searching_for_help

In Yasko's book, she says about MAO-A+ status: "With a Mao A + status, decreased enzyme activity lessens the ability to degrade serotonin. As with COMT V158M+, with Mao A+/+ status, serotonin cycling from high to low levels may result in mood swings or even aggressive behavior." (pg. 153, Autism: Pathways to Recovery) Yasko also has COMT v158M+ and VDR Taq + contributing to lower dopamine: "The COMT enzyme transfers methyl groups which inactivate the neurotransmitter dopamine. With COMT V158M + these enzymes are less active, and thus inactivate dopamine to a lesser extent. The VDR Taq SNP also impacts overall dopamine levels. That's why together the VDR Taq and the COMT V158 status are key indicators of bodily levels of dopamine. The composite of the COMT V158M and the VDR Taq status determines the amount of methyl donors a given individual may tolerate. The norm, VDR Taq -/-, has been associated with higher levels of dopamine. VDR Taq +/+ represents changes in the gene typically resulting in reduced dopamine levels." (pg. 142) Pg. 143 COMT -/- = need to supply methyl groups COMT +/+ = less need to supply methyl groups (my son is hetero for COMT - so I'm going to alternate!) I am just NOW reading through the book. My head is spinning... Dr. Yasko's book can be downloaded for free, here: http://www.holisticheal.com/autism-pathways-to-recovery-book-and-workbook.html

Thank you all for the input! Many things to consider... dcmom - that is amazing that her symptoms cleared. I've really felt like if we could figure out the appropriate treatment, we could get her back. Just can't quite figure out that "right" treatment. What was most affective for your child? Since the stomach problems, fatigue and headaches have all occurred recently, (and she's had other PANDAS/PANS symptoms for many years), I'm guessing she's got something in addition to her regular PANDAS/PANS problems. I've talked the doc into trying 5 days of azith, so we'll see what happens with that. (She herxed on it once before, so I think it was targeting something.) Then I think we'll start working more on the gut, and hopefully we'll have Yasko bloodwork back before too long, and take it from there. THEN, and maybe then, I can try and help my son. (Never ending, it seems...) Thank you all again!

Doc wants to put my daughter on Prilosec or the like due to long term antibiotic use. She ASSUMES daughter's stomach sickness is due to the abx. She isn't listening very well, as we've told her that daughter also has extreme fatigue along with the nausea, and one vomiting episode that ended up in dry heaves. I actually think my daughter is SICK, but I was curious if any of you who have kids on long term abx have had issues with heartburn?

Thanks, LLM! My perimenopausal brain is so used to being confused, that I just figured it was me! Thanks for clarifying. BTW - your posts on this forum have been very helpful to me. I can certainly appreciate the time you have put in figuring all of this out.

I'm so confused. LLM wrote: Individuals with a normal Vitamin D receptor, those who are VDR Taq (-/-), make plenty of dopamine. They tend not to need or to tolerate methyl groups or dopamine precursor substances (my comment - like a vitamin D supplement). Individuals for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. http://www.heartfixe...Taq Abnormality So one reason someone may not be able to tolerate a D supplement (always use D-3) is that they may have a VDR Taq abnormality. I take from the heartfixer comment that those with VDR Taq +/+ NEED vitamin D, but the last sentence says some may not be able to tolerate a D supplement WITH an abnormality. I realize I get things confused at times... could someone please clarify for me? My son is VDR Taq +/+, and I don't know whether to supplement with Vit D3 or not. What would the precursor be that he would need? Thanks so much!

So sorry you and your family are going through this. Chronic illnesses take a toll on a family. I basically have to have "pep talks" with my husband, reminding him that others are out there suffering like us, and having him read some of these forums to show him that these types of illnesses have no quick fixes (and unfortunately, seem all to common). I don't think most men generally have the patience and compassion to deal with chronic mental and physical illnesses. I'm sure your Dad cares for you. I think it's just so frustrating for them to not really know what to do. Frustration brings anger and blaming (even though sometimes they don't really mean it.) For some, it's easier to leave than to keep dealing with a situation they can't fix. It's not right, I'm not excusing his behavior, because running out on you and your Mom while you have been so ill is terrible. It's terrible for everyone. Just know that it is not your fault that you have suffered from all these illnesses. I wish he could understand that, and maybe he does and just can't deal with not being able to help you. I know there have been many times in the past when I got angry with my daughter, assuming she could just stop the OCD. Not until I started reading up on it did I realize what a nightmare it was for her. (Sadly, I'm still not always patient!) Hugs to you. I hope you find a doc who can help you find some answers. It's OK to vent... you've had so very much to deal with.

