thereishope

CBT where you "talk back to the OCD" didn't work for us either. He was 5. He said nothing was wrong. He didn't see it as out the norm. He couldn't rate his anxiety or anything like that. All I could think is if he couldn't acknowledge the problem, how could he overcome it. But we eventually did. You have a lot on your plate right now. Make sure everyone is healthy first. It's hard to strat the road to recovery when you have something like strep or other illness blocking your way.

As the OCD begins to let up or settle a bit, and you must believe it will, leave a note on his bed one day. Tell him he doesn't have to talk to you about it but he can always leave you a note back. Well, I guess that would only work if he doesn't have an aversion to handwritting. Does he? Anway, as a child I remember sometimes wanting to talk about things with my mom but I couldn't. Whether I felt awkward, emabarrased, etc. The letter/note writing will give him a buffer. Like a feeling of protection and control. Perhaps some of the OCD he is riddening himself of, you weren't aware of. He doesn't want you to know more existed than you were aware of. When I was a child, I had this thing with light switches. I would leave the room and needed to push down on it a certain number of times. I would leave the room, then have go back in, turn on the light, turn it back off, push down. Anwyay, you can see the circle. I actually overcame it eventually on my own w/o my mom ever knowing I had that OCD tendency. And I had it for quite awhile.I was too embarassed. I know that sinking heart feeling when somethng resurfaces. I would feel my legs stiffen and almost give out. It's like someone sucker punches you. Start each day anew. He may have had major setbacks yesterday, but that was yesterday. Don't talk about it, bring it up, let it pass. Every night after a bad setback, I would turn to my husband and say "he might be fine tomorrow, right?". Sometimes he wasn't, but soemtimes he actually was. Not completely better, but the setback would pass and he'd back to the level of recovery he was at prior to it.

Like others, I say take the siblings for strep. Cough could be a symptom of strep. Not saying that's what it is, but rule it out. You'll feel better knowing too. For the record, no one in my house gets symptoms of strep. If PANDAS wasn't part of our life, I'd have 3 children walking around with strep right now. My son's PANDAS behavior is our only sign to get everyone checked. The fact that he was doing his own type of ERP and took it upon himself to do it is fantastic. Will he tell you what he was trying to get rid of so maybe you can help reinforce it? It may be a touchy conversation to have with him, but overall it may help him too. Also, when my son was recovering, some of his old OCD habits resurfaced during recovery. It's like some of their brain heals in reverse of damage. Please keep us posted.

To be honest, I see it this way, as long as they are willing to work with you and you are seeing improvement with your child (and his stupid statement doesn't affect any services you may have been trying to get through the school), let it slide off your back. I think there are some doctors out there that know PANDAS exists, but are nervous to stand up for it or scared to tarnish their reputation amongst other doctors just in case another doctor wants to lie and say it doesn't exist. They need to grow up and stand up for these kids 100%.

When you say sick sick, I'm assuming you mean you don't think he has strep. But how do you truly know that? As you see by so many kids in this forum, it can be be anywhere. Or what if he has a different infection hiding out somewhere? Was it your son that had the tooth infection? If so, perhaps that is still lingering in his body or blood. I'm not saying to wait on the IVIG because of the money. Even if it was covered by insurance, I still wouldn't want to put my son's body and psyche through that w/o covering all bases (antibiotics). Not only that but if you go through the IVIG, do not get antibiotics after it, and you don't see improvement, you may then be facing docs saying something like it's not PANDAS because IVIG didn't work. When, in fact, the reason it didn't work is the lack of antibiotics. See how that can snow ball? I agree with Meg's mom. A doc that freaks out over a second opinion is not good. What is your ped's opinion about being the one to prescribe long term antibiotics?

I totally agree! I kept a daily journal very early on when my son got sick because I wanted to look at it objectively. When I first had a chance to sit back and reread it, it sounded very cut and dry and rather cold. I didn't put emotion in it. I just "stated the facts". It ended up showing me patterns that I would have probably looked over. It helped me keep track of timelines for comparison. I am so happy I did that.

