EmilyK

At the moment yes but I'm hoping they can go for both kids before long. His brother has lots of tonsil and adnoid issues and is also often on abx to manage them.

DS is two weeks into Augmentin and we are seeing consistent improvements with sleeping and eating and school/homework participation. But just like the round of penicillin last spring, the cough/throat clearing goes through the roof, he pops up in here and there low grade fevers, random itchy little rashes that crop up for 24 hrs and then disappear. The leaping and twirling business of the last two days is a new one. I feel like we're in a ballet audition. But I will take coughing, leaping, and twirling over starving, no sleep and rages. I'm not keen on the off and on rash and fever business. Is that herxing? Anyone else have this pattern? We do lots of probiotics, omega fish oil supplements, vitamin D, melatonin, plus some ibuprofin and benadryl as needed too.

How do you get her to take the tumeric? Is she swallowing a capsule? I'm not sure I could get DS to swallow more than the Augmentin he already does. He hates anything cooked with tumeric. Always looking for ideas

Great quote - thanks for sharing!

TWO ENTs have already said nothing is wrong with her so we are thinking they are tics from PANDAS or Tourette's and not sinusitus related. We even traveled to California and there was no change in her vocal tics. So I wonder how a nasal steroid spray would help at all? They do stay localized to the nose but it seems that her nose really isn't the issue. Good luck - I hope you can get her some relief!

Are you allergic to cow's milk protein? That's my allergen. So I'm wondering now about camel's milk.

Do they have any idea what the allergy trigger for all the nasal swelling might be and can the trigger be avoided or treated via allergy shots? I use flonase and it does work great without all the side effects that come with an oral predinose burst (which I have had in the past for asthma). However, I do much better and need less flonase when I can successfully avoid and reduce exposure to my allergic triggers.

NIH on PANS PANDAS is specific to strep, while PANS broadens triggers to things like lyme and mycoplasma.

It's really hard. We keep DS going to a therapist weekly and half the time she takes both boys and twice a month DH and I check in. We still feel like the craziest house on the block. Saturday a nice breakfast with grandpa and time in the park dissolved into a mess when my DS melted at walking past a yard sale. Thank goodness DH can pick up 50 lbs and go 6 blocks uphill without a hitch. But once we got home our neighbors got to watch DS run out of the house and down the street 4 x times while DH followed and brought him back 4x. This past week my other DS who does not have PANDAS but has always had his own set of needs has started to throw screaming fits out of sheer competition I think. It's been fun. So there I was last night folding laundry at the table with shrieks all around me thinking how crazy it was but at least I could do one thing - fold the laundry. Hang in there!

We try to follow a less inflammatory diet - so we avoid artificial preservatives, food coloring,MSG,hydrogenated anything, and processed foods in favor of fresh, non GMO, meat from pasture raised animals free of added hormones; we try to get lots of probiotics in foods as well as supplement form and give vit D and omega 3 supplements too. I watch the sugar intake and we use mostly raw honey, molasses, and real maple syrup when we sweeten. I try to ensure that they get good quantities of veggies and protein as they would eat nothing but carbs all day long if allowed. I wouldn't call it a cure but I do believe it helps. I can tell you that personally, my energy has improved, my allergies and asthma are far less likely to flair, and my water retention issues disappeared once I made this switch.

We use Culturelle and lots of Kefir, so I hope that keeps his gut in pretty good shape. Dr B did ask me to continue to keep a log of behavior. Very happy for this board pointing me in his direction!

I'm in RI and we just went to Dr. B in CT yesterday - completely worth the 3 hours one way in the car. Pawt. Memorial had a longer waitlist and I was already done with more waiting.

So we got to see Dr. B today and what a relief to have some thorough testing and some immediate treatment with long term plan. I'd had quite enough of the others with their admonishment to keep doing what we're doing (therapy and OT) and see how he is in 6 months - as if that was working for us. DS even managed to swallow the giant Augmentin pill without a hitch tonight. I'm very curious to see what all the labs bring. He was tested for everything under the sun and DS2, DH, and I are also getting testing for strep and mycoplasma titers finally. Given the rate at which DS2 and I tend to get sick, we'll no doubt turn up something. So it was worth the total 6 hours in the car and 2.5 hrs in office and lab (they were super busy today), and for the first time in a long time I feel a small measure of peace.

It helped when my mother-in-law called when DS was in a full scale rage and she got to hear it, and then our good friend called and heard one too. Then I video taped one. Weekly therapy for DS plus biweekly check in for hubby and me as well with 1x a month including DS2 has been ongoing for 9 months - another must for our survival I think. And a GP who is not a PANDAS expert but is openminded enough and gets enough to reassure us that we're doing good work and not to blame ourselves. I also share the resources from the various PANDAS websites and IOCDF with family and friends. Plus they see the change from how DS used to be and how he is now even though he works really hard to hold it together when in front of anyone but myself and his dad. That inflexibility and just right need creep out a bit even if he doesn't melt or rage out of the house. But I too have my moments where I'm sure many people must think I'm the nutcase crazy mom. Keep working for that 100% though, mild or not. Good luck!