Interesting... our severely OCD daughter, PANDAS/PANS (and add in an eating disorder and exercise compulsion) is ALSO of Ashkenazi Jewish decent, has been on Augmentin for 9 months (which took away exhaustion she was having, but not much else), but we saw an improvement in mood (after a 2 day herx) on Azithromycin 500 mg. for 14 days (a huge dose!). It hasn't "cured" her, but she's able to read and enjoy life somewhat. The doctor ordered the Azith to treat mycoP. We also think Luvox might be helping, but after a while it's hard to know what all is helping!

So sorry for what you are going through. I'm sure someone will be on to guide you better than me, but it sounds to me like your child definitely needs some bloodwork done. Strep and mycoP are what we have found and treated for our daughter (so far!) Our daughter has PANDAS/PANS, and it took us YEARS to figure out what was going on, because her symptoms began more subtle. Years and years of docs and psych meds - to no avail. I finally figured out on my own that PANDAS/PANS was what was going on, and found a doc in Chicago who treats. It's been a long road, but antibiotics drew her out of her deep depression and wanting to die. We're still working on her anxiety and OCD, but making some progress after trying a different antibiotic. (That's the tricky part - you can bet she's got an infectious process going on to react like she is - but having a doc do enough testing to find out exactly WHAT is happening, and giving them the appropriate treatment is necessary. I also want to say that most docs don't know anything about this (although they should...) AND don't think because your child might not have had a sore throat or had physical symptoms that she can't have PANDAS/PANS. Our daughter rarely gets physical symptoms for any illness. She gets psychiatric symptoms. More anxiety, more bladder frequency, more depression. She did have lots of strep when she was young, but once her mental issues set in, she rarely appeared "physically" sick. So for us, the right antibiotic (strong dose) has been helpful with the extreme depression and hopelessness, and her mood and anxiety have lessened some, possibly due to Luvox (but it's rather hard to determine what is helping - as I've added quite a few supplements in as well!) Please be patient with her. We didn't realize what was going on and there were so many years I was so angry at our child's "behavior", not realizing she wasn't in control of it and she was absolutely miserable. I hope someone more knowledgeable here can lead you in the right direction.

Our daughter had been on many different abx, without much noticeable improvement, but when she went on a very strong dose of Zithromax, she got really bad on day 3 and 4 (we assumed she was herxing), and then her mood got much better. She actually laughs and smiles sometimes now, BUT, she still has her OCD intrusive thoughts, eating disorder and compulsive exercise. But it's still a better place than she was. Her doc had put her on the zith due to myco p. She used to have a lot of strep when she was young, and I'm sure that's what started the nightmare, but she was in bad shape last year after having what we think was mono. She's had no symptoms of mycop - but blood work had doc decide to treat for that with the zith. We had heard that sometimes you get worse before you get better. I think PANDAS/PANS kids react to all kinds of things, and I know our daughter rarely shows physical symptoms of an illness. Other than fatigue, her symptoms are usually a worsening in mental problems, like anxiety, frequent urination, depression, etc. So for us, the worsening from abx was only a day or two before seeing some improvement. BTW - did you struggle with the eating disorder the whole time? If so, did the Anafranil help that as well? I just CAN'T get the last 10 pounds or so on that she needs. She is terrified to gain weight.

Check your regular e-mail. My daughter just sent you the info on how to take the raw data from 23andme and run it through genetic genie. LLM from this forum made it easy to understand, and that info is what my daughter is sending you. The geneticgenie is where you find the info you need. We'll help in any way we can. I'm sure others here who are more experienced will help once you get that info.

I'm afraid I can't answer your questions, as our doc is dosing differently. My DD's myco results were IGG 4.00, IGM 1.23 Her local ped didn't seem the least bit concerned with those numbers(they never are!), but her PANDAS doc put her on azithromycin 500 mg, once a day for 14 days. My husband said that is an extremely high dose. We started seeing herxing by day 3. It's day 11 and she's feeling better, but still has the intrusive thoughts. I think, like most PANDAS/PANS kids, she probably has several issues going on, but I think the herxing shows the zith is attacking something. Seems strange they told you a months supply and you only got 5 days. Could you call the docs office and verify?

How do I determine if my kids are sulfur challenged? My son has done the 23andme and genetic genie, but I'm having trouble figuring all of this out. Is there something in these tests that will tell me how he reacts to sulfur?

I'm confused, and interested. My daughter has low bp, pulse, temp - but we have always been told it is due to her anorexia. She's been underweight for so long I can't remember if her vitals were normal before the weight loss.

I'm in southern Indiana, also. 21 year old daughter with terrible OCD (intrusive thoughts) and anorexia with exercise compulsion (PANDAS). Anxiety, depression. We didn't realize it was PANDAS until about a year or so ago. Began in 4th grade with overnight bladder issues. Lots of strep back then. Working with Dr. K in Chicago now. I'm short on time right now but feel free to PM me.

I agree with some of the statements above. Dr. K has had good success with some, but our daughter has not benefited from IVIG. He has done some more bloodwork, but I've been disappointed that he doesn't seem to look for the many, many things that seem to trigger our kids.

