Can someone help me figure out what my question is here? Followed by many other questions

[Plum99]

I've been reading through old posts, trying to look for something, but I'm not sure exactly what. I noticed my daughter had a problem with vitamin d a few months back. But since she is also deficient in vitamin d, and I was told that everyone tolerates it, I started giving it to her again. I definitely see something affected, and I can see others have posted about it too. She also seems to be negatively affected by folate, but not b12 injections (Maybe I'm wrong though. Maybe it's both.) So I stopped giving her the folate she was prescribed with b12 a while back, but then I was told it doesn't work right to do it that way, so I restarted. I really think I am still seeing something. She did have a sudden onset of allergies, and they didn't go away, but they did just settle down after she was taking the b12 for a while. Am I trying to look at this folate trap as something? Does anyone know about this, and can you tell me if I'm way off? I'm already kicking myself that I didn't do the 23andme test months ago. It seems like there are several things I'd guess she has, but how could they be there overnight if it is part of her genetic makeup? For example, an intolerance to sulfites appeared overnight, just like other food allergies.

This question is unrelated, but can I also ask- regarding the Cunningham Panel, can it mean anything other than Pandas? If she is high on that, and let's say I'm back to questioning whether I imagined everything- what exactly is that test proving to me?

Right now I would describe my 3 year old as being wound so tight, that the slightest thing sends her spinning into an uncontrollable mess. She's hyperaware of everything, she notices and remembers everything, she's afraid of everything, but when I get her talking again, I can make sense of it. I see where she's coming from, it's just that her feelings and reactions are times a million, and to someone who isn't getting all the information, it looks like she is ok one second, and the next second she could be attacking a stranger, falling down, not speaking for the rest of the day, or maybe saying things off topic when asked what's wrong, sometimes she gets scared of something and her response is to do something she knows she will get in trouble for, like make sure I'm watching and attack her brother. It's complete insanity, but it's also kind of not. Could it be that at this point, she needs behavioral training? I'm trying to help her by coming up with plans for stress reduction, we have cues she understands mean to go cool off and calm down, and sometimes they work. Still, I feel housebound, because I can't always keep the situation stable. I can't carry her out of a room, scratching, biting, hyperventilating because maybe someone wore a red shirt or a toy looked like a robot, because I have another child with me too. But this doesn't sound like Pandas or Pans or anything anymore, does it? Does it sound like something else? I am so worried about making the wrong decisions for her.

My last question is, has anyone had any experience with Regional Center or something like that being helpful? I am not interested in having anything like ABA, or dealing with anyone who is not going to be looking at the whole picture. I've been down that road of trying to convince people of things they don't want to believe, and I don't want to introduce anymore stress to our lives by having someone come train the bad behaviors out of her. I want someone who will see what she sees and help her learn to help herself, and I also am already broke. I can't believe there aren't services out there to help us, but I also don't see what they are. I was thinking about trying to talk to Regional Center about the situation, but I am a little paranoid about opening my mouth because of how I have been treated by doctors in the past. Regional Centers though, I don't know if they are friend or foe, and I was hoping to get an idea of this before I put my foot in my mouth and get another note in my crazy mother file.

[jan251]

I don't know if there's really an answer - not a single answer, anyway - though certainly there might be some pieces you could try to find (23andme).

 

My general feeling is that my son's low vitamin D level is just a sign of inflammation, a correlation rather than a cause. My son also seems to react negatively to vitamin D (more OCD!) and he is deficient (28) though he hasn't been checked in a long time. He is also high for calcitriol. He is homozygous for the VDR taq mutation. My thinking is that additional vitamin D will not help if the vitamin D receptor can't take it up. On this angle, you might read about the Marshall protocol, if I am remembering the name right - very controversial of course, but the ideas resonated with me, particularly calcium channel blockers.

 

Alternatively, if additional vitamin D revs up the immune system to produce more bad antibodies, that could be an answer too.