I read your post last night but didn't have time to respond. I'm so sorry your instinct was correct. It's how everyone that the "Mommy instinct" is irreplaceable. Hopefully, you are catching it soon enough that (in the scheme of things) recovery won't be too difficult. One can wish and hope, right? So, is everyone thinking that is was a strain of strep that ran rampant in your region? it's seems like so many kids around you have this. It also makes one wonder why so many kids have this susceptibility to this autoimmune disorder. Has anyone contact the CDC or local media? Please keep us posted. I will keep all of you in my prayers.

If it's the same neurologist who didn't give antibiotics the first time, I would explore a different doctor first. I know it's scary and you want to fix everything asap, but take a step back and look at the whole "situation". Does anyone know how long the wait list is for an appt with Dr Triffileti? I say at least call his office and explain the situation. Perhaps you can speak to him directly. Every office has an appt hiding in their appt book for emergencies. It's up to you to let them know you are the one who needs that appt. I'm sure this posted earlier or somewhere else, but can you go down a list of what he is taking? Maybe there is something being overlooked that someone here can suggest in the mean time? Do you have the IVIG already scheduled with the otehr neurologist? if so, for when?

I'll answer this the best I can. My son's original trigger for PANDAS was strep. With strep, his PANDAS gets bad. You can read all symptoms under that "bio" topic someone started. It includes extreme OCD, ODD, sep anxiety, rages, no eating, etc, etc. After that first strep induced PANDAS episode, he now has slight reactions to viruses and allergies as well. But, those reactions are not as bad as strep triggered PANDAS and for him the non-strep ones go away once the virus goes away. My son never had a strep infection prior to when he turned 5 years old. But then after that he had it 3 times in 6 months. The ped said last year strep was really bad in our area. Currently, my son has been strep free for 7 1/2 months. He did have a virus induced (H1N1) blip in PANDAS behavior a few weeks ago, but it was the most minute one he's had. If I didn't know what PANDAS was, I wouldn't have been concerned. It was much smaller than the virus and allergy ones he had shortly after strep while he was still healing. He does not get classic symptoms of strep. No fever, no sore throat, etc.

I pulled up a quote from Diana's meeting with Cunningham in Sept http://www.latitudes.org/forums/index.php?...ic=5349&hl= Sept 18 "Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted. " I realize you said tics are still present, anger, and mild OCD. Is he any better than he was prior to PEX?As for the actual numbers, hopefully, that quote from the meeting helps.

I know!!!! I've read that except so many times! I'm telling you, I can't pinpoint what is it about him. I think maybe he's confused. Being pulled in different directions? There's more going on behind closed doors than true science, getting down to the root of problems, and helping children.

I wondered the same thing. I googled the moms name and where she lives and a facebook account poped up. I wen to it but was nervous to write since I didn't know for sure if it was her. But, I am watching Campbell Brown right this instant and they just showed the mom on tv. I think it's her. So I suppose we could message her and worse scenario, it's the wrong person.

Is there a way to get the insurance to cover the hospital stay at least? Is the hospital in your county? Would you be able to file for financial assitance through the hospital? You usually can only get assistance if you're in the same same county as the hospital.

