emst
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I absolutely saw improvement with the attention!
The more I am thinking about it though, the more I feel I need to describe my daughter. I really don't think her ADD is true ADD. I think it is probably OCD that causes the ADD. For example, when she is sitting down to start homework, it takes forever to get the right pencil or pen. Then if it is a pencil she finally decides on, she has to peel the outer layer because she doesn't like how it feels. Then we think we have the pencil/pen situation settled and some other issue pops up. At this point, we are 30-45 minutes into trying to start homework. All the while this is going on, her mind is bouncing to a hundred other things. It's just one thing after another and it makes getting work done very hard. Amantadine helps her follow through. Again, it's not perfect. She still has very slow starts. But we get patches of time where she is able to buckle down and accomplish something.
I said before that I did not notice a difference with OCD, but when I think about her homework in this light, I guess it is helping OCD if her attention issue is OCD like I think it is.
I would characterize our sons experience the same. To quote his teacher this week, first week of school after starting Amantadine in August he's been on it a month but she has not seen him until this week: "We continue to see nice results from the medication. We think that he is significantly calmer. He is attending better and for longer periods of time. He seems to experience much less frustration. Overall, he is much more available for learning."
I think we're seeing less OCD -= better attention.
He is having sleep problems though, tough to crack. Our DAN said we could put him on as much as 7.5 mg or melatonin, We'd only ever had him on 2.5, then we went to 5.0 but he has only slept through the night once on 5.0 though a couple nights we didn't answer when he called me and he went back to sleep.
He's needing much more exersise - let me re phrase that he's never had the stamina of a typical x year old boy, he's 10 now and seems to need a couple of hours to run around, also more hungry.
Anyone else have Sleep Issues on Amantadine, what works?
Anyone else try Namenda?
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Restless Legs are often magnesium deficiency but could also be parasites, IMO. Anti parasitic may be very harsh and cause a lot of unacceptable symptoms like runny bms, could also create space for opportunistic infections if not supported well. Are you working with a DAN Dr? Our Dr has our kids on 3 capsules of GI Microbe-X per day, we worked up to that dose. Has been quite helpful with out daughter, no signs of parasites. Our son however is similarly well though he has some difficulty holding things together in the winter months he puts things in his mouth which is evidence of parasites in our house so for that period we added an extra antibiotic, otherwise GI Microbe-X at 3x day (Amazon.com) helps with full moon effect in our house among other types of behavior. Worth a try.
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Our kids are with Dr. Nancy O'Hara and Dr. Gail Szakacs in Wilton CT for PANDAS, they have us try to increase antibiotics with a flare for example my son is in 2 tablets of Augmentin per day so if we sense a flare is starting we increase to 3 tablets per day for 5 days and we stay in touch with them, for our daughter who is well maintained on Zithromax she normally takes 250 mg per day but if we sense a flare we increase to 500 mg per day for 5 days and we stay in touch with the doctor.
Is he also on antifungals, they help.
Is he also on probiotics? Our kids are on 100 - 200 Billion, needs to be pretty high mostly in Bifido and Lactobacillus strains.
Having said all that however we get our worst OCD about 5 days after a flare.Dr. Bouboulis (Darein CT, where my kids get IVIG) says that the post viral OCD means the body is doing it's job, he says it's a healthy response which I have to say still drives us crazy sometimes, what we look for is whether our instances of OCD are getting shorter. OCD used to be 2-3 weeks long back before we started treatment, now OCD is usually just 4-5 days for my son, or sometimes for my daughter just 1 day.
Are you sure he has strep or is he reacting to other factors, a lot of kids are reacting to pollen allergens and to especially food right now, treating allergies and changing the diet even for a short time can lower the burden -- for example I need to be GF for tree pollen season otherwise I get wicked stomach aches so do my 2 PANDAS kids.
Interesting article about how berberine fights strep
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC175870/
Change his food, reduce sugar, epsom salt soak in the bath daily, reduce allergens in his home especially the bedding, sleep environment. Hope it helps.
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My daughter was only cleared of strep after 45 days on the same ABX. We switched around three times in the beginning, without any effect from any of them. Then, when we stayed on zith for 45 straight days at the "pharyngitis" strength (250mg every day for a 50lb child), she finally came up negative on the rapid and culture for strep.