We used Dr. K in Chicago (I think there are 2 Dr. K's, which is getting confusing...) Our daughter had IVIG done last November, 2 days, total of 85 grams, app. 110 pounds. We paid a total of $12,600 for the IVIG, but that didn't cover the doctor fees. If we are talking the same Dr. K, the amount they quoted you doesn't sound right. We have Blue Cross, and they wouldn't cover it either.

My daughter has the same problems - very constant, intrusive thoughts. Severe OCD, anorexia with exercise compulsion. Her mind never rests. She's unbelievably miserable. So bad that she wants to die. We've tried many psych meds and IVIG. She's been on antibiotics for a long time. She seemed to worsen last year when she had mono (she was never actually diagnosed with mono, but she had extreme exhaustion for 3 weeks.) She tested positive for strep then, and that's when we started the abx, but she almost always tests positive for strep - even while being on 4 different abx. When her thoughts are the worst, she'll grab her heard and scream to make them go away. It's horrible to watch... We've also tried Lemon Balm, but that didn't help either. We're currently trying Lamictal, but she doesn't think it's helping much. Her depression comes and goes, but right now she is able to keep busy. The only thing she said she thinks might have helped a little was Strattera, but she couldn't stay on it because her weight started to drop on it. The last thing we need is more weight loss. My daughter has had many of these problems for 8-10 years, and I'm wondering if having it so long has made it harder for her to get better. Has your child had these thoughts for a long time? I hope someone chimes in with some ideas to help.

Our daughter has anorexia nervosa with exercise compulsion. She's been seeing therapists for an "eating disorder" for many, many years, to no avail. Sadly, we now realize she has PANDAS - and this all started with OCD. Most of her OCD quirks were kept hidden, but one that came on overnight was bladder frequency and leakage. It was a nightmare, and none of the professionals could figure out what was happening. She had no infections. She was in the 4th grade at the time, and she is now 20. None of the professionals she has seen (pediatricians, urologists, kidney specialists, eating disorder therapists) ever mentioned it could be OCD or PANDAS. All these years, all the time and money... We are now treating her for PANDAS, hoping to see some improvement. She ended up with mono last summer, and her OCD became very severe, with depression and hopelessness. It's been a terrible life for her. She was never really able to tell us about the "intrusive thoughts" that go along with the OCD and eating disorder. It's horrible - sometimes she'll grab her head and cry to make "the thoughts" stop. When it gets extreme, she has more "typical" OCD symptoms, like letter counting - but those things don't really bother her. So YES, I believe OCD/PANDAS can transform into an eating disorder. The thoughts and compulsions associated with OCD can be predominantly associated with the eating disorder. (You will NOT hear this from ED professionals, but hey - if this can be treated without them they wouldn't stay in business...)

Maliee - so sorry for the suffering your family is going through. It sounds somewhat similar to ours. We have a 20 year old who has also been suffering for years. She had overnight bladder frequency when young (seen by numerous specialists who could never figure it out...), then morphed into Anorexia Nervosa with compulsive exercise. It's unbelievable the number of "specialists" she has seen for this - no one addressed anything other than the eating disorder. No psych meds helped her - they've tried everything. She managed to get through high school (and like many of these kids - her grades were phenomenal - and headed for college with a great scholarship. Sadly, dropped too much weight and had to drop out. She's been home now for over 2 years, getting worse, unable to return to school. Last summer she developed extreme exhaustion, followed by a hopelessness where she just begged to die and have it over. She also developed more of your typical OCD symptoms that I didn't realize she had before, such as letter counting and some other new rituals. She was then able to tell me about some other OCD symptoms she had had when she was younger, that she knew were strange and hadn't told me about. (Keep in mind that Anorexia is ALL about obsessions with food and compulsions with exercise...) I had been reading about PANDAS online, and begged her doctor to run some bloodwork for PANDAS. (She wouldn't...) So we finally talked her psychiatrist into ordering the bloodwork. Her titers were elevated. She was on 4 different antibiotics and still tested positive for strep! (I'm assuming she's a carrier, but doctors don't all agree on that...) Dr. K had her tested for EBV, and she has had that in the past (which may explain her exhaustion last summer - a definite turn for the worst - she has never really come out of that nightmare.) She had IVIG done in December. Things really haven't been too much better until just recently - and she does seem to be a bit happier during parts of the day. Mealtimes are still extremely stressful for her. Dr. K keeps telling us to be patient - he hopes we'll see more improvement as time goes on. It's just so unreal to see our kids suffer like this, and so hard to be patient during the rage times. Please hang in there. I truly believe these are brain inflammation issues. Nothing else can really explain it. Also sorry I don't have any helpful ideas at this time - when I read your post I just felt a connection in our kid's experiences. It's a lonely, scary thing to be going through - so glad for these forums! (BTW - this is my first post on here - hopefully I'm doing it right...)