Suzan

Made me smile too Susan

He wasn't doing it when we went in December. I'm going to ask for it the next time my kids get stuck but won't make a special trip for it, just adding it to the growing list!

It's not that I don't want to do the omnicel per say, I kind of just want to blast her with any antibiotics I can get my hands on so part of me is thinking, why wait?! But I guess I don't want to medicate her if she doesn't need it. I know, I should have gotten the culture anyway. I'm kind of kicking myself for that. She would not like it but she can stand it. It's my other dd we would have had to hold down not her. Shoot. Susan

This is the dd with bad allergies. She has not had strep throat since we got her tonsils out 3 years ago, but she was getting V. Strep. When she has gotten strep throat in the past, she was not symptomatic (meaning sore throat mostly). Susan

My dd8 has been sick since Monday. It started out with a headache and stomachache and VERY stuffy nose. Now she has a cough, stomachache and feels like her neck is swollen with a marble stuck in it and it hurts. Plus her pandas symptoms have been starting up but they are not horrible at this point, just annoying and concerning. She does get triggered by things other than strep. I took her to the doc today and he said it's either a virus or a resistant strain of strep that is not responding to zith, both of which he's seen in the office in the past week(s). He feels it's probably the virus but he just doesn't know and because of her pandas diagnosis, he is concerned So he wrote us a script for Omnicef. He said to wait a few days and see if she gets better. If she doesn't it's probably the strep. If she does, it was the virus. So, would you wait or would you go ahead and treat? I want to do both, LOL, that sounds like a problem my dd would have! She's on 500mg of zith daily. He did not swab for strep because by the time the culture came back, we would have either started the onmicef or she'd be better and I guess the zith might make the culture negative anyway?? Susan

Except for a wild day at school where there was a sudden change for my dd8 this year, we did not have sudden onset because my girls had this from such an early age that it was always there, always getting better, getting worse. I didn't know what it was though so I was not looking for anything specific. So we don't fit into the sudden onset too well. Now when they get symptoms, it ramps up, I can see it coming usually, it's not like a big BAM! Also, they don't get raised titers, even with documented strep. They don't mount a good immune response to much of anything. I feel lucky that our docs aren't paying much attention to that right now. I do hope your doc will understand that not everyone who has PANDAS gets raised titers. I like the idea of a daily log. I do that for my dd8 so I can remember what was going on when, how she was doing, what triggered her, etc. I refer back to it a lot and I am very glad I have it as a record of her progress. Good luck to you. I think you are doing great, even with your questions you are asking yourself. Although he is not really bad now, you don't want him to get really bad in the future so protecting him now will benefit you later. Susan

This sounds like something that would work for my dd8! I am so glad it's working! That is so cool.

Oh, I want to get this done too but I have no money and I think our immunologist says don't bother too. I'll ask her next time we go. I want to do it for all family members actually, but I am confused, if you don't eat the foods often, it won't show a reaction will it? That is crazy about the tuna and grapefruit juice and tics. Wouldn't that be awesome if restricting that will help? So now you can keep those away and see if the allergy shots increase the tic or not. Good luck with the allergy shots. We are hanging in there with them. But dd is sick this week and can't get over her cold. I keep wondering if we are taxing her system too much with the shots. Susan

Oh no! I am so sorry! Hang in there, I think I'd be running for the wine if it were me! My dd8 had a reaction to either the flu or the tamiflu, not sure which, but I think it was the tamiflu. It was her next to last dose though so we just stopped it. She started being obsessed with flipping the bird and would talk about it all day and actually do it very fast and over and over! It went away within 1 day so everything was OK. Only mentioning it in case you notice anything smilar too. Glad you have a call out to Dr. K! HUGS!!! Susan

HUGS! My dd takes the crushed zith in a strawberry/banana smoothie from trader joes. I can only imagine how horrible it tastes. She cries and carries on but luckily I can get her to take it. She is scared about swallowing pills too. We've tried the candy but it just does not work. I've been wondering how you guys are doing and if you ever got what you needed from the doc. Susan

Dr. T, even though my girls tend to not mount an immune response, I was wanting to have my local immunologist perform the lyme test (at your earlier recommendation). For children who don't mount a good immune response, would this cause the lyme tests to not respond as well (like kids who don't create elevated aso titers, etc.)? I will post our results once we get them although we don't go see her until April/May. Susan

Thanks! My doc swabbed me for strep B at my request because of the kids last year. Otherwise he would not have done it. He did give me a round of zith but was not interested in retesting after to see if it cleared so you are right, it didn't help too much. My dd8 was "emergency" but there was time to try to stop the labor so maybe they have me antibiotics then. I wonder if I can get the medical records? I was pretty out of it so I don't remember a whole lot. With dd7, my water broke at 36 weeks and she was delivered that night. I guess it doesn't matter too much now though especially since I'm pretty sure I know the instance where they got pandas when they were toddlers. It is helpful to get all types of info and input on this. I did not notice after I was treated whether it helped the kids to not be exposed. They get strep in the vagina but it's strep A. Susan

My first dd was born at 33 weeks, emergency c-section so I was not tested for strepB. My subsequent dd was born at 36 weeks, an unscheduled early c-section. I don't think they had tested me yet for strepB since she came early so it is unknown whether I had it or not. I did have my doc test me last July during my physical and it was positive for strep B so now I will always wonder. Susan

Before my dd8 was put on antibiotics, she saw blue and green dots and flashes of light. They have gone away with treatment so I assume it was the strep and pandas symptoms. HUGS!

