faith

Hi Maryann! how are things going with your girl? ( From what I've followed back a ways, there was discussion that the EPA should be higher for ticcers, that's what seemed to be the consensus. you can look back on some old threads. so loks like you're on the right track. I know they use higher dha for adhd type, and that seems to maybe not be so good for the ticcers. so hopefully higher EPA will be a better formula. I don't give it and havn't for a long time, just don't want to take the chance and then even if it is not because of that, I will think it is, lol! let us know how it goes if you use it. (not spending too much time on the forums lately, but hello and best regards to all my old friends that I havn't talked to in a while... I do still think of you all..... ) regards Faith

I'm sure you could find it at the Vitamin shoppe or the health food store...if they don't have it they could probably order it for you. You could mix the Natural calm with a very small amount of boiled water, and then add some natural fruit juice, just a splash so she doesn't have to drink too much, I know my son doesn't like the sour taste either. If you could find capsule form, you could open the capsule and hide the powder in a tablespoon of apple sauce.

If you feel the Attentive Child helps her, then by all means stick with it, however I would like to point out that sometimes things that have a good effect for attention, sometimes have negative effects on the tics. If this product contains magnesium in the form of aspartate, perhaps try a different form, as sometimes people find aspartate being more of an exitotoxin rather than a calming. so maybe try a product that is magnesium citrate or another form. avoid oxide as it is poorly absorbed. Also, it might help to up that dose a little, 120 mg. is pretty low, you could give 3 to 400 as long as it doesn't have an laxative effects. Only suggestion I could give for the antihistamine is maybe try a more natural product, there is one called D-hist jr. that you could google, it is made of quercetin and some other supplements. you could experiment to see if it helps. I think the no dairy trial is a good one, and may very well help, but you'll have to experiment to see what effects the antihistamines have.

stacilynn, how old is your boy now? tic free for seven months? you've said what you think helps,.do you think it was accumulative? how did it go, one day it just stopped, or got less and less? how much kids calm to you give? thanks Faith

how much magnesium do you give and what type? just wondering. you could try upping it a little.

cobbie, how did you find that your boy is not releasing bile? did you have any blood tests recently? does it show any problems with liver or you are just worrying? could I ask what meds he is on presently? could you list?

Wendy, but your child is being treated for lyme, right? you have stated that he has had some flairs of symptoms since, which you call herxing...how do you really know it is from that and not from being exposed to strep or even 'having it', (albeit showing no symptoms of it, which can apparently be possible in pandas).....??

great and thanks!

I'm shedding a few tears tonite too..I will be praying for all of us.... blessings, Faith

Megan, could we get an update on how your child is doing on the Progressive multi? just wondering. are you stil giving it? how are the vocals? and how are the mood/crying spells? can't think of why that Also, just looking the ingredients, I was noting that even tho there is not a high amount of magnesium, those other 'green food supplements' are probably a source of magnesium as green vegetables are usually high in magnesium....so that may be a reason why this multi is working out well for your child. just a thought I was looking at this as I've started playing around with magesium more lately, actualy trying out different forms and higher amounts. not having any great results, but trying to be patient, not expecting any immediate results. So being that I don't give any other vits at this time, I wonder if I should start (wondering if the reason the mag doesn't seem to help him so much is because I'mnot balancing with other vits, as this multi may be doing).....I don't usually like high dose vits for my son, I always think he doesn't do well on them, so I just keep them out. but wondering if it is a good idea to just give mag alone, I know that the Bonnie Grimaldi vits were formulated as even tho she thought magnesium was key, it needed to be balanced with other vits.

jayjay, what kind of herxing is your child experiencing? is this just since the abx for lyme? what did Dr. Cunningham say about the Igenex results?

Thankyou for you reply We only stoped telling her to stop kissing her teeth as people kepted looking at her like what a rude child She has had a urine infection and then a chest infection in the past 2 months As far as we know her food as not changed She dont live with us and we dont get told much from her mum/nan this problem was only brought up when we said we was worryed about her and they then said they know Could this tics be caused by the infections ? Nat, I just feel the need to point out that just because a child has any childhood 'infection' such as urinary or bronchial, etc. does NOT mean that these necessaryly 'cause' tics. I think its important for those seeking advice to undertand this is only a factor if one has an 'autoimmune' reaction or condidtion such as PANDAS (pediatric autoimmune neuropyschiatric disorder, associated with strep). Strep has been the one most studied, and some other bacterial infections are being investigated, but I do want to point out that just having one of these infections does NOT just cause tics in most kids. could it play a role? maybe. but it that is to be determined by your doctor and in context of the other symptoms and medical work up of your child. I just don't want people to think that any ordinary infection 'causes' tics...in most of the pediatric population, it does not. If it is playing a role, there is somehting more going on with the chld, and that needs to be investigated. Faith

