JenniferG

I started dd9 on Enhansa on Friday. Over the weekend she felt nauseous and yesterday developed a low grade fever. Is this typical? She also takes Augmentin Biaxin and is on a steroid taper. Her anxiety/OCD has been greatly escalated. I am sure you are familiar with what's going on here. BUT yesterday she crossed the street and played with her friends all afternoon!!! Without me!!!! First time since September! It could be the Enhansa? Steroid? Combo??

Capsules, gelcaps and softgels can all be opened on put into food or drinks. Not sure about the flavors, but here is what I found: Thiamin 50mg capsules Folic Acid 500mcg (.5mg) drops Vitamin E is in a gel cap and can be opened and squeezed out onto any food. CO Q 10 softgels 100mg (open and squeeze out) Creatin powder (measure to needs) Levocarnitine Liquid You can combine all of these together as one dose in say one drink, unless the flavors are too hard to mask (as far as I am aware), but you need space each "dose" out by 6-8 hours if at all possible. All these links are to Amazon, but there are many internet sources for supplements. Iherb, Vitacoast, etc. You can google "where can I buy vitamin supplements" and get a whole list of suppliers for price comparisons. Good luck. Thank you!!!!!

This is the list recommended for my 3 children. I have located some. But the are mostly pills or tablets. I was curious if anyone knows if they come in a liquid or powder and how they taste. Thanks!! Thiamin 50mg Riboflavin 50mg Vitamin E 200IU Folic Acid .50mg CoQ10 100mg Creatine Powder 2.5 grams Levocarnitine (Carnitor) 165mg It says to take 3 times a day. Do you/can you combine doses?

Any specific brand? Thanks.

When I increase the dose of probiotics, or, get anxious and just give them too much, my kids get hyper and/or restless at bedtime and have trouble falling asleep. I try to give then early in the day.

My dd9 weighs 58lbs. Starting CoQ10 and other antioxidants. Is there a weight dose? What other antioxidants are you using?

We received the first have (mtSEEK) from Courtagen. Still awaiting the second part (nucSEEK). Spoke to Dr. T. He said the nucSEEK basically explains the mtSEEK. He said that all 3 of my kiddos have the same mutations that has been common in kids with PANDAS. He said, "don't panic, knowledge is power." Love him. Anyway, I was curious if anyone was familiar with the Courtagen test and maybe had the same variations and what was done about them. Their variations are in ATP6 8843T>C lle 106Thr. Multiple Heterplasmies I am sure I totally messed that up. If I could figure out how to post a pic, I could post the actual result. Thanks for any input!!!

We have been searching for months what the infection is that is making Meg react. We started a treaent of Augmentin and Biaxin for H Pylori and she had a HUGE decrease in anxiety in 24 hours. But it also was a liquid that really irritated her throat. So after a few days we stopped it and the anxiety returned. So we start today on the tablet. I was just wondering what experience has anyone had with Biaxin as far as what were they treating? Thanks.

On Sunday we started treatment for H Pylori.....amoxicillin 400 2xd, Biaxin 200md 2xd, Prevacid 30 solutab. Meg has been nauseous and had stomache pain for months. Treated for Parasites for 2 weeks. No relief. On Tuesday we started Valtrex again. The compounding pharmacy was able to finally make it. We saw big gains when she was on it for just a few days, but then had to stop.....the pills were too hard for her to swallow. So, Wed.......no bellyache, at all. No nausea. No complaints at all belly wise. Could the H Pylori treatment work that quickly? GI MD said we could see some signs of improvement towards the end of the 2 weeks. We started Valtrex because her brothers get HFM several times a year and HSV. I did some reading on Cocsackie virus. It originates in the gut. Could the Valtrex be taming her gut pain???? Her anxiety is going down a little...it's only been a couple days. Here is the catcher.....my nephew slept over Sat night. Woke up coughing and crying with a SORE THROAT and a fever. Ugh. So by Monday Meg has a cough that progresses into a very bad sore throat. Yesterday was very bad. Red spots on her throat...no white spots. Her sinuses are congested. She hasn't a documented case of strep in a few years....she was always on ABX. she has been off for months because of. C Diff etc. I think the Amoxicllin coverage for Strep is more than 400 2xd...same with Biaxin. Will she culture positive on these meds?? Sorry for the convoluted mess......it seems to be our story.

