tu4four reacted to bobh in Autoimmune Encephalitis
Your story is heartbreaking - I am so sorry for all of the stress you are under.
I assume that you are posting here because of a previous diagnosis or suspicion of PANDAS or PANS. Just in case you haven't seen the workup recommended at pandas physicians network, scroll down to section "III Workup" at this link: https://www.pandasppn.org/seeingyourfirstchild/ . This is not a really long list (like for example, Dr. T's), but a very basic one, and one that a doctor not expert in PANDAS/PANS could respect on account of the board of expert doctors behind this website. At any rate, beyond the basic checks for strep, there is a recommendation to check for heavy metals. That part is worded in a funny way - it's called poisoning, but it's also called a non-infectious trigger. At any rate, I know of a child that had excess mercury in her blood (and hair), and her PANS symptoms did actually improve greatly when they got the mercury level down. It really does seem to act like a trigger. I have heard aluminum as another that possible trigger that you could consider requesting to be checked.
Have you ever chased yeast as a trigger?
For your son, though zith is good, you might consider getting a different abx, as recommended (after 14 days if no improvement) on the second page of this link: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf .
tu4four reacted to qannie47 in It's been awhile, so I thought I would update
Months ago I shared that food allergy treatment was our final piece to the puzzle in getting rid of symptoms that seemed to have no explanation. It seems to have held as well. Last October though, my perfectly healthy 100% free Pandas child of many months flared from a tetanus immunization shot. A flare could not have been further from my mind, and I did not even recognize it right away. We started ABX (an increase from his prophylactic dose) without any great results. I started advil 2x a day and that did the trick. For the most part he has been back to 100% again with very minimal wax/waning. He came down with a cold 5 days ago and sure enough....there were the symptoms...I was smart enough to start the advil 2x a day and this approach seems to have nipped it in the bud and also prevented further escalation of symptoms. I still believe that the October flare still has a little hold on him. An off day/half day here and there. Thinking that those dam antibodies will just need some time to completely leave his brain....Otherwise he is in good shape and holding.
tu4four got a reaction from Mimi4 in Handling Raging Behavior
It's me, again. Muddling through another rage. I have the Explosive Child and have read through that, although it has been a little while and maybe I am forgetting something. But how do you handle raging behavior when it is aggressive and targeted? It's not like we can just stay out of her way. And it's really not like we can avoid behaviors that send her into a rage. As I mentioned earlier, asking dd to do anything from homework to a shower brings on a pretty wild and horrid, but predictable, rage. I get that she cannot wrap her mind around transition right now and that she is not CHOOSING to be so irritable or to be unable to do anything I ask (although I do think she has a little bit of learned behavior going on sometimes, I'm just not sure when).
What I have no idea about is how to handle that rage. I have three other children who are often targeted once she gets to that place. I have them go upstairs and lock themselves in the oldest's room or lock themselves in our bedroom, but she continues to rage and beat doors with heavy objects, tear things off of the walls, make holes in the walls, call all of us stupid, wish we were never born she hates us, why do we have to be her family, screaming bloody murder to get away from her, leave her alone...you get the picture. Gutteral (sp?) screams that, frankly, I'm surprised have not caused our neighbors to call the police. I cannot lock her in her own room to calm down because when I did that she managed to tear the door open and damage the frame to her door. I often restrain her, which only continues the rage, or often escalates it but does hold her in one place. But I can't do that all day or evening.
Right now she is in the shower after having sprayed the entire bathroom with the shower head out of anger and trying to get me. If I walk back in there, she is going to issue another string of insults and yell and scream some more. I told her that she would have to dry up the bathroom, but really....fat chance of that happening. And, as you know, no amount of, if this, then that will work to motivate her.
So. How do you handle this kind of behavior?
tu4four reacted to NancyD in Supplements that INCREASE dopamine levels
I started researching ways to decrease DD's dopamine levels, which are exceedingly high, and I was surprised to find that the following increases dopamine: vitamins D, B6, B12. Also Omega 3 in high doses, l-thiamine, ginkgo biloba, fava beans, pine bark, and grape seed. That explains why D3 causes my DD to rage. And when we doubled her Omega 3 dose a few years ago she became more dysregulated. B12 injections were problemsome. She also takes B6 and Methyl-B12 sublingual for MTHFR 677++, so now I must figure out whether they are adding to her regulatory issues. Then, if I eliminate them, will it affect her methylation cycle??
