NancyD

I suggest seeing a doctor who can search for all possible underlying bacterial and viral infections including PANDAS, Lyme, Bartonella, Babesia, Ehrlicliosis, MycoPlasma, XMRV, HVV6, etc., as well as test for MTHFR and KPU. I don't know any MDs in MA who are experienced enough with this (others may suggest someone), so I suggest seeing Dr. B in CT who can get you started down this path, treat if it's PANDAS, and refer you to an LLMD if your DD has any tick-borne infections. Or you can see an integrative MD who has expertise in treating all infections. We live an hour north of Boston and have seen Dr. B and Dr. L, but our greatest success has been working with our integrative MD in upstate NY who has helped us search for and treat underlying causes.

Only problem with Deplin is you CANNOT get it dye-free. Can't even have it compounded. We went with Thorne 5-MTHF. It comes in 1000 mcg and 10 mg capsules (my DD16 takes 10 mg). LLM gets it in liquid form so she can give smaller doses.

LOL! Thanks...we're doing it at the hospital. The oral surgeon and I thought it would be best considering her complex health issues.

Glad it went well! Hope we do as well. DD has to have 4 impacted wisdom teeth removed tomorrow. Had to explain to anesthesiologist why DD cannot have noxious oxide with homozygous c677t MTHFR. He knew nothing about it. Told him I would bring with me some research studies and peer-reviewed articles so he could learn. Doesn't exactly make me feel warm and fuzzy but at least he wants to learn.

I agree completely!!

Here's a link to the SUNY study: http://www.downstate.edu/news_releases/2011/news_release_full26.html This is NOT the MTHFR DNA test. This is to test the anti-Cerebral Folate Receptor Abs.

Kim, it would be better if you could rule out Lyme before doing IVIg or have a couple of months of treatment before proceeding. Some kids with Lyme herx badly with IVIg (though not all). But, if he does have Lyme or co-infections it will be difficult keeping his PANDAS in remission if there is another underlying infection, even with IVIg.

They are finding elevated levels with the c677t mutation. A person who is heterozygous will generally have mild increases in homocysteine levels. And a person who is homozygous will generally have high homocysteine levels. Deficiencies in B vitamins and folate can lead to increased levels of homocysteine.

As far as I know he doesn't do integrative medicine but perhaps others who see him can chime in. I would see an integrative MD, like a DAN doctor. What part of the country do you live?

I hope she won't be holding any cats. Permethrin is supposed to be toxic to cats and fish.

Anyone ever try spraying white vinegar and water to prevent ticks? I know it works with ants (they hate it and stay away). And I read that Brewer's yeast works with dogs by making their blood too acidic for ticks and fleas. Wonder if it would work with humans!

Dr. L is great. She knows what she's doing. Did you rule out other underlying infections just to be sure?

Yes, push LOTS of water every day for a couple of weeks. It is the #1 thing that prevents headaches with IVIg. I usually only give DD benedryl one day after unless she needs it. But I give her 600 mg ibuprofen 3x a day for 2 weeks after. Keep stress to a minimum and lots of sleep. I stopped giving her the ibuprofen and benadryl a couple of days ago. Up until then I was giving every six hours. How long do you continue giving both of those? She isn't drinking as much as she did initially. I will start pushing the water again. I didn't realize she still needed it so much. Thanks for the response and please let me know about the ibuprofen and benadryl. Thanks!!!

Interesting. Glad it's resolving, Nancy. Wonder what the interaction was. Thanks to your thread (and Wendy) I learned about ozonated olive oil paste (O2-Zap). The reviews sound amazing. I just ordered some for my DD's rash on her face.

Headaches are common after IVIg. Is she drinking LOTS and LOTS of water throughout the day? She needs to be fully hydrated and this should help her headaches (in addition to ibuprofen and benedryl). I always have my DD drinks a lots of water one week prior to infusion until 1-2 weeks after. This always seems to do the trick.

