philamom

Adding my prayers. It truly sounds like this nurse is a blessing. I can't offer any suggestions- just wanted to let you know your son is in my thoughts.

Hi Leslie- I give my daughter Klaire Ther-Biotic Detox Probiotic every night. She is taking daily abx for PANDAS/Lyme. I really like the product. There is also a good probiotic drink from Whole Fields called "Good Belly" that is dairy free, but not sure of the sugar amount. Can I ask the name of the multi-vit by Allergy Research?

Thank you!

I ran the CD57 on myself. Can anyone help me understand the results? HNK1 (cd57) Panel: % CD8-/CD57= Lymphs 3.1 (ref is 2.0-17.0) Abs. CD8-CD57= Lymphs 59 (ref 60-360) LOW Then there's a list of other standard tests (CBC, platelets, exc..): High (slightly) Lymphs Low (slightly) Neutrophils Absolute Low (slightly) WBC

Make sure the script says C. Difficile Toxin (A and . They need to check for both toxins in the stool. It should read toxin A and B (not smiley face?).

Im so sorry about your niece. I have no words- it was just so sad to read. I use vita coco pure coconut water. It also comes in flavors which helps with DS. Im sorry, no pressure about chatting at all. It was just a suggestion. No worries. Have you tried Valerian root oral drops, or calmes forte oral tabs or lavender essential oil in her bath just to calm her down. taurine is another supplement that helps with relaxation along with good old magnesium of course. I hope mom and Dd both feel better soon. Thanks Jodie! I would love to chat...I'll get in touch soon. Gave her calm magnesium last night (1/8 tsp)...need to increase, didn't really make a difference. I'll try the flavored coconut water...though she's not too keen on coconut. Thanks again!

If needed, you can open the capsule and add to applesauce, exc.

My daughter had c-diff Sept 2006, May 2007, and April 2010. She has been on antibiotics since June 2009...treating with high doses for Lyme since this September. I give Florastor & Culturelle, but my fav product is Klaire ther-biotic support "detox" probiotic. It contains 50 billion cfu per capsule. I give it every night before bedtime. Sometimes I give Custom Probiotics as well. I ususally separate abx/ bentonite clay 3hours (at least 2) from probiotic...too afraid it may diminish it's effect.

Wendy- I did purchase the Sy Immune, but as with most vitamins /supplements, she reacted and I stopped giving it. I know--I need to push forward. That was a few weeks back. So I've been taking it instead. Jodie- I give her 15 drops am/pm of Burber and probiotics (300 billion- trying to increase). That's it. I try and get her to drink some Fiji water with lemon everyday as well. I don't think I can afford many more supplements at this time. The probiotics are wiping out my funds, but I really like the brand I am using, (Klaire-Thera-biotic detox). The Sonicare electic tootbrush was a kids version, but still very strong...now she keep's asking for it back (I hid it). She recently had the Great Plains "OAT" test , which showed no issues with yeast or clostridia, but I dunno. She's like a energizer bunny right now, fixated on certain activities...exhausting. I plan to check for c-dif through Quest as well. Can you recommend a brand of coconut water...I can try...she is so finicky. I would love to chat, I just need a few days -thanks! On a personal note- my husband's niece passed yesterday (age 31) of breast cancer. She first got it at age 25, was in remission until this fall. After some radiation/chemo treatments, including removal of a tumor, she was told on Dec 23rd they got it all. 10 days later, it returned and spread. She was such a sweetheart, way too young to die. Her boyfriend proposed to her last Saturday on her 31st b-day and we saw her on Sunday to celebrate. She flashed around her beautiful bling! Thanks for your responses...the support on this forum is truly amazing!

The rapid was negative. Kim- I called Dr. J's office this morning and they said to call back if it was negative and things don't settle in a few days...they would make a temporary adjustment to abx. So yes, great idea. Wendy- No new abx rotation. Her last addition of abx (Minocin) was Dec. 10th. We just recently saw Dr. J, and he felt she should continue on the same regime since it was working so well. I haven't really noticed any cycles--maybe I should start tracking symptom flairs. No access to ART here. Here are some recent changes that may be the reason for the increase?: -They switched the desks around in her classroom a week ago. There are four groups of 5. So she is now sitting with 4 new students. Is it possible one of the students could be a strep carrier, and now that she is sitting next to them every day she can't fight the constant exposure? -She recently used a sonicare electric tooth brush she received as a xmas present. Used it twice, before a lightbulb popped in my head, reminding me of her recent flair from the dentist cleaning. Is it possible that could have triggered something? What was I thinking when I bought it...it is a lot powerful than the battery operated ones from the drug store. -Her babysitter took her to a indoor play area (slides,moon bouces) on Sunday. She said the place was packed with a lot of youngster's. Maybe she's reacting to something viral. But like I said before, this feels different than her usual flair to exposure, supplements, exc. I hope we're not regressing! Tonight, she even started fixating on an activity that she used to harp on eight months ago. Uggh. I'm still keeping my finger's crossed this is just a reaction to something though! Tomorrow's the Tindamax...should make for an extra long weekend.