Has anyone else researched this? I know there are some parents who have commented that their children cannot take D3. Do they have high dopamine levels too?
Thought I would start an exploratory discussion on this topic.
tu4four reacted to JoyBop in Hashimoto's Encephalopathy?
I think my son was tested for thyroid and it was normal but not Dd. its very rare for kid to have thyroid problems but they do happen. Dd is now in full remission. We will be testing again in nov. I'm having my adrenal glands tested as well for some new symptoms I'm having. Interestingly low adrenal causes anxiety and depression....worth checking in the kiddos. I don't have those symptoms but have some funky things going on.
tu4four reacted to tu4four in Alternatives to Risperdal
Just have to add in my 2 cents....I hate, hate, hate psych drugs---and we have used a boatload of them--but at times, it has been the only thing to give my family some relief. Risperdal was rough on my girl and actually ramped up her OCD.....we took her off of this ASAP, but abilify has been a lifesaver for us at times. Without abx or other apps to trear the underlying issue, we always ended up having to increase the med and/or add other heavy meds. So not treating the real issue is not an option, but psych meds have certainly helped us through some dark times.
tu4four reacted to qannie47 in Would anybody be interested in starting collective Prayer?
I believe in prayer, and I believe in numbers...even if you don't ascribe to a higher being, I believe that thoughts have energy. What you send out comes back. For the negative and the positive. I essentially believe that is how prayer was designed to work.
So my thought is that we could create a list of names. Every night we could all commit to saying a quick prayer for each of our children every night. I know anonymity is important here, so we could use our names that we use here in the forum.
I will start by adding my name to the list.
qannie and ds
tu4four reacted to PowPow in Need Opinions...
maybe~ in milder cases- maybe not as encephalitis, but as an autoimmune condition perhaps.
Just an idea. I think, all psychosis has a physical cause, that must be determinable. We just need clinicians willing to work to determine it.
I wave my AE flag at every psychosis that crosses my path...
tu4four reacted to kimballot in I watched a TV show tonight
I watched a TV show tonight. It had nothing to do with PANS, PANDAS, PITAND, mental health, physical health, health care system, parenting, or my job. It was a one-hour who dunnit with commercials.
I remember when I used to watch these at least one or two nights a week. That was four years ago.
Four years ago in November 2009 my son contracted H1N1 triggering yet another period of problems with attention, handwriting, executive function, separation anxiety and urinary frequency. Subsequent investigation finally led to the PANS diagnosis along with discovery of a sinus cyst, immune deficiencies, and mycoplasma. Surgery, antibiotics, steroids, IVIG, hospitalizations, inability to attend school, and multiple trips to out of town doctors and local doctors ensued.
I believe his case is one of the more complex cases. He is now attending school and continues to receive IVIG regularly. He is still tired much of the time, but is learning in school and is a great, fun teenager. And me... I am a Mom who watched a TV show tonight. Now THAT is amazing!
Hang in there folks... we are all going to beat this thing!
tu4four reacted to nicklemama in Cam kinase II of 178 high enough?
At this weekends conference in Providence, nothing was mentioned about using the Cunningham test to determine a need for IVIG. In fact, the criteria promoted for receiving IVIG was to reserve it for those children who were severe. It was also the opinion of most of the experts that IVIG should not be used frequently and that if you are not getting a response, to discontinue using IVIG. The rationale is that it is not without risk. There should be a risk benefit ratio discussion. Don't shoot the messenger. Thank you.
tu4four reacted to LNN in Cam kinase II of 178 high enough?
CamK does go up and down - it's a signaling mechanism and fluctuates. You might want to PM EAMom - she tested her DD over multiple periods of illness and health.
The test, even after 3 yrs, is still significant b/c it shows an autoimmune/inflammation response. But I wouldn't think you need to do it again to "prove" Pandas.