Here's an email from Diana (PANDAS Network). Thought I'd share with everyone... Dear Families, A doctor from Stanford Univ. just sent me this. I know everyone is looking things up and you may have already seen this. Dr. Swedo reached out to me last week and would like to review all our stories. I know I need more info from some folks but let me get organized first! We have over 300 families now. She and Leckman and Cunningham are fighting to get the IVIG study resurrected by this summer. Swedo says she understands now that we parents are loosely banded together and not under the HIPPA regulations of her past studies -- that with our help she can help right up clinical diagnostic guidelines for pandas treatment. Also a neuro/psycho survey of sorts will be sent around to all of us after the first of the year.....to help better explain the medical community what the "sudden onset" of pandas looks like. I heard thru the grapevine that Dr. D. Geller is proceeding with an the "Saving Sammy" Augmentin-only study. I imagine controversial things and delays, etc. will abound in the next year -- but I think this are going to get better for future pandas kids Association between intracellular infectious agents and Tourette's syndrome. Krause D, Matz J, Weidinger E, Wagner J, Wildenauer A, Obermeier M, Riedel M, Müller N. Department of Psychiatry, Ludwig-Maximilians University Munich, Nussbaumstr. 7, 80336, Munich, Germany, Daniela.Krause@med.uni-muenchen.de. The underlying pathophysiological mechanisms in Tourette's syndrome (TS) are still unclear. Increasing evidence supports the involvement of infections, possibly on the basis of an altered immune status. Not only streptococci but also other infectious agents may be involved. This study investigates the association between the neurotrophic agents Chlamydia, Toxoplasma and TS. 32 patients with TS and 30 healthy matched controls were included. For each individual, IgA/IgG antibody titers against Chlamydia trachomatis/pneumoniae and Toxoplasma gondii were evaluated and analyzed with Fisher's exact test. We found a significantly higher rate of TS patients with elevated antibody titers against Chlamydia trachomatis (P = 0.017) as compared to controls. A trend toward a higher prevalence in the Tourette's group was shown for Toxoplasma (P = 0.069). In conclusion, within the TS patients a higher rate of antibody titers could be demonstrated, pointing to a possible role of Chlamydia and Toxoplasma in the pathogenesis of tic disorders. Because none of these agents has been linked with TS to date, a hypothesis is that infections could contribute to TS by triggering an immune response. It still remains unclear whether tic symptoms are partly due to the infection or to changes in the immune balance caused by an infection. PMID: 19890596 [PubMed - as supplied by publisher]

Now that she's off steroids, can you give Ibruprofen to see if that helps at all as you wait for the Augmentin to "do it's thing"? How long has she been on the new med? Throughout recovery, you will see backslides and setbacks. It is so scary to see that especially once you've had that taste of improvement. The thought that the improvement will not come back is maddening. You must remember what she was like while she began to improve on the steroid. That shows you she is "still there". Try to keep focused and believe you will get her back. You will.

I'm so glad he had a good day! It's okay to give it to him agian at the 6 hour mark. Keep in mind, it's not curing him of the existing problem, it's just taking down some of the inflamation that is present. Continue to search for a doctor and get to the root of the problem. If you continue to see a pattern with the tics improving with Ibruprofen and worsening as it wears off, that is something you will want to share with you doctors.

nevergiveup, Are you from Cincinnati?

The second I mentioned to Gilbert that my son had a PANDAS reaction to something other than strep, he stopped all communication with me and told me it was time to take him to a psychiatrist.

First make an appt with your pediatrician and have a strep test done. If rapid comes back negative, make sure it is cultured. Also tell them you want his titer levels checked. When you call to make the appt, just say you want to have a strep test done on your son. You don't really have to give a lengthy explanation to the receptionist. To be honest, she'll just tune you out. You can explain to your ped what you think is going on once you are there. Do you know of a neurologist in your area? If not, look at the need thread of doctor names and/or posts where you live. Today or tomorrow, call and make an appt with the neurologist. Tell them you suspect your son has PANDAS. You pediatrican may help you with this or have a recommendation. It varies what they are willing to do. I say go to your ped first because the neurologist will want to know the results of the tests and it may be a wait for an appt. You'll be bale to get into the ped's office today or tomorrow. If your son has an active strep infection, it needs to be dealt with asap. While you're at it, make an appt for family members to get checked for strep. Again, if rapid comes back neg, make sure they culture it.

Ibruprofen can be given every 6-8 hours. I would give it every 6 hours. I gave it, on a "as needed" basis when I saw behaviors come back. I only realized it may help after my son recovered from strep triggered PANDAS. I used it for when behvaiors resurfaced with allergies and viruses. It worked like clockwork. Every time at the 5 hours mark,I saw hings begin to resurafce again and worsen as the Ibruprofen began to leave his system. As for long term Ibruprofen, I'm not sure on that or how long it can exactly be given. I think the longest I gave it was 2 weeks or so. But I know some here have given it for longer periods of time. As for dosing, I say call your pediatrician and ask what the highest dose you can give is. I found out my son can have more than what was on the bottle. They told me the makers of the med put conservative doses on them in case parents give more anyway. My son weighs around 43 pounds and can take 2 tsp of liquid IB. Ibruprofen is Advil, Motrin, etc. I give dye free liquid Motrin since my son will not take a pill or tablet. It's the same thing you give a child to reduce fevers. It is suggested you do not take Ibruprofen with a steroid.