Based on our experiences, I do believe there is a gluten connection as well. I would be intereseted in learning more. Susan

Oh, I meant to comment on this to say that we never had this tested, how did you hear about it? Is it a marker only to show predispotion to the conditions? Susan

My dd7 had the organic acid test completed in 2007 and 2008 while she was very ill and before we knew about PANDAS. I pulled them out after reading your post and thought I'd share some of the results. Yeast/Fungal 4 types high in both 2001 and 2008 Bacterial HPHPA High (496.72 in 2007, normal in 2008) - lactobacillus given to break down bacteria Oxalic High (109.42 and 131.71) common to be high when yeast is a problem. I put dd on a low oxalic diet but did not notice any difference. Krebs Cycle - Succinic and Citric high (coq10 and riboflavin given to break down the succinic) Neurtransmitters VMA 8.89 (high in 2007 and high at 10.5 in 2008) HVA 8.23 (high in 2008) I can't remember what a lot of this means any more but she was on all types of supplements to try to combat this. It was our first indication of what might be wrong. She kept showing up with ASD type results but was not considered on the spectrum by any doc until we saw our current Dan! She also had mitocontrial markers. She also had low taurine, low GABA, low glutathione, low cysteine, high amonia. Now that she's gluten free and improved so much from that too, I am realizing I really should get all these tests done again to see if they have improved. I assume so since she is so much better but she is still having some issues so now you have me curious. Also, in her stool test, she had gamma strep imbalanced at +4. I can't really find what that means and I'm so curious about that now too. I only found one former post about this with similar results wanting to know what that was. Susan

We have used Nordic Naturals, I think it is great, OK tasting and no fishy burps, comes in several different ways (liquid, pills and chewables). My dd7 likes Coromega (orange flavor pudding type thing). dd8 takes Chia Seed. I can hide that very well as she is very sensitive to any omega I try. I have not heard of Omega Brite. I'll check that out too. Susan

Please let me know how the IgE tesg goes for you. I am interested in that as well, and the shots. My 8 yr old dd is doing OK on her allergy shots but she is ramped up. I can tell they are making her skin very itchy and she is more emotional and unreasonable. So far I am managing so we are going to keep on with it and try to break through to the other side. Susan

I am sorry this is happening! Do you believe your doctor will help? Like an increased antibiotic dose (if possible)? Have you discussed whether IVIG would be a possibility for her? Susan

Just a little update on our allergy trigger situation. I noticed today that dd7 is doing much better. She has stopped hitting and over reacting and no more mocking. Last weekend we covered her bed and pillows, got everything washed, carpet cleaned, etc. for dustmites. She's back on the allergy meds and I started her back on motrin 2x a day. She's still reacting to her sister but she can play nicely with friends again and pull herself together when I get involved with negative sibling interactions. Another thing I noticed is that she is trying and enjoying different foods that in the past she would not try or would try and immediately say she didn't like. Susan

My dd8 got one, her tonsils and adenoids were huge and she had sleep apnea, snored, was sick a lot, etc. After, she had an improvement in behavior that did not last but her apnea went away and she stopped snoring and stopped mouth breathing. She still gets sick a lot but she did stop getting strep in her throat although did not stop getting strep. It was a good thing for her to do but mainly from the condition of her tonsils. Her sister still has hers and so far, no reason to remove them. Susan

Our Dan! recommends Kirkman Spectrum Complete. My girls take 2 caps a day. Our Ped. Neurologist recommends Origin of Life over all others for my dd8 but she can't stand the taste. I think it tastes fine but she's very sensitive that way. http://www.vitaminworld.com/pages/file.asp...9&CPID=3579 Susan

Oh, regarding the exercise, not related to food, but I just got my dd8 up and moving.... she's doing 15-30 min a day on the treatmill and it seems to really be improving her mood! She tends to be my over-eater. I'm hoping it helps balance her out. Susan

My dd7 has food OCD issues that are worse during an episode. I buy generic protein drinks that are like Boost. If I can't get her to eat regular food I know I can get her to drink that and I feel better knowing she's getting protein and other stuff from it. It can get expensive and if she's in a good place I only let her drink one a day and push the food the other meals. Mornings are usually the worst so she often has one for breakfast. She doesn't like any smoothie I make. I don't know why. I hope the antibiotics start doing the trick and help with the food. For my dd, she normally gets her appetite back after several days. Susan