Is high CamK enough to warrant IVIG? Depends on whose protocol you follow. The researchers have only used IVIG to end a flare. So if you're not in a flare, IVIG wouldn't be warranted, regardless of whether you have Pandas as an underlying condition. Other docs believe you should do IVIG every 8 weeks regardless of if you're in a flare, in order to build up the immune system and water down the levels of renegade auto-antibodies. But under this protocol, I don't think your current CamK level would matter.
tu4four reacted to Familyof5 in Family explosion
I agree with mama.
Treat mold by pulling toxins out with cholestyramine and removal from toxic environment (or removal of toxins). My experience was that mold was underlying cause of all our other suspected illnesses. Changing my family's environment was the first step in successful treatment. Second step was cleaning up our diet. I'm now investigating how to heal the leaky gut to be rid of all our food intolerances for good (looking into GAPS diet for that now).
Mold...it is a nasty, nasty, devastating problem that is invisible. I have found most mold testing to be unreliable except for the ERMI testing recommended on Shoemaker's website. I prefer to use Mycometrics for ERMI lab testing.
tu4four reacted to mama2alex in Family explosion
A lot of fantastic ideas on this thread. On the mold issue, if you've seen mold in your ducts it makes sense to do both the genetic testing and test your house. We did the HLA tests through LabCorp. We found that I'm mold susceptible and my ds is both Lyme and mold susceptible. A good place to start on the house is the ERMI test from Mycometrics. I think it was $300. A mold expert we brought in told us that the ERMI looks for mold DNA, so it can be live mold or the DNA from mold that is no longer living. The reason to look at it from that aspect is that the mold toxins can still be around after the mold is dead. Our ERMI test was very high and we couldn't smell mold at all - nor had we seen any at that point. All air testing came out perfectly clean. In the end, we sold our house because by then I was too sick to deal with a remodel/remediation. I have to say, that after I was treated for 4 weeks with cholestyramine, I could suddenly detect a strange smell in our house (when I went back to meet with the realtor). If you are open to moving, and have seen mold, I would do that (before you test your house) and test any future house before you buy it. Remediation is very expensive and can easily be botched.
On the trifecta.... yes, absolutely. In fact, it is very common for people with Lyme to become susceptible to mold toxicity. I don't know if the Lyme "turns on" the genes involved in mold detoxification or what, but it's very common. And many Pandas/PANS kids seem to have Lyme & co as underlying infections. It seems highly unfair, I know.
On the yeast/fungal treatment success, I don't think those medications impact mold toxicity at all. You have to treat it with cholestyramine to start, and then some other medications. Mold is something that needs to be pulled out of the body as a toxin, not something you need to kill, like yeast. So you may want to test for yeast and see if that needs to be addressed too.
tu4four reacted to qannie47 in Family explosion
I know this is the last thing you want to hear...but I use the BEST behavior mod program out there. It works well for kids who are chronically sick, and keeps everybody else sane as well. I don't know what I would do without it. Howard Glaser, The Nurtured Heart Approach. It will help. Not make everything perfect, but it will see you through everyday. I've tried them all.
tu4four reacted to Dedee in Family explosion
I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me.
On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit.
tu4four reacted to tu4four in No real improvement after 6 mos. (Lyme)
Wondering if we should continue down the same path. We have an appt with our llmd again in one month. I love our doc. He is the only one who has taken Us seriously and treated aggressively. All 6 members of my family have Lyme. Dd11 is extremely affected for 7 years--on psych mess for 4, , has PANDAS. My dd17 is in the middle of an episode with Lyme--which is how it goes with her. Usually involves a swollen joint, but this time no. More chest pain than ever before. OCD, heart rate as low as 36. Had an abnormal EKG yesterday,... I am havi g faith that Melton, Zithromax, cefdinir and a couple of supplements will be helping her.
My dd11 who is mainly psych affected, though....I just have rarely seen any improvement whatsoever. And when she did improve a little--ie--sleeping--she quickly lost it. She is so difficult to live with, very ODD can't function academically--specifically in mAth --we homeschool. Constant yelling, fighting, etc. I feel like we are In Dante's inferno...always some level of .