HOWEVER, my daughter has tested negative for lyme, so I am not certain how that will play into things. I would imagine it will make it harder to treat the strep. Doxy can treat both lyme and some streps, but with her age they may not wish to risk the staining of permanent teeth. Maybe your pedi would consider prescribing a longer term of one ABX that is known to treat both (yet does not cause the staining) since your 3yr old kiddo is positive for lyme and strep?
We're doing some detox this week because we are on break and our youngest age 7 is dragging. The older 2 have PANDAS and typically need more support around the full moon so they get detox this week anyway but the little one had several viruses that didn't clear yest and her teacher reported a lot of attention problems this quarter, also not eating well. She's on prohilactic antibiotics because she tends to be a carrier and infect the other ones. She gets one zithromax once a week but we started that when she was well and we have it in place now for 2 years. It does help, For now I'd suggest that the advice above to get her on a long maybe 3 month course of abx and probiotix to get you out of the woods while all this drags on then see about getting her some ongoing treatment and support w/ probiotics and detox.
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I am new to this forum. The more I learn about treating my children for PANDAS, the closer it gets to gut healing and Austism healing. I would like to know if anyone can recommend a DAN MD in CT.
Thanks
We've been with Nancy O'Hara and Gail Szakacs in Wilton since 2007, all three of our kids w different issues autism, OCD Pandas, immune. Nancy O'Hara is very experienced with PANDAS, together they are considered among the very top tier in their field nationally and internationally. Take advantage of your proximity. They seem expensive up front, but not when you consider your time (we can do phone consults vs. seeing the neurologist in the city where it's a half or whole day off school for my son or work for me to have a 15 minute chat) also consider their extensive clinical experience -- who else has this many pandas patients?. I find them very efficient and streamlined actually especially compared to other big name Neurologists and MDs we see in the city. Worth it. Check out their site for details on becoming a patient. LMK any questions.
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Have you tried magnesium for constipation? We used mag ox when our dd had severe impacted constipation, generally people are good on mag citrate or a tri mag blend. It is also very calming, one of the most depleted minerals in general.
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Tpotter,
Now that I read your post... We see Dr. B next week for the first time. Does he typically test the whole family? We have a 2 year old and a 5 month old. We were going to leave our 2 year old home because of the 8 hour travel time, but am now wonderinf if I should bring him....
Dr B gives you a script for bloodwork. Almost always he has you do it elsewhere. In our case we has our blood and our youngest's blood drawn at LabCorp and the results ent to him. We do now however have our DAN draw all bloods for our two kids with PANDAS.
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We have done a lot of NF w our 2 kids one w PANDAS ADHD OCD and one with the same + Autism. My sense is as you are presenting it adjunct with psyc care it would be helpful in calming. There are definite physiological effects to NF and up front they can look negative as the body adjusts so it should begin very slowly even just a few minutes working up to more time each session. It's tempting to rush. But, it also wears off after a while and you need to keep doing it unless you can do approx 60 sessions in an intense time period then you can own more of the change. Having said that I think it ultimately helped the kids discover calm. These kids may have never experienced it and certainly need a lot of support. They may have never known it, they may have never known how to get it but at least now they can say when they are not calm, and that's a gift -- their ability to self identify, self advocate was the big gift of NF as well as the diminished flight response in my son which I am sure was a gift to him but selfishly has probably prevented me having a heart attack from the bolting and the running away.
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Our Dr rec for our daughter we use
l-Theanine 200 mg in the a.m. 200 mg after school
2 capsules of Norlox a.m.
5htp in the a.m.
300 mg pycnogenol in the a.m. -- we worked up to those doses
Nordic Naturals EPAxtra 4 capsules a day
She also gets Magnesium Citrate 500 mg in the evening
Kirkmans every day multi - important to round out deficiencies
For sleep we use Hylands sleep tablets and we give Kirkman slow release melatonin 2.5 mg
Most of these supplements available at "Lee Silsby Our Kids" pharmacy (enter the shipping code FREE) they are crazy nice and crazy fast, Norlox I get on Amazon.com
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Here's a list I got from another board that I keep on hand, important to remember anxiety isn't just anxiety it is a symptom of body dysregulation - you'll need a few tricks in your bag.
Anti-Anxiety Solutions
Posted by: "autisminfomaniac" autisminfomaniac@yahoo.com autisminfomaniac
Mon Feb 9, 2009 6:46 am (PST)
Check with your DAN doctor on specifics...
hese Substances may Alleviate Anxiety
Substances that alleviate Anxiety are known as Anxiolytics
(also known as Sedatives).
