Missmom

I check my ds tonsils quite frequently for redness, but have noticed these blister looking things on the back of his throat. Anybody else ever had issues with this. They have been there a while, not really red or anything just looks like clear sort of raised blisters. Could it be a cancer sore on throat?

My son is on a treatment dose of aug and is currently at about 95%. He is still ticcing but it is not very noticeable, except to my husband and I. We have tried to transition to a prophylactic dose three times now and each time we reduce the dose the pandas symptoms start to increase. It is so frusterating. We have an appt. in the morning with the neurologist who is treating my son. I am praying she will have a plan for us. I literally have no more augmentin refills left and he will take the last dose tonight. After the previous 28 day dose we tried he was at 100%. That lasted two weeks so I thought maybe reducing the dose would be ok. I was sickened then after two days to see the symptoms return. He has not returned to that 100% again. At least I know that it is possible to get back to 100%. Just need a good plan. I would advise you to get as many refills as you can and if your child gets to 100% make sure that they are there for at least a month before trying to reduce the dose. Apparently two weeks was not long enough for us.

I read a post a while back where someone had success with folic acid supplements. I have not tried this yet but it is in the back of my mind as something to try if needed. If I remember correctly she was giving twice the reccomended daily amount and it took several weeks but stopped all tics. If anyone else has had success With folic acid please chime in.

Yes it can be allergies, colds, viruses, exposure, a lot of different triggers. I will type more later but short on time right now.

Is he on abx? Can you get a doctor to rx him anything? Abx help my sons tics. It usually takes a few days to get into his system but gets him to about 95% better. He has also had the lip licking. We used heavy Chapstick. My son is always extremely bothered by the blinking tic when it happens because it hurts his eyes to blink so hard and so much. I know it is awful. I feel your pain.

Yes, we have been tested and we are ok. There could be someone in school though-- so hard to avoid And I know he does react to other people's strep because last year his older brother had strep and he reacted but did not test positive. Ugh! So if he is reacting to someone else but he is negative what is the best course for you to take? Start abx. or ride out the flair? I always wonder when my son tests negative but is obviously starting to flair what others of you do. Right now my my ds is taking full dose abx. He has been taking them for two months but is about to run out. Hoping our dr. will prescribe more? I am going to order some olive leaf just in case we can't get any more.

We love hot Lipton tea. Thanks,,, do you get it at target, Walmart,etc?

Does Azith work for strep? Great! Probably will have him swabbed anyway, just to know. DH walking in the door with the Azith right now!! It should work.....

Does it really matter if you have him swabbed for strep if he is going to be starting the azyth? Or do you just want to know for your own records? I would get that azyth filled right away and hope to stop this right away.

Never heard of it... How does it taste? Is it a hot tea or an ice tea? Just curious, thx.

Also, if you are giving liquid some parents say that the liquid aug... Starts to lose its potency after a week or so. So by day 14 yours may not be as effective. Just a thought.

My son is one who benefits from vistaril, but mostly antibiotics. So what explains the effectiveness of long term antibiotics?

Did you know there is a clinical trial for Zithromax and I think they are still recruiting?

I have not done any research for vistaril, just going by what our ped. told us about it. He said it has been around for a long time as an antihistamine but over time they have realized it reduces anxiety. It is available generically and is pretty inexpensive. We only give our son one 25 mg pill as needed up to four times a day, but most days I just give one at night because that is when his sinuses tend to flair and his anxiety spikes. The pediatrician feels it is a pretty safe drug to try and is non-addictive. It has worked great for us. Not sure about it being a muscle relaxer but again we give the lowest dose but it seems to be enough.

Agree with ko's mom, extend the abx for as long as you can. If all they checked for was strep titers and your sons trigger was a sinus infection it would make sense that the titers were not elevated. You will need to fight for your son. It is not easy and it may take some time but do a lot of research on this site and others and print out whatever necessary to take with you to your appt. or consult. There is a list of treating doctors on this site and others that may help you find a knowledgable doctor close by. Good luck.