We have treated for viruses, etc. . We are in Texas and see a doc not on the coast---I love him and think he can help us, but any ideas on why no real improvement?
tu4four reacted to RNmom in Is PANS really LYME?
PANS can have many underlying causes and on that list of "PANS Causes" is Lyme. My son had PANS / Lyme / Bartonella. We did not get the PANS symptoms under control until his Lyme and Bart was successfully treated. I wish everyone could see him now. He is vibrant, developing normally along with his peers, and enjoying his life for the first time in two years. When he was at his sickest point, he could not even come out of his room or communicate with us. His OCD was in the "catastrophic" range. We truly lost him to the illness for a while.
Now that the Lyme symptoms and Bart symptoms have been largely relieved we are able to discern new PANS flare ups from causes other than Lyme or Bart. For example: one night last June (2012) our son began to exhibit very mild OCD behaviors. (We now know them well and are able to pick up on them very quickly.) However, as it was June and he was not in school around strep and other triggers, and because he was not sick himself and no one in the family was sick (so I thought), I was terrified that perhaps the Lyme / Bartonella treatment had "failed." (Or worse, that he truly was mentally ill and we had been in denial all along.) I had a sleepless and very anxious night after which my older son came to me and said, "Mom can you look at my throat?" To my "relief" (for my PANS son) my older son's throat was bright red and his tonsils were swollen and covered with yellow blisters. We started my older son on Azithromycin that day and my PANS son's PANS symptoms disappeared in 24 hours. For us that experience was a small "proof" that our son does have PANS and it is separate and distinct from Lyme - but can be triggered by Lyme as well as any other insult to the immune system.
This small "proof" occurred back in June of this year. Just this week (September 2012) we had another "proof" of a different type of trigger for our son's PANS. I gave him a new Magnesium supplement. He had an allergic reaction (presumably to one of the additives) within an hour. It set off his PANS symptoms (OCD, agitation, clipped communication). I loaded him up with Advil. Gave him a Clonazapan to settle the anxiety. Told him "this was temporary" and that "it was not all coming back." He was terrified. By the following morning he was 75% better. By the next evening (presumably after the new supplement was out of his system) he was 200% better - back to his "new baseline" of happy, healthy, communicating well, and developing normally. It was another distinctly discernable PANS flare from an allergic reaction to a new med. and another small "proof" for our family.
My son has PANS plain and simple. When he had Lyme and Bartonella it was so difficult to treat and the treatment took so long that we could not "see" the PANS from the Lyme or Bart. For a very long time it was as if these different illnesses were "one and the same." It has only been since our son has had lengthy stretches of good health that we have been able to discern episodes of PANS due to other causes. Our son has classic PANS - he is a poster child for this illness when he has an episode. Now we understand better how to identify it early. When he had Lyme/Bartonella it looked as if the PANS would rule his life forever. But, when we finally got that treated we can now see that PANS can be managed.
I would humbly suggest that some of the most difficult to treat cases of PANS may have Lyme or a coinfection confounding the efforts to get PANS under control. I say that because Lyme and coinfections are so very difficult to identify and take a long time to treat successfully. Confounding the process is the fact that treatment for Lyme and coinfections necessarily trigger Herxheimer responses that stir up the immune system and make PANS symptoms worse. It is easy to get lost in the treatment process, to give up on Lyme treatment too early, to miss a coinfection, or to doubt the PANS component of the illness. In my experience, one of the biggest casualties of the Lyme / PANS combination is the validity of immune modulation therapy. Our son had IVIG and plasmapheresis and they both "helped" briefly. I do not think these treatments "failed," I do not think they are invalid treatments, I just think they were not able to address the Lyme and Bartonella. They key point here is that immune modulation can work for PANS but only IF all the underlying infections are out of the way. At least, this is what seems to be true in our son's situation. It's all about the timing of the treatment.
I realize that I have written a lot here. The question about PANS being Lyme or PANS being PANS is important. It begs the greater question about treatment approaches and their timing. I am very glad to see the forum growing in comprehension of this very complex set of diseases. It means we are making progress and there is hope with this illness.