Rachel

The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.      

Keep sharing! I want to hear more. It's so encouraging.

Maybe this article would be helpful. OCD is hard to deal with.
 
 
http://www.balancingbrainchemistry.co.uk/peter-smith/35/MTHFR-Gene-Mutation-and-Treatment-Resistant-Depression.html

Just wanted to pop in and give everyone an update on my son. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. He was tested for Lyme and Co-Infections but never got a positive test on any bands. He tested positive for Basal Ganglia Antibodies in November 2013 but was never diagnosed with PANS/PANDAS because he did not meet the NIH criteria. However, my son did get treated for these antibodies by his cardiologist because they were making his POTS symptoms worse. He was treated first with antibiotics, then a few months of IVIG, and then had to go on a do Plasma Exchange. His Plasma Exchange treatments lasted for a year. He had his last treatment in July 2015.
 
In June 2015 before treatment stopped totally, my son's tremors from waist down disappeared. He could finally ride a recumbent stationary bike and started doing floor exercises to build up core muscles that he had lost from not being able to exercise. The Basal Ganglia Antibodies interfere with cell signaling which in return will interfere with any signaling in the brain.
 
In July 2015, he still had his daily headache and severe scalp pain. His doctor prescribed extended release Namenda in April 2015 and it dropped the headache down to 6 out of 10 instead of an 8. His doctor also prescribed Low dose Naltrexone 3mg the end of July 2015. This medication is used to treat CRPS, chronic pain and other autoimmune related illnesses. Eight weeks later, my son's headache, severe scalp pain, and hypersensitive skin pain issues are gone. My son has been pain-free since October 2015.
 
In November 2015, my son was finally able to stand up and take his first steps with a walker. A week later, he tossed the walker aside. My son saw his doctor later in November and he sent in the orders for physical therapy. His doctor also allowed him to start going to one church service a week to start exposing his immune system and to do short errands in uncrowded stores. So we started making short runs to the Post office, Braums for milk and ice cream, It tired him out at first, but he does enjoy getting out.
 
Physical therapy was started in January 2016 and in March my son was doing pool therapy for 60 minutes. His pt taught him to swim and he now goes to an indoor pool to swim or do pool therapy exercises. He currently exercises 3 times a week, goes to all three church services, runs errands, and continues to do online school at home. His core muscles are still weak and he cannot sit up comfortably for more than an hour. He is able to walk for about 15 minutes before back pain sets in. He is being reevaluated for this soon.
 
My son's POTS symptoms are more manageable. His blood pressures stay up, brain fog is gone, and hoarse voice is gone. Vocal tics are hardly every heard. My son is still on several medications but overall, he is on his road to recovery.

This is really good overview on Autoimmune Encephalities. My son was checked for the NR 1 receptor for NMDAR encephalities in November but it came back negative. However, I still think my son has a form of encephalities because of his high glutemate levels. So I am going to see if our doctor will check for GABA receptors that affect the levels of glutamate. There is lots of information in this article. This doctor talks about different things that can cause encephalities.
 
 
http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2044.ashx
 
 

My son does the K-12 online school and does have an IEP. It's has been a really good experience for us. I meet online with his teachers and tell them what modifications are needed. When my son started IVIG treatments in April last year, they slowed down the pace of his school work. They sent a teacher out to give his end of the year testing with modifictions. The best thing you can do is communicate with the lead teacher and let them know what is going on. K-12 online public school has been a wonderful experience.

I would not cross off autoimmune off your list. Lyme and other viruses can be autoimmune if they cross the blood brain barrier. Has your son had plasma exchange? Hopefully you will get some answers when you go to Standford. It sounds like youre son has been sick for a very long time. Started out mild in the beginning and then eventally got worse. Getting to the right doctor can make all the difference in the world. Keep us posted on the out come of the appointment.

