mama2alex

I've been reading up on Lyme lately, and my understanding is that it does not hang out in the blood - it goes straogjt to the organs. So I doubt you could catch the actual disease through IVIG. I suppose your child could get some antibodies to it through the IVIG, if a donor had been exposed to it, but that wouldn't hurt them.

I just noticed it went up a few days ago. Thank you Sheila! I'm looking forward to the information and discussions - it looks like several people have posted already. We see the Lyme doctor on Wednesday.

We are 4 weeks post 2nd IVIG and have not seen the terrible symptoms you describe, but we definitely saw them after the first IVIG (starting about 3 weeks post). The thing we've done differently this time is to follow a detox regimen our DAN doc recommended. This assumes that the healthy antibodies introduced by IVIG are causing a sudden die-off of various infections. Not sure if this is what's helped this time, or we've just been lucky, but things have been fairly smooth (although not perfect) over the last few weeks. Here's what we're doing: Pushing water (64 oz a day, if possible - for a 65 lb child) 6 Tbsp bentonite clay per day Epsom salts baths several times a week Supplements for thyroid and adrenal support Homeopathic detox drops In addition, the doctor who gave us this IVIG recommended Ester C, folic acid, and omega 3 supplements for 6 weeks post IVIG. We didn't do this last time. I hope things get easier very soon. I remember how hard it was for us after the first IVIG - it was awful, and so scary.

Thanks for updating us! I think the continuing discussion of Lyme is important on this forum. We are seeing an LLMD next week. My son tested positive for Bartonella almost a year ago, but we never really adressed it directly. He had IVIG last winter but then regressed this Spring. He just had his 2nd IVIG a few weeks ago, and we are hoping that this in combination with more appropriate antibiotics will heal him.

For those who replied and anyone else who's interested, I just wanted to give a (happy!) update. He was back in the saddle on Monday and has gone every day this week. Monday was slightly rough when he woke up, but he was good by the time we got there. The principal continues to be really supportive and the teacher was unruffled by the fact that I'm taking him out 10 minutes early every Monday for therapy. Thanks for the supportive responses - Friday was a scary day for me, and I really needed those kind words. LLM, thanks for the great advice - I am incorporating many of your suggestions.

DS10 started 4th grade at a private school on Wednesday and did GREAT the first two days (a few blips at home, but no problem going or staying at school), but today was a disaster. I don't know if he was exposed to something, exhausted from the new schedule and all the new input, or it's just hard being the new kid, but he REFUSED to go today. I finally got him there at 8:30 (they start at 8) and the good news was how brilliant the principal is in working with him! I could have kissed the man. He used humor, was very relaxed, and even when it was clear he wouldn't be able to get ds out of the car, he was very laid back about it. And he told me quietly on the side that he was going to help us get through this. I did finally get ds to go in for 2 hours this afternoon, but that was after making him listen to classical music all day, telling him no tv/ds until he's back in school for 3 days straight, and no playdate with the neighbor boy today unless he goes in this afternoon. And even then, he had a hard time once he got there, and we needed lots of help from the principal. The school seems wonderful, and I do think it's the right place for him, but I'm so worried we're not going to be able to get him there - he's so anxious. We are 3 weeks post IVIG (2nd one) today, so I'm hoping things will improve over the coming weeks.

Here's a link to the consolidated list of doctors by state, which Suzan posted in January. You'll want to check the thread T.Mom mentions above for a posts after January regarding Texas docs, in case they aren't on that list. http://www.latitudes...?showtopic=6428

Hi, I'm so sorry to hear your family is going through this, but glad you found this forum. Did you see Saidie10's post on the doctor she found in San Antonio? If you click on her name (next to her post), then find where it says "Send a Message" and click on that, you'll be able to send her a private message (PM) and get the name of the doctor. Best of luck!

I can email you a great article written by a PANDAS mom and published in a magazine a few months back. It's the best article I've seen to date (especially for teachers/schools). I'll pm you.

Good for her, and you! Love these stories about family members who are 100% behind the moms. Don't forget to include the new NIMH website page. If its a big hospital, that should definitely impress him.

I'll do the same within the hour.

I cried when I saw this post. Thank you for bringing this to our attention Vickie! I can't wait to show our pediatrician.

