Cunningham Panel results.
  12. oh and also, yes, he has had 3 or 4 strep throat cultures - all negative, and 2 strep titers blood draws - both negative. Strep may or may not have been the original cause, but his trigger now is anything - a cold, flu, etc. His stuttering lasted about 4 weeks and as quickly as it started, it disappeared. Seems he moves on from one thing to the next. Right now it is a "hitting compulsion" - to hit himself, us, his brother, objects, and his tics 2 weeks ago were so horrible my husband wanted to take him to the ER. Head banging, screaming, grunting, sniffing, stomping, jumping, hitting himself and hitting other things, hitting his foot against the floor. Not gone but much better now.
  13. Hello! I just wanted to say THANK YOU to everyone who replied to my post. I have so much more hope now than I did back when I posted the original message. Augmentin has been huge in helping our son, although it isn't the full answer - we are still on the journey to find out exactly what is causing this and exactly what we need to do. But thanks to you guys I did end up getting him tested for MTHFR (did the 23andme saliva test). He is compound heterozygous for both MTHFR gene mutations. This could be huge for him! We finally got to see Dr A just yesterday and will be starting methylfolate and methlcobalamin tomorrow. His vitamin B12 level was 1439 when the normal range is 243-894 (just building up in his system but not being used). His vitamin D is 15 when the normal range is 30-100 (will the vitamins she prescribed help this as well? I can't remember what she said about that). Going to test for mycoplasma, coxsackie, West Nile, HHV6, and Lyme in September while he is under anesthesia having a lipoma removed, and currently waiting on our Cunningham Panel results (did that while he was under anesthesia having a cavity filled). But thank you so much, and to anyone facing a bipolar diagnosis keep searching and trying things and don't give up!
  14. Hi! Thanks so much! Do you know what the "normal" cut off number for the CamK is? Is your son doing better now than he was 3 years ago even though his numbers now are higher? My son was doing much better yesterday, today he is doing great. They mailed our Cunningham Panel today but I think we'll wait till the next flare...although fingers crossed there will never be another one ( =
  15. Thank you! Do you mind posting the numbers you got from all 3 times?
  16. Hi! Oops - my bad - I totally meant to write that it causes Tourettes-like and OCD-like symptoms...sorry! If my little guy wasn't diagnoses with PANS he would have definitely been diagnoses Tourette's - he has multiple complex motor & vocal tics going on a year. They got way better but just started up again with a vengeance from a cold. My heart goes out to everyone suffering from this!
  17. Hi! I am peeking in on this forum from the PANS/PANDAS forum where I usually am & getting lots of helpful diet & herbal ideas for my 3.5 year old. I have a question...have you ruled out PANS/PANDAS as a diagnosis? It causes Tourette's, OCD, & other symptoms but is completely due to Strep or another virus or bacteria. Your son being so young & also improving during his recent illness makes me wonder....my sons tics nearly go away during an illness but get way worse after.
  18. My 3.5 year old was doing great for about 30 days on Augmentin. Then he got a cold and after it had subsided, many of his symptoms came back including horrible tics - gasping, sniffing, grunting, stomping his feet, hitting his hand against things including his teeth, jumping. He had rages, crying outbursts over the smallest things, bad language returned, calling us names, peeing his pants, wet the bed, and I think that is it. It's been a few days and things are definitely starting to get better. His mood is much improved and tics are a bit better but definitely there. We are supposed to be getting the Cunningham Panel in the mail this week. Should we do it even if he is still getting better, or wait until the next relapse (probably his next cold). I just want to be sure our results are accurate. Thank you!
  19. He has only had 1 fever since this all started and yes - he was WAY better with tics, rages, etc...he basically just laid there and slept or watched TV or let me hold him in my arms. As soon as he started to feel better he was ticcing 45 times a minute and trying to physically hurt me and even saying bad words in his SLEEP. I am starting to think of it as the calm before the storm. Anyone else get the same reaction to a cold? When he does great I always think we've beat it, but near the end or as soon as he is better it all starts again. We are in the midst of a bad flare from him having a cold over a week ago, and calling our Dr to order the Cunningham Panel tomorrow (to convince my husband, I am SO convinced).
  20. Thanks everyone for your responses! So we have decided to order the Cunningham Panel for our 3.5 year old son. He was doing amazing on the Augmentin (after 50+ days of Keflex and Zithromax not working) but got a cold around day 30 and after it was over everything started coming back. Rages, fears (he can't walk under our smoke detectors by himself right now), aggression, tics way worse.... I can't believe it but my husband STILL can't see that something is very wrong...he does not believe this is PANS, he believes it is a behavioral thing and possibly Tourettes. He always forgets how our son used to be when he was "himself"...even though that was only a week ago! Fortunately he's agreed to do the Cunningham Panel so we can know once and for all. My question is - we won't be able to do it for 7 days - hoping it will arrive in time to our Neurologist's office for us to do it there at our follow up appointment on the 15th. Our son has been so unpredictable in the past, going from horrible and then back to normal out of the blue. This morning was absolutely horrible, then after Ibuprofen he didn't have a single tantrum. But by nighttime when the Ibuprofen should have worn off he was still mostly back to his sweet self. I want to be sure we do the Cunningham Panel at the right time, I am so scared of a false negative. If he is doing well in 7 days should we wait on it until another flare?