 

For me, a little extra vitamin D helps me to be more productive, though I have a point where I will get insomnia if I have too much or too many days in a row. (I still need to do my own 23andme; I bought it recently but haven't sent it in yet.)

 

I can't figure out the B12 thing either. My son is compound heterozygous for MTHFR and has several other relevant polymorphisms (COMT +/-. one MTRR ++ and one MTR ++). Every now and then I study the page at heartfixer, hoping to absorb more. There are even more problem genes I am finding every time I find a new gene site (health 7 I think is the name of my most recent find). Methylcobalamin seems to have no effect. 5-MTHF (I'm probably remembering the names wrong) seems to have a negative effect. There are so few people who can reliably guide in this area and it take so much time to figure out. I will need to deal with it eventually - we have all this data, but what does it really mean? LOL I have a sibling in Europe who is doing 23andme and will probably get a fancy analysis and I'm hoping he'll be able to recommend someone for analysis.

 

On the B12, it seems to me that various theories are just a guide but ultimately trial-and-error rules. What I don't understand is what that means in the practical sense if you start a supplement and it makes things worse, whether you endure, need to add detox for liver or something else, whether you just stop, etc.

 

A simpler approach is... Walsh I think is the name? Low histamine, undermethylation, add methionine, inositol, B6, etc. This approach also resonated with me and it seemed mildly helpful though we always fell off the wagon with so many other things going on.

 

My son has an immune deficiency and we moved on to IVIg hoping to at least reset the immune system somewhat. I have a hunch that something with glutamate is related to his OCD issue (e.g. minocycline was a problem so I'm not sure in which direction glutamate needs to go) and thus I'm not interested in dealing with seratonin (SSRIs).

 

I have no idea what a Regional Center is. For my son, there is too much unknown, and too much cutting edge, to get much out of mainstream medicine until the time is right, until we have set the stage for success with, say, CBT. Plus I'm a slacker and just don't want to do it. I am hoping that we will know when he is ready for that, once we have seen a little progress on the medical side.

 

That's all I've got, out here in the medical wilderness.

Edited November 25, 2016 by jan251

[Plum99]

Thank you! That gave me so much to look into!

Vitamin D does great things for me too. My son showed a drastic improvement with the addition of vitamin D. My daughter gets amped up, maybe more anxiety, maybe more OCD, definitely hard to deal with. Folate does the same, but she also can sense it's mixed into her vitamins before even tasting it, and acts like it's poison. She has been pretty good about taking gross vitamins, so when she doesn't want something I tend to believe it's because it makes her feel bad. I just don't know if some things need to be continued because they get worse before they get better, or if stopping is the answer. Fish oil is another one that really seems to not work for her.

Regional Center helps with services for all types of things. My son had speech therapy for a bit, and a great playgroup. The problem was that we started right when all broke loose, and both kids were adding symptoms overnight. I was hoping, if they even acknowledge Pandas and don't just write me off as psycho mom in denial, to be able to get some kind of help with maybe some classes or something where my daughter could socialize in a safe place with teachers who would be willing to work with the situation. She doesn't really fit into a category right now. She definitely isn't showing the Autistic symptoms that she once was. I guess OCD, anxiety, allergic to everything, possible seizures or migraines, afraid of everything, will rip the hair out of your head if she panics- that's the kind of playgroup or class of kids I'd like to find for her. I feel so sad for her. She needs friends and she is so sad when we have a terrible day and leave a fun place. She always asks me a million times if we can try again and do better next time, and it's breaking my heart that she thinks so much about not doing things right, or thinks that was her last chance. We drove by McDonalds yesterday and she told me that Her brother would have one hundred milkshakes, but not her (because she's allergic to everything now), and she said it so calmly while she just cried a little bit. I am pretty much going to die from that experience if I don't find something she loves and makes her happy, or if I don't get her self esteem boosted, which is why I started looking into regional center.