My understanding is that the white paper hasn't even been started yet, and that it will be submitted to one or two journals to be reviewed before a decision to publish is made. If this is correct, I don't think it will be out as soon as September.

I have a couple of great articles in PDF format. I just sent you a PM.

And you're catching it early - 3 1/2. I'm sorry this is happening, but glad you are figuring it out so early in his life. Hope the appointment goes well and you get a good solid treatment plan in place for him!

How does OLE make abx less effective? Our DAN doctor started my son on OLE recently - he's rotating 5 antivirals, including a prescription and several herbals. DS is still on abx, however, so if OLE impacts it, why would our DAN have him on both at the same time?

Thanks for the information and starting this dicussion Vickie! We don't usually give Alex flu shots and won't be this year for sure, as Dr. K has said NO vaccines for an indefinite time period. I never get them b/c my aunt got Giaume Barre years ago. We did get Alex the H1N1 last year b/c he's had 6 pneumonia's and we wanted to protect him from that - luckily the shot didn't send him into a tailspin. I agree with DC Mom - it's not a simple decision for anyone here. If someone does choose to get the vaccine, please don't get the mist, as it's a live virus and much riskier for these kids. Also, you can/should request single-dose, mercury "free" version.

It's really scary that the Federal Government might take away our choice as to whether to vaccinate or not. Maybe they just took it off the paper to discourage parents from using the exemption. Hopefully they didn't change the law! If they did, can you get a doctor's letter?

I'll PM you. I have a PDF I can email you of Laura Matheos' article for Autism File Magazine. I've given this article to a number of people - it's very clear and comprehensive, but not overly heavy on the science. Also the School Nurse article is good - I can email that too. If you can loan her a copy of Saving Sammy, I think that really helps people "get it."

Dr. K has told us absolutely no more vaccines for our son. I don't know what the other PANDAS docs recommend. For anyone who needs it, here's info about vaccine exemptions (which you use for school purposes) from the National Vaccine Information Center (www.nvic.org): Philosophical Exemption The following 18 states allow exemption to vaccination based on philosophical, personal or conscientiously held beliefs: Arizona, Arkansas, California, Colorado, Idaho, Louisiana, Maine, Michigan, Minnesota, New Mexico, North Dakota, Ohio, Oklahoma, Texas, Utah, Vermont, Washington and Wisconsin. In many of these states, individuals must object to all vaccines, not just a particular vaccine in order to use the philosophical or personal belief exemption. Many state legislators are being urged by federal health officials and medical organizations to revoke this exemption to vaccination. If you are objecting to vaccination based on philosophical or personal conviction, keep an eye on your state legislature as public health officials may seek to amend state laws to eliminate this exemption. Religious Exemption All states allow a religious exemption to vaccination except Mississippi and West Virginia. The religious exemption is intended for people who hold a sincere religious belief opposing vaccination to the extent that if the state forced vaccination, it would be an infringement on their right to exercise their religious beliefs. Some state laws define religious exemptions broadly to include personal religious beliefs, similar to personal philosophical beliefs. Other states require an individual who claims a religious exemption to be a member of The First Church of Christ, Scientist (Christian Science) or another bonafide religion whose written tenets include prohibition of invasive medical procedures such as vaccination. (This kind of language has been ruled unconstitutional when it has been challenged in state Supreme Courts.) Some laws require a signed affidavit from the pastor or spiritual advisor of the parent exercising religious exemption that affirms the parents' sincere religious belief about vaccination, while others allow the parent to sign a notarized waiver. Prior to registering your child for school, you must check your state law to verify what proof may be needed. Due to differences in state laws, the National Vaccine Information Center does not recommend or provide a prewritten waiver for religious exemption because it may not conform with what is required in your state, and may actually draw attention to your child, and you may be singled out and challenged. If you are challenged, you could end up in litigation brought by your state or county health department to prove your religious beliefs. The religious exemption is granted based on the First Amendment of the Constitution, which is the right to freely exercise your religion. Because citizens are protected under the First Amendment of the United States, a state must have a "compelling State interest" before this right can be taken away. One "compelling State interest" is the spread of communicable diseases. In state court cases which have set precedent on this issue, the freedom to act according to your own religious belief is subject to reasonable regulation with the justification that it must not threaten the welfare of society as a whole. However, parents have successfully obtained religious exemptions to vaccination. The constitutional right to have and exercise personal religious beliefs, whether you are of the Christian, Jewish, Muslim or other faith, can be defended. If you exercise your right to religious exemption, you must be prepared to defend it. It is always best to define your personal religious beliefs opposing vaccination in your own words when you write a letter defending them. If you do belong to a church and take the time to educate the head of your local church about the sincerity of your personal religious beliefs regarding vaccination, obtaining a letter from your pastor, priest, rabbi or other spiritual counselor affirming the sincerity of your religious beliefs may also be advisable. Medical Exemptions All 50 states allow medical exemption to vaccination. Proof of medical exemption must take the form of a signed statement by a Medical Doctor (M.D.) or Doctor of Osteopathy (D.O.) that the administering of one or more vaccines would be detrimental to the health of an individual. Most doctors follow the AAP and CDC guidelines. Most states do not allow Doctors of Chiropractic (D.C.) to write medical exemptions to vaccination. Some states will accept a private physician's written exemption without question. Other states allow the state health department to review the doctor's exemption and revoke it if health department officials don't think the exemption is justified