Thanks P.Mom, That's what I thought. She has been exposed before with increased behavior, but this feels different. I have a knot in my stomach. Usually with flairs she doesn't even realize (or mention) the increased symptoms (hyperness, oppositional behavior), but this time she came to me to tell me she doesn't feel right again. Although, she is telling me her OCD is not increasing...just her anxiety and seperation fears. I guess I'll still go to the doctor and have it done, but realize it will probably be negative...and keep an eye on the situation.

I have an appt. today to have a strep throat culture done on my dd who is showing an increase in symptoms. Will it come back negative if on abx? She is currently being treated for lyme and is on Amox (100mg), Zith (250mg), Minocin (50mg), and Tindamax on the weekends. Thanks in advance! Her appt. is later today.

My daughter started with an increase of anxiety, some seperation anxiety, age regression (fixated potty talk) this week. It's different than her usual increase symptoms of oppositional behavior, hyperness & figitiness, when she flairs with vit/supplements/exposure. On Sunday night (or Monday night -can't remember) she complained of a very minor sore throat (gave her some throat spray). It didn't look that red/sore. Next morning, she complained of minor stomach pain, but still was able to go to school. Her stools have been loose this week, but I ran out of her usual probiotic and been supplementing with one she has taken before. She is now asking to stay home from school or be picked up early. We had a good talk yesterday and this morning about her ocd (something we couldn't do before) and she mentioned her ocd is not increasing, just her worries. She say's it's been about a week. We had our follow up with with Dr. J on the 17th and she was great. She said it started after we returned home. So I am thinking of taking her to her ped today and getting a throat culture done. If she has strep, will she get a negative culture anyway, because of all the abx she's on? She's currently taking Amox 1000mg, Zith 250 mg, Minocin 50mg, and Tindamax on weekends. thanks in advance!

Great to hear there is no increase with the impetego. Yeah!!

I can't comment on the product, but we use pineapple juice at times. I don't know if would work with something that hideous though. Also someone else mentioned rootbeer is good for hiding taste. Of course, both have sugar. Great news about the improvement!!

Good Luck Ladies!!

Wilma- I think the addition of a cyst buster antibiotic (not used for PANDAS) is what helped us the most. Not to your extent, but my daughter also reacts to every med, supplement, vitamin, exc..we try. I have an entire cupboard of products that I usually give up on. How old is your daughter? There is someone that could help in NJ...not sure if he only treats adults...i will check into it and get back to you!

Is the parent of the young, sweet girl who saw Dr. J in CT on January 17th on this forum? Appt. time 4-5. I heard my daughter was helping your girl with her fear of a blood draw. Wanted to say Hi and see how you made out. Feel free to pm me. Melinda

Ooops...just noticed you mentioned it was a blood test. Thanks for sharing -- I think I'll add it to my daughter's list for next time.

Yes, I think it need's to be sent Mon-Wed. We had it done at Quest and then shipped it fed-ex. If you are having other labs drawn, they may not charge an additional fee.

Cobbiemommy- I forgot to mention...3 years ago I had horrible stomach issues and a distended stomach. By the end of every evening I looked 9+ months pregnant...I had to change outfits throughout the day. I went to all kinds of specialists, had ultrasounds, colonoscopy, endnoscopy, changed my dietary habits...in the end (5 months later) I found it to be the Starbucks non-fat Chai I began drinking in the afternoons. I'm a morning cappachino gal! After I eliminated it, all symptoms went away. I'm certainly not saying a food item is the case for you, but it just jogged my memory!

Sorry to hear about the positive H.Pylori. We tested my dtr for it last year, she was negative...but positive for Giardia. I don't know how she contracted it...she never swam in a lake or river. Maybe a swimming pool somewhere?? Anyway, is one stool sample sufficient for testing purposes? I know with c-difficile, it sometimes takes more than one sample for it to be seen. BTW- for anyone testing for c-difficile be sure to take the stool directly to the lab. They say you can freeze it, but I think it diminishes the testing. I was told by a few doctors to take it directly to the lab as soon as you can (def. not overnight).

The aquarium is called "Maritime". It's not too big which is nice...can be done in about 2 hours. We really enjoyed it! There is also the Stamford Mall (7 floors--I think) heading south on I-95 from the Darien office. We have stopped there on our way back to Philly.

Wendy- I really appreciate the updates! Interesting about the heart murmer. When my daughter had her first notable onset of symptoms in 2007, she was diagnosed with a heart mumer. Within 3 months it became a musical systolic heart murmer. Every doctor remarked how loud it was. I always brought up the correlation with the behavioral symptoms, but was told it was a coincidence.

I just diagnose myself these days! LOL If anyone (or spouse) is a hitlon honors member (they own doubletree), there is a concierge lounge on the upper floor which serves a light breakfast & dinner. The server is VERY friendly.