thereishope

Did you ever find out why the teacher was out sick? Strep perhaps? Have you ever had a discussion with teacher about PANDAS and the need to know about illness? If not, maybe it is time. If you do that, maybe she'll also tell you why she was absent. As for being "spacey", during an exacerbation, there were times when he did appear so. I pretty much let him be if that happened. It would not last for long periods of time. Maybe a few minutes.I saw it as a need to "just be" or maybe he was processing information. During the rest of life (not during an exacerbation), in school my son is very serious. Even during parties, he is stone faced. I think it''s because takes school very seriously and doesn't see the classroom as a place to goof around....even though he is in kindergarten and it is okay to goof around sometimes. Socially, specifically at school, he does sometimes need prompting to respond to group questions or give socially appropriate answers Like, "how are you". He'll say "I don't know" instead of simple syaing "fine". He gets frustrated when you tell him to say "fine" because he'll say he really doesn't know. He doesn't see the need to lie just to be politically correct. Overally, he has GREATLY improved in his social skills. I don't see them surfacing as much outside of school, but it is specific to school. He has an IEP for speech and his social skills are also cited in there to ensure he is prompted when needed. To make he vists all centers, responds to group questions, even sayds he needs to sing along. School don't realize some kids don't like to sing. That last one annoys me. As a baby and toddler, he did meet all milestones at the right time (except for speech). What OCD tendencies are you seeing right now? Some of them, once you really look at them, can be a round about reason for his backslide in social and emotional regression. Like I realized part of my son's extreme separation anxiety was because I would aid him in completing OCD tasks. Ones I didn't even realize I was helpig him with.

I second the Urgent Care visit for a strep test on your 20 month old. I was told the same thing for my 2 year old. I demanded it anyway. They did it. She had strep. The longer undiagnosed strep goes, the worse it will get. Also...find a new pediatrician.

Welcome to our group. I want to start this by saying if your son's tics and behaviors have resurfaced, take him to the dr for a strep test asap. If the rapid comes back negative, make sure they do a culture. Call today for an appt. Also rule out all family members have strep. You can have strep w/o a fever, sore throat, etc. That's actually pretty common in this forum (inc my family). As for the Singular experience, certain allergy meds do not go over well with PANDAS kids. I can't remember if singular was one of the frequently mentioned ones. I want to say it was, but not completely sure. Certain allegy meds have caused hyperness, increase in PANDAS symptoms, etc. Some go over well with PANDAs kids. So if he is in need of an allergy med, just ask for others' experiences. As for the picking his butt. Well, that could be a tic or it could be OCD. picking is an OCD spectrum disorder. I know a at least two kids whose parents are in this forum have mentioned it as a problem. To rule out snything is causing irritaion, you could even have his anal area swabbed for strep and you could start giving him a probiotic to rule out an overgrowth of yeast. Also, fyi, other viruses and infections could cause problems to resurface. My son's PANDAS symptoms come back full force with srep, but also come through when he has had a cold, allergies, and H1N1. Some parents here have found that Ibruprofen (Motrin, Advil, etc) may help with PANDAS symptoms. They do sell a dye free liquid Motrin he could take. It does not solve the problem completely, but may help ease some symptoms. It's something to try. Finally, where do you live? Ther are some threads (posts) that have been pinned at the top of this forum. A list of some docs who treat PANDAS are listed. See if anyone is near you. If not, post where you live and perhaps someone can make a suggestion.

I was looking for one thing and stumbled on another. Perhaps this has been posted before. It is about how SSRI's may react different in PANDAS children. Here is the link and abstract for those interested. May be something to read if you are thinking of adding a SSRI into your treatment plan.... http://www.primarypsychiatry.com/aspx/Arti...x?articleid=561 Although selective serotonin reuptake inhibitors (SSRI) are an effective and commonly used treatment for pediatric obsessive-compulsive disorder (OCD), their use has come under close scrutiny following reports of adverse reactions. The authors of this case report believe that children with the OCD subtype, pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS), may have increased vulnerability. The following report provides initial data on behavioral activation following SSRI use in 38 children with OCD of the PANDAS subtype. The authors use a particular case to highlight this issue and discuss treatment implications.

Deb, Do you think if you bring up the idea of a steroid burst to your ped, they would consider it? Perhaps try giving Ibruprofen for a few days and note whether her behaviors improve at all while taking the Ibruprofen. If they do, at least that is something to cite to the ped when asking for prednisone as a sort of "proof" that the inflammation needs to be brought down.

I would think if you cannot put together a timeline, just list what your child is like at the time of the draw, then wait a few month and send another update. Even if you do not opt to do subsequent blood draws to compare number, it is still important for Dr Cunningham to know how your child is doing. Even if she does not have new numbers to line up with behaviors, they may at least be able to see how long the average time is for recovery, what happens to behaviors in children with lower number vs higher numbers, etc. I would think the more inof she has, the more likely she can convince people for big donations to continue research. Family medical histories and the child's med history plays a piece in this too I think it is important for new parents joining his forum to realize that what Dr Cunningham is doing is a study. The more info they give, the more the numbers will start to make sense in how they have a place in everything.

I know what you mean. I thought I had the only 3 year who begs for meds because siblings take it.

I don't know if my son had floaters or not. I know one time he freaked out becasue he said there were bugs on him. I don't know ifhe was hallucunating or if they were blurs of vision. Could the swelling of the basal ganglia affect the optic nerve? I really don't know where the basal ganglia is located. Even with living for this for over a year, I never looked at a diagram of the brain. If your child's eyes remain fully dilated during an exacerbation, I wonder if that would cause a strain on the eyes with the amount of light coming through and cause floaters too.

