Mayzoo

Well, it is sorta nice when the doc finally catches up with what you already knew. Our last neurologist that had been seeing my kiddo for ten years always diagnosed her with a behaviour disorder, NOS which I believe meant he feels I am a bad mother. Even her screaming (vocal tic) while she was asleep was caused by bad parenting . He is the doc who found her Chiari, syringeomylia and arachnoid cysts, but those are all "asymptomatic" of course. Her true problem was her mother *sigh*. We only saw him because he was a primary as a means to see a doc in the eye clinic at the hospital we were at. Now we are far far far far..................away from him . I fear there is no hope for our old doc to ever get out of "the cave", but I am glad many more are finding the cave opening and venturing out into the real world. Congrats, as you likely helped him to see the opening somewhere along the way. Pat yourself on the back, relax today and pick up the torch again when you can.

I am not an expert, but my understanding is this: 1. Exposure to virus or bacteria from any source (grocery cart, sibling, money handling etc...) 2. Pans kid immune system ramps up inappropriately 3. Antibodies and auto-antibodies are generated in Pans kid 4. Pans kid immune system causes inordinate amounts of inflammation (some inflammation is a natural reaction to exposure and is supposed to make our bodies less hospitable for some bacteria and viruses.) 5. Antibodies and auto-antibodies attack basal ganglia instead of the virus or bacteria. 6. Basal ganglia becomes inflamed due to attack. 7. Basal ganglia inflammation and overall body inflammation cause behaviours we see as Pans. Someone else can chime in with maybe a better explanation than I have. Anyone who is better versed, please feel free to correct any area I am wrong or off in--no offense will be taken. I am just now really studying this whole thing in an effort to make a plan of attack.

"The cup" is a specific cup to try to teach kids to swallow pills. In my first post, I linked to an amazon page with several on it, then I realized the issue is not inability to swallow pills.

My kiddo is low on Taurine and Lithium (lab test confirmed), so I give my kiddo 1 Lithium cap in am and one at noon. She gets Taurine at bedtime. It seems to help with her overall anxiety and lifts her mood a tad (at least it did when we started). It was all rather subtle, no aaaha moment or anything, but still overall good.

Call a compounding pharmacy and ask if they will sell you a small amount of flavoring. It is VERY potent flavoring liquid. Then you can experiment on your own with a few different flavors mixed into a simple syrup (canning term if you are not familiar with it you can google it). If I recall correctly, normal dilution is 4-6 drops in 8 oz of liquid was enough for a pleasant taste change. If you intend to put this in simple syrup, I would double or triple the amount of drops (IE 2-3 drops in 2 oz simple syrup) because you will be further diluting the concoction. You may be able to use hard candy flavorings but I have no idea how potent those are comparatively: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=flavoring+extracts&rh=i%3Aaps%2Ck%3Aflavoring+extracts .

Cephalasporin powder, ie opening a capsule, smells like a sewer . Keflex, Omnicef, etc.......

They usually do not use doxycycline or minocycline for little kids due to the risk of staining permanent teeth. I do not remember ever seeing it in liquid, but it has been a while.

When I first posted, I thought she was just not able to swallow pills yet. Then I reread and realized it was more than that. I keep a bottle of Syrpalta around here just in case. Kiddo can now swallow horse pills, but in a super, severe flare, I have to force everything down with a 60cc syringe. Water, pudding, slim fast, meds, **everything**. It is the only way I can keep her out of the hospital for dehydration. She will not self take anything by mouth. I have grape flavor, but when I called my pharmacy they only showed cherry. Who knows what you will have access to. I had to spell it for my pharmacy and explain to them what it was, odds are, you will have to do so also. If you have to tell them what it is, just them "it is a flavored syrup used for compounding liquid meds." It is somewhat like a stronger than normal simple syrup with flavoring added.

Here are some abx recommendations: http://www.emedicinehealth.com/staphylococcus/page6_em.htm#staph_infection_treatment You may want to have her nose/sinuses cultured as well. This may have started there, and invaded the throat from there through drainage etc..... Staph in the nose/sinuses is not common, but also not unheard of. I know you do not want to hear this, but now may be a good time to test her IgG, IgA, IgM, and IgEs as she may be immune compromised as well. As I recall, Staph is more common if the person is immune compromised . BTW, you pm box is full, and I have a pm ready about Buhner's books for ya.

You might be able to get something like Syrpalta. It is a strong, sugary, flavored liquid we used for compounding. It is rarely used straight, it is frequently diluted 50/50 with water. Where I am at, it is still available and does not require a script, but check with your doc to see if that is appropriate for your kiddo and this medication. It would be a strong flavoring option that could better mask the flavor of the abx.

They do make a cup that supposedly makes learning to take pills easier. It places the pill inside a spot on the cup and when you take a drink, the pill and the liquid go down. There are several kinds, so here is a link to several kinds on amazon.com. http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=pill%20swallowing%20cup

THC is the pyschoactive component of Marijuana (causes the high). The oils Tanna and I spoke of are made not from Marijuana plants, but Hemp plants. Hemp plants are naturally very low in THC. In addition to Hemp being naturally low in THC, the process of extracting the oils for use also reduces the amount of THC in the oils we are using to less than 1%. The oils we are using are high in Cannibidiol (CBD). Cannibidiol is not psychoactive (no high) but has been shown to be antiviral, anti-inflammatory, reliefs mild to moderate pain, and helps with immune function. http://en.wikipedia.org/wiki/Cannabidiol To my knowledge if you wish to use the THC, then you would have to use the Marijuana plant in one form or another. If it is legal in your state, you can process then put Marijuana in certain foods or make an oil from it as well. You need not smoke it to receive the benefits, but each method of ingestion offers different properties/benefits. I do not know a lot about Marijuana, and it is not legal in my state, so for me it would be a moot point. The internet is full of methods of ingestion and processing of the plant.