The study cited is from R Gilbert. I couldn't see what what the Cincy Gilbert (D. Gilbert) said in his commentary. D Gilbert still confuses me to this day when I look back at our experience with him.

I live life different now. I used to plan so much in advance and nothing really came as a surprise. Now, I live life in short moments. That's how I keep my sanity. When he's sick, I concentrate on getting him better. When he's well, I live for the moment. I don't know what he'll be like a year from now, or even tomorrow. I just can't do that to myself. I live in enough fear as is.But, the good news is, he IS doing well right now. I have a little boy who is strep free, no OCD, no rages, nothing like that. It is so important to believe all will be well. That you will have your child again. You need that driving force. Is there a cure? There's debate about that and different opions. Even on this forum. I believe it is not curable. If you want to use the word "cure", maybe I would agree that a child can be cured from the current behavioral symptoms, but even then, there is no guarantee. Nor is there a definite path that one can follow that will ensure improvement will happen. Each child is different. You can take the advice and experience from others and begin to find out what will work for your own child. I see it that PANDAS can go into remission. The behvaiorial changes can/may go away, your child can be free of strep, the child appears....normal. However, I think that the possiblity is always there for it to resurface if all the wrong cards fall into place again. You wouldn't have to prevent strep to the degree we do if it was cured. When I explain it to my family and others who I think won't listen to my full explanation, I conpare it to an allergy. If a child is severly allergic to peanuts, they need to avoid peanuts. If they don't eat peanuts, they appear fine. But the second they consume one, the allergic reaction happens all over again. I do hope and pray that he will hit that magical age of puberty and it will go away. As for that, I guess I will just have to wait and see. I have a while for that. he just turned 6.

I'm editing my post off line. I will repost it when complete.

So, he had untreated strep? Start with urgent care since you don't have to wait for an appt. If tests comes back negative, tell them about the positive stool sample you had done and you never got antibiotics for it. Perhaps they'll write a script out for him. Then make an appt with the DAN, even if you get a prescription. Good luck and keep us posted.

Most of his separation anxiety revolved around being dropped of at preschool. It always had to be me who dropped him off. He wouldn't let his dad. If we even mentioned his dad dropping him off, the ultimatums began (if you want me to go to school, mom takes me), the whining, crying, etc would begin. All without even leaving the house or even being a school day. In hindsight, I realized that he needed me to be the one who dropped him off because I knew what he wanted his routine to be. I aided in letting him complete them and I actually was part of the rituals. Actually, me being the one who took him was one of the OCD rituals. So, to start with, the thought of me not going caused anxiety. Once at school, he needed to get out of the car a certain way, he needed to put his stuff in the cubby a certain way, he needed to "flatten" and fix his hair a certain way after taking his hood or hat off and had to do it a certain number of times, he needed to kiss me a certain way and he needed me to kiss him back a certain way. Saying goodbye had to be exact. When part of the classroom's morning routine changed, he got anxious and needed me to help him "cheat" his way out of doing it because he did not want it to change. Because I wanted to his droppoff to go smooth, I ended up aiding him in completing each task. I "let" him do everything he felt he needed to do. Throughout the day, there were probably other tasks he would want to complete. If I wasn't there, he knew there was a chance he wouldn't be able to do them or someone may not allow him. Just the thought of that caused anxiety. Even at 5 years old, he was very smart about finding ways to submit to the OCD. I don't all the separation anxiety was a result of OCD. I am a stay at home mom, so he had me all the time. I was also the one who mainly took care of him and got him through PANDAS meltdowns, high anxiety, and all other kinds of episodes. I can see how he may have viewed me as a lifeline. When his dad took him to school, he was competely fine. Other OCD issues could cause it to appear that a child is regressing in social skills. Take for example, the classic fear of dirt and germs and contamination. My son had that. He wouldn't want to play with other kids because they may have picked their nose. In turn, the toys in the room may have been touched by those kids, so the child cannot play with those toys. That leaves you with a child sitting by themself not doing anything. It's a snowball effect. But if someone doesn't know the underlying reason for that child just sitting there, it looks like they are just antisocial and don't want to interact with others. vickie - can you elaborate on what you mean about the separation anxiety and ocd tasks? thanks!