[LNN]

From your post, it sounds like you need to delve into the following questions:

1. What is your daughter's VDR gene status - not everyone tolerates Vitamin D supplements, and knowing the VDR status can help you understand how.why your daughter may respond to D supplements - this answer comes from interpreting 23andMe raw data
   
2. What is your daughter's MTHFR status - again from 23andMe tho you can also test this gene thru Quest or Labcorp. MTHFR is te gene that affects how well your body converts folate or folic acid into methylfolate. Methylfolate works with B12 to produce ATP (energy) and indirectly, serotonin. People with MTHFR mutations don't do well with folic acid supplements (in most multivitamins) which is a synthetic version of folate (found in greens and other foods). They aren't efficient in converting this supplement into the form the body needs. So the unconverted stuff can pool up, causing behavioral or health issues. There are interim folate-related products that are produced as the body converts folate into methylfolate (e.g. folinic acid) and it's worth understanding the differences between the forms as you set about interpreting 23andMe raw data.2
   
3. B12 - there are several genetic issues that influence what form of B12 the body handles best. MTHFR and COMT are the big influencers, but MTTR, MTR, MAO also play a role. It boils down to whether the overall genetics work in favor of being an under or over methylator. Some people who could use a few extra methyl donors do well on methylB12 (methylcobalamin) but everyone else seems to do better on the adeno or hydroxycobalamin forms of B12.
   
4. Allergies - An improper balance of methylfolate and B12 greatly influences how much histamine your body releases (diet and environment also play a role). My daughter's allergies greatly diminished once we got the balance right. While I'm not against changing diets to help with allergies, addressing methylation can sometimes make diet changes unnecessary.
   
5. You ask about these things appearing suddenly - keep in mind that genes can be switched on and off be in-between. Being born with a genetic mutation doesn't mean that mutation is "expressing". What you put into your body - diet, supplements, environmental toxins - influences how well your genes express. Genes are like a dimmer switch - what you put into the system can alter how well that switch expresses light. Genes are not fate. They can be influenced. That's what epigenetics is all about.
   
6. The Cunningham Panel - looks at 5 markers that suggest an autoimmune reaction and inflammation. These markers only seem to be high when antibodies are attacking certain regions of the brain - regions that play a role in Pans symptoms. But these antibodies can be produced in response to more than just strep. Lyme and mycoplasma are common Pans triggers and even Cunningham's research in the 90s identify Lyme as a possibly culprit for a Pans response. High Cunningham results suggest Pans as your cause of behaviors/symptoms, but it doesn't identify which infection is triggering the autoimmune response.
   
7. You ask if your daughter's reactions sound like Pans. Yes, they absolutely do. It sounds like OCD and intense anxiety, fear, flight responses. Her system is sounding alarms and she isn't able to tell her brain that she's safe.
   
8. You ask about outside services. As a mom with two young children, I wouldn't want to discourage you from getting help. But do realize you may face a lot of pressure to medicate behaviors that are seen as non-responsive to behavior therapy. I can tell you that my 11 yr old, who has a lot more reasoning skills than a toddler, was unable to moderate or rationalize away for irrational fears. They consumed her and no amount of therapy made a dent in it. It wasn't until she was put on 2 antibiotics and a month of prednisone that she was able to fight back against the OCD and fears. Until we gave her that support, the therapist was just spinning her wheels. The pediatrician was on the fence about Pandas. But once they saw the night and day change in my daughter when the Pans specialist put her on antibiotics, they were blown away. They had never seen such a dramatic change in so short a time. These are kind, well-meaning professionals. But Pandas is one of those things that needs to be seen to be believed. It isn't until you see a child emerge out of madness that you have the AHA moment and become a believer. So take advantage of services that can support your daughter's development and give you a reprieve, because your own emotional well being is essential. But do go into it with realistic expectations and and an understanding of where you personally stand on behavioral medications. Because there will like be a lot of pressure to add pharmaceuticals.

Best of luck!

[Plum99]

Thank you so much for that. I am 100% not interested in pharmaceuticals, and would most likely have my own rage episode if I was pressured in that area.