Alcohols
Dimethylvinylcarbin ol may alleviate Anxiety (due it sedating the CNS).
[more info]
Amino Acids
5-HTP (5-Hydroxytryptopha n) may alleviate Anxiety. references
Acetyl-L-Carnitine (ALC) may reduce Anxiety. references
Arginine (combined with Lysine) may reduce Stress-induced Anxiety.
references
Anxiety may be caused by Histidine imbalances. [more info]
Lysine (combined with Arginine) may reduce Stress-induced Anxiety.
references
Phenylalanine may alleviate some cases of Anxiety. references
Taurine may alleviate Anxiety (by sedating the Central Nervous
System). references
Theanine may be useful for the treatment of Anxiety (due to its
ability to stimulate the generation of (relaxing) Alpha Waves in the
Brain). references
Threonine may alleviate Anxiety. [more info]
Tryptophan may alleviate Anxiety. references
Tyrosine may alleviate Anxiety. references
Animal-Derived Supplements
Stabilium may alleviate Anxiety - the effect of Stabilium is described
as being mild. long-term and subjectively subtle (compared to the
powerful but short-term effects of Benzodiazepines) . references
Enzymes
Pyruvate Dehydrogenase may help to prevent Anxiety (by inhibiting the
conversion of Pyruvic Acid to Lactic Acid).
Hormones
DHEA (Dehydroepiandroste rone) may alleviate Anxiety. references
Supplemental Melatonin often may alleviate Anxiety (due to its
ability to bind to Benzodiazepine Receptors). references
Supplemental Pregnenolone may be useful for the treatment of Anxiety.
references
Lipids
Phosphatidylserine may alleviate Anxiety. references
Minerals
Anxiety may occur as a result of Calcium deficiency. Calcium may help
to prevent Anxiety by lowering elevated Lactic Acid levels. references
Anxiety may occur as a result of Iron deficiency. [more info]
Anxiety patients are often deficient in Magnesium and supplemental
Magnesium (400 - 900 mg per day) may alleviate some cases of Anxiety.
references
Anxiety may occur as a result of Potassium deficiency. references
Anxiety may occur as a result of Selenium deficiency and supplemental
Selenium may reduce Anxiety in such patients. references
Neurotransmitters
Gamma Aminobutyric Acid (GABA) prevents Anxiety messages from reaching
the motor centers of the Brain by filling the Benzodiazepine Receptors
within the Brain - Vitamin B3 and Inositol are essential cofactors for
this process. references
Low levels of Histamine may cause Anxiety. [more info]
Anxiety may occur as a result of insufficient production of Serotonin.
references
Polyphenols
Apigenin may alleviate Anxiety (by binding to and activating
Benzodiazepine Receptors). references
Chrysin binds to and activates Benzodiazepine Receptors - this
activation of Benzodiazepine Receptors may help to alleviate Anxiety.
references
Ferulic Acid may alleviate Anxiety. references
Gamma Oryzanol may alleviate Anxiety. references
Smart Drugs
Centrophenoxine may alleviate Anxiety. references
Dilantin may reduce Anxiety. references
Dimethylaminoethano l (DMAE) may alleviate Anxiety. references
Gamma-Hydroxybutyri c Acid (GHB) may alleviate Anxiety (by enhancing
the function of Gamma Aminobutyric Acid). [more info]
Gerovital (GH-3) may alleviate Anxiety (especially in the elderly).
references
Nimodipine may alleviate Anxiety. [more info]
Ondansetron may alleviate Anxiety (by antagonizing the 5-HT3
Receptors within the Brain, facilitating the release of Acetylcholine
and preventing excessive Serotonin activity). [more info]
Oxiracetam may alleviate Anxiety. references
Picamilon may alleviate Anxiety (without producing sedation). references
Piracetam may alleviate Anxiety. references
Pramiracetam may alleviate Anxiety in Alzheimer's Disease patients.
Pyroglutamate may alleviate Anxiety. references
Vinpocetine may alleviate some cases of Anxiety (where Anxiety is
caused by Cerebral Insufficiency) . references
Zatosetron may alleviate Anxiety (by antagonizing the 5-HT3 Receptors
within the Brain, facilitating the release of Acetylcholine and
preventing excessive Serotonin activity).
