Back from Pdoc
Pdoc says Brandon's free copper is too high, but his serum copper is normal. His zinc is also high, but then again no one told me no vitamins or food before testing, so he had food and vitamins about five hours before the test. She said that really you should be off the EMP for 24 hours for a really accurate test, but that is not possible. So she gave us Zinc Liver Chelate 10 mg to give twice a day, then in 2 weeks increase to 20 BID to get rid of the copper. She said we cannot chelate the arsenic until the copper is gone.
Melatonin is just not doing it for Brandon, even the Night Rest I got still really does not do it for him. So she gave us Magnesium Lactate which is 210 mg magnesium, 2-3 caps at bedtime. Dc Night Rest, only 1 mg of Melatonin and she suggested that one thing that was a little contriversal that was talked about a few weeks ago for sleep, but I decided to try the Magnesium Lactate. She said with such long term use of Melatonin, his body may have just stopped making it.
She gave us 2 sample packs of GABA and said that if it makes him tired, then there is something wrong with his blood/brain barrier, we are to try two caps at 6 tonight, and again tomorrow. Apparently if there is no fatigue, then there is no barrier issue. I suspect that Brandon has PMLS (similar to restless legs) and that is why she suggested the Magnesium, said she had an RLS person that was helped greatly by it.
She would like to do urine neurotransmitter transmitter testing, The lab she uses is Neuro Science and they charge close to $230!!!! Where else can you get it done and what are the chances it is covered by insurance? She is ordering the histamine test and I know that is out of pocket, but it is only $50.
Any opinions? Brandon is still on only 12 caps of EMP (four three times per day), 5 Aminos twice a day, garlic 3 times per day, now Choline 3 times per day, probiotics once per day, now adding olive leaf extract for the strep/yeast, zinc twice a day, vitamin D twice a day, 1 mg of Melatonin, the Magnesium Lactate at bedtime. Is this the norm? I feel like it is just all piling up.
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
Oh and she wants the PCM to deal with the low ferrontin, said she is nervous about adding iron so she wants pedi to do that or get a referral to a hematologist bc it is 14, really low.
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
This is Brandon's meds and we are adding OLE and possibly iodine bc of his thyroid????
Breakfast (30 minutes after waking)4 EMPowerPlus1 garlic1 Vitamin D (5000 IUs)1 Zinc Liver Chelate 10 mg1 Choline 600 mgProtein shake Hour after breakfast62.5 mcg Synthroid5 AminoPowerPlusProbiotic Lunch4 EMPowerPlus1 garlic1 Choline 600 mg Dinner (around 5-6)4 EMPowerPlus1 garlic1 Vitamin D (5000 IUs)1 Zinc Liver Chelate 10 mg1 Choline 600 mg 8:00 (bedtime 9)5 AminoPowerPlus1 Melatonin 1 mg2 Magnesium Lactate
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
Kim
We had the urine neurotransmitter testing done through neuroscience and Tricare paid 100%
It was through this testing that Kavinace was recommended to support GABA and that was to help Hilary with anxiety and sleep. Not sure if the controversial supp you mentioned was the Kavinace or not. It has Phenibut in it which supports GABA but the phenitbut can cross the blood/brain barrier. The Kavinace keeps Hilary asleep once she finally goes but it never made her sleepy like it does most people. So now we use melatonin in addition to the Kavinace and the melatonin does make her sleepy. They also now have Kavinace Ultra PM with malatonin in it; Hilary can't use this one because they also added 5-htp, which she can't take. As was mentioned in the other post, there has been info on the web where some have stated addiction to Phenibut, but Hilary at this point is not showing any signs of addiction and I know others who take it who have not become addicted. But everyone's different.
--
Angela B
Simpsonville, SC
otboyd@yahoo.com
Hilary (DD)-4yrs old. Mood Disorder NOS, ODD. Supplements: Kavinace, Melatonin, Inositol, Omega 3, casein/dairy/gluten free diet
Gavin (DS)-17 months
DH-43 yrs old, Diagnosed with Dependent Personality Disorder, Depression, Anxiety with Panic Attacks
Me-40yrs old, No dx, no meds
Did you have to pay for the testing out of pocket first? Then bill for Tricare?
Yes, that is the sup I was talking about. I am hesitant to try it number one bc a bottle through her was $46! and just to try would seem like a lot of money to spend. I believe Brandon slept better last night with the Magnesium, but I am not so sure yet. My primary concern is his sleep and the highly suspecting PLMS since I have it and his iron is so low. I think if we treat that, then maybe we can see better sleep and better mood. I am also going to ask PCM for another sleep study. The last one showed that he was not reaching REM sleep and so that would not be complete. He rolls and is in constant movement when he sleeps.
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
The vitamin D3 is not normally needed to be taken twice per day since the blood level should be building up. However, my younger daughter was not having results with D3 tablets, but gelcaps were supposed to be more highly absorbable. That didn't help either, so she had to go to liquid, and that helped. Some people take a higher dose just weekly rather than smaller doses daily.
Initially, YES, it piles up as we fix something which is already broken. I had cancer and have watched my own pill boxes fill to overflowing and taken multiple times per day. Sigh. BUT... I also feel really good that I can DO something to be healthier. These are things I know are actually helping my body.
