thereishope

yeah! How long is he scheduled to be on steroids?

I think the honest answer is we really don't know. Many of the original kids dx with PANDAS in 1998 are probably just becoming adults. There are some parents who have revisted this forum after many years whose PANDAS kids are now young adults and they are good outcomes. That gives us hope.One just have to give everything they can now while their children are pre-puberty to try to set good groundwork for where their body and immune system will be when they enter puberty. I also went to PANDAS Network and pulled these quotes.... http://www.pandasnetwork.org/prognosis.html Then there is this quote at the end of the page.. So, like I said do what you can now and never feel like you just have to wait it out. Nightly prayers are always helpful too.

Maybe I should add my son has not undergone allergy testing. It was mentioned as a possibility at his last ped appt. Right now, I chart his allergies on my calendar so I know if his behvaiors start to resurface, look at the calendar and see if there is a correlation. Last spring, his behvaiors worsened a week before there was any physical sign of allergies. There was so much worry why he was back to having meltdowns , sky rocketing anxiety, OCD, etc. then one day I relaized how bloodshot his eyes were. They were the worst I ever saw. I defintiely noticed (since I was making an effort to) that when the redness in the yes went down, his behaviors calmed down. Benadryl actually only makes my son drowsy the first day, then it doesn't seem to affect him. The ped did say he is seeing an increase in allergies this season compared to other years and dust mites I guess are really bad right now.

Would he willingly spray saline nose spray into his nose? That may help with the feeling of dryness.

I've heard a few people mention that their kids did not respond well to Singulair. As for Claritin, I've heard mixed reviews. My experience with it, it worked at first but by day 10 he was horribly hyper and OCD started to pop up agian on day 11. I switched to dye free Benadryl and it works for him. Last spring, my son's allergies triggered a big setback while he was in the beginning stages in recovery from a strep triggered exacerbation. Once I got his allergies under control, he was doing much better in his PANDAS symptoms as well.

I hated when my son did that. Either reasurrance questions over and over or I had to answer a very specific way. As for reassurance, If I knew he eard me and he asked again, I would tell him to look me in the eyes and I would repeat my answer once. I would tell him I was not going to answer agian. If it was something I knew he knew the answer to, like holding a red crayon and saying "Mommy is this red?" I would simply say you know what color that is. He'd ask again and again and as long I knew he knew the answer, I wouldn't answer him. As for scripting, I would not do it. "Mommy,say ____'. My respnose "no". Or I would reword it a different way and tell him that I know he understands what that answer means. I didn't do this when these things first surfaced. It just got to the point that I could hande it anymore. He did get upset, he gave me ultimatums, but I just had to stick with the plan. Eventually it worked.

I'm still drawn to the whole hood/hat thing. That sounds so much like my son. I understand what your saying, but I would still wonder if there is something else 'hidden' in that behavior. For my son, I don't think it was sensory but I wonder if it "protected" him. When the nurse once tried to take it off he started to get upset. I just said it was like his "force field" to try to give some explanation to her. He never voiced why he did things. I don't know if he knew why he did things. The eating think in kids can easily been seen as being picky. I have some of the pickest kids in the world. My older son is turning 9 next month and he won't eat the lunch in the cafeteria. I have to make it. One question you can ask him (if he won't get upset) is if it hurts him when he eats. Otherwise, just start making little mental notes here and there. He ate w/o prompting when... scan the picture. Who made the food, was is hot or cold, what was the texture of the food, where was he, who was around. It's sounds like a lot but if you start to see a pattern, it may hold the key.

If only you could read some of your own posts from our perspective, you would see how you desribe things and how it sounds like PANDAS. Sometimes when you live it, things become a little blurred. Afterall, it becomes life.

Welcome. Most of the kids on here stay on long term antibiotics to try to prevent future strep infections. This would be prohylactic antibiotics. Prophylatic abs are also used with patients who have Rheumatic Fever. As for how long does it take to see improvement form antibiotics...there's no real cut and dry answer. Some see immediate, some it takes a month to see improvement. It can also get difficult because one has to find the right antibiotic for their child. It ends up being some trial and error. One also has to remember that you may start to see improvement within that month. It doesn't mean your child will back to their baseline by then. Recovery can take awhile. About seeing one of doctors that is often listed on here. Well, if you have a "difficult" case, yes, it's in your child's best interest to see one of them. Otherwise, if you have a local doctor that truly is willing to listen to you, work with you with info you provide, and even be willing to take info from the experts via something like a phone consult, I would say you can try staying local. But when you reach road blocks and improvement ceases or doesn't begin, you will hopefully be able to travel. I know some will say to automatically go Dr K, DR L and Dr T , but I know that isn't possible for everyone.

I don't see veins on my tonsils,maybe on my 2 kids that still have then? I can look later. My son turned 6 in Sept. The hoodie thing. What does he do if you tell him to wear a hat instead or nothing on his head? Does he ever take it off when he's out of the house? I just have to ask becasue one of my son's things was always having to wear his hood while out of the house. Even in stores. As for the eating, besides the Chinese buffet, have you "analyzed' what he does eat? Is it mainly food he prepared. Mainly cold food? Again, this is just a personal thing with me. My son had eating/food problems with exacerbation #2. I think any PANDAS child (or suspcted of PANDAS) needs to be watched when food intake seems lower than expected. With anorexia and other food problems associated with PANDAS, it can get scary. It took me a bit to figure out why he wasn't eating. I think I still don't know the full answer. I'm glad to hear his gland aren't overly swollen. I read an article about some disease and it scared me. Sometimes it pays to read the newspaper, sometimes it makes you paranoid.