That's a hard one. You could take the phrase "you can't keep her in a bubble" and just go and have fun. The truth is she is probably exposed to people who have just been vaccinated every day. Just bring some hand sanitizer in your bag, remind her no food or drink sharing, etc. Have fun!

As for a streoid and his age, a steroid is given for croup as well. I know kids ( for croup reason) younger than 2 who have received a streoid for a span ranging from 3-5 days. As for when you may see improvement, that really varies child to child. I have read some parents seeing improvemnt within a few days, some not until the tail end of a month of streoids, some not until after they are complete. I'm sorry. I wish I could give you a cut and dry definitive answer. For my son, he received a 5 day burst. I saw him plateau after 3 doses were in his system. Then he slowly imporved. But I really need to add that he received his steroid rather quickly after getting a + strep test. I don't know how much that played a factor. Now note, the liquid steroid tastes bad. Target has the best syringes for meds and you can really control giving it. Don't squirt the full dose in his mouth. He may spit it out. I squirted a little at a time in the cheek area and waited for a gulp before giving more. He was 5 and he fought getting that stuff.

To try to avoid passing strep around all over again, make sure you also change tooth brushes, tooth paste, eitehr have disposbale cups in the. bathroom or each child uses a new one every day. Also, wipe down the bathroom sinks. Kids don't always aim into the sink well. I have a very gross faucet with toothpaste splatter that prove that. I also change their sheets, esp pillow cases. I know you got your kids tested for strep, but did you and your husband go too?

Is your child high risk with an existing health issue such as asthma? My kids already had H1N1, but before they had it I already decided not to give the vaccine. I have not heard about being able to get it twice. If you got H1N1, you can still get the regular flu. Maybe that's what they were referring to?

Oh, man...I'm from Chicago. My husband's for Green Bay. Our old stomping grounds are near the both of you! My hubby used to work in Elgin! And he still has family in Milwaukee!

Michael, here's a link to a thread I foudn that was started about 2 years ago.Thought you might like to read it. http://www.latitudes.org/forums/index.php?...18400entry18400

That sounds exactly like someone's child's experience on here. Thanks for sharing this. Now if I only could remember whose child this is....

This is yet another thing that makes this difficult. Does your child have "only" PANDAS, does your child have Tourettes AND PANDAS? Does your child have OCD AND PANDAS? See, you're child could have 2+things. Would that mean their baseline might include some tics and some OCD? It's such a hard thing to decide when you have done all you can for the PANDAS and start tackilng any other issues that may be lurking around. I was like that with my son and OCD. After his 3rd exacerbation, the OCD stayed. That made me start thinking...well.. does he have OCD too in addition to PANDAS? Did the PANDAS jumpstart something that was going surface in the future anyway and this is him now? That's when I started looking into a psychologist and educating myself more on OCD. It ends up, it was residual for him and he overcame it rather quickly. If your child does respond well to antibiotics, keep up with the PANDAS search. I think that's a good indicator that a child has PANDAS. If you want to try upping the antibiotics, that may help and discuss that with your doctor. Do what you can for your child, as long as it's treatment you as a parent feel comfortable with.

Even if it's the word "probably" PANDAS, stay on the long term antibiotics. Almost rather have that small question mark in the back of your head wondering than take him off the abs, have him get sick, and be real bad off. You don't want another exacerbation to make it a "definitely".

This is just my opinion. If your instinct is telling you to hold off on the steroid for now, hold off. Continue to give the antibiotics. That's very important. Even to just help ward off additional strep infections. You should discuss your concerns with the prednisone with Dr L and see what she has to say. Was the steroid suppose to be a stepping stone to IVIG for you?

You also have to be careful w/ SSRI's and PANDAS. Some PANDAS kids have neg side effects with that too. But I do not remember reading anyone have long term negative side effects from the SSRI's long term, just while on them. Maybe start a thread about which SSRI's are best before starting anything. This PANDAS puzzle never get easier, does it?

Tourettic OCD w/o TS? Can you explain that more. I find it interesting. My son went to a psychologist at one point. First, let me say he has no tics. However, she found his residual OCD very interesting. Some parts of his OCD looked like regular OCD, some parts of it she said looked like the OCD associated with TS. Either way, it's all gone now.

oops. Tell Sheila "thank you" for this forum!

Oh no. I hope she is better soon. Are any behaviors worsening/returning?

My first question, to verify, is does Dr L think he has Tourettes?If she suspects Tourettes at all, Chemar (who runs this website) has said her husband who has TS, had a bad reaction to steroids. She recently reposted her experience in the thread "PANDAS and adult". I don't want to scare you, I just feel better telling you so you can make a fully informed decision. I'll cut and paste her post... If your son is improving consistenly, why does she want to put him on steroids? As an addiditonal diagnostic tool? Are his tics really bad right now? My son went a 5 day steroid burst, but he did not have any tics. It is a lot to weigh. Have you ever tried Ibruprofen to see if helped with his symptoms?

I thought I'd throw a reminder out there that a month or so ago, Dr Cunningham did ask Diana P (from PANDAS Network) to remind parents to send occassional updates to Dr Cunningham about the children who have completed the kits. So she can follow your children and their progress.

For t and a surgery, he breathed in a gas first with a mask.They inserted the iv once he was asleep.The gas worked really fast.