hi eljomom, Dr.L. will talk with you and your dd for a while and taking family history, etc. When we saw her,I was used to talking with docs first before my son joined us, but she had him stay and asked him if he wanted to. Actually I had not really used the word 'tics' with him prior to that appt. last year, and she was the first to introduce that word to him. i wasn't totally comfortable, because I wanted to explain first, we had just called them habits or problems, it was just a word that stuck, I hadn't ever said tics. So just a heads up for that, .. he was fine with it and understood, and after that it kind of made it easier for us to just refer to them as tics. but I was nervous in the appt. because I had not been comfortable talking about this stuff in front of him, I didn't want to upset him and yes, make him think something was 'wrong' with him. But he knew we were seeing a doctor about this issue, as we have been to many other type docs before, so what we told him is that we are trying to find out if there is a reason that he has this and this doctor might be able to give us a certain type treatement and we just wanted to talk to her. Ask all the questions you have and hear her answers, jot them down if you have to, have a pen and your folder of notes in front of you. she probably will ask your daughter some questions, maybe about how she feels about her tics, etc. You'll be right there the whole time and Dr. L. is a very professional normal type woman, nothing quirky about her, so I'm sure your dd will be comfortable. There is the Washington Zoo nearby, so if you are staying overnight, you could spend the next day doing some site seeing, we did that and it helped to just incorporate the doc appt. with some family time. good luck! Faith

hi eljomom, I think you and I are in pretty much the same exact boat, symptom-wise and test results are very similar. I have investherigated Pandas all of last year have seen two of the top Pandas docs talked about on the forum and have tried the antibiotics (actually this was the second time and I was revisiting it and trying again due to some urging of pandas parents)... I have much of the same questions and concerns as you. We did try the augmentin and after that, the azith...i did not like the azith, I did feel he was worse off on that, so I did not continue. Some will say it takes being on abx for some time to see it working, but I personally do not see that as being so, one, because I would think abx should eradicate the infection if there was one, and if not, it is just there to prevent the next one...and even then, I see that kids are still getting strep after that, I hve seen reports of. so I just don't know. rememember too that abx can contribute to yeast and gut problems, thus possibly causing more and more food intolerances due to leaky gut, all of which can ALSO contribute to symptom increase. I think it is not at all a stretch to see that abx can be part of the problem. Now that said, IF the abx are definitely helping and are being used to eradicate the bacterial infection that is obviously and definitely causing exacerbation in these kids, than I beleive it is then warranted and the benefits outweigh the cost. My advice is that if you are comfortable at the level of tics or ocd that your child has, I see no harm in trying out and employing other means to manage the symptoms. I think it should be said here that if your child is 'just simply tourettes'...that should be okay. I would hate to see someone plod along and shoot in the dark with the different pandas treatments that are not exactly benign if it is not definitvely pandas. I think someone needs to say this. it is okay if your child just has some tics or ocd, there ARE other ways to manage. That all said....we have talked before...I do think it okay to do a trial of some abx, just to see. I personally think everyone should try it out just to see what the reaction is. I don't think it should take months to see a difference, I think if it going to help, a month would be enough to see an improvement. more if you like, but go with what the doctor says. If you are afraid of azith, understandable, that is actuallly one of the last abx they give, and I think Dr.T. gives it because usually some come to him after having already tried others and azith seems to be one of the strongest. So if I were in your shoes, and I WAS, I would try amoxycilin first for whatever time you are comfortable, a month if you like. The next would be augmentin, which is just amoxycilin with an additional ingredient called clav acid which I beleive helps it take effect better, you'll have to read up on that, I'm a little rusty there. But anyways, those two abx, I don't think cause too much of a problem,, these are the ones used when someone has strep or even bronchitis, so if your child was sick wtih something like that, its what they would give, and sometimes I think its just doc's preference of what abx to give. If you see any adverse reaction, you just stop giving it, and it should be okay. sorry to write so much here and hope I'm not confusing you...but just because your child doesn't show concrete evidence of Pandas doesn't mean you have to dig to the center of the earth to find something to prove it, sometimes it just isn't there, and I think it should be okay for some of us parents to accept that our kids have tics and some ocd and maybe some other behavioral issues that may be managed in some other way There IS a such thing. This is not considered giving up, but looking at other angles and even if it is illness, there are other ways to manage some of this. I don't regret having traveled the road of Pandas, but I am personally not willing to keep on when there is just nothing there,..if something surfaces, I will be ready, but I just don't have a kid that gets strep, so what to do? pull it out of thin air? I don't have a need to call it something else, but I can assure everyone here and there that my eyes are WIDE open, I am looking at EVERYTHING, illness included. Caryn...if you see this, do you have anything to add re the abx? thanks. eljo, what are your child's tics presently? if you had to give a number from one to ten of the severity of your daughter's symptoms (all), what would you give. would you gauge it as mild, moderate or severe? I would say my son was mild until he started a couple years back with a more noticeable vocal tic and so I say he is moderate, but only because of the vocal. So bottom line, I would try some abx and just see what happens. regards Faith

My son has vocal tics, where its basicall a 'ahUH' type grunt or sometimes a higher pitched squealy thing.... does your child ever make any grunts or sounds when not speaking? what you describe sounds like my son, as when he is doing his vocals (which btw, are pretty frequent for him, quite noticeable)....and then he says something, he will sort of repeat the first word or a word that he is saying in tht same high pitched tone, ..its sort of a way to get the sound out by making it seem as tho he is just saying the word in a funny way, kind of a 'masking'.... like he'll say "oh Yea, and the Yea will go up in pitch....he's doing that to get out his sound. I know this becausue he's told me, as he got upset when I mentioned it and questioned him why he was doing that... I know its hard not to worry about what course this will take, but I don't think it necessarily goes in a worse trajectory, it could very well resolve and not go any further.