Below info from Dr. Jones' website will explain. You should see an integrated MD who knows how to treat MTHFR. You may want to check B, homocysteine, and glutathione levels. There is also a test you can take to check anti-cerebral folate abs. This is part of a research study at SUNY Medical Center. The cost is $100 (insurance will not cover). If you'd like more info on this study let me know. From Dr. Jones Kids website: "MTHFR is a common genetic variant that causes a key enzyme in the body to function at lower than normal rate. This can lead to a variety of medical problems, when people with MTHFR are exposed to more toxins than their bodies can handle. There are over 50 known MTHFR variants, but the two prime variants are called 677 and 1298, the numbers refer to their location on the gene. The routine lab test for MTHFR variant only reports on 677 and 1298 as these are the most studied. "The 677 variant is associated with early heart disease and stroke and the 1298 variant with a variety chronic illnesses. The MTHFR is reported out as heterozygous or homozygous. If you are heterozygous that means you have affected gene and one normal gene. The MTHFR enzyme will run at about 55% to 70% efficiency compared to a normal MTHFR enzyme. If you are homozygous then enzyme efficiency drops down to 7% to 10% of normal, which of course makes a huge difference." "The worst combination is 677/1298 in which you are heterozygous to both anomalies. Many chronic illnesses are linked to this anomaly. 98% of autistic children have an MTHFR anomaly. Fibromyalgia, irritable bowel syndrome, migraines, are all conditions associated with MTHFR anomaly." "MTHFR can make you susceptible to illness because the pathway is the primary source of glutathione production in the body. Glutathione is the body's primary antioxidant and detoxifier. People with MTHFR anomalies usually have low glutathione, which makes them more susceptible to stress and less tolerant to toxins." "As we age MTHFR problems get much worse due to the accumulation of toxins and the cumulative effect of oxidative stress, which ages our bodies." ~~~ Non mutated MTHFR is one of the leading regulatory enzymes of homocysteine metabolism. Homocysteine metabolism is an extremely important factor of our metabolic systems. This process touches many aspects of our general health and is therefore very important. The MTHFR Mutation is a defective enzyme that hinders this process. The mutation of the MTHFR gene is directly related to hyperhomocysteinemia (high or elevated levels of homocysteine). High levels of homocysteine can be attributed to many conditions such as: The condition can lead to high rates of dementia /Alzheimer`s due to a decrease in vitamin B-12. High homocysteinemia can lead to coronary artery disease, common carotid atherosclerosis other Vascular Diseases. Complications in Pregnancy Due To Neural Tube Defects. Atherosclerosis Rheumatoid Arthritis Downs Syndrome Alcoholism Osteoporosis Neuropsychiatric Disorders Non Insulin Dependant Diabetes Early Pregnancy Loss Spontaneous Abortion (Viable Fetus) Placental Abruption, Low Birth Weight Other Conditions MTHFR mutation can be homozygous (2 copies) or heterozygous (1 copy), with more people being heterozygous and carrying only one MTHFR mutated gene. Compound heterozygous (one copy of each mutation). Homozygous, of course, can cause more issues and become more serious. It`s a fairly easy thing to test for by checking homocysteine levels in the blood. Treatment consists of simple vitamin supplements --- FolaPro L-methyl tetrahydrofolate by Metagenics, OR, 5 tetrahydrofolate or methyl folate. Longevity Plus, H.R. T. Plus with 5-tetrahydrofolate. Life Extension, optimized folate (5-MTHF). OR prescriptions like: *Deplin/ 7.5 mg l-methylfolate OR *Metanx-L methyl folate calcium (as Metafolin) 3 mg, Pyridoxal 5` phosphate 35 mg, methylcobalamin 2 mg. OR Methyl B-12 injections The vitamin supplementation is lifelong. After childbirth you may switch from prenatal to a women`s multivitamin. See a specialist to discuss whether you are a candidate for Lovenox. Also, you may consider having a FULL antiphospholipid antibodies panel run. Many MTHFR patients also have Antiphospholipid Syndrome. If you have both, you are a likely candidate for Lovenox (injections of low molecular weight heparin) throughout a pregnancy to prevent clotting. MTHFR mutations interfere with the body`s ability to absorb folic acid. Folic acid deficiencies for babies can cause neural tube defects like spina bifida. In addition, lack of folic acid can cause clotting-related problems. Since the teeniest, tiniest blood vessels are in the uterus, a female can have microscopic clots that don`t harm them, but cut off the blood supply to the embryo/fetus. This can cause implantation problems, m/c, or even stillbirth. So properly treating your MTHFR is critical. MTHFR is one of several different kinds of inherited thrombophilia. (Antiphospholipid Syndrome is acquired thrombophilia.) Please be sure to have your parents and siblings tested for MTHFR mutations as well. If positive, then they should discuss taking baby aspirin and additional Folgard as well (one Folgard per mutation.) During pregnancy adding extra folic acid is suggested beyond the 800 mg. Children will need a children`s multivitamin and later extra folic acid, too. There is controversy as to the importance of homocysteine levels when it comes to MTHFR mutations. MTHFR causes folic acid deficiency, which causes elevated homocysteine levels, which causes clotting problems, which causes infertility or miscarriage. MTHFR causes folic acid deficiency, which causes clotting problems, which causes infertility or miscarriage which may or may not cause elevated homocysteine levels. Homocysteine levels may be checked. Homocysteine levels (particularly in young women) are not an accurate predictor of clotting troubles. Baby aspirin is a blood thinner (relatively mild). Lovenox (low molecular weight heparin) is an anticoagulant (slows clotting.) They have two very different functions in the body. Your doctor may or may not want you to use both. AVOID Laughing gas/Nitrous Oxide - Nitrous oxide uses up vitamin B-12 can cause severe problems or death in people with MTHFR Disorder. AVOID Bactrim DS- In pregnancy it is associated with increased incidence of cleft lip. Otherwise the system is depleted of Vitamin B-12. AVOID SamE, an over the counter product as this S-adenosyl-methionine can further inhibit MTHFR. C77TT is associated with an increase risk of esophageal cancer. MTHFR Disorder is associated with an increased risk for postmenopausal breast cancer, schizophrenia, anxiety, bipolar disorder, migraines, and strokes. It effects of seizures and medications used to treat them. There is a reduced risk of non-Hodgkins lymphoma and acute lymphocytic leukemia in adults.