My daughter has several reasons why we shouldn't use steriods. However, desperate times call for desperate measures right? She has Lyme and she also has tics. In the past she has gotten so bad I would have tried anything. We have used steriods on several occasions. Different lengths of time, different doses, etc..until we have found her sweet spot so to speak. When we go too high on the dose her tics get crazy. The longer we go the worse the tics get. So we keep the dose as high as we can without making her miserable with tics and go as long as we can before they explode (if that makes sense). I admit, it has been purely trial and error on my part and she has been a bit of a guiney pig. But I'm a nurse and I guess I'm more comfortable with that sort of thing than some may be.
 
She is 10 years old (almost 11), and weighs almost 90 lbs. I can give her 10-12mg per day divided into 2 doses and she can go about 10 days. On day 7 or 8 I start weaning, depending on how the tics are and how much prednisone I have on hand. If she starts ticcing badly before then I will immediately start weaning her off. This is really a low dose considering what she could get by guidelines, but it's all she can handle before the tics kick in. It will increase them slightly but not to the point that it bothers her.
 
Another thing is that while she is on the steriods she will increase her irritablilty. Some people think this means that it is making them worse and stop them. Reality is that steriods make the general population irritable. So it's not unusual to see a PANS kid get more moody and even have a few more rages and irritability. This is the nature of steriods. It also makes them hungry and have a hard time sleeping. Again, a natural side effect of steriods. If you tough it out, you will see some nice results at the end.
 
So, JMHO, I think what many people think is a "bad reaction" to steriods in their kids is really just normal side effects that are amplified because our kids already start out with some of these issues in place. It's all about what you can handle and what your child can deal with in order to get the desired effect. Again, this is just my opinion based on my experience. A lot of kids react differently based on their immune system, current infectious processes, etc. You have to make the best decision based on your experience with your child. Best of luck.
 
Dedee

It's good to hear that your son is doing better. I'm so new at this, I don't know what testing to recommend. My son had immune testing which indicated a problem with low t helper cells. They would not come out to fight infections. The Cunningham Panel was our next big clue. My son has been checked for virus and he did have results that indicated high antibodies from past infections but no active infections. My son's symptoms sky rocketed after he had the flu in 2013. So viruses, flu, and past infections do not help this strange illness. My son has been checked for lyme and co infections. I would encourage you to watch the PANS video from the AE allience. Some of the children that Standford was treating also showed up with other autoimmune antibodies in their bodies. There was a list and this caught my attention. It was towards the end of the video. Here is the link for those video's from AE.
 
https://aealliance.org/
 
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My kids had infections I did not even know about. PEX and IVIG helped them both...dramatically, but they were in extreme exacerbation, and needed something major to help them immediately. But, that being said, PEX and IVIG are not the cure that we all had hoped for. It is extremely important to keep looking for infections and environmental issues (such as mold, chemicals, etc. for instance), as the immune system is going to continue to be on overdrive if you don't deal with it. Also, this includes finding others in the child's environment who are also ill, as the child is hypersensitive to it. Even after all these years, we still seem to keep finding infection and other things (such as the mold we found and have been dealing with since August.)
 
Honestly, it's really hard to totally clear all infections. I really think it depends on just how serious the kids are at the time. My kids were in such a bad state that we didn't think twice about doing the PEX. We did think twice about the IVIG, being that it's a human blood product, but we're now not sorry we did either one of them (IVIG was done approximately 8 times total over a 1 1/2 year period.) I honestly don't know what I would do now if I knew then what I know now about all the other infections and environmental triggers. But, at that time, there is no doubt that it was exactly what they needed.
 
OK...now, for all you new families, I am going to throw a few suggestions out there (based on 5 years of experience treating this.) First, of all, I don't think that PANDAS, in and of itself actually exists (strep only). I think that the paper that came out in Feb, and the new NIMH website that came out in March have it right in saying that it's multiple infections and/or environmental triggers, and that's why they call it PANS. So many of us have eventually found that it was strep, and another infection, such as staph, lyme, mycoP, bartonella, babesia etc. Plus, there could be yeast, mold, chemicals that were sprayed. And, then there's the way the child's immune system reacts to it, and/or clears it. A lot of our kids have turned out to have MTFHR gene mutation which makes it difficult for the child/person to process vitamins/toxins, etc. (LLM knows way more about that than I do.) As it turns out, both my kids have a single gene mutation, and I ended up have a double (homozygous...totally unbeknownst to me, which kind of explains why I have been sick for so many years.) In my family, we have uncovered strep, staph, lyme, bartonella, babesia, erlichiosis, mold, yeast, MTHFR gene mutations, and on and on, and on.
 
