thereishope

By the time you read this, you'll probably be back from the dr. Let's just hope and pray it was a sore throat w/o any infection. That can happen. When did he start the new antibiotic? I can't remember when you posted it.

Some have found that Ibruprofen takes enough swelling down off the basal ganglia that they notice some improvements in behaviors and/or tics.But it is not a diagnostic test. As for allergies, those affect my son's PANDAS. He does not have bad allergies either. Like this year his only allergy symptom was red eyes, but I noticed when I religiously gave him Benadryl for the eyes, once the reddness was under control, his behaviors stabilized too. I give him ibuprofen for headaches and body aches occasionally and I never see a change in his anxiety or tic level. Why would you give ibuprofen anyway? I also have tried the Benadryl to see if that helped but the only thing it did was make him sleepy and help his runny nose at the time. He has very minor seasonal allergies. Bonnie

You have no idea how paranoid I was that neighbors would call child services or police. I can run around our house and close all windows in 5 seconds flat now. My son was sick during nice weather when all windows were open. Anyway, I think we can al find humor in some of the things we experience. You need to do that sometimes to keep your sanity. God knows what strangers would think of us.

I haven't had my CamKinase score checked. I don't think I ever will. But sleep walking, talking in sleep, and night terrors run in my family. As for an age, I don't remember. I don't remember much from my very early childhood so I would take a guess I was at least a little older. In hindsight, by my mid teens a lot got better.

I understand about the cost being a lot to some (me included!). That's why I suggested the Ibruprofen since you probably have some in the cabinet anyway.It's somewhere to start and you don't have to explain it to your huband! Also, like EAMom said rule out strep in others. As for the behaviors prior to strep, well, that's what you assume. My son's behaviors existed for 2+ weeks before I found out he had strep. I'm not trying to convince you that you're child has PANDAS, but it's just something you may want to explore a bit mroe. There are other triggers once the PANDAS "box" has been opened. Stress, allergies, virues, etc. Also, the symptoms and their severity vary greatly. No 2 kids are completely alike. Maybe there's a reason your gut told you to post on the PANDAS board?

I hope all goes well. Keep us posted. Vickie

Excellent point to add! When my child is in the midst of an exacerbation, there is little I can do to help with the anxiety and other problems. I'd have to let it ride through. And, boy,there were days when it would last hours.

The psychologist we met with for the residual OCD said the same thing. It was not classic, textbook OCD. He had some classic OCD tendencies, habits, and rituals, but it was still different.

Let me think on this a little. For awhile my son had fears like that. Even things like SpongeBob. He'd be fine during the show then the thoughts would get him after he was in bed trying ot fall asleep. The worst was an epsiode of "Fairly Odd Parents". Oh, do I remember that one. A dead hamster that was brought back to life then tried to kill the parents. Boy, I was not paying attention to the tv when should have been. Anyway, he was fine during the show, he went to bed and the thoughts started. The characters in the show were "alive" in his head. Trying to get him,not leaving him alone. It took over an hour that night to get him to fall asleep. It was different than a typical nightmare.I had to yell at the thoughts to leave him alone since they wouldn't listen to him. Another time, I broke my toe and for the next few weeks I had to keep reasurring him he didn't break a bone or he wouldn't break a bone. Sorry for my rant. I think you can go online and get an OCD test to complete on your own if that's something you'd be interested doing ahead of time. Some of things I had to answer on my son's test had to do with the things you mentioned. As for techniques when he gets upset over something is the usual breathing, counting to ten over and over, etc. But when it's things like you said, I associated those with his OCD that was present and that's when we did more things that were like CBT (like when I tried to get him to yell at the bad thoughts or I ended up yelling at them for him)or ERP.

Hello. If you don't mind me asking, does he have TS or TS and OCD? First, I'm going to address it from a PANDAS angle, many here say they needed more time on antibiotics other than a 10 day script. They also often need something stronger than amoxicillan. Something to think about if you want to wander down the possible PANDAS path again. Also, some with PANDAS notice Ibruprofen helps with tics, anxiety, etc. So, if you're curious, that's something you can try and just see if you notice any improvement. It's not a definitve test, but something to try. As for strep, well, some do not have strep being the original trigger. Also, the possibility of undiagnosed strep is there. My son, for example, never has symptoms of strep. His behavior is what brings me in for a test. Okay, so that's the PANDAS part.A lot of kids have that parent they go to for comfort, the parent they go to for fun, etc. For my son, well for all my kids, I'm it. I have the patience and I am not going to simply tell them to "grow up' or "get over it" What techniques has the therapist given you? Are you able to reason through the anxiety? Is there a trend of the same thing causing the anxiety like fear of not making you happy, not doing good enough, does he think something bad will happen to him or the family? I ask these questions so maybe we can undertsand where the anxiety is coming from or give a specific techniques to help.

I also believe that OCD can become "habit". I say residual. That's what happened with my son. If the brain thinks that way long enough, I think the brain may retrain itself to continue to think like that even post PANDAS exacerbation (even if it's the wrong thoughts). If CBT retrains the brain in a good way, I can see how a bad form of retraining can occur as well.

My dr did say the bottles are conservative in dosing. For my son, the dr told me a higher dosage than on the bottle.

Glad to hear about the appt. Hopefully, the insurance problems will resolve soon (in your favor, of course).

That's great to hear! I've already have moments when I look at my son and I am amazed by how much he overcame in such a short life (he's 6). Our kids are such strong people. So many can learn from them.

First off, here's an old thread where many say whether their kids had OCD, tics, or both. http://www.latitudes.org/forums/index.php?...ic=5220&hl= As for how PANDAS presents itself in my son, here some of his PANDAS symptoms for his strep triggered exacerbations. He also has slight setbacks with viruses and allergies, but those (in the scheme of things) aren't bad. Exacerbation #1 -Obsessed w/ fear of dirt and germs. Freak out if he thought you touched your face or his little sister -Excessive hand washing to the point of bleeding -Teacher noticed an obsession w/ hand washing -Spitting at people -Fussing w/ his plate over and over until just right. -Pushing his chair in over and over -Obsessed w/ hair being flat. slapping himself in the head to get it right -Walking w/ closed fists. Refused touch. Wiped hands on clothes over and over -Making loud sounds out of nowhere -Hyper -Sensory problems -Saw "bugs" on him twice (hallucination) -Refused to go to school on some days -Separation anxiety -Extreme disgust w/ his sister Exacerbation #2 -Major rages w/ uncontrollable hitting and kicking -Episodes/meltdowns last as long as 2-3 hrs. They are present more than not present. -Major problems w/ clothes. Would lay in his floor naked, not be able to make decisions. I had to dress him in am and pm. He'd fight me over this. We'd have to hold him down. -Saying he wants to go to heaven. He wants me to go to heaven -Not eating….anything. -OCD tendencies resurfacing like counting to a certain # before doing something -Refusal to leave the house (possibly agoraphobic). Didn't leave for days until forced. -I began spoon feeding him for nourishment -Separation anxiety -Sensory problems Exacerbation #3 -Needing to spin or shake when passing his sister's room -Needing to repeat tasks until just right -Needing to wear his jacket at all times when out of the house -Needing to wear his hood up at all times when out of the house (even when inside) -Refusal to listen. 3 hours to get ready in the morning. Repeating "orders" several times and him never complying. -Indecisiveness -Refused to let anyone touch his head. Slap himself in the head to flatten hair. -Many OCD rituals. -The NEED to be in charge. -ODD -Worst separation anxiety to date -Bed wetting -Sensory problems

Pre-PANDAS my son was very much into pretend play. His imagination was amazing. During PANDAS, he lost it. His action figures collected dust and he no longer pretended to act things out and such. I am overjoyed that his desire to play like that is back. It took a long time. He is a very creative little boy. As for how his PANDAS presents itself, I will answer that once I get my kids from the school bus. That's where I'm suppose to be right now!

My son has no tics. None with any of his exacerbations. Do you know why he doesn't want to go outside? Does he get anxiety when you try to get him out? My son was on the verge on becoming agorophobic. He didn't step out of the house once for over a week. It took a lot of creativity and baby steps to get him to overcome it. Your DH needs to realize that your son didn't catch PANDAS. PANDAS is not a virus like a cold. PANDAS is a disorder like his eczema. But I know it's one thing for me to say that another for you to get him to think that.

On my liquid children's Motrin dosing table, it says 72-95 lbs takes 3tsp. That equals 300mg. When trying to figure out when to give it, remember it can be taken every 6 hours. Give it at least 1/2 hour to kick in and with my son it began wearing off around the 5 hour mark.

Well, I tried to look up PITANDS in this forum and this conversation is what pops up. For some reason, if the keyword you type has beenused recently only that recent thread pops up, not all of them from the past. Maybe there's a different spot to search. Or maybe it's easier just to strart a new thread:) I'm thinking it's easier to start a new thread.

There's a channe that the taste of the med made him vomit. I've had my kids vomit instantly because the med made them. My son had a liquid form of pred. and he still fought us because it tasted so bad. If you want to try the steroid again and think he'd swallow a pill, do that. Otherwise try the liquid and give a little squirt at a time. In another forum, someone said their son gagged on a pill and that just set off his OCD.He's usually fine with taking them, but one time it didn't go down easy and that just set him off. It did calm down after a couple of days. Have you given Ibruprofen in the past? Did it help him? I wonder if docs will ever take that as enough "proof" that there is inflamation.

I like the way you worded this...

As you go on to describe his behaviors they sound more "PANDAS-like". In some PANDAS kids, Ibruprofen takes down enough swelling off the basal ganglia, that the parents see some improvemnt in behaviors and tics. If his titer levels are high, that may help you with doctors. However, it is not a test for PANDAS. Some kids on here have had low titers and still have PANDAS. It is not a diagnostic test for PANDAS.

It's funny you ask about PITANDS. Just a few days ago I was trying to educate myself on it and I got confused. I think it said that PITANDS is when it is not caused by strep? Then it went on to say that subsequent occurraces may not necessarily follow an infection. Hmm....I think we need to start a new topic! Well, I have not searched for it yet on here to read any old ones. perhaps I should do that first.

My son was one of those kids. He ate chicken nuggets that same day! His recovery was amazingly easy. The ENT said to go ahead and let your children what they want. Don't baby the tonsils. The longer they don't eat "regular food", the thicker the scabs will be and hurt more. He said th worst patients for recovery are teen girls. They worry so much that they will hurt, they don't eat. Then thick scabs form, etc... Our ENT said he has seen kids who are eating cheeseburgers the day after the surgery, maybe he'll be one of those lucky ones!

Someone once wrote that you should wait 14 days after ending meds to have a follow up throat swab. I will search my different groups if anyone else is in the UK you can connect with. Is there anywhere else you can go (travel to)? 1.What antibiotic was he on? 2.You say you thought you saw some improvement. Is it that it was inconsistent and that's why you question it or is it that there was good improvement for awhile then it haulted? 3.Have you given him Ibruprofen to see if his tics improve with that? 4.Could you at least have his titer levels checked? 5.Keep in mind , some kids could have 2 diagnosises, Some kids may have PANDAS and TS, PANDAS and OCD. It's a lot to sort through. I'm sorry. Did you say his first onset was sudden and severe or a gradual worsening?