mdmom

I never heard the term hypercoagulability until this post, but I guess this is what our LLMD says our daughter has when she describes her blood as being "thick," due to elevated VEGF. Am I right? If so, my DD13 takes Wobenzyme 5 tabs first thing in the morning every day. It's supposed to help thin out the blood, much like aspirin. It's sold at the Vitamin Shoppe.

My son has successfully used Melatonin 3 mg 1 hour before bedtime. He takes the sublingual kind that melts under the tongue. HTH.

When I told our vet about the weirdo infections in our house (Babesia, Bartonella, Brucella, strep, mycoplasma), she did not hesitate to put our cat and dog on 8 week of abx. Not sure if it helped and I did have to clean up pet vomit occasionally because we treated with Doxycycline. But it gave me a little peace of mind.

I will PM you a name.

Not sure what airline are using, but I used Southwest 2 years ago when my son's symptoms were worse and his anxiety was very bad. We called ahead and a week before the actual flight, a customer relations person issued us temporary boarding passes, took us on a tour of the terminal (we got to go through security) and boarded the plane when it was between flights. It made the trip so much smoother since my son knew what to expect.

I am desperate to support my case to the insurance company (yes, I've been at this since May) that my DS15 cannot be vaccinated to prove the CVID diagnosis because it could exacerbate his PANS/PANDAS symptoms. So in desperation I took a field trip to the Library of Congress on Saturday to dig up some articles that might help. Here is the link to the abstract for the most helpful article. It lists PANDAS as an example of how an infectious agent can lead to an autoimmune response. It also mentions many other autoimmune disorders that have at least been temporally associated with onset/exacerbations following vaccinations (e.g. Guillian Barre). Thought this might be useful to some of you out there. The following link is for the abstract only; if you want the full article you have to pay for it (which is why I went to the LOC to get a free copy). If you PM me your personal e-mail I can forward my copy of the full article (PDF format). I could not figure out how to post the PDF on-line. http://www.ncbi.nlm.nih.gov/pubmed/16126512

Here's a link to the WSJ article in today's issue: http://online.wsj.com/article/SB10000872396390444273704577633412579112188.html Why is it so easy to get a new mental illness disorder listed as a real diagnosis and PANDAS/PANS still doesn't have an ICD-9 code? This infuriates me. edit: sorry about the misspelling in "mood" - I can't figure out how to edit the topic line

Sorry to hijack the post.... Pandasmcnuggets --- I Would love the link to the article you are talking about. My son's IVIG approval from insurance is still being held up because I refuse to put him through a vaccination challenge to prove CVID. I've been combing the internet for months looking for vaccine/autoimmune illness articles. Pandaskid11 - Our DS15 has not outgrown PANS/PANDAS, but it does seem he is out of the "exorcist" phase and he is reacting less dramatically to new illnesses. But we've been treating aggressively for almost 2 years now.

Dr. T is who told us to avoid Strep Thermophilus strain in probiotics. However, we have not found a potent enough probiotic without this strain. We use VSL#3 and it the strep in it doesn't seem to bother my son. I'm sure others will have some input.

My DS15 has been on Valtrex daily for about 1 year. He noticed he felt better soon after starting it. He is now dealing with possible kidney issues (protein in urine) and the nephrologist told us that Valtrex is nephrotoxic. Until we get more answers on the kidney issues (2 docs think it is immune related), I asked our LLMD to stop the Valtrex. LLMD replaced it with Lauricidin. Anyone have experience with this supplement?

My DS15 has been on Valtrex daily for about 1 year. He noticed he felt better soon after starting it. He is now dealing with possible kidney issues (protein in urine) and the nephrologist told us that Valtrex is nephrotoxic. Until we get more answers on the kidney issues (2 docs think it is immune related), I asked our LLMD to stop the Valtrex. LLMD replaced it with Lauricidin. Anyone have experience with this supplement?

We are in the same boat and have seen some of the top therapists in our area. Nothing helped. My DS15 has had so many therapists, he now is in "shut-down" mode and won't spill his guts to anyone. We are taking drastic measures and traveling to USF in November for 3 weeks - and my son is on board with the idea because he is tortured by his residual, habitual OCD thoughts.

NancyD - Thanks for sharing your story. I have a few questions: Do you know how much Glutathione your daughter was getting each month? Also, do you know what diagnosis code was submitted to BCBS for coverage? I know it was a long time ago that you did this, but thanks in advance for any info you can dig up. I have BCBS and never thought to submit my claims for this. Also, I administer the IV glutathione at home, so it's likely it wouldn't be covered because of this. LLM - Thanks for chiming in - I always appreciate your understanding of methylation issues. DD is doing methyl-B12 injections 3x/week, and supplementing with Thorne's Methyl Guard and 1200mg NAC daily. And I'm with you - why keep giving her something that is doing the work for her rather than training her body to do it's own work. I will see LLMD this Thurs, so I have lots of questions.

