thereishope

I think the more learned behaviors of siblings would be to get their way or get you to give them something. They interpret what the sibling does as a form of parental manipulation. Often the parent will give the PANDAS child more affection and attention during an exacerbation or they will give the PANDAS child more of what they want because they hope to give that child happiness in the time of chaos. Not that the don't love the non-PANDAS child, but is just part of the instinct. I admit, I did it. I saw some learned behvaior in my 2 other kids (ages 3 and 8) while my 5 year old would be in crisis mode. But that learned behavior the siblings showed did fade away as my PANDAS son recovered. What you described doesn't sound like a learned behavior to me, from a 5 year old. Now if the 2 year old did that, it would be more acceptable.

Yes, we had that too. They get stuck on the idea they MUST go a certain way and cannot change it at all. When you tried to physically move her that was the anxiety felt when they cannot complete the OCD. A five year old should not react like that to that extreme. Maybe get upset and yell at the 2 year old and get annoyed, but not a meltdown when you tried to intervene. But my 5 year old did when OCD was controlling it. What has also occurred here is while he was walking to a destination, if you talked to him while going, he'd flip out an have to walk back to the original spot to do it all over again. He also set his own rules for certain rooms in the house he had to pass. maybe he had to crawl down the hall, spin as he passed a room. And if he couldn't complete that, back to beginning he went. Overall, if she has anxiety now and again, it shouldn't be something too nervous about but when it is accompanied by a meltdown or taking more than 5 minutes to overcome w/o ever giving in to the need, then the red flag needs to be raised.

Is this 10 day rule for all antibiotics or do some have a longer shelf life even when they are already mixed?

CBT and ERP often don't work while in the midst of an exacerbation, but sometimes while the child is into recovery, it is beneficial. ERP helpd my son shed his remaining OCD with his last exacerbation. CBT never worked for my son since he was 5 and didn't see it as a problem and it didn't bother him. ERP, on the other hand, worked because I was able to guide him through it more.

The first time my son's PANDAS surfaced, his rapid came back negative, but his culture was positive. That's why it is so important to demand cultures. In my son's subsequent exacerbations, the rapid did come back postive. So continue to get a rapid as well if you should ever suspect strep again.

If it is PANDAS, it may be tolerable now as your husband put it, but it doesn't mean it will always be. The tics can worsen, new issues can surface. Tackle the possible problem now before it's out of control chaos. As for when the tics seem to surface, strep is often the original trigger but then once that Pandora's box is opened, viruses, allergies, exposure to strep, stress can also become triggers. Some notice a calming of PANDAS symptoms while the child is sick. Like calm before the storm. Some right befroe teh child gets sick and some while the child is sick. So it is important to keep track of the upswings in symptoms to learn your own child's pattern. That original strep trigger might have been missed by the parent if it occurred early in life or was sudden, but not out of control. When the tics are present you can try to give some Ibuprofen and see if that helps. Some PANDAS kids get relief from the use of Ibuprofen (Advil, Motrin). It does not work for all kids, but if it does, any would see that as a sign that PANDAS is highly possible.

I'm happy you're getting answers. Was yours the one who didn't do the rapid or did the rapid come back negative?

Welcome to our group! Could you convince him to take a pill? Otherwise, I think I've read that a couple of kids who have high sensitivties to the dyes, artificial flavor, ets can get their meds in a different form (I think powdered) and the parent mixes it at home. I not really eductaed on this, but maybe it's something to ask the pharmacy. But I think one said it is more expensive that way and not all insurances cover it. Still, it doesn't hurt to ask, right?

I believe it's too see if there's a DNA connection. I found out about the genetic one through the Beth Maloney fan page on facebook. I contacted those in charge of the study too see if we would qualify since I see genetic connection in our case. It is through the coordinator's response that Geller's Augmentin/Cefdinir study was mentioned. As for the Murphy one. I found that one out through a friend and emailed Dr Murphy for more information. I emailed the coordinator in charge of Geller's antibiotic study (it is different than the one for the genetic study which is listed in this thread) and requested more info so I can tell the forum about that one too. I haven't heard back from them yet. It may take a few days. I'm not saying to participate or not participate. I'm just letting everyone now that they are out there.

