SSS

I guess I tend to look at my dd's gut issues, and her PANDAS, as 2 very separate things- although it is often quoted 80% of the immune system is in the gut.... We have the classical leaky gut over here- how it came to be, I don't know (aggressive US vaccine schedule as infants, my own gut while pregnant, who knows for sure) Dysbiosis led to food intolerences- we are GF/CF/SF- when we pulled those 100%, her willingness to eat a variety of food opened up (to eating protein.)

Last year I tried 5-HTP, and Gaba, for my dd, and they did NOT work out- (and I wanted them too.) One of the PANDAS Docs I consulted told me that these 2 things work on different areas of the brain, and he was not surprised we had negative effect- he recommended Taurine instead. For us, gut is an issue. Been working on it for awhile. It's a tough one. By the way, we do 1 mg. Melatonin before bed every night, and she sleeps well (hasn't always, of course, had our share of controlling thoughts ruling her for months on end.) The 1 mg. melatonin works just fine for us.

My dd had a rather deep-ish cut between 2 teeth that are too close together, and food always got stuck there, so I'd floss it regulary. Anyway, I couldn't get that darn thing to heal up. 2 days after our HD-IVIG, I went to look in her mouth there to see if food was stuck, and it was completely healed- beautiful, white-pink gum. $5k for a fixed paper cut. J/K. She has lost 4 teeth in the last year, and leaves them all hanging by a thread (shudder) No way, no how was I allowed to touch them. Even weirder- the food doesn't seem to get stuck between those to teeth anymore (and good, because now I'm afraid to floss it/bring the cut back somehow.)

Yes, I do wonder about the strep still lurking (in the gut or vaginal/peri anal area, as my Doc said it can hide out) guess I need to do the stool test just to see...but the daily Azith. was fantastic for the first 4 weeks- then PANDAS just went out of sight again-hence, we tried Augmentin, which caused her to stop eating almost entirely it was so hard on her tummy- we had already tried Omnicef, steroid burst, which is why I ended up going to HD-IVIG- I believe the auto-immune process was just to far gone. I believe this has gone untreated in her for a long, long time. Currently, we just started Flagyl and Keto. to try and get her gut back (and good probiotics, which I've given throughout.) My dd really does have a weak/bad gut, and it can over-shadow everything :-( She recently lost 3 pounds/stopped eating it got so bad recently. Trying to get it back in line- these new prescrips. have already got her back to eating (rough though- I have to hand feed the good food/protein, and we have die off of the nasty gut stuff.) I'm talking a long time here, lol. Sorry.

Thank you for the replies :-) Well, I'm a chicken. We have 200 mg capsules, which I had been giving daily, for 11 weeks, with a few trials of other antibiotics in between. I've decided going to change it to 200 mg. 1 capsule Sunday night 1 capsule Wed. morning 1 capsule Friday night That is 600 mg a week for a 38-40 pound girl. I think I read somewhere that Azith. has a 68 hour life/1/2 life, however you put it. I have a really honest DAN!/PANDAS Dr. who says: It is hard to tell. What the medical recommendation is, and what a PANDAS kid needs, are 2 different things. I certainly don't want an infection after HD-IVIG. Anyway, that's my plan. Thanks again---

My dd's gut is a train wreck. She has had a weak gut to begin with (food intolerences, yeast overgrowth) BEFORE we started all the antibiotics. Different daily antibiotics, steroids, me laxing on yeast feeding type food- it's a mess. I want to go to Azithromycin 1x a week. She currently weighs 38 pounds. Dr. is leaving it kind of open, sort of, he is suggesting 200. mg (my capsule sizes) 1x a week! Seems really low to try and prevent a new infection... Maybe 400 mg a week? Has anyone tried this approach to protect from outside strep? I ask for strep notices from her school, but, can't rely on that. Thank you for any thoughts.

S&S, please know it took our dd 12 5 weeks before we saw improvement in the things you mention here... Hoping for healing for all, Mary from Michigan **Thank you Mary from Michigan!**

That's great news! (not the hyperthroid, but glad it got caught) You must have been so worried...