Oh, when my kiddo acts manic, it usually means yeast is becoming an issue. Treating it usually resolves the mania within 36 or so hours. Have you had his gut tested for good/bad bacteria and yeast levels (OAT or other such test)? We have very little to no aggression, so I cannot chime in much there, but others here can.

Most my kiddos behaviours are related to inflammation caused by an out of whack immune system related to her heavy viral load. Until her immune system is repaired (working on this) we use Cannibidiol oil, omega 3's, and bio-enhanced curcumin (AKA Enhansa) daily and Japanese knotweed and motrin as needed. All these are anti-inflammatories, and we also use Melissa Lemon Balm daily as a calming agent.

When decisions are hard to get from my kiddo, I give kiddo two choices. If she still wavers a lot--and I have to have a choice in a certain time limit, then I tell her if you cannot decide, I will decide for you (I say this politely, but as a matter of fact). About 80% of the time she picks between the two, but even if I have to decide, she had fair warning.

I tried to send you a pm, but your box is full. I copied into word, so when you clean out your box, let me know and I will retry .

My kiddos is high at 10.56. Positive is considered anything over 0.99. I would suspect anyone with numbers as high as you and kiddos merit treatment as current/active infections. Kiddos is complicated by high EBV, Cocksaxie, and Varicella titers as well. We are treating with Buhner's herbal antiviral protocol. We just started on 05-05-2014.

We have tried over the counter IgG supplementation. I did not see any great improvements or set backs, but who knows what helps when it comes to this. After we finish the Buhner's anti-viral protocol, we will likely add this back in again to help the immune system since kiddo is proven IgG and IgA low. My understanding is there is a prescription version as well, but our immuno feels that will only help if the issue is limited to the gut, not systemic. I will try to post more later. Sorry super short on time right now.

My kiddo and I both recently tested positive for strep on the teeth . Both throat cultures negative, a wound in my mouth was negative, but both our teeth were positive. We are treating this as well with peridex oral rinse and xyliwhite toothpaste. I have family over tomorrow and friends for dinner Sunday, so I will not be on much those two days. I can try to answer a pm on Saturday or we can try to chat on the phone some time soon. You may to have to refresh my memory on which conditions your kiddo(s) have. I remember lyme and I believe babesia (sp?) for dd12, but other than that, I have forgotten. Buhner has another whole book for healing lyme, but his website has a lot of info on it as well. http://buhnerhealinglyme.com/ Kiddo started this protocol on +/- the 10th and she herxed for about a week on and off. Now she is stable if not looking up a bit, so time to bump the doses up .

Sorry to hear another kiddo is at risk, but glad to her DD12 is doing better. I am treating kiddo right now with Buhner's herbal anti-viral protocol for EBV, HHV-6 and varicella. She is doing fairly well, and it is time to bump up her doses. I am dreading and hoping for another herx reaction when I bump up the doses. I have both his books now, if you wanna hear about them without having to buy them. One is about herbal anti-biotics and the other herbal anti-virals. For strep throat he recommends (not sure if a 4 year old will do this or not): 1/2 tsp Echinacea Angustifolia tincture, undiluted, held in the mouth until saliva is well stimulated, then allowed to dribble slowly down throat, over the affected areas; repeat every hour.

My kiddo is likely odd kiddo out. She refused liquid meds of any kind after the first 24 hours. I happen to have hydrocodone pills on hand for my headaches, so I gave her equivalent from my pills since she outright refused the liquid lortab. She was taking all her normal pills + pain meds on the second day. I kept Popsicles on hand so I could crush them in the am and spoon feed them to her until her pain meds kicked in in the am. Sorta numbing/soothing the area before the meds could get in her system. We also keep an ice pack around the neck every morning for several days until the meds kicked in. We used pudding, Jello, Popsicles, yogurt, slim fast drinks, and broothe cooled.

I have not compounded in about 8 years, but I would imagine most compounding pharmacies have sugar substitute options now, and you should be able to request tolerable, but not super sweet. We took special requests like this and flavor preferences into consideration.

If you go to a compounding pharmacy, they can make rifampin in a liquid (suspension). We used to do it all the time. It does; however, stain like crazy anything you get it on. Sorry, no experience with kiddo and bactrim.

We tested kiddos histamine just over a year ago. It was 31.4 with a range of 10-32. This was done through a urine test along with her neurotransmitters.

Kiddo's tics are vocal. Repeating the same pattern of sounds without the ability to control them. Kiddos OCD is a bit more elusive. She asks the same questions over and over and over......................... Sometimes minutes apart, and she knows the answer. If I turn the question the around and ask her, she knows the answer, but she asks out of compulsion. She also will focus on one or two shows and watch them endlessly, and ask questions about them endlessly.