What I listed was an email address for the coordinator. I didn't have more info to give since I didn't ask more questions after finding out we didn't qualify. I think it's a blood and/or saliva sample. I don't believe an in-office visit is need. But, again, I would verify that. If someone gets more info please post it so others interested can raed it. i cant open this

I just got back from the pharmacy filling a prescription for my son for Augmentin for a sinus infection. It was a 14 day script, but Target only had 5 days worth. They said they just got a shipment of it in today but they are getting tons of prescriptions for it. Anyway, the pharmacist told me that Augmentin goes bad after 10 days anyway so we could come in for the rest of the script in a few days. So, if you are giving your kids liquid Augmentin long term, talk to the pharmacy about getting it refilled every 10 days so it doesn't start to lose it's effectiveness.

I started a new thread with the study info in case others would be interested.

Dr Geller (from Saving Sammy) is conducting a genetics study on PANDAS. Children 8 years and older can participate. If your child is too young (like mine), they did say my biological parents and myself could offer samples. Here is the contact for more info. eamancuso@partners.org I was interested in taking part in this study, but unfortunately, we are not able. My son is only 6 and my parents are both deceased.

I'll just tell you history... -1 of my sons has PANDAS. I also have another son and a daughter. So, far they seem in the clear. -As I look back at my own childhood, I wonder about myself. Tonsillitis 5+ times a year, OCD tendencies as a child. Other PANDAS type issues. Just makes me wonder. -My maternal grandmother almost died from strep or scarlet fever pre-antibiotics era -autoimmune disorder run in my maternal family -Other OCD spectrum disorders with my maternal cousins. Their mother is my mom's sister If you'd like Dr Geller is doing a PANDAS genetic study. If interested in participating, I'll pass on info. My son is too young to participate.

Well, excessive hand washing to the point of bleeding was my son's first PANADS OCD symptom so we have that in common. For my son it was on his 5th bday and just started kindergarten. You've also listed sensory problems in regards to how he reacted to the noise and chaos in the school. If he was avoiding touch at all or would wipe off touch, that could have been OCD, sensory, or both. Sensory probelms are related to PANDAS. You said he couldn't pay attention. I know ADD and OCD can go hand in hand. But...a lot of PANDAS kids show signs of ADD, ADHD, being fidgety, etc too. "Regular" OCD is gradual. With PANDAS, it's a quick snowball effect. Do you have the info for the Cuningham test? Like others have said, you should have that done. Especially since you are unsure about PANDAS. I would getting him on antibiotic now and not wait until you make a solid decsiion if it's PANDAS or not.

Upon reading other posts, do you realize what you've listed as his changes are common in PANDAS? You don't forget to read with "regular" clinical OCD. If you haven't already, print but the FAQ thread and the Fact thread and read over it tonight. It's very helpful.

Couple things in case you haven't run across this yet on the forum... You think he was never really sick. I high number of PANDAS do not get fevers, sore throat, redness when they have. My son doesn't. When I first googled sudden onset OCD and PANDAS popped up, I dismissed it. My son didn't have strep, I thought. I didn't realize he could be asymptomatic. Well, now I know al 3 of my kids are. I take him for a strep test when a meltdown occurs or OCD goes through the roof. Also, PANDAS symptoms can resurface for some as a result of viruses, allergies, vaccinations. For my son, whne that happens, he has an excaerbation of varying ranges and eventually he gets back to himself. How old was your son when you first noticed OCD tendencies? Finally, as a fyi, I do know a young adult with PANDAS who also has a co-diagnosis of OCD. She has been PANDAS symptoms free for a while but takes Zoloft for the OCD. So, co-diagnosises is not unheard of. And most important...she is happy.

Here's an old thread about exacerbations following t and surgery you may be interested in reading http://www.latitudes.org/forums/index.php?...ic=5488&hl=

Not the answer you're looking for, but what has helped us besides antibiotics... Patience, determination, hope, and love. No one can write a prescription for that.

I'm glad you had a ggod trip and experience. He sounds so nice! I do have a question. What is antibiotic dependent?