 

I'm waiting on the 23andme tests now. I really wish I would have done it already. I know she has mthfr compound heterozygous, and that she is taking methylcobalomin and was taking super liquid folate for a while, but I stopped that, along with D. I try to trust her on what she tells me, for the most part, because I have seen her ask for terrible tasting supplements and tell me they make her feel better. So when I had already noticed those two giving me problems, and she told me to throw them away when I asked her about them, I just did it.

 

When you say that these genes are like a dimmer switch, are you saying that they can be turned back in the other direction as well? Like if things get balanced, or something, sensitivities and reactions can still be reduced? Because this is also leading me back to questioning myself. I can see things on paper, like ige food allergies, and know I didn't hallucinate that those appeared overnight. But then I think about how I distinctly remember the day that suddenly everything caused a reaction, wrote everything down- I swear she would flip just by using a soap with a particular preservative, a lotion, of course food. And I stopped everything for so long. Then recently I kind of slipped, and when I saw she didn't really react to some of the things I was concerned about in the past, I thought I must have been going crazy. I should say think, not thought.

[tj21]

Re. Regional Center: Are you clients already?

[Plum99]

I'm not sure if we're considered clients. Back in June I tried to get her in, when I didn't know what was going on, and just thought she snapped overnight and needed an evaluation. She had just turned 3, so she missed the cut off for early intervention, and for over 3 she needed a diagnosis to use their services. I kind of ran in circles, not able to get an evaluation, while at the same time seeing information online that was becoming more obviously her real problem, and eventually got antibiotics, and started the new direction of circle running. I have no idea why all this time later they would have contacted me to do an interview, but I got a phone call last week. I don't know why they would have picked her information back up, but it got me wondering if they could actually be helpful. I guess they really would only be able to be helpful if the person dealing with us was either familiar with Pandas, or extremely open minded. I really just don't want to keep her life on hold while we continue to figure this out, but it's difficult to find her place. I want her to be able to socialize, take a dance class, make friends, and I know she wants to too. I thought maybe a place like regional center could help us find the right ones, or help in some way. If I enrolled her in a regular class, took her to a regular playgroup, I don't think I could make it work without explaining the situation. She really can be completely normal one second, and a violent rabid beast the next.

[tj21]

@Plum99, in our experience RC has been helpful for ABA, which I think you didn't need/want, crisis intervention services, and respite. That all said, our case mgrs. had never heard of PANS/PANDAS, and were not helpful in that regard for services.

 

It does sound like you need a more definitive developmental diagnosis and a PANDAS knowledgeable MD. If RC ends up assessing and approving services, might as well take it!

[LNN]

 

When you say that these genes are like a dimmer switch, are you saying that they can be turned back in the other direction as well? Like if things get balanced, or something, sensitivities and reactions can still be reduced?

 

You can't change your genes. Your daughter will always be compound hetero MTHFR. But how that impacts her can be influenced by what goes into her body (food, supplements, meds). So the potential for issues, the tendency to react to certain things more than other people, will always be there. But you can help an MTHFR mutation work more efficiently, closer to "normal" by not giving the body folic acid that needs to be converted (inefficiently in her case) to methylfolate. Instead, you can give methylfolate directly - so the conversion her body can't do has already been done for her. Then her body will have a sufficient supply of methylfolate to work in partnership with the B12. When this balance is reached, many people see histamine levels balance out and allergies lessen or seem to disappear.

 

Amy Yasko describes it as helping the body work around road blocks. The road blocks will always be there. But once you help the body build a detour, you can lessen the impact and not be a hostage to those road blocks.

 

Each of the 30+ methylation genes Yasko talks about have work arounds you can try. Once you get the whole picture, you can figure out how those 30 genes affect one another and zero in on the best supplements to take or foods/supplements to avoid. It's complicated. Takes lots of study and some trial and error. And as a child grows, the "perfect" balance or dose of something tends to change. So you sometimes have to go back to the drawing board. But far better (IMO) than pharmaceuticals, because you're working with the body.

Edited November 27, 2016 by llm

[Plum99]

Thank you