Thank you, everyone, all very helpful to me, I have taken some notes. She has her 6 yr. old regular checkup in 4 weeks- I am going to see how the IVIG works it's 'magic' over the next month, but I think I am going to have to try my insurance folks for counseling of some sort-- And, even though she hasn't had 'problems' in her 1/2 day K, I am putting together a letter/start a 504. It's feeling non-functional here, with the OCD and breakdowns. She gets to school, but it is so much effort, between being unable to shower regulary, have her hair combed, and wearing the same 2 shirts, etc, etc. And her anxiety there :-( So sad, because she really does want to go.

Thank you so much for the replies. A couple of years ago, I did 10 months of Occupational Therapy with her for sensory- I know that swing you speak of! I am so glad it's working for you- sounds like a good idea. I guess I am interupting her in the parking lots- I want her to hold my hand, and she wants to walk the curb lines. If it were just she and I, it might be different. But I have a 4 yr. old in tow as well, and it is beyond scary. I will now not ever take them both out together with myself alone. It is just so all-encompassing. It halts all of our lifes here. PANDAS16-- these 'exorcist' episodes are a part of PANDAS. I listened to a Dr. B DVD presentation, he spoke of it thouroghly- and actually said if the child was at this point, no drugs would help- go to IVIG. I did a consult with Scott Smith, same thing. Our current DAN!/PANDAS Dr., (not Scott Smith) along with our medical insurance Dr.'s, we have tested her for quite a few things over the years. I have taken her for a 3 hour autism evaluation: They said she is no-where at all on the spectrum, but has 'mild social phobia' (LOL) Her school work is excellent, tests above average for language. Because she can choose when to do these episodes (never in her 4 years of part-time school, never in her weekly visits to grandparents) my Dr. said 'That tells me it is not a brain tumor.' And they are ABSOLUTELY tourette/loss of control of body and verbally/ in nature. She actually likes school, and I think it takes every ounce of strength for her to hold it together there (and at grandparents) and it is often after these times when she lets it loose with me. I'm her safe person, I guess. Yep, she had snack and drink in the car on the way there--- *sigh* This is so hard.

Our main issue right now w/my dd, almost 6, are these episodes. It is like a pyschotic break. She starts by the loss of verbal capacity- the swearing, name calling, it moves to attacking us, loss of control of her body- kicking, hitting, trying to bite- she is 'gone.' I had a lovely moring with her yesterday, she goes to 1/2 day afternoon K, pick her up w/her little sister, have to go to check-up for little sister. DD starts to tic at the appt. We leave, she wants to walk the line in the parking lot, then she 'loses' it- runs from us- cars are everywhere- I am beyond scared. Finally, I don't know how, I get her in the car, force her while being attacked, screamed at with names, into the car seat. She is flailing- the entire drive home, both little sis and I are verbally abused. I can't get her out of car-seat in the garage- I am sure I have bruises. Her body twists and turns to try and attack. Send my DH in after awhile. These happen at home. Never, ever once at at school. This was the 2nd episode in a parking lot. I refuse to take her anywhere except school alone anymore. To get to school, her clothing OCD is out of sight- same 2 shirts every day- won't take showers anymore- I have to force her clothes off and put in shower. We are 9 days out from HD-IVIG- I do have some lovely blocks of time with her- but it is these episodes. I don't know what to do anymore. Any thoughts? Thank you.

That's awesome Malke :-) Could you please send a copy to my email? I'd love to have it on hand.

Ditto on the steroid increasing yeast and gut problems....our 4 day burst, then a trial of Augementin SR, then IVIG with a steroid in it both days, coupled by me giving way too much ibuprofen---daily Azith., and trying to hydrate her with too many juice drinks, has done a number on her gut. :-( She barely ate for awhile, and has lost weight. We've now pulled her off everything except Cephalexin (suppose to be easier on tummy) and a probiotic 2x a day. Gave up ibuprofen entirely. We had a weak gut to begin with, and when it gets out of whack, obviously she is not feeling good, it can affect the overall picture, for sure, in this house.