So, all that to explain my answer to the PEX/IVIG question. I know there are going to be a lot of people who get upset with me, but I truly have to say it. Only you and your doctor can really decide if PEX/IVIG is warranted, but you absolutely have to treat for more, evenutally. And, you have to support the immune system, and treat the infections, etc. (there are a lot of ways...currently we are doing abx, homeopathy, supplements, herbs, accupuncture, ART, and chiropractics.) If your child is critical, in my opinion, I would definitely do the PEX or IVIG, because they may truly need that (my younger son especially needed that, because I'm not sure he'd be alive today, if we hadn't done that.) He had also been accutely sick for 4 years before we got a dx, and then it took us nearly 1 more year to get a dx.
 
In answer to the question about coding. Our children were diagnosed with post-infectious encephalitis for the PEX, and also were found to have specific autoimmune deficiency (in their case to the strep pneumo titers) for the IVIG. We still had to fight, but eventually won.
 
I agree with LLM, in saying that you would probably be better off spending your money on integrative, LLMD, and/or DAN doc, and only consider IVIG and/or PEX if the child is really critical.
 
Also, for those of you who are new to this, the Lyme forum discusses way more than just Lyme...it discusses all these other things I have mentioned. I really think it's worth looking at both these forums (PANDAS/PANS, and Lyme).

I just wanted to share this article. I am not promoting this lab and did not use this lab for testing. I have had a difficult time understanding why my son's symptoms are so different and yet these anti-neuroantibodies have shown up. The first time he had the Cunningham panel ran it could not be read as unlikly or likely. The marker was in the middle. My educated guess is that my son's body had accepted the antibodies as part of his body. The second time my son had this test was when he had a double ear infection. Both ears inner and outer, very painful, and his symptoms of tremors, vocal tics headache, scalp pain and hypersensitivity went through the roof. He could not stand sheets or blankets on him. This second test came back highly likely but this in itself does not mean that he has PANDAS but he has the antibodies in his brain. I have read bits and pieces of research that these antibodies can show up in other illness. I came across an article that pointed this out and there are references at the bottom of the page. Hopefully this will help someone else figure out why their child has these antibodies if they have had the Cunningham Panel done.
 
http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94
 
 

Hi Cara
 
I went back to look at my son's Cunningham Panel results. The first results indicated Unlikey because nothing was elevated. My son was having symptoms but had just been on an antibiotic for a sinus infection. However when my son got a double ear infection,all his symptoms increased ( headache, vocal tics, hypersensitivity, tremors, muscle and scalp pain) everything on the second test was highly elevated. To me this test is confusing but it did let me know that whenever my son gets sick, the antibodies are present.

I just read the article. It's the first time I remember seeing documentation of an autoimmune blood disorder, "We discovered that he actually had an autoimmune disease attacking his blood and blood vessels,” explains Dr. Jennifer Frankovitch".
 
Sounds similiar to what the docs at Duke found in DS15 end of last year. They found an antibody attacking his platelets. His platelet count was always low and this is why. He always bruised easily. I can't remember the name of the antibody or condition they called it, but kudos to Dr Van mater, Duke pediatric rheumatology for finding it. This antibody gave them the proof they needed for an autoimmune problem. They then prescribed 4 rounds of monthly IV steroids. Steroids worked wonders, so they started cellcept 2 months ago. We continue to see improvements...school is better, personality is back, OCD is lower, ADD is lower. Tics are still there, but less severe. The steroids and cellcept have helped him better than plasmapheresis or IVIG or Abx have.

I also agree with Hopeny. Go with the treatment that works, if doesn't work keep looking for underlying cause. "It" was so much more than I ever imagined but still very treatable and in "many" ways.
 