Sulfuric Compounds
Methylsulfonylmetha ne (MSM) (3,000 - 9,000 mg per day) may alleviate
Anxiety. references
Vitamins
Folic Acid (especially when administered concurrently with Vitamin
B12) may alleviate Anxiety. [more info]
Inositol may alleviate Anxiety (by enhancing the ability of GABA to
bind to the Benzodiazepine Receptors in the Brain). references
Vitamin B1 may alleviate many cases of Anxiety (by activating the
Pyruvate Dehydrogenase enzyme, thereby inhibiting the conversion of
Pyruvic Acid to Lactic Acid - Lactic Acid is an underlying cause of
Anxiety). references
The Niacinamide form of Vitamin B3 (1,000 - 6,000 mg per day) may
alleviate Anxiety (by enhancing the ability of GABA to bind to the
Benzodiazepine Receptors within the Brain). references
Vitamin B6 may alleviate Anxiety. references
Vitamin B12 (administered concurrently with Folic Acid) may alleviate
Anxiety. [more info]
Anxiety may increase the body's requirements for Vitamin C. references
These Foods/Herbs may Alleviate Anxiety
Aromatic Oils
Neroli Oil (vapors inhaled via Aromatherapy) may alleviate Anxiety.
references
Fungi (Mushrooms)
Reishi Mushrooms may alleviate Anxiety. [more info]
Herbs
Ashwagandha may alleviate Anxiety. references
Black Cohosh reputedly alleviates some cases of Anxiety (according to
folklore). [more info]
Brahmi may alleviate Anxiety. references
Chamomile may alleviate some cases of Anxiety (by sedating the
Central Nervous System). references
Corydalis may alleviate Anxiety. references
Ginger may alleviate Anxiety. references
Ginkgo biloba may alleviate some cases of Anxiety (especially when
Anxiety is caused by Cerebral Insufficiency) . references
Gotu Kola may alleviate Anxiety. references
Green Tea may be useful for the treatment of Anxiety (due to the
Theanine content of Green Tea stimulating the generation of (relaxing)
Alpha Waves in the Brain). references
Hops may alleviate Anxiety by sedating the Central Nervous System
(primarily due to the Dimethylvinylcarbin ol content of Hops). references
Kava Kava (300 mg per day) may alleviate Anxiety (primarily due to
the Pyrones content of Kava Kava). references
Korean Ginseng may alleviate Anxiety. references
Magnolia may alleviate Anxiety. references
Marapuama may alleviate Anxiety. references
Passion Flower may alleviate Anxiety (primarily due to the
Bioflavonoids and Harmala Alkaloids of Passion Flower sedating the
Central Nervous System). references
Sage may reduce Anxiety. references
Saint John's Wort may alleviate Anxiety. references
Skullcap may alleviate Anxiety. references
Shankhpushpi may alleviate Anxiety. [more info]
Valerian may alleviate Anxiety. references
Zizyphus may alleviate Anxiety. [more info]
Seeds
Coriander Seeds may alleviate Anxiety. references
In-Tele-Health © 2006 (from Hyperhealth Pro CD-ROM)
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Messages in this topic (1)
10.
These Substances may Cause/Exacerbate Anxiety
Posted by: "autisminfomaniac" autisminfomaniac@yahoo.com autisminfomaniac
Mon Feb 9, 2009 6:47 am (PST)
These Substances may Cause/Exacerbate Anxiety
"Anxiety may occur as a result of over-proliferation of Candida albicans."
Aldehydes
Acetaldehyde may cause Anxiety. references
Alkaloids
Anxiety may occur as a result of Caffeine withdrawal or from excessive
consumption of Caffeine (caffeinism) . Caffeine may contribute to
Anxiety by elevating Lactic Acid levels.
Excessive consumption of Ephedrine may cause Anxiety by causing
excessive stimulation of the Central Nervous System (CNS). references
Anxiety may occur as a result of Nicotine (i.e. Tobacco Smoking)
withdrawal.
Excessive dosages of Yohimbine may cause Anxiety in some persons.
Amino Acids
Excessive consumption of Aspartic Acid may cause Anxiety (by causing
over-stimulation of the N-methyl-D
-aspartate (NMDA) Receptors in the Brain.
Excessive consumption of Glutamic Acid may cause Anxiety (by causing
over-stimulation of the N-methyl-
D-aspartate (NMDA) Receptors in the Brain.
Monosodium Glutamate (MSG) may cause Anxiety (by causing
over-stimulation of the N-Methyl-D-
Aspartate (NMDA) Receptors in the Brain.