  21. My little guy 3.5 years old seems to get BETTER during a cold or fever, and then as soon as he is well from it all his symptoms start to come back. He just finished 90 days of antibiotics and did AMAZING on the last 30 days once we switched to Augmentin. He got a minor cold while he was still on the antibiotics and did great through it, in fact most of his tics were gone. I thought finally his immune system had healed after all these antibiotics. But sure enough he got a bloody nose two days in a row (this seems to happen most times he has a relapse) and then started with arm jerking tics he hadn't had in forever (I have also noticed this happen 3 times before he's had a relapse - these same arm jerking tics and then everything goes bad within minutes or hours). Does this sound typical to PANS? My thinking is that when he is sick his body actually has something genuine to attack and leaves his brain alone, but when the illness is over he has tons of antibodies built up from fighting the cold and they attack his brain even worse and cause the flare.
  22. Thx everyone! From what I was reading on the Internet 59 sounded very high...maybe not? I will call the Neurologist & see if the number was lower on his last test. He was tested for Mycoplasma & MTHFR but the lab messed those up & we are going to redo Mycolasma & rely on the 23andme I just ordered for the MTHFR result. I don't think she tested for any other infections but I'm going to request Lyme...anything else to look for?
  23. My son was diagnosed with PANS over 3 months ago and we are 90+ days on antibiotics. Only the last 30+ have been working (Augmentin) - before that Zithromax & Keflex didn't work at all. He is only 3.5 years old but PANS has affected him badly. Thank God this past month he has had so many 95% back to normal days. He got his first cold since starting antibiotics about a week ago and things started resurfacing a bit, but for the most part he got through it great...his first illness without things becoming horrible again. Right now he is about 85% himself but I think his body is still fighting off the cold. That is our VERY brief history, now my question.... Back 7 MONTHS ago when I first thought this was PANDAS/PANS and his pediatrician sent him for bloodwork, it came back negative for strep and she said everything else looked normal. Just elevated Segmented Neutrophils (52 when the range is 25-50). I just tonight found his paperwork while going through my office though and decided to look at it again, and I saw that he also had elevated AST - 59!!! The normal says 10-50. Nearly all the rest of his bloodwork is on the low end. His ALT is 19 (range 2-41). Am I wrong for thinking she should have been concerned about a AST blood level of 59? From what I just read: AST Levels: normally found in a diversity of tissues including liver, heart, muscle, kidney, and brain. It is released into serum when any one of these tissues is damaged. Makes a lot of sense to me that it was showing inflammation in his brain from PANS, but she said his levels were normal and refused to put him on antibiotics. It took another month and 2 more illnesses before she would prescribe an antibiotic, and he was back to himself in 5 days. Now we are under the care of a PANDAS Neurologist, but still waiting to receive our bloodwork results in person (although the nurse said they looked normal).
  24. Thx all! I just remembered someone told me in a post I wrote a while back that they had a spreadsheet they could email me for symptoms tracking - rowingmom was that you? I would love to do that. I have a lab order for the MTHFR and Mycoplasma tests that the lab messed up the first time, but if I have to go back again I would also like them to test for Lyme so I would need a new order My 3.5 year old was pretty traumatized even though we used Emla...the 3rd time they took 1.5 hrs to get us in and the EMLA wore off and they had to poke him twice...just a really difficult experience, so I want to get everything we need in one visit if possible. However now we are considering the Cunningham Panel. I believe this is PANS (not sure about PANDAS as his blood never tested positive for strep), but my husband has doubts and all of his family too. It would just give us all peace of mind to be able to rule PANS in our out and to be able to show his pediatrician as well...there are so many doubts from people - they can't understand it unless they've experienced it. I even second guess it all the time even though all the signs are there. A question - can MTHFR mutation be diagnosed by the 23andme saliva test?! If so, is it as accurate and revealing as the blood test? Nora said the MTHFR test is expensive and might not be covered under insurance, so if I can find that out through the 23andme test that we are planning on doing that would be great!
  25. Mayzoo - I called the lab last week to request the insurance codes. Here is what he told me: 83520 - 4 times 88230 - 1 time 86352 - 1 time My insurance is BCBS and they only (maybe, depending on what reason the lab gives for it) will cover the 88230 code, but we will still submit it with our fingers crossed.
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