SSS: I do know someone locally that is Lyme knowledgeable, will treat with monthly IVIG, fights insurance for coverage and has it set up for in-home monthly services.
 
Our experience is IVIG is/was extremely helpful to our DD. She has had a growth spurt, lost teeth, more consistent in her mood, less aggressive, happier, etc. However, we still needed to treat the underlying infection. After her 4th monthly IVIG her immune system was actually able to fight infection better and it looked like she was regressing. We rotated antibiotics to treat Bartonella more aggressively and she made a complete turn around within 24 hours. For us, the rotation of combination antibiotics along IVIG has been the treatment protocol that is working for her. She is on Biaxin, Cedax (similar to Omnicef), Alinia.

Quickly, sss, the reason we could afford it is because we switched to someone who deals with insurance. Everything is covered now. We drive for her care. We sacrificed a huge amount before then.
Her ivig also would wear off. Monthly ivig is a huge part of her tx plan. the reason I strongly recommend going to Duke's clinic, is that if they find something to diagnose a child with, they will get it covered.
we paid for IVIG out of pocket, we paid for many many very expensive is independent doctors, and they were helpful but none of them got the care that we are receiving at Duke and none of them were covered by insurance.
that is why I encourage people with severly affected kids, to at least try to get a consuly there. You never know what they may find.

My son has vocal tics and he is 14. When he was much younger, he would have spells that would last 30 minutes or longer. Eventually we were able to get this under control with a medication called Intuniv. However, my son also has problems with serotinon and dopamine levels according to many different sources of testing. This medication does help regulate this in the brain.
 
In January of this year, my son was started on a methyl B-12 shot. This shot has really helped with fatigue levels and has not increased his vocal tic. Since more supplements were being added to help my son with his fatigue levels, my husband and I decided to do the 23 and Me testing on my son. We did not see more improvement when we added these supplements and were afraid we were wasting money. We really wanted to know if my son needed Methyl B-12 to help his body function better. According to the 23 and me test results, he does need methyl B-12, but some of the supplements that were added were a hinderance to getting the methyl B-12 to absorb efficiently.
 
It does take some work to figure out the test results, but was well worth the effort. Dr. Amy Yasko has written a book and has developed at test that's almost the same thing as the 23 and Me. However my husband and I chose to the 23 and Me testing due to the cost involved. It would be a way for you to know if your son needs methyl B-12 or if he needs a different form of B-12.

Hi Everyone,
 
I wanted to share some more resources that I have found online. I don't know if anyone has heard of Dr. Myhill. She works with CFS patients and also helps them with methylation problems. She has a basic jump start program to get the methylation process started but tells you to start low and slow. Her old book is online. I will post it and her lastest article on Methylation. She also mentions Dr. Amy in her article and to check out her sites as well. I have just started my son on one new supplement, B-Right. In another week or two, I will start him on 500mcg of Methycobalamin once a day and then gradually up the dosage week by week. I will not be giving it on days that my son is taking the methyl-B 12 shot. Eventually I will add in the Phosphatidyl Serine. Dr. Myhill does have a new book out and I will also be order it to read. Here is the article and her old book. Happy reading.
 
http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
 
http://www.thyroidhelp.org/ViP/Diagnosing%20And%20Treating%20Chronic%20Fatigue%20Syndrome%20-%20Dr%20Myhill.pdf

This is an interesting post. I have wondered about the same thing because I have also been going through my son's old medical records. I thought after the brain antibodies were found in my son, the doctors would diagnosis him with PANDAS. My son had a lot of ear and sinus infections when he was younger. He also had croup 2-3 times a year until the age of 11. MAYO called it spasmonic croup. My son came down with this during his week long appointments with MAYO in Rochester, MN. He was diagnosis with POTS was reconfirmed but it was good to get another doctor's view of croup. My son has not been diagnosied with PANDAS but has a diagnosis that our insurance will accept.
 
In the USA, PANDAS is still not accepted as a medical diagnosis by many doctors either. Many insurance companies will also not provide medical coverage for this diagnosis. So having a diagnosis they will accept if you have insurance can be a blessing.
 