I'm going to try to tackle the is it OCD because SSRI's worked for him. What I'm saying is not from personal experience, but from what I've gathered from some other parents. Some have said that the meds worked initially but then caused problems like inhibition. They pulled their child off the psych meds and the child improved. So they learned that the psych meds "changed" from being beneficial to being dangerous for them. One thing might be that the child by sheer coincidence was naturally improving at the same time the SSRI was introduced. The parent and the psychiatrist would then attribute the imprpvement to the SSRI when the recovery was the body just getting better on its own. Also, some kids may have more than one diagnosis. There is a chance a child can have OCD AND PANDAS. This is when the OCD is always there but dramatically worsens as a result of strep. Perhaps for that child a SRRI is actually needed. I don't know. But then you need to work on which one and dosing. What you have to decide is how to determine what is going on with him. One possibility is to lower the SSRI's and see what happens. Another is to wean him off completely. But the problem with that one is if you truly believe he is carrying co-morbid diagnosises, going off the SSRI completely can be bad and it would take weeks to get it in his system again. One question I would have for you is why did you finally decide to go on the SSRI's? At that time did you all of a sudden see a huge increase in his OCD or was it that you weren't seeing improvement and you decided it was time to try meds. You need to search and remember as much as possible about what was going on at the time. With my son, after his 3rd excerbation, the OCD did not go away. I was sitting there thinking he had OCD and finally the OCD won. Even though the 2 previous times it completely went away. I went to the psychiatrist who said maybe Zoloft. I went to the psychologist to try CBT (which didn't work because he was 5 and did not see the OCD as an issue). I saw it as my son now had OCD. So, when I saw it that I now had to live with a child with PANDAS and OCD, I shifted gears and thought I was entering the tackling of OCD in a child that would always have it. I started my own form of ERP at home and he shed all the remaining OCD. The psychologist was floored on how fast he did it too. The shedding process did include extinction anxiety like with regular OCD but he seemd to overcome each OCD faster than one would expect. But then, he wasn't living with it as long as your son. For my son, it was determined it was just residual OCD We can't tell you what to do with the meds, but we can tell you what others have experienced and help guide you in trial and error. Yes, it's bad that treating our kids includes so much trial and error, but it does. There's diferent antbitics that work for differnt kids. Some have the most success on Zithromax. Some of Augmentin. Some on Keflex. Some get better on amoxicillan (although this is rare). Each trial on an antibiotic needs to get a month or so devoted to it. Some have to try steroids,. Some go onto IVIG or PEX. But the end result is you may give your child a life that for awhile you thought wasn't a posssibility anymore and you are empowered with information to tackle the next time, if God forbid it should occur. Do try the Ibuprofen and tell us if that eases any symptoms at all. Also, if you are not doing so, give him Omega 3's which help with OCD. Make sure strep is out of your house. Make sure all family members have had strep tests and they are all cultured if they come back negative. Change tooth brushes of infected people Also, remember some instinct brought you to this forum and the idea of PANDAS. Don't ignore your gut. Many families have just followed their gut despite what doctors have told us. Parental instinct is irreplaceable.

Others have seen issues a rise after t and a surgey. Not everyone, but some. However, I don't recall anyone saying it happened that fast. One theory someone suggested was that the anesthesia opens up the BBB. This makes sense to me since some others have issues after seeing the dentists and getting laughing gas. But this is just a theory. Another is that the child was exposed during surgery. What antibiotics your child on? Also, you can try giving ibuprofen and see if that eases the symptoms for now. The Ibuporfen doesn't solve the root of the problem but works more like a temp bandaid. Still, for some, it offers relief and that is great.

This is taken from Buster's suggested NIMH update page (http://www.latitudes.org/forums/index.php?showtopic=6142&hl=) .... I have heard from other parents who had bad experiences with PANDAS and SSRI's. "Treatment: Streptococcal infections are treated with antibiotics. Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup. Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics[Perlmutter1999]. In addition, several studies have shown efficacy of longer term prophylactic antibiotics alone [snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use a prednisone steroid burst for a short period of time to assist in diagnosis of an auto-immune disorder. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000]"

I have a different plan. I have to pay EVERYTHING until I reach my high deductible. Though preventative care is covered 100%. But then UHC keeps harassing me to fill out a questionnaire now that my son is no longer seeing the psychologist. I refuse to fill it out. There's a sentence on there that allows UHC to access your child's records from the therapist and speak directly to the therapist about your child!No way would I allow that. UHC also didn't have a child psychologist even listen in my area. Or maybe not one specializing in the behaviors I was looking for. Can't remember. I went to one they listed and had a bad experience. i finally went to one at Cinci Childrens' .None at that hospital were covered by UHC. We have bad insurance because my husband's job is a small company without too many employees.

I'm happy for you! Good to know UHC does something. I have so many issues with them. They don't cover any speech services/therapy unless you have a speech disorder as a result of an accident so my son's only speech therapy is through the school district. I think that's horrible that they deem it is okay for a child to go through life without being understood or have difficulty communicating. They also have awful mental health benefits for seeing psychologists and psychiatrists.