I never thought to try baking soda, which I use myself, cause I figured he's just hate the taste - however, he probably would appreciate the super clean feel of it. Won't hurt to ask! He doesn't fight the dentist, so far. So I think he likes the super deep clean feeling and they use bubblegum or strawberry. I don't know why he didn't like Uncle Tom's strawberry toothpate other than maybe the texture and foam. I saw a recipe for baking soda, coconut oil, stevia toothpaste. They added lemon and peppermint, but maybe we could find some other flavor to add that he would go for. He hates almond. He loves real strawberries, so maybe I could get that in there somehow. He won't let me brush for him but once in a blue moon he'll let me floss. I too suspect some treatment once we see Dr. B on Tuesday will be the biggest help of anything. Given his age, we have plenty of tooth loss and new tooth growth going on which I'm sure began it all. I keep looking for cankersores and things, but no signs of that or of red gums. Thanks for all the ideas!

DS refuses to brush his teeth and can't stop picking at them - rips his fingernail between them. I've purchased vast varieties of tooth paste and brushes and mouthwash. He has a strong aversion to anything strong tasting including cinnamon and minty things. He has an rx mouthwash but it's minty and he won't use that either. Rewards haven't helped so far. He knows all about tooth monsters and cavities but that doesn't spur any improvement. Not even just brushing with water or using a giant qtip like swab. I did find one bubblegum flavored xylitol gum. He uses that. But he stil picks at them like crazy and tells me "has to do it" when we're on him to get his fingers out of his mouth. Seems to be a new compulsion. Yesterday he complained of doing it at night when he wakes up too. Poor kid. What else could I try to help him get past it?

I've got it on my list for Dr. B next week and I'll keep an eye on it for sure. I think I won't waste my gas money driving back to Children's for anything. I'd much rather spend it on going to the Boston support group I think. We're in RI so not too far away although not right there.

Today we finally got the titer results from testing on June 27th at Boston Children's. I don't understand the delay in getting them or why I had to badger them to get them, but we got them at least. The bloodwork was drawn at the tail end of three months of penicillin with his first negative throat culture that week too (he'd been positive on 4 previous throat cultures in april and May and June). His ASO titers were only 195 but his Anti Dnase B was high at 533. We also finally got the local dr to test for lyme after the neuropsych confirmed that indeed lyme could also play a role in the anxiety/ocd. So another success after 4 months of asking to rule out lyme. I am hoping we get those results before we see Dr. B on the 11th and I'm relieved to have the titers data for him. I'm not sure about the appropriateness of the timing of the titers test or what the results mean on the heels of three months of abx. The neuropsych gave him a laundry list of dx - Anxiety with OCD traits, ADHD, dysgraphia, LD math, LD NOS (fluency) and the 504 meeting is next week. We'll see if we stay with 504 vs IEP given the results. All summer he's been complaining of leg pain and tired legs. He's active but never used to complain of that. Anyone else hear this much? I'd like to think it's just growing pains, but I don't know. What all do folks bring to Dr. B besides lab results? I do have logs of symptoms and behavior. The hives have been new this summer and initial allergy testing is coming up normal. There doesn't seem to be any common item across hive events other than about 20 minutes after eating. Bendryl nips it just fine thankfully. So the allergist is saying idiopathic hives at this point. Melatonin has been a great thing for sleep. I just this week found a variety he will agree to take, and it's been wonderful to have him asleep by 8:30 rather than pacing the floor with anxiety. I hope we can get on a course of decent treatment with Dr. B's visit so DS can start to get some relief! Emily

I wonder if this sensation and issue is why my DS will stop eating saying he's convinced he will throw up? He's never described it as choking, but I am going to ask him more about it.

It's anxiety for my son that keeps him up. We're using the workbook that someone on the forum recommended to me - What to do When You Dread Your Bed. It helps him go to sleep easier at a decent hour although he's still on the futon in our room and still does crawl in my bed around 3 am. But we are sleeping and not up all night at least. Good luck!

Must vocal and breathing tics always be repetitive or can they vary quite a bit? We are hearing lots of odd noises from ds that we can't begin to explain, but they are not repetitive in nature.

Personally, I find the GAPS diet very anti-inflammatory. It's a bit challenging for me as I'm allergic to eggs and nuts though. Been trying to implement with my ds too.

Well, we haven't let him miss school yet. Thank goodness he's only 7 and not bigger. I try very hard to get him out to other things too although we allow a little more flex with restaurants and such. I'm afraid to give into it would be a downward spiral for him, but sometimes I feel pretty mean insisting that he get out and go.

Do any of you see school refusal morphing into camp refusal, restaurant refusal, public event refusal? That's been increasing for us although not as severe a meltdown as school refusal. I believe it's anxiety related - anticipating that the event will be too noisy, crowded, etc. and then not wanting to go out at all. If we can get him there, we have a good chance he'll do fine.

We got a brand called lock laces that are bungee like. Glad to know of additional ones posted here