I only asked because you said that she didn't respond to immuno-suppressive treatment. I apologize. **Well, we are only 7 days out from the HD-IVIG- that is what I meant by too soon to tell--have had some beautiful windows of interaction, feeling good- but we still have issues- and we also have gut issues right now--- I have been testing, trying to figure out, all kinds of experts, with this child for years. She fits/is the PANDAS profile to a 'T' took a long, long time to get here.*

P.S. I don't mean to sound disrespectful, but I don't think I'd spend $5k on a HD-IVIG, put my kid on antibiotics, ibuprofen, nor would a well respected MD prescribe the IVIG if we weren't as sure we could possibly be that my child has PANDAS. I'm sure you didn't mean the question that way, perhaps I am taking it too personally.

Are you sure that your daughter has PANDAS? Did you do the Cunningham test? YES, I am sure she has PANDAS- we did the CamK, 175, and our anti-neuronal 1 was twice the normal mean (all other neuronals in range.) Our DAN!/PANDAS Dr. (we don't have autism) clinically dx'd her with PANDAS before we had our CamK back- we have very early strep time-line. Right now, I am concerned her gut is torn up, and is part of the problem at present.

Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/ post HD-IVIG, I have to wonder the same thing :-( It is too early for me to tell. I believe our issues started from the first year of life. Just looking for improvement, at this point, relief. And we have other health variables.

Hi, it does need a Dr. signature, our regular Ped. did sign it for me, but my insurance did not pay for it- I paid for it myself. Here is the link: http://www.kimballgenetics.com/tests-celiacdisease.html

I checked my dd5 for celiac disease after we have already had her gluten free- so I did not want to put her back on gluten for celiac testing- I did the DNA cheek swab test- it was through Kimball Genetics Lab- it did give me a definitive no celiac.

I do agree about the not guessing. My DAN!/PANDAS Dr. likes the OAT from Great Plains Lab.- it does give accurate yeast/fungal markers, malabsorption/bacterial markers, clostridia, good bacteria present, nutritional markers, and more. It's why I'm sending one in today- I cannot guess what's happening right now- with all that has recently happened....

I have been told the yeast poo smells sweet, sickly, like a brewery. And the bacteria poo, like you need a haz-mat team. I give a anti-fungal (like GSE, or Diflucan) at least 2 hours away from antibiotic, and 2 hours away from probiotic- the biotin vitamin can be given anytime. Right now it's doable for us, since we are only on 1x a day dose of antibiotic.

Ha! Malke and I posted at the same time :-) We have fought the yeast beast in our dd's.

Yeast was an issue for us BEFORE we started antibiotics. Druken laughter, spinning, hyper, weepy, and her food demands are my big clue to it flairing again- when her yeast is over grown in her gut, she demands yeasty food- carbs only, apples, sugar foods- when it is in 'control' she will eat the protein meals I provide during the day easily. I am re-doing an OAT test from Great Plains Lab. right now- first morning urine, it will detail yeast and bacteria overgrowth in the gut- excellent test- but $240. with a Dr.'s signature. There is a 'spit' test (don't laugh) but hey, it is free. Set a glass of water out the night before bed, in a clear see through glass. Upon awakening, before eating or drinking anything, spit a big spit in the water, and then watch- if strings, or 'legs' or it turns cloudy, this can indicate you have yeast. Natural remedies: Drops of Grapefruit Seed Extract (GSE) must be diluted- this is a powerful anti-fungal- extra biotin vitamin- probiotics. We have done rounds of prescription Diflucan. I have read the anti-fungal Nystatin has strep?? I have no idea what is going on in my dd5's gut right now- hence, I am sending in an OAT test today- I think our trial of Agmentin SR, combined with our steroid burst, and my attempt to hydrate her excessively before IVIG with lots of juice drinks, and too many carb snacks, and of course, daily Azith. has taken a toll. HTH

We also get all our prescriptions at a compounding pharmacy- found one right in the next town over by googling: Compounding pharmacy in _____________. Was surprised to find one so close. My dd5 is not on Feingold, but we have been GF/CF/SF for a year and a half. I removed all food dyes from our house 2 years ago. She eats much better now, more healthy, but we still have gut problems :-(

Malke, I think you are doing an AMAZING job with your dd. I've gotten to know you well, and have *known* you for some years now, and what you have accomplished, your intelligence, your hard work-- what a fantastic Mother. Whatever you decide about the schooling situation (and by the way, if you did home-school for a bit, you would excel in that, too, with your patience and creative nature) it will all be okay---- xxoo Sarah