I am not sure if it is the same cream but our neighbor is an ob/gyn and prescribes cream that they use during circumcisions for some of our girls before they get their ears pierced. They never feel it. That is a great idea to use the cream.

Wow..... No wonder you are confused that is a lot to keep up with. I think if you could provide a little more background info more people could respond to your post and try to help you. Are all three children pandas/pans... Any confections? Each child may need a different level of care or respond differently. Do they each have different levels of symptoms?

I also wonder if any of them got any vaccines before school this year? But I also agree that the time of year is suspicious?

Have not seen this on any of the national news networks yet!

Missmom, Please don't bring politics into it. There will be no government bureaucrats involved in the way the rhetoric apparently has you believing. The insurance company bureaucrats are the problem being discussed at the moment. Keep in mind that NIMH is a government agency and all of the clinical studies that have been done on PANS/PANDAS have been government-funded by government researchers. Insurance companies will be under much more pressure to cover IVIG for PANDAS if this second NIMH study also shows that IVIG is effective and is published in a peer-reviewed journal. I'm far more worried about making sure the NIMH continues to be funded well enough to keep doing PANS/PANDAS research. (Paul Ryan is no friend of the NIH -- Cuts to NIH funding) Let's keep the thread and board on point and discuss PANS/PANDAS and our kids' struggle with it, and not throw out inflammatory political opinions --it's a sure way to destroy the welcoming and helpful tone of this board. Thanks. Really sorry, I should not have posted in this context, just really frusterated right now. We have united and have always felt it was kind of a safety net to have this covered should we need to pursue ivig in the future. Now I find out that safety net will be gone. I did not mean to offend anyone just really really scared about what cuts will come next. I know NIMH has funded these studies and is doing a lot of good but at the same time they have also rejected a lot of children for their study that did not fit into the pandas/pans "Box". What happens to some of our children who don't fit into the "box". Just afraid they won't get the treatment they need. I am frusterated with all gov't beurocrats in general not just one political party. I just mentioned obama-care because that is what we will all soon be faced with. I recently had a very bad experience trying to just get a medical vaccine exemption in my state because of govt. rules and regulations and that was not part of obama-care but contributed to my frustrations. The only real point I meant to make is that I guess it's time to start saving $$$$$ because it seems harder and harder to get these people to listen. Unless of course you cut your toe and get to meet the trauma team in the ER.

I don't mean to bring politics into this but if this is all starting to happen already, I don't even want to think about how bad it is going to be once Obama-care starts to take effect. Everybody will have to get approval from even more beaurocrats before we can get anything covered, and will probably be forced to use in-state doctors. It will take an act of congress to get to see a specialist. Then, i can only imagine what they will say about pandas/pans..... This is scary. We are just now beginning to scratch the surface of all of these conditions which have an autoimmune response and I am afraid that if our children don't exactly fit into one specific category they will be ignored. All i know is i am going to have to start building my rainy day fund much bigger.

I am also scared to try Zithromax because when my son takes biaxin his tics increase usually immediately and if I am not mistaken, I think Zithromax and biaxin are in the same family. Right now I know the augmentin is working so it is so frusterating. Keflex has worked for him a couple years ago but does not seem to be helping this time. I have been keeping you and Blake in my prayers. Hope he is holding steady.

If the augmentin is working for you, why the switch to keflex? Have you told the doctor that symptoms appear when you switch to keflex? Yes, I have told the doctor but I think he is not a believer in long term treatment dose abx. He wants to get my son on prophylactic dose ASAP. I am almost out of the augmentin but have six months worth of keflex. I only have about two weeks left of the augmentin. Our appt. is about a month away. When I try to call and discuss it I only speak to the nurse and it is difficult to convey the messages. The doctor is not local so I can't just stop by and get an apt.