T_Anna

MomwithOCDson, thanks for asking! He wouldn't take it. I tried to get him to take it, but he remembered the Pepcid TV ads and felt it wasnt necessary. Those two pills have sat in his pill case for 3 days. Today I went to Target and bought a generic version that is just a plain round pill, maybe he'll take it since it doesn't look like the Pepcid. No idea why he was against the Pepcid, but I have stopped trying to understand the "logic". He has stopped complaining about his stomach and throat. Either because he feels better or he doesn't want me pestering him about the Pepcid. This weekend has been overall decent PANDAS wise. No rages, he has been in a decent mood, and we have even heard some laughing (outloud at "Friends" etc) and kidding around (even about the avoidance OCD stuff). I'm trying not to get too hopeful. He still isn't eating well consistently and there is zero improvement on the shower, bathroom, etc front. It is now 3 weeks post IVIG. T.Anna DS 14

Thanks, will try it tonight. I thought I read someone post and it dawned on me that maybe he has heartburn. Thanks again, T.Anna

DS 14 complained last night that his throat was burning and so was his stomach. He isn't eating a ton and drinks mostly tea (decaf peppermint) and hangs on the couch a lot. Does this sound like acid reflux? Should I try giving him Pepcid? 10 mg? He's about 110 lbs. I think someone mentioned that they use it to combat Skmething (blanking what). T.Anna

Thanks for all the replies. It really does help to read these and see that there is a light at the end of the tunnel. Please keep them coming as it is so helpful to read experiences and know it can get better (even much much better than before). Mayzoo, thanks so much for sharing your daughters story. I'm not sure we would recognize our son at 80% since we believe it's possible he's had this for years and years, it would be very exciting to see that level of improvement. Hayley, I will try to be more patient. I just see his friends a lot and hate that he is missing all these "regular" teen kid milestones. Kerry, we have only tested Lyme on the regular test. Mdmom, I have been thinking about an LLMD, it will be a challenge since it is impossible to get him out of the house to go see any doctor, but I will start calling and maybe we'll be able to get to an appointment at some point soon. LLM, Regarding giving meds more time, I agree. For example DS was only on Augmentin for 10 days. I think we were hampered by our timing (Dr.T's mother became sick around the time I started figuring out how to help DS) and we were stymied by some questionable advice from our ex-therapist. Hopefully, we'll be able to get more on track now. Michelew, hoping we both have better stories soon. MomwithOCDson, I ordered two books (the brain gets stuck one and dr.pinto's). It is unfair that he could spiral in a month and it takes months and months to get better. Smartyjones, I dream about DS getting better and celebrating by throwing out that couch! This afternoon and evening was better than we've had in a while. I will try and follow your advice and enjoy the good moments. Someone had suggested reading Saving Sammy and after reading it, i bought copies for my whole family and school administrators and the school psychologist, etc. But it's more personal to be able to actually "talk" to parents going through the same experiences (or similar). Thanks as always, I'd be lost without this forum. T.Anna

I guess CURE is the wrong word. But he slipped so fast from October to December and now I'm starting to believe we'll never get him off the couch : ( DS 14 was diagnosed with PANS/PANDAS by Dr.T this past November 11/2012 [strep. Coxsackie and Mycoplasma]. But we had started seeing body convulsions and what we learned later was scrupulosity (and OCD)in June of 2011. This past summer/fall the OCD started to get really crazy. Since November DS has been on many different abx (Biaxin, Augmentin, Clindomycin, Refampin, Doxycycline and Azithromycin) as well as Valtrex. Starting in November we were doing a ton of CBT and basically the OCD was just moving from one thing to another. In the beginning of January he shut down, he stopped going to school or doing anything associated with OCD (no shower, leaving the house, etc). We stopped the CBT as it wasn't helping. We later realized that he was getting strep again and again and his numbers for strep and coxsackie were rising. Two weeks ago (17 days ago) DS had an IVIG. Pros: He looks better, has better energy, is more animated. Cons: He still hasn't showered, changed clothes or left the house. Is there hope? Have others been through this and gotten better? When we try to push him in any direction he breaks down and cries. I dread that he'll turn