Excessive dosages (more than 1,500 - 2,400 mg per day) of
Phenylalanine supplements may cause Anxiety. references
Tyramine may cause Anxiety (by overstimulating the Adrenal Glands and
depleting reserves of Norepinephrine) .
Environmental Toxins
Amalgam Dental Fillings may cause Anxiety (due to the Mercury
component of Amalgam Dental Fillings): references
- Epidemiological evidence indicates that young people with
Mercury-containing Amalgam Dental Fillings have a greater incidence of
Anxiety compared to young people with no Amalgam Dental Fillings.
Food Additives
Aspartame may cause Anxiety (primarily due to its Methanol content).
Hormones
Excessive production of Adrenaline within the body may cause
unpleasant over-stimulation that manifests as Anxiety.
Excessive production of Cholecystokinin (CCK) may cause Anxiety.
Minerals
Cadmium may cause Anxiety.
Excessive consumption of Copper may cause Anxiety.
Exposure to Mercury may cause Anxiety. references
Organic Acids
The accumulation or production of excessive amounts of endogenous
Lactic Acid (produced within the body during metabolism) may cause
Anxiety (this form of Anxiety is known as Lactate Induced Anxiety
Syndrome (LIAS)). references
Pharmaceutical Drugs
Long-term usage of Barbiturates may cause Anxiety.
Anxiety may occur as a result of the Withdrawal Syndrome associated
with cessation of Benzodiazepines use (despite the fact that
Benzodiazepines are usually initially used to treat Anxiety).
Bupropion may cause Anxiety in some persons.
Anxiety is a common side effect of Clomiphene (a Fertility Drug).
Anxiety may occur as a result of cessation of usage of Minor
Tranquilizers.
Prozac therapy may cause Anxiety (due to the increased levels of
Serotonin associated with Prozac).
Recreational Drugs
Although Alcohol (ethanol) may temporarily alleviate Anxiety (by
binding to the Benzodiazepine Receptors in the Brain), long-term or
excessive consumption of Alcohol may cause Anxiety (by damaging the
Benzodiazepine Receptors within the Brain) - Alcoholics usually
experience Anxiety as a result of Alcohol withdrawal. Alcohol may
also contribute to Anxiety be elevating Lactic Acid levels. references
These Beverages/Herbs may Cause Anxiety
Caffeine-Containing Beverages
Anxiety may occur as a result of withdrawal from drinking Coffee (this
is due to Caffeine withdrawal).
Herbs
Excessive consumption of Ephedra may cause Anxiety (this occurs from
the Ephedrine component of Ephedra causing excessive stimulation of
the Central Nervous System).
These Ailments may Cause Anxiety
Digestive System
Anxiety may occur as a result of over-proliferation of Candida albicans.
Metabolism
Anxiety may occur as one of the minor symptoms of Fibromyalgia - 62%
of Fibromyalgia patients experience Anxiety, Irritability and
overconcern without any specific precipitating events causing these
feelings.
Anxiety may occur as a result of Hypoglycemia.
Anxiety may occur as a result of Hypothyroidism. references
Pyroluria patients may experience Anxiety.
Nervous System
Anxiety may occur as a result of Adrenal Insufficiency. references
Anxiety may be caused by Cerebral Insufficiency (impaired Blood
Circulation to the Brain).
Over stimulation of the N-methyl-D-aspartat e (NMDA) Receptors in the
Brain may cause Anxiety.
Nutritional Ailments
Anxiety may occur as a symptom of Pellagra.
In-Tele-Health © 2006 (from Hyperhealth Pro CD-ROM)
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We were at the Opthomologist yesterday w/ appts for my 2 w/ PANDAS and me. The Dr. explained that she can see toxins floating in the interstatial fluid around the eye, the Dr. also said I had more toxins than my son (oh, great.)
She said that I should focus on Detox, whatever method suggested by my practitioner (Pure Body Clear) and she suggested taking Vit. A, C and E.
I explained to her that it started to become obvious that my son had a vision problem as his PANDAS improved and many of the PANDAS symptoms and viral symptoms started to fall away. My kids were both diagnosed with near sighted, far sighted and convergence problems. Previously my daughter had a mild nearsightedness. My son's eyes were just fine according to the other Eye Drs we've seen. This Dr. said in passing that that shes seeing far sightedness caused by PANDAS. Anyone else with similar problems?
Thanks,
Erin
Hi -
Pmoreno writes in one of the latest posts, that the daughter "is complaining of seeing floaters (little things floating around in her visual field). This is something that she had complained of last year when her PANDA symptoms were at their worst."