Awesome, Wendy, I will try to find the ozonated olive oil paste. Thanks! And I will also check out ozonated blood treatments. :-))

I'll PM you a list of tests to rule in/out.

Clindamycin or Rifampin, in combination with a second abx, is often used to treat acute, recurrent, and carrier strep infections. Rifampin must be used with a second abx because strep will rapidly become resistant to it when it is given as a single therapy. My DD never took Rifampin for strep but she did for Bartonella, along with other abx.

I don't see anything that says you can get Livedo Reticularis on the face (usually on the limbs) but here are treatments according to a site at http://www.lookgreat-loseweight-savemoney.com/livedo-reticularis.html:

I think this is what my DD16 has on her face. Very similar to what Dedee describes. Wendy, remember the photo I sent you over a year ago? We thought it was a Bartonella rash, although it was different than the streak marks she had on her body. This is more blotchy. Wasn't it similar to what one or two of your kids have? It's been well over a year since starting treatment for Bartonella and she still has it. Any way to get rid of it? It drives my daughter crazy!

Have you ruled out any other underlying infections, such as Lyme (through IGeneX testing, not standard WB), Bartonella, Babesia, Ehrlicliosis, MycoPlasma, XMRV, etc.? If not, I would do that first before considering IVIg. Even with IVIg your DD's remission could be short-lived if there are other underlying infections. Have you seen one of the PANDAS experts (i.e., Dr. L, B, T, K, M)? Or checked into the NIH IVIg study?

Go to http://www.drjoneskids.com/ and click on Babesiosis Rashes under Rashes. Wow...I didn't' know that Babesia has little pin pricks as a rash. That totally explains my DS's little dots. We already suspected babesia, anyway, and we have been treating for bart and erlichiosis for almost 2 years (he has the bart rash, too.) Seems like everyday I learn something new from all of you! I don't know what I would do without this site

Of course, when taking lamictal, one would automatically think of Stevens-Johnson Syndrome or toxic epidermal necrolysis, but this doesn't sound like that. Still, I would be more cautious on that med and see a doctor if your DS still has it after you switch him back to fish oil. Two years ago my daughter had a rash on her chest that looked like first time out sunburn. When you pushed on it it also went white. Then it went to other parts of her body. Separately she had a round, nasty looking rash on her back that looked more like a bug bite that got infected. When Dr. L saw it she thought it was Pityriasis rosea. It did take 4-6 weeks to go away and I think she was right. Over the past two years we've had other rashes that I think were due to Bartonella -- streaks, red blotchiness, etc. Also little pin pricks, which could be Babesia. I always take photos of our rashes with my iPhone just in case I need to look back on it or share it to a doctor. May want to take two photos -- one with and without hand print.

Could it be some sort of rash?