4Nikki

So the gcmaf treatment is to boost the micro(somethings) that help the little Pac-Mans eat the Nagalase which goes up in count when viruses, bacteria or things like cancer are going on. Basically it’s to help the immune system work better.

Oh Gosh, I have to look it up in the summary. It’s a blood test the doc did and she gave us a summary of the mitochondrial system and said that Dd’s Cells were deficient. The doc also did a mito swab test to check the function of how they are doing. Now this is where I got lost last visit to the doc because DW is a nurse and is usually the one to take notes and explain the stuff over my head, but she was upset with me and wasn’t at the last visit. DD is going for a series of treatments 4 of 10 are at the doctors office and the rest are at home. This is not the IVIG but something to do with gcMAF. I’ve got a little unstanding at a high level of what’s going on but get into the lower level of the details and things get over my head. I don’t get some of the terminology they talk about DW has to explain it more when we get home. Doc does a pretty good job of dumbing it down for me but I get information overload. There’s a lot of good vids on YouTube that explain the mitochondrial system and what can be done to help it out when it’s not working right.

Strep bacteria is known to hide in the tonsils. I'm guessing the same can be true with plaque. Cleaning dislodges the plaque and releases bacteria hiding beneath it.

It looks like there are online purchases available but with all the fake or deluded prescription drugs I’m not sure how you can verify if they are real.

DD symptoms ramp up when a period is coming. She takes boswellia. Before she started taking mitochondrial support supplements, She took Advil cold and sinus which is 200 mg ibuprofen with 30 mg of Pseudoephedrine. 30 mins before symptoms leading to an episode would stop an episode from occurring. It worked so well we got dependent on it for more than a year but then it cause her immune system to attack her thyroid and liver. If it works for you as long as you use it when needed it shouldn’t have any side affects. She took 1000 mg of ibuprofen during flares and it would curb symptoms but not stop an episode. The Advil cold and sinus works way better. DD would also experience symptoms with bacteria infections. I think urine test are less costly than blood tests. You can also ask the pharmacist for over the counter anti inflammatory alternatives.

Many of us get caught up in a diagnosis name. I think we got lucky with a pediatrician that understood what we would struggle with in the medical industry if she diagnosed our child with pandas which at that time was concidered very rare. She made a diagnosis of “unknown autoimmune illness” in 2012. the result being we did not experience testing or treatment denials from our insurance. Example: getting an mri. Symptoms vary in intensity. We thought at first that DD did not have a tic but later realized her tic was verbal. Her tic also changed with a steroid blast treatment from verbal to head shaking. Having no experience with Pandas symptoms makes it hard to define or recognize symptoms. We think the underlying cause of antibody and protein build up in the Basal ganglia. we did eventually get a pandas diagnosis in 2015.

So my understanding is that pandas is a autoimmune illness and it doesn’t work right. Somehow the antibodies get the wrong signal an get sent to do the wrong thing in the body. I thought I understood that IVIG process is to puts good cells in the body That will do the right things but will eventually be used up as time goes by. And the whole intention is to get symptom relief. If you have a child that is raging, it can be unmanageable. If this is what happens then, I’d say it should be said as IVIG works. If your intend is to cure Pandas, then I’d say it doesn’t work. We never had IVIG, steroid blasts gave us that relief. I had originally thought that the steroids were use to reduce the inflammation and maybe it’s part of what happens but the doctor said it’s more that is reset the autoimmune system. It worked twice. When doctors found the underlying cause to be the mitochondrial system and started support for that, it brought the symptom scale from 1-10: 10 down to 1-3. Which is a major difference. Antibiotics also worked immediately for us but since our child wasn’t initially diagnosed with pandas, we never did them long term.

Our DD onset was also at 14. But there was way less info at the time and pandas/pans was very rare. She was out of control her first 4 months upon her onset we had never heard of pandas. After a tip we noticed her throat was inflamed took her to see her PC and she was positive for strep. After she was put on antibiotics her rages stopped. Another two months they came back with multiple Bacteria infections. It took us four years to learn that her mitochondrial cells were deficient. And now supplemental support helps to keep her autoimmune system working better. She has flares but we have found that they mostly con-inside with her Periods, and any infections or viruses. We log everything so that we can look at her history accurately and make adjustments according. Without the history, it’s difficult not to make knee jerk reactions to symptoms.

Short answer is No. PANDAS/PANS is an Autoimmune disorder that triggers inflammation in the neurological system of the brain and everything else were are discovering. With the Cunningham panel telling us that it's an result of an overabundance of buildup from the Autoimmune triggers (IMHO) I think its counter intuitive to trick the immunize system with half viruses triggering the immune system to respond with antibodies and possibly wreak even more havoc than what is already going on. I think our goals is to quiet down the Autoimmune system and not excite it. Now I'm not a doctor, and couldn't tell you if I'm actually right with this paranoia thought because it could be that the antibodies being triggered won't affect the neurological system of the brain that are kids are reacting to, I'm just saying, I'm too paranoid to let my kid'o get a flu shot.

Has anyone mentioned diet? Sugar is a big exasperator of symptoms for our daughter. You probably already do something like this but we keep a daily journal of everything she takes and note the symptoms, behavior and intensity. This helps us to track and report more accurately to the doctor.

Hi, sorry you have to go through the symptoms. My DD had steroid blast treatments each time her symptoms got worse but after she completed the treatments she had big improvements. The treatments lasted from 6 to 8 months. We’ve heard that the tonsils can hide strep and some have them removed. In DD’s case her autoimmune system suffers from having mitochondrial cell deficiency. She takes supplements to support her mitochondrial cells. It helps to make her symptoms manageable.

My daughter had a verbal tic, during a steroid burst it got so intense her tic was going while she was sleeping. After her second steroid burst treatment same thing happened but after it changed to a head shaking tic.

DD used Advil cold & sinus it reduced symptoms and stopped full rage Episodes from happening. After 18 months, it caused her immune system to start attacking her thyroid and liver. DDs pandas found her mitochondrial cells to be deficient. Once she was put on mitochondrial support her symptoms were reduced to a manageable level. Normal MRI’s don’t show anything looking for inflation. It needs to be the kind that checks for flow. Use Advil on an as needed bases. Benadryl worked for dd as well but symptoms came back stronger after 4 to 5 hours.

Maybe, but I'm not totally sure that's the applicable question? I think everyone (with pandas) is different with regard to using sedatives/anesthetic. It's really tough when you have anxiety, over the top, to sit there with someone probing your mouth and inflicting pain or your in fear of pain because you've had a sample. I have a hard time doing it myself with a mild level of anxiety. With DD, we found that the Dentist makes a huge difference. It didn't matter that she had gas or a sedative, if she wasn't OK with the dentist, it wasn't happening. I'm sure if we had the money, totally out would have been the way to go for us. DD had a crown done that involved a root canal, it took us over two years with the flares and finding dentist(s) to get through it. We had found a good dentist that could handle everything fine but circumstances changed and we ended up going around and around the community until we finally ended up at Western Washington University where they handled everything perfectly.

Not yet? I'm wondering if this is one of the first labs to popup that is related to this article: https://www.newscientist.com/article/dn27659-cheap-blood-test-reveals-every-virus-youve-ever-been-exposed-to/ I couldn't find a cost. If it is one blood test for every thing, then the services are masked pretty well. I could only find a $200 out of pocket reference to insurance an deductible. Most labs have itemized cost lists for each test.