My son is also on antibiotics. Are your doctors doing any blood work to see if the antibiotics are helping? My son has a high viral load of Mycoplasma P. He had a blood test a week ago but have not heard back on the results. He has only been on them for 16 weeks not nearly as long as your daughter. You mentioned she had strep. Are they rechecking those titers? That should give your doctors some answers about what the antibiotics are doing . As a parent I would also be scared about taking her off the antibiotics especially since they seem to be helping. If she gets sick after she is taken off, I would beg her doctors to checked the strep antibodies to see if they have came up. From reading about PANDAS, I understand this is one way to keep a check on this. I am very new to all of this so hopefully others on the forum can give some better advice. Wishing you the best and keep us posted on her recovery.

Keep sharing! I want to hear more. It's so encouraging.

Keep sharing! I want to hear more. It's so encouraging.

Viruses can cause problems. My son takes the extended release clonidine and normally sleeps through the night. However, last night he woke up sick to his stomach. Which is not the norm for him. He is also on Bixan for Mycoplama P. but I have not seen major improvement in symptoms but no regression yet either. I'm glad that you posted this. Hope you will get some other answers because I have been wondering what signs to look for if the antibiotic does stop working.

My son's cardiologist has also told me that I could start my ds on the herbs. However I have to start only one at a time and on the very lowest dosage. I will have to go very slowly because of my son's heart and blood pressure problems. I just got my books this last Saturday and have started reading. I plan on starting my ds on the Japanese knotweed first to see if it will help with the brain inflammation.

My ds doctor's appointment went very well this last Tuesday. Our cardiologist is going to start a more aggressive treatment plan. Testing from the Pandas study has indicated some heart antibodies are present. However, my son has not been diagnosied with PANS/PANDAS because of how his illness progressed. He has been put into another study at OU for POTS patients. This study is also looking at specific heart antibodies and receptors. The cardiologist has given my son another diagnosis and his POTS is the secondary diagnosis. This new diagnosis is a tongue twister it starts out as autoimmune anti-neuroantibodies ______ _______ ________ _________. I will be getting a letter for my son's school and it will be written down. So I will be able to tell you the diagnosis name eventully. Basically our doctor thinks the Mycoplasma has caused the brain antibodies.
 
My son will be going for labs on Monday to see if Mycoplasma levels are going down or staying the same. He is also checking magnesium, iron, and other electorlite levels. The only improvement we tell is that the antibiotic is keeping his blood pressures up. Which is huge, since this stuff is affecting his heart and blood pressure. If his mycolplasma levels are not going down, my son will be change to another antibodic. Doxycline was discussed as a possibility. My son will be having lab work about every 3 months to check for the levels. I am really glad that our cardiologist is going to do the treatment because of heart and blood pressue problems. The cardiologist is also ok with us trying Burhner's herbs for inflammation. Since other medications have not helped in the past. However, we must start slow and he will moniter my son with EKGs after he has been on a new herb for one week.
 
Our doctor also wants to start my ds on an immune supressing medication. IVIG was discussed but he is afraid it will make my son's current symptom's worse ( headache, scalp pain, and vocal tics). He really does not want to make these symptoms worse and wants to leave IVIG as last resort. He is trying to find something that is antiflammatory that will not increase these symptoms. Any suggestions on what to look at? I know our doctor is collaborating with other doctors. However, I wondered if anyone had found an immune supressing medication that kept these other bad symptoms from becoming worse?
 
Last but not least, for those that are treating the Mycoplasma, Have you gotten rid of it yet? If so, How? Feel free to pm. I have went back and read several old post and have saved them under my favorites. It sounds lke this is going to be a very long haul. I'm hoping with the herbs and antibiotics that we can speed up this healing process. I am also waiting on my son's 23 and me results. I have also save all the old post and will share the results. Overall, we had a really good doctor's appointment and I finally feel like we are headed in the right direction for treatment.

Has anyone tried using the DAO enzyme? Does this help?