I started to imagine mini golf balls. Still, any swelling isn't good. Have you ever seen white on his tonsil, like food remnants? It sounds very gross, but I have very big tonsils w/ deep caverns yet when I was a child it was the big "keep tonsils in, don't take them out" phase so they were kept in. Well, I still get food stuck behind my tonsils. It causes them to appear very swollen and I can see a visible mini bump as a result of it. But it's hidden, you cannot see it just when you look in the throat. That can easily turn into a hiding place for strep. A swab would never reach it unless they dug for it. I wish I had my tonsils out as a child. They are such a nuisance now. As for the weight issue, it could be related, but I don't think it's an across the bar symptoms. Hm. Mabve during until it's in recovery? Let me see, my son was always very tall and okay for weight. He got sick in Sept 08. he lost weight but because of eating issues related to PANDAS. When he entered recovery he gained the lost weight back plus 2 or so pounds. Then he reached a plateau in weight. In Sept 08 (before first exacerbation) he weighed 40 pounds. Sept 09 he weighed 42-43 pounds. It's been over a year since his first PANDAS excaerbation. Now, he is spurting in weight. He just gained 5 pounds 3 months! We appear to have him PANDAS under control. I also don't see to much of an increase in his food consumption. Interesting once I sit and think about it. My son now weighs 48 pounds. He just had it checked on Wed. Height always remained on the same curve. Around the 90% percentile. He was 8 lbs 10 oz when born.

Since there are many new people I thought I'd bump up this thread about the Cunningham test. That way if they are interested they can read more about it.

Allergies are a known trigger for my son. They were pretty bad in spring and we had a huge setback in recovery due to them. Once we got them under control, he really improved. Allergies are probably aiding in increasing OCD in your daughter.

Agave is always praised by people on the no-GMO sites and Natural News. I've never tried it nor did I ever research it. I'm surprised it ends up being HFCS-like. If she likes pasta, I hae seen rice pasta even at Walmart. That would be a treat now and then since you're limiting rice as well. Actually, they have corn pasta too. So is soy out? Good luck with this and thanks for the update!

He makes raspberries? My son did that during his first exacerbation. That was so much "fun". At Walmart having him spit at strangers if they looked at him or said 'hi'. It wasn't a tic for him, but just one of the things he did when he didn't know how to react, got mad, etc. If he is having symptoms worsen, rule out strep throat(rapid and culture). It is also recommended that you retest for strep 2 weeks after finishing an antibiotic. You can just go to the ped for that. or if you have those Little Clinics or one minute clinics at a CVS. .

My son had horrible sep anxiety when it came to preschool. Finally, I told him that his dad was going to take him. He fought the idea and was very upset. I decided to ride through the anxiety, which was very hard and continued to remind me that his dad was taking him. I reminded him every so often throughout the day.So, when the day came, I made sure he was ready extra early (we were at the point of waking up 3 hours prior to his leaving time because it took him so long) and his dad took him. He was still upset, but...he did great. No sep anxiety at all with his dad. I told him if he continued to do well, eventually I would take him again. well, the last day of school arrived.he reminded me that I made a deal with him. I was so nervous, but I had to have his trust so I couldn't back out. I took him to school. To my relief, it went fine. So, long story short, is there anyone else who may be able to take him to school for you? Hopefully the anxiety of you not being wih him will subside by the time he gets to school.

I'm sorry to everyone I keep posting links to old threads, but this one may be of interest to you... http://www.latitudes.org/forums/index.php?...ic=5520&hl=

How swollen are his glands and for how long have they been swollen? What abs have you tried so far and for how long?

This is what appears on the bottom of the electronic copy in regards to copyright "Copyright of Scientific American Mind is the property of Scientific American Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use." So, I can't publicly post it, but can I email to people I personally know? I have the article, but don't want to break the law.

I noticed that at times when my son was on the verge of a meltdown if I turned on SpongeBob it put him in a type of trance. I remember frantically flipping through the channel looking for that show. And I didn't even like SpongeBob. My kids didn't even start watching it until I found out it calmed him down.

I'm assuming it's the study that was done back in Sept. For those who don't plan on reading the article and who may not have been part of this forum at the time, here's a link to the thread about the study involving that famous mouse.... http://www.latitudes.org/forums/index.php?...;hl=mouse+model

Did Dr Schott do a study on PANDAS? I remember Rutter referring to her. If you want to message me your ped's info, I will be happy to mail them the info I will be sending to other local docs. Perhaps yours is even already on my list if you live in Cinci. You don't have to let me know if you don't want to, but the offer is there if you want.

I called my library. They receive an electronic copy of this periodical that I can view online at home. So I can view it for free! If you don't want to buy it, I suggest calling your library to see if they have a hard copy or electronic one online. I'll read it tonight whne the kids are asleep.

The Jan/Feb 2010 issue has an article entitled From Throat to Mind by Erica Westily. The opening sentence of the article is "The case for strep throat-induced mental illness grows stronger." There isn't a free online copy of the article. I am going to buy it today or tomrrow.

No, my son hasn't taken SSRI's. They were suggested to us at the tail end of exacerbation # 3, but therapy was enought to get rid of his residual OCD. SSRI and PANDAS have to be done with caution. PANDAS kids may react differently to them. If you read the fact sheet Buster did, under treatment it is explained along with a citation to a study done. http://www.latitudes.org/forums/index.php?showtopic=6265