My 8years old PANDASson is complaining of seeing floaters as well when his PANDASsymptoms are at their worst.
Is any one else experienceing this ??
And : I have tried to find an explanation, but with no success. Have any of you come across such an explanation ??
Best regards - and all of the best wishes for you all and your children
PANDAS_Denmark
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They are taking 2.5 MG or 250 mcg? The tablets I have are 3 MG tablets and I break it down to very small doses. I tried taking a whole 3 MG myself, and I was very groggy upon waking and I didn't feel right. I think the most I've ever given him is 1.5 MG so 1/2 a tablet. Most times I break down the tablets as small as I think he needs for the night so the dose is never consistent. I just started back with our cal/mag supplements so hopefully that will help, too. GABA made him tic more and L-theanine made his OCD go out of control so I try to stay away from anything that affects the GABA receptors right now. I'm a bit gun shy.
They take 2.5 MG, time released which does affect them differently then a regular 2, or 3 MG that is not time released would. That would knock them out, might give them nightmares like the previous poster said, it used to happen.
I feel that a boy of 12 probably needs more than 1, 1.5.
Also you want a supplement without a lot of fillers, sometimes the same dose in another brand works better. We do like Kirkmans because it is free of gluten and allergens that bother my kids. We get it at Lee Silsby OurKids mail order, generally if you enter FREESHIP they ship free over $40
I've read that a lot of kids with immune issues do have a mild hormone imbalance or deficit and they are just not producing melatonin properly especially in their ill state.
Yes, taking another look at calcium is a good idea. It can be very calming. Please also look at magnesium for calming, and products like kids calm that are magnesium based and address basic deficiencies that can worry these kids bodies, cause sleeplessness or as you described very wired, unable to settle down.
Good luck.
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I posted over on the TS side of the boards but they aren't very active over there. I know many of you deal with sleep issues so I figured I'd pop my question over here. My ds(he's 12) has been having a terrible time falling to sleep. Last night he finally feel asleep at around 12:30 AM. I had given him 600 mcg of melatonin to start and he said he took it at 11:15(so that was pretty late to begin with). At midnight he was at his wit's end and wanted to sleep so I gave him a 12.5 mg tablet of Benadryl. Then at 12:30 when he couldn't sleep still, I upped his dose of melatonin by 300 mcg. Anyway, he finally fell asleep but I don't know if that was exhaustion or because I had to up the melatonin.
My dh thinks that ds had trouble getting to sleep because we have been having some really sweet dessert treats after dinner, usually around 8:30 or so. So, I told ds that we need to cut out sugar after dinner and see if that helps. He basically told me that he felt wide awake at midnight. He said that every time he went to close his eyes, they would spring open and he'd be wide awake. I am taking him to a new GP on Friday to discuss some of his issues but I am so exhausted myself right now because we've been up so late. Any suggestions?
Melatonin works when you have a melatonin deficiency. I've been working with the impression that any time you go higher than 3-5 then perhaps melatonin is not your sole need. Our Kids are younger 8 and 10, they take 2.5 mg time released melatonin (Kirkmans) every night more because it keeps them asleep vs. knocks them out.
Other things you could add when you're feeling the need to go higher: Calcium and Magnesium combo, these kids need magnesium (!); GABA you can go up to 700 mg but try 100, 200 mg first; a Gaba/Theanine combo called Zen is nice with 200 mg of each as I recall; 100-300 mg of L-Theanine is very relaxing. All of these will address different deficiencies in these kids bodies. Evens them out. Works for tired parents too.
Love L-Theanine for homework anxiety.
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That threat haunts my conscience sometimes, but it did seem to work for our son: it brought him back from the brink.
HTH Sometimes all you can count on is that deep down he knows you love him and that that love stronger than PANDAS. The not so empty threats are all you got -- been there -- we're all working hard to not need them. You get a pass.
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How do you measure dopamine level?
NeuroScience has a saliva test. Do it on a day when you ll be close to home all day. $258
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I wanted to know from patients of Dr B
Where do you get your high dose IVIG done?
Do you go to the hospital in Stanford?
At home?
Will he send orders for you to have it done locally?
I have a son with Autism and PANDAS (very hyperactive) and am trying to determine
how to get this long protocol done with him ( 2 days 4-6 hour IV'S)
and still have it overseen by a the immunologist.
Any advice very much appreciated.
