fuelforall reacted to formedbrds in missing link between brain and immune system found
As pandas parents we know first hand that the immune system affects our children's brains. Now they have found that missing link. Any doctors or scientists here with input on how this information can help our children?
fuelforall reacted to searching_for_help in The media and vaccines, important for all
No matter what your take is on vaccines, I think this video is important for all. I am not "pro-vaccine", and not necessarily "anti-vaccine." My friends and family on Facebook seem to think you have to be either for or against. Personally, I have made some people very angry at the mere mention some vaccines MIGHT not be safe! I do believe some vaccines have saved lives, and others are dangerous. I also know that "anti-vaccers" are being blamed for breakouts that are really due to some of the vaccines not being affective, and the CDC knows this but doesn't correct the situation. This video brings up some of my concerns that are rarely discussed, and it's not so much the thimerosol (although that is important), but the way the vaccine manufacturers are making a fortune off these vaccines and our government has made it where they can't be sued. These companies get sued for billions of dollars for their shenanigans with their other drugs, why would we expect them to be honest about research with the vaccines, when they know they can't be sued?
This video is of Bill Maher and Robert Kennedy, Jr. Kennedy points out the CDC can't be trusted, which I agree they have been bought off. Revolving door with lucrative paying jobs between the CDC and the vaccine manufacturers. He even mentioned Dr. Offit, his patents and the money he made off the deal. He also points out that REAL science is not always in agreement with the safety the CDC claims, but everyone blindly follows the CDC recommendations. (I don't think he pointed out that the pro-vaccine movement will immediately ruin anyone's reputation if they suggest ALL vaccines and the schedules aren't perfectly safe, but I see this all the time.)
And my favorite is one of Bill Maher's comments. It has to do with what I consider my more "educated" friends, who on Facebook will literally call anyone who questions vaccines "idiots" and "dangerous". They completely trust the "industry", and although I think it's pretty clear Maher is for vaccines and doesn't know much about the discrepancy, he thinks it odd they put so much trust into for-profit companies that can buy off people. So do I.
Here's the link, and I apologize if someone has already posted this one.
fuelforall reacted to MomWithOCDSon in MRI's
In one of her presentations, Dr. Swedo shows either an MRI or a PET scan (sorry . . . don't recall specifically which) that illustrates a "swelling" or enlargement of the putamen and caudate prior to plasma pheresis and then one after the procedure which shows those parts of the brain have receded to "normal" size.
fuelforall reacted to cynditk in Michel12 feeling hopeless
Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey:
I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/
I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.
fuelforall got a reaction from sriramcs in Is one of the symptoms of PANS brain fog/zoning out?
Hi Concerned Dad,
Yes I know that look well and yes it is PANS related.
I wouldn't go to too much trouble with EEG's and such but....
you just have to treat the PANS. The zoning out is one of the symptoms. Yes.
fuelforall reacted to mama2alex in Vaccine Exemptions in CA
A bill has been proposed in CA to eliminate the personal belief and religious exemption for vaccines (SB277). If you live in CA and feel it's important that parents maintain the right to refuse or choose the timing of vaccines and other medical procedures/medicines for their children, please join the Facebook group "Californians for Parental Rights and Choice." Here's a description:
"We are a grassroots group of parents from California who believe it is in our best interest as a society to maintain freedom of choice for what we put into our children’s bodies. We are concerned about the bill (sb277) being proposed to eliminate the religious and personal belief exemption from vaccines and we are ready to fight every step of the way. We gather together to join forces against a government that has no right to take away our parental freedom to protect our children and make decisions in our children’s best interest. We are against mandatory vaccines."
They currently have over 3,300 members and are organizing calls and letters to CA legislators. There will also be a protest in Sacramento at some point.
fuelforall reacted to sf_mom in Insurance Appeal for IVIG (UHC PPO)
We tracked IgG Subclasses inclusive of IgA and IgM over time which got worse (not better), long term antibiotic use and known chronic infections of TBI 'Tick Borne Infections' and viruses. We had no problem qualifying for monthly in-home nursing services and IVIG as a result.
It is important to run subclasses via same lab pre-IVIG (every six months), during IVIG (just prior to each infusion) and post IVIG (about every three months). These records are invaluable to prove SID 'Selective Immune Deficiencies' and to qualify for continued treatments.
We did not have to revaccinate either as a result of our ongoing records which was important to us since our older son's sudden on-set was 3 weeks post MMR and strep related illness.
fuelforall reacted to pr40 in Lightning can't strike twice right?! Please no!
early intervention is important. One could thing is that you know what to do, so do it. Start with ibuprofen, find a dr willing to treat, and hope for the best.
Look at it this way, you are in a better position to help the second child.
I am sorry about your husband. It is really important that parents are the same page. I have the same problem with my wife. It seem sometimes that I have three PANDAS around me.
fuelforall reacted to rowingmom in Supplements to support metal detox?
I would recommend a metal binder. As metals are released from where they have been sequestered, they will enter circulation and hopefully be shunted to the intestine. Taking a metal binder (we use food grade diatomaceous earth) will ensure that they are not reabsorbed again through the intestinal lining.
Others use bentonite or zeolite.