This SIXTH combo of DtaP/ TDaP/DPT etc. is being recommended for exactly that reason Peg. Babies are still getting Pertussis. I suspect there have been many cases in older kids too, which were probably diagnosed as asthma. If the kid was fully immunized it couldn't be Pertussis right? I had a Dr. tell me this herself. She said she had to take swabs and prove to the CDC that it was Pertussis. How well has this vax ever worked? It wasn't dangerous (annoying yes) to the older children, but they didn't belong on a steroid for asthma either. It was pertussis. Wanted to say thanks for posting this information Kim. A few weeks ago our neighbor was told her 11 year old had asthma when she started a cough that wouldn't go away. When the asthma meds had no effect, they changed the diagnosis to walking pneumonia. At that point we talked and I told her about your post, and suggested she just ask them to check. She did and that's what it was! Now another friend's daughter has a cough that won't go away, and I made the same suggestion because the girls were in the same soccer camp. She's waiting for the results. The swab is tough on the kids - they have to stick a q-tip way up their sinuses, which may be why they are reluctant to check for it. But neither girl had the tell-tale whoop sound to her cough. I suspect pertussis is WAY underdiagnosed!

It sounds like you've been very aggressive/proactive! One thing that jumped out in your post was that as soon as you took him off the antibiotics, he started to backslide. Have you had all the members of your family checked for strep - cultures and titers? If someone in your household is a carrier, that would explain why he only does well while he's on the antibiotics. As for Lyme testing, it's tricky, so try to find a Lyme-literate doctor in your area and have the blood tests run through Igenex Labs - they are most accurate, although I understand false negatives are still possible. I believe you can find a doctor by looking on www.ilads.org. I wish you the best in figuring this out. And welcome to the conversation!

Welcome! I'm sorry you've been dealing with this for so long. We've been trying to get our son well for a year, and that has seemed like an eternity. A few thoughts/questions for you: 1. How was Lyme ruled out? By an ER doc with a Western Blot? Many here have discovered that Lyme is an underlying problem for their children, which went undiagnosed for a long time. It can be very tricky to diagnose properly, so you may want to consider revisiting this with a Lyme-literate doctor. 2. Have you had everyone in your household tested for elevated strep titers? Several families here have discovered that they have a strep carrier in the family after working for a long time to get their children well. You may want to have your family doctor run these before you see Dr. Latimer. If anyone is elevated, this is good info for her to have. 3. Did your daughter get better after the initial IV antibiotics? What antibiotics has she been given? Did you ever try a course of steroids? I wish you all the best. From what I hear, Dr. Latimer is wonderful. And you've found a great community here for support, information and ideas. Jennifer

Not sure what the effect of steroids is on the Cunningham results. We did the steroid burst about 2 weeks before we did the blood draw and still came back with a score of 153. Defintely let them know though.

I'm so sorry! Which doctor diagnosed him with PANDAS 4 years ago? What was the treatment?