We are about 2 hours away from his office.
Carolyn
There is an infusion center at the Darien office. Benadryl and Motrin given at the center seem to help. There is cable TV, reclining chair, blankets (not for the parents LOL) 6 hours is tough, the staff is great, you get through it. iPhone, Leapster, whatever your child's interests bring it, bring a big bag of snacks, you get through it.
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Our DAN Dr. suggested Gaba, a natural anti anxiety supplement, for DS's anxiety. Anyone have any info and tried this? I overthink everything b/c kids are already on abx, steroid, Omega 3's, Culturelle which are all warranted but adding one more thing to the mix is always scary to me especially when I haven't heard of this before the Dr. told me Monday. I found it at GNC but would love any info. Thnx in advance!
My kids take both Theanine and GABA best to start at about 100 mg and wok up slowly to max 700 mg. It can be very calming. It is sometimes used for subclinical seizures as well, calming.
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I have read older posts and know this has been a subject matter, but still would like to get information on this. My d has had this happen a few times before. Yesterday, she had vision changes while she was at school. She described it as she could read her books but could not read the board and everything far away had a halo or fuzzy looking. She had a headache and took 2 advil and made it through the day. She amazes me at what she is able to do. She is only 12. Has anyone found out what is going on when this happens/ if it happens at all?
Yes, it happens to my son. It is not lack of eye contact but seems like a real aversion to long, sustained gaze. He avoids the TV, need low light, has a hard time looking off in the distance for more than a fleeting look and prefers to play close with small toys not big games that involve large space.
There is an OT on this board who asked about OT related PANDAS symptoms back in August.
I asked her about it at the time.
I should ping her. I'll re-post if I hear anyting.
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i am sorry to add negativity to this post. . . i just want you to realize that if/when you do something like that. . . you open the door to many people to be a part of your world. i know you are asking for help in identifying strep. . . but you are also opening the door for other parents to then ask questions and have discussions with the teacher and each other about your child that may or may not be good and/or helpful.
i wrote something to friends of mine that i had previously for whatever reason discussed pandas with in my son's class asking for their help on input on what they had observed about his behavior either themselves or what their children had told them. it turned bad when one of them discussed it with the teacher and she took on a different take that i was undermining or not trusting her. i was stunned one of them discussed it with her. i won't be that naive again. there wasn't anything bad in it but it took a turn i hadn't anticipated.
granted -- you are talking about a different situation -- but you are involving many people, some of whom you may not really know -- i just want you to think about that.
you may want to write a letter that can then be sent by the teacher or school personnel that refers to "a child" in the class and not specifically your child.
No worries about sharing the potential downside of writing such a letter. You are kind and generous to share your experience with me and the group.
I have 2 kids w PANDAS in 2 different schools.
My instincts tell me that this kind of letter would never fly in my daughter's school. Instead we've met 1:1 with her teachers w. the nurse and principal and asked them to actively enforce the school's sick/home policy by phoning parents and sending sick kids home until they produce strep test note from a doctor. The nurse was thrilled to have a me come and prompt it because especially as the kids get in to later elementary years the parents don't report strep to her, they just send them to school sick or never have them checked out in the first place. How much did I know about Strep before we met PANDAS. Very little.
So strep reporting is up in that school but only because of the newly revived practice of sending the kids home.
My son is an an 8:1:2 program and he is not in our home district so the dynamic is very different, his social world outside of school is closer to home.
The teacher so supportive, for the sake of the kids she teaches, because it gives her leverage to get the parents to send the kids for a test.
I guess I should hope for the best but brace myself for a little back biting.
Thank you for your reply.
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When my son's school found out that he had pandas, the guidance counselor went right to the principal and asked if they could send a letter home for his classmates. Basically it said that if your child is ever diagnosed with strep, please inform the school nurse so that I, the parent, could decide if I need to keep him home or not. It stated that the information they give the school nurse will be confidential. It stated that he has a "severe reaction" to strep. That's about it. I don't have it on file to forward to you. The principal signed it.
I was really surprised about how serious they were taking this!
Hope that helps.
Good ideas, thank you!
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SF Mom once posted an amazing letter on here and now I can't find it. I'll try to message her and ask if she still has it.
Wow, thanks!
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Anyone send a letter to classmates parents?
My son's teacher is so helpful and really on board but so frustrated with other parents who do not take their kids for strep tests when they have a sore throat. She asked if I could write a letter imploring their help to help my son. Anyone do this? Anyone have a letter they could share with me?