My daughters both used to have to take more things than they do now. Sigh. I have to take tons more... but different problem.The worse off we are, the more it takes to get us back to health.
My little girl would just grab a handful of pills and take them in a single mouthful!
I was on Zinc once per day, but now it is twice per day. My younger daughter was once and never had to take it twice per day.
For my own high copper, I was given something called Moly-B (molybdenum). That doesn't mean I'll have to take it forever.
IMO, a lot of Brandon's problems may be his low ferritin.
And from the medical conference I was at, each vitamin/mineral can affect a multitude of others. You change the balance of one, it affects another. Add one, and you may need others to work with it.
For iodine, because I do have a slight goiter (long story) I was tested for iodine deficiency. It is done via urine testing. I think only 2 labs in the U.S. do it. It was miserable because you need a one-time urine sample followed by a 24-hour collection, at least at the lab my doctor chose. My medical insurance paid for most of the cost. From there, my GP put me on iodine pills which my two integrative doctors were alarmed about and cut my dose in half. Apparently there can be issues for some people taking too much iodine at once, especially, for instance, those with gluten intolerance (?) - but I cannot claim to understand that. But... when TWO doctors tell me the same thing, it definitely overrides the third doctor (especially when they are looking at the whole picture of me and not just "iodine deficiency").
Oh and yes, more pills... Both my kids are on thyroid meds -- Armor thyroid rather than for one, levothyroxine alone, and the other, levothyroxine plus cytomel.
For my older daughter, she is now on very little! Now she only needs her thyroid med, a bone building supplement, and a couple EMPowerPlus as a vitamin supplement.
My younger daughter is on much more, both herbal, vit/mineral (including her EmPowerPlus), and pharmaceutical.
--Jeanie aka "Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
NeuroScience billed Tricare so we did not have to pay anything up front/out of pocket. The kit came with forms to fill out insurance info and they asked for a copy of the insurance card; that was it.
The Kavinace is expensive and that's one of the reasons I'm going to try just the melatonin alone. I didn't do it right away because I wanted to wait until we got the new supps going well before I started messing around with her sleep. Our goal is also to find the underlying problem to her sleep issues and get that resolved. We're waiting for her labs to come back to see if that sheds any light on the sleep problems. If that doesn't work we'll have the sleep study done.
Angela B
Simpsonville, SC
otboyd@yahoo.com
Hilary (DD)-4yrs old. Mood Disorder NOS, ODD. Supplements: Kavinace, Melatonin, Inositol, Omega 3, casein/dairy/gluten free diet
Gavin (DS)-17 months
DH-43 yrs old, Diagnosed with Dependent Personality Disorder, Depression, Anxiety with Panic Attacks
Me-40yrs old, No dx, no meds
Ok, so he did not sleep last night per him, but he was asleep when I went to bed at ten and dh hears everything, so I doubt he was really up, but back to the Natural Rest with Magnesium and she is going to try to get us a sample of the Kavinace. He has been progressively getting worse on the decrease EMP, so I am raising it back up and we may need to go to 18. His attitude is horrible. He says he has been more irritable since the decrease. I cannot get him to do anything today! Yesterday he was not even done with school until 7!!!!
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.
Holy moly!! I just ordered the EMP and am hoping it arrives today for my dd. I had NO CLUE I had to address metals, and everything else. I will...just don't have any clue where to begin!! Does the EMP not work unless I do all of these add ons??
--
L Anxiety, Lexapro
Mom to:
T (16) Mood disorder (Depression, Anxiety, OCD, BP, SA, ADD?), Risperdal 1mg morning/night, Zoloft 200 mg., Trazadone 150 mg.
Also has hypoplastic left heart syndrome (open heart surgery 3X), Lisinopril, Aspirin
10th grade-currently going to school online at home.
J (13)
J and C (10)
Candidia is the main thing that will effect EMP and effectiveness. The other stuff may be necessary down the line to fully stabilize your child. We are doing as much as we can right now to stabilize Brandon, get as much of all these imbalances corrected as possible.
--
Kim 34 Co-Mod Military with Katie and Heather
brandonsmom_1996@msn.com
Army wife and BSW student
PLMS, Insomnia, Severe D-IBS, Special diet
Iron and Mirapex for PLMS, Lunesta, Zyrtec, SAMe
Brandon 15, BP 1, ADHD, Schizoaffective?, PDD?, IgG allergic gluten, casein, soy, eggs, peanuts
EMPower Plus 5 caps TID, AminoPowerPlus 4 BID, Vitamin D 10,000 IU/day, Garlic, Choline and protein shakes prn, Synthroid, Melatonin 6-12 mg
8th grade (held back) homeschooled-Meridell Achievement Center 4/28- 9/25
Chris, 34 dh since 9/10, Army
Cheeto the cat: Hyperthyroidism (radioactive iodine 2/8), Separation Anxiety, and Chronic UTIs, rx diet Mystic: The princess of the house and HATES Brandon
Jackson: Lab, DOB 1/13/11, training to be psychiatric service dog eventually
Fort Bragg, NC
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet.