JoyBop

What color is it? Evident of bruising or redness from rubbing, allergy or contact dermatitis or sunburn? There could be so may causes but you want to rule out anything significant. This has been going in for a while now. One would thi I if it were from hitting himself repeatedly that it would be Terribly bruised by now. I hope you are able to find the cause soon!

Just curious....which doctor oversees and prescribes your kids abx? Currently our family doc does but doesn't have any previous experience with PANDAS. She's winging it for us until we find our way to a specialist, which has been a longer than expected journey. There are so many different types of specialists that are adept at treating this disorder. (Not that the number if them is great) Please tell me who manages your abx treatment.

Do you keep a log of activities and sleep? This could be really helpful if you were able to show actual data. Has she a ER had a sleep study done at all? I'm wondering if there are any inpatient type sleep programs she could be referred to that would be far different from the psych wards. The problem with emergency rooms is their job is to stabalize, give you a band aid and refer you for follow up. If they do t see a life threatening issue they will perhaps do some labs ect and tell you to follow up with your dr. On the other hand, they could refer you to a sleep clinic or other specialist there that could help. You could also request to see that doctor you are speaking of and see where it takes you. If you do go, I would go when she has gone days with out sleep and presenting at her worst. May e there are tests they can run that will show something to point you in the right direction. What does your primary care doc say? Seems to me that is the person who should be moving some mountains for you now.

Thanks. Kim curious but a little apprehensive to try. I knew after 2 days that proactive was bad for him. My doctors begged me to give it 5 full weeks. I should have listened to my gut. I'm also nervous to try Zoloft but I'm so tired of being grounded by OCD. I do have 3 other kids that would like to go out and enjoy being out of the house. This is do hard! I keep waiting for Zith to do something miraculous but I think its taken us back several steps.

This really concerns me. I would be wondering about internal swelling or some sort of cyst or some other growth. If the forehead were swlen from harm you would imagine yellow and green if not black and blue around the area. If it were from rubbing it would be red and hot. Something does not add up here. I could understand a joint being swollen but not the forehead. I would recommend getting a second opinion and perhaps some imaging to rule out something g else going in. I think if it were an infection ( bone can get infected too) it would be hot to the touch and painful. My hunch is that something in there is holding fluid or growing and I would get it checked out. What kind of dr did you see? If it were self harm it wouldn't be going on this long either. Sorry to worry you but it doesn't sit right with me.

Remember that the dnase titers are supposed to rise after an infection. Some normal children will see this increased for up to a year after an infection. How are the ASO doing? That is more indicative of a current infection. Also were the same labs used both times? And how far apart? We don't test more than once per month.

The question of staying overnight is one of those that only the mother of the child knows the answer to. You know your child best. If there are complications they won't release you from the hospital so that us a non issue. Did the dr indicate why? Perhaps he wants her to be on Iv abx for 24 hours. 2 of my kids had a t and a. Neither of those kiddos has PANDAS. My oldest was 3 and it was awful bc oc the sheer size of his tonsils. The doc said he'd never seen such large tonsils in his life and they tendrilled all the way down his throat. He went in with an enormous thick neck and came out a pencil thin neck. He awoke with intense rage from anesthesia and recovery was a nightmare due to how much slicing and scraping had to be done. My second child was much younger and his tonsils were much smaller. Recovery was a breeze. My littlest one is having a sleep study at the end of the month to see if she is a candidate. I don't want to put her through surgery without good reason. I'm doubting she has sleep apnea but its worth a try. I'm worried she won't be willing to put in the sensors but I'm keeping my fingers crossed.

Not mentioning pandas sound like a worthwhile approach. Are you going to bring any bloodwork with you? Is this out if your state? I'm just curious about coverage. My insurance won't pay out of state unless the diagnosis code used is life threatening if we end up in ER. I'm sure you don't care but its worth mentioning if it helps you plan for unexpected expenses. My insurance co has been very unreasonable and we pay dearly for it!!

My DS just switched to azithromycin about 2 weeks ago. There are some things that have come back since, like some hyper activity and aggitation that were far better on Keflex and Ceftin. (Switched back and forth a few times with steady results). I mentioned in my other post to you that more OCD has come back as well as compulsive gas/belching sounds. He makes constant armpit sounds and makes himself belch even in the most inappropriate times and places. No sleep problems here thank goodness. Have you tried valarian root or othe supplements?

We have had the same happen here. Much improved with Motrin 2x per day. It hasn't stopped the rage but now they are just little explosions and he moves on much more easily. I made my DS a man cave as he calls it. It's a cool down place that he agrees to go to during a rage. This would not have worked pre-Motrin as all reasoning is gone. The only thing we could do then was remove him from the situation. We could not hug him, speak to him or approach him as that would make it worse. Either walking away or removing the person / thing that set him off allowed him to cool down faster. DH would try to restrain him but that always made it worse. In my house its usually siblings. They get rewarded for walking away. At one point I was fearful I would have to call 911after 45 minutes of this. When all was done and said, Prozac was an additional culprit.

Thanks for your input. T .anna the Aleve is a great suggestion. I could give that a try. It is amazing how fast the Motrin worked for your DS. I think it does the same for us but I always questioned it so thanks for the validation. Mayzoo, I'm curious about the lemon balm. I would rather try a supplement first. I read somewhere it works more like Prozac which scared me due to the awful experience we had with DS becoming agitated and suicudal. Right now our issue is just his resistance to go to any inside public place for fear of gum and someone vomiting. It's hard to say wether this is more Ocd or anxiety but I suppose its both. He is also a "checker" and has "bad thought". And as a side note we switching him from Keflex to Zith and now is compulsive behavior of making gas and burping sounds is back. He does arm pit noises and belches and talked obsessively about bodily functions. How odd is that? I swear this was gone before we switched but bloodwork showed no improvement of ASO titers after 8 weeks of Keflex and Ceftin.

Which titers went up? You expect the dnase to rise post infection. How many weeks did you wait between retesting and did you use the same lab? What were the actual numbers?

I can honestly say I've been there. My 7 yr old DS became suicidal while on Prizac and prior to the discovery of PANDAS. We were lucky enough to have a psychiatrist evaluate him for three hours. She was the one who figured out pandas and sent us for a strep test. My son didn't know any good ways to get the deed done but did stab himself with pencils. I think if he were older and wiser to the world we would have had a different situation on our hands. I didn't want to take him to a hospital but at the same time I was prepared to to save his life. I quickly researched my options and got advice from local docs as to the best possible facility just in case, which was over an hour away. Fortunately we didn't have to do that bc he didn't have a viable lethal plan. Here's what I did do for 10 days while the abx were taking effect. He slept on an airbed in my room so I knew ge was safe and ge felt safer. I went through the house and took away anything harmful. I spoke daily with his psychiatrist and never let him be alone. School was involved as well and there was a plan there. I think you should get your child evaluated ASAP by your doctor to screen him to make sure he's not really going to hurt himself. If your dr has coverage, call Now. If your mothers intuition tell you otherwise, follow your gut and go to a hospital, just know on advance the best place to go. If it helps to hear, as DS got much better after taking him off Prozac and on abx. You should ask about the Clonadine as that could cause suicidal tendencies as well.

I'm far fr a veteran but one thing I've learned from listening to Maloney (author if SS) is that you should always taper a PANDAS child off abx slowly to see his they tolerate it, not stop an abx all at once. We tried that approach with azithromycin and thank goodness bc a crash was imminent. Sorry I can't be if more help other than to say trust your instincts. They are usually right

Thanks for that! I will look up biaxin as well. So far no Lyme here. He is allergic to penicillin and all derivatives but has done well on Keflex which I understand has "some cross reactivity". I will look into the natural anti inflammatory supplement. Dies anyone else have experience with it? Did it work? Marajo, do you mind if I ask why you discontinued the Motrin. Was it be a use he was doing better or was it problematic? Thanks so much !

That's an interesting thought about withdrawal but its really a dramatic return of old behaviors and not new ones. I can't get over how dramatic and fast things turned around. I was told discontinuing shouldn't be a problem but I will research that. Thanks for your input. Was your DS more aggressive on it? Interesting that it helped her get to sleep.

Just curious, how helpful have you found Motrin? My 7 year old DS has been on intunive and Motrin since about mid June. The intunive helped with the rage and toned things down a notch. The. We added the Motrin a week or so later and our sweet, calm child returned. He is still on Keflex but his ASO titres are still through the roof. Lately his OCD has really kicked into high gear and has really interfered with family life. He's a constant checker and worrier and worries about things kids shouldn't even be aware of let alone worry about. So our psychiatrist (very pandas saavy) recommended we try Zoloft to help with the remaining OCD since everything else is so great right now. But we need to take him off Motrin as both those meds together can cause Stomach problems. She wisely advised to take hkim off Motrin for a week first instead of changing two things at a time so we can see the results. He had now been off Motrin for 3 days and I am shocked at the regression. He is back to hyper active behavior, having rages, hitting us and making these awful grimacing faces. Prior to taking him off Motrin he was so calm and sweet and well, normal. Now the PANDAS is spiraling out of control. Can Motrin twice a day make that much of difference? We are now considering changing his antibiotic to Zithromax and keeping him on Motrin and ditching the Zoloft idea. Just when I thought we were getting to the bottom, the bottom falls out.

Good catch! I didn't see it in the post and didn't look that closely at the heading.

How much does she weigh? The maximum adult dose is 800 mg. it can be irritating to the stomach. Have you given it with food or after a meal? That is a large dose for anyone on an empty stomach. Any med can have side effects, and different people respond differently to everything. Have you considered starting at a smaller dose and working your way up to 600mg to see if it is tolerated better? That's what I would try if I saw good end results but with complications and side effects.

She might also have kaiser as secondary to medicare. It can be complicated but most companies will follow medicated rules and policy guidelines. A simple phone call to her primary insurance ought to clear things up very easily if she has the name if the lab and test.

Are you sure its not a "Medicare replacement plan"? This is a plan that will give you identical coverage and adheres to all medicated policies but is managed by a different company. In other words, if Medicate covers it, the replacement covers it. Medicate pats for most lab work but must be "in network. ". A simple phone call to your insurance co ought to answer the question easily.

Medicare covers labs by laboratories they are contracted with and medically proven and backed by the FDA. exceptions can be made by a case by case decision when doctors write in for authorization. Have you tried the standard blood tests for western blot ect? Sorry I can't help with physicians in your area.

I wonder if its the lack of routine or the fact that you aren't there? I find my OCD kids do better with a daily outline if what is going to happen on each day and give them opportunities to make choices. That way they feel they have more control and less stressed. I also make sure they have enough space/ down time to decompress. It can be stressful if there are many people around and no escape. It's hard to give advice since I don't know much about the child or situation but supplements/meds are only one component. Reassurance and child's own individual needs are key. Good luck to the family this week.

I've heard it's best to slowly taper down from the higher doses especially. DD is on 12ml per kg and its working amazingly well. Considering switching DS as his OCD is getting worse on Keflex. Fingers crossed!

No, the suspensions is 100 mg per 5 ml and she is on 11 Mls now. What a difference! She's 4 and weighs 42 lbs. sorry for the confusion, I'm relieved its not your DH. I'm sure its the PANDAS talking. The teenage years are tough even without all of this to deal with. Hang in there, he will come around when he is able. Hugs!