Forgive me if I have asked this before, as I think I remember responding to your post awhile back. Have you ruled out other infections? Lyme, co-infections, Mycoplasma, viruses, etc? Even if you are not dealing with Lyme, a Lyme-literate doc (LLMD) could be a good resource. LLMD's are often good at finding hidden infections. Parasites commonly cause itching. I don't have much else to offer, other than my daughter dealt with extreme bouts of itchiness and once we addressed intestinal parasites, the symptom abated.

My DD13 has been receiving IV Glutathione for about 6 months now (1x/week - 5ml glutathione). I cannot tell if it is helping since we are doing so many different interventions simultaneously. Our LLMD recommended IV glutathione after testing her levels through Great Plains Lab. Doc said it was the lowest glutathione level she had ever seen. This is sad to say, but I honestly cannot keep up with the expense of this therapy, especially when I am not sure if it is helping. It is $95/dose. Read my signature line to see what DD is dealing with (she has been on IV treatment for infections since March, but under treatment since May 2011). She is also MTHFR homozygous for the 677 gene mutation, so we are pretty sure she is not an efficient detoxer. I welcome opinions. I don't want to make a decision solely based on cost.

My DD13 has been receiving IV Glutathione for about 6 months now (1x/week - 5ml glutathione). I cannot tell if it is helping since we are doing so many different interventions simultaneously. Our LLMD recommended IV glutathione after testing her levels through Great Plains Lab. Doc said it was the lowest glutathione level she had ever seen. This is sad to say, but I honestly cannot keep up with the expense of this therapy, especially when I am not sure if it is helping. It is $95/dose. Read my signature line to see what DD is dealing with (she has been on IV treatment for infections since March, but under treatment since May 2011). She is also MTHFR homozygous for the 677 gene mutation, so we are pretty sure she is not an efficient detoxer. I welcome opinions. I don't want to make a decision solely based on cost.

I am not well-versed in the causes of acne, but I do know 2 people who have treated it medically. One had chelation for high mercury and her acne cleared; the other is treating with abx - doc says it's bacterial. So my point is this: it may not be hormonal but something else internal, which is why behaviors might be coinciding with acne flairs. Just a thought....

I'm confused about the recommendations you were given. Tindamax is a cyst-busting antibiotic that is often pulsed along with other antibiotics. We used it during treatment for Babesia last year. 21 days of Azithromycin + Mepron. Then the last 7 days of the month we would stop Azith/Mepron and do Tindamax for a week. Praquenil is an anti-malarial. We are also using it to treat Babesia. Do you know if you are treating parasites?

If you are wanting to donate money to help this family, I have the information on how to do this from Beth Maloney. Please PM me your personal email address if you would like the info and I will forward you the email she sent me. It didn't seem appropriate to post the info on a public forum.

PM laurenjohnsonsmom - she might know.

Call Dr. T back and ask for a prescription for EMLA cream. 1/2 hr before you leave for the blood draw, apply cream to area to be stuck. We usually do inside the elbow and some on forearm in case they have to stick your child more than once. Cover area with Saran wrap and secure with tape. Area will be completely numb by the time they will be stuck - prick your child with your fingernail to prove it to her that the area is numb. Finally - give a reward - my children always picked their rewards before the draw so they could focus on something positive.

I third that motion. Parasites are usually the culprit when you get an increase in symptoms around the full moon. We also see symptoms regardless of the moon phase when the sun goes down. Yuck.

My son is heterozygous 677 and 1298 MTHFR gene. He takes .3 ml of compounded Methyl B12 sublingual daily (he refuses to take the injectable, but this is the oral version). He also takes Thorne MethylGuard 2 caps daily. My daughter is homozygous for the 677 MTHFR gene. She takes .3 ml of injectable Methyl B12 3x/week and 2 MethylGuard daily. I know others have reported over-methylation symptoms, but this is not the case with my children.

I've already contacted some of the orgs you listed. Not much help to me so far. But I have an idea on who might be able to help with the meeting in D.C. on 10/12. I am darn fed up with fighting a losing battle with our insurance co for IVIG and I need to turn my negative energy into something positive. I'm in the Baltimore/DC metro area. PM me and we can chat.

collenrn... I had to look back in my notes from 2011 to answer your question about Zith and Alinia. Yes, we did use this combo in the beginning of treatment. I think we only did one round of Alinia/Zith and then moved on to 5 months of Zith/Mepron. When that combo didn't clear it (my daughter clearly relapsed when we stopped tx), we did Mepron/Azith/Bactrim. This is the combo my husband and I are taking. Both children are taking IV Clindamycin + Mepron (3 packets/tsp/day) + Proguanil Hyrochloride (100 mg 3tabs/day). According to our doc (we have the same one), WA1 is really difficult to treat. We are proof of that. As for my son, he has never tested positive for any co-infections. We just base the dx on his CD57, low WBC and elevated liver enzymes. He is has low total IGG and low IGG subclass 3 and was diagnosed with CVID, so it's no surprise to me that he doesn't make antibodies to these infections. We are about to test through LabCorp (we usually use Quest) for WAI, and Babesia Microti. Sounds weird, but I am hoping he will come up positive eventually.