Many, many thanks!
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I think that biofilm helps if there is residual strep in the gut that you can't get rid of. If the pandas symptoms are from viruses or other bacteria elsewhere in the body, it won't help. Regarding chelation, I am under the impression that chelation helps autism and other issues, and theoretically should help decrease the overall autoimmune response in the body, but I'm not sure if it will "get rid" of pandas. I know our DAN practitioners have done chelation on their kids and they are still left with some pandas issues that they need to maintain. Just my 2cents!
I agree. Biofilm is good for us, good when you have a body that harbors toxins. There is a DAN notion that Bacteria-Virus-Yeast-Metals form bonds in which it is very difficult to extricate one from another. We have done Biofilm and we've seen some remediations and calming of general symptoms from virus and bacteira.
Having said that in short courses it's not a cure.
People can do well on this when they do it for a long time. Or not. I think it's worth a trial.
Personally we did all do it for 8 weeks once. We now get on it in short bursts 1-2 week when we have bacteria or virus in the house because frequently we'll have just enough of a reaction that we just get foggy or aches & pains and can't shake it unless we do biofilm. There are lots of different ways to do it but upfront is generally an enzyme formula that will break down cell walls of yeast or virus, next is anti fungals, antibiotics or meds for whatever your issue is, and last is stomach calming (small snack like crackers) followed by fiber and or activated charcoal away from other supplements. We like charcoal better but fiber helps some in which case I'd advise both based on my family's experience.
We also note that when on antibiotics like most recently Zithromax we tend to show lower reading for toxins in general and for toxic metals in particular, perhaps bacteria holds metals (?) and antibiotics help rid bacteria. We note also that on the downside we do have a lot of yeast on antibiotics = yes, it's wack a mole.
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I was just bumping this post in hopes of some suggestions. My youngest son is still ticcing but not showing any other symtons of PANDAS. Is it possible to have one child with PANDAS and one who could just have TS or could this be early signs of PANDAS. My youngest had tons a strep from 15 mos to 5. he is seven now and i guess i worry so because i have been through this with my 15 year old and dont want to miss this window of opportunity to treat while he is young.
Is it possible to just tic for a while and then later develop more of the classic PANDA symptons? My 15 yr old son has the classic PANDAS Symptons when he was 7-8. Anxiety, night fears, OCD. tics. He is just not getting treated for PANDAS.
The only test i am waiting on is the Cummingham. Just curious what others have gone thru since we clearly do not have one of the "overnight" onsets and he is neg for strep at this time.
i just feel so out of control and feel like i to need to be more proactive.
help!!
FWIW, I just read through this whole thread. I have 2 with PANDAS and the 2nd has symptoms that are quite different than those of the first. The first is very emotional and oppositional the 2nd is depressive which for years we thought was his saddness over her illness and her behavior which dominates the house, the mom craziness etc. Dr. B told us he'd not seen numbers as high as my sons on any but a couple 2-3 of the Cunningham tests he's seen and he seemed quite grave when he gave me that news. (And also FWIW believe me, I'm watching my 3rd kid like a hawk.)
Robin
FWIW, I just read through this whole thread. I have 2 with PANDAS and the 2nd has symptoms that are quite different than those of the first. The first is very emotional and oppositional the 2nd is depressive which for years we thought was his saddness over her illness and her behavior which dominates the house, the mom craziness etc. Dr. B told us he'd not seen numbers as high as my sons on any but a couple 2-3 of the Cunningham tests he's seen and he seemed quite grave when he gave me that news. (And also FWIW believe me, I'm watching my 3rd kid like a hawk.)
Is it possible that parasites could be the only problem?
in PANS / PANDAS (Lyme included)
Posted
Not sure the only problem but it can be a really big deal for some, night and day. Magnesium deficiency is often significant and debilitating for lyme folks, autism, pandas you name it, as you know. Our DD had severe similar to what was described above, personally I think Oxypowder is great but there are several other types of magnesium that may benefit your other issues - i'd suggest adding mag. Citrate and or mag. malate to what you're taking for additional neuro benefits beyond the consitaption challenges. Mag Ox pretty much just cleans you out is least likely to address a deficiency. That said, parasites flourish because there is imbalance in the gut. We've benefited greatly from probiotics on the order of 100 -200 billion per day -- a lot! and a product called GI Microbe X 2-3 caps per day to address parasites and gut balance.