I called and asked Silky for a copy of the report to be emailed to me so I may review if before our next visit.

17k?!?! Oh my. I had to pay $600 up front. $200/kid. And they said if the insurance didnt cover it the $600 would cover it. I sure hope that's true!!

We didn't get a chance to talk about it. Dr. T's mother passed away this AM. I will post when we reschedule.

Curious to know people's experience with Courtagen testing. Kids had theirs done. Have an appt with Dr. T. today to discuss results. I was just curious how it is interpreted. Thanks. Jen

Tried Celexa this AM. And tonight she tells me she wants to put a gun in her nose hole. Exactly the reason it took me 6 months to try it. Any suggestions for natural remedies??? Edit.....more OCD than anxiety.

Our vet does a throat culture on our dog. He has done it a few times. No strep...but staph was found and treated.

We saw ID. He told me her anxiety was from watching the news. Ugh. He gave me Amoxicillin for 12 months and sent me on my way. We see a LL DO here in CT. Her lyme test were through Clonical Lab Partners, a CT based lab. I have a couple of times about Babesia and Lyme. He didn't offer to redo tests and didnt seem too impressed with her results. We did find 3 parasites in her gut. The copy of the Metamatrix results I received are in black and white. I saw the sample online in color seems easier to read as far how "positive or negative" they are. I have child psychologist pushing Celexa....I have been delaying. I just KNOW their is something causing her anxiety/OCD and I don't want to band aid it. What else could we possibly test for?

Then it def is a side effect. It happens the whole time she is on it.....1 day or 1 month..

We were supplementing with Florastor for C Diff. We stopped right before the test. We suspected some of her symptoms were coming from the Sacc B. when we add it in, the air hunger returns. When you add something new and a symptoms exacerbates or a new symptom comes in the picture this could be herx? I know that is the definition of a herx, but I guess my question is what would a hex from Sacc B??

I don't think it is a tic. She says she can't a deep breath.

Is it possible to have a Sacch B overgrowth? Meg's were very high in the stool analysis. And it seems her symptoms (air hunger) would come back with Sacc B

She has been tested. Everything neg except pos 41 band. Could be the H Pylori (Spirochete). Heart block? As in clogged artery?

I have a difficult time explaining my questions and making long stories short. So here goes....... Before Meg was diagnosed she had high fevers(103-105) for 6 months on and off. Neg strep cultures, vomiting and sore throat tho. The Pedi tested her iron, it was really low, so they put her on iron. Just about the same time she was diagnosed PANDAS and put on abx. Fevers gone, anemia gone. Fast forward to now.....you all know her deal....out of school since Sept...OCD/ANXIETY, C DIFF (now gone), H Pylori, parasites. Nausea frequently. Chest "hurting spots", some infrequent dizziness, SOB upon exertion, decrease in appetite, chronic fatigue and pale and now some hand tremors.I have tried on numerous occasions to feel/listen to her heart when it hurts..nothing, except tonight....I caught a flutter. She is currently on Alinia for 2 weeks. And acyclovir. I am wondering if: A. She has Rheumatic Fever because of the not being covered by abx. This is why the chest hurting spots, SOB B. She is anemic. Also because of not being covered by abx and possibly Rheumatic Fever. C. Her nausea seems to be improving since starting the Alinia. ( killin parasites and H Pylori)???? D. She has had a problematic belly for a long time. NSAIDS and ABX has given her many "bellyaches". Could the H Pylori be causing an ulcer? Which might explain nausea and no appetite. And why she grows more pale and nauseous each we restart ABX?? Just thinking and thinking and thinking............

I could only view Part one. Cherry juice? No potatoes or tomatoes? Does anyone no why? Was that his personal triggers or that generalized for everyone? We eat potatoes a lot!!!!

Is there a difference between treatment and prophylactic dose?

I was just wondering if anyone uses anti virals daily? Since we started 10 day treatments, when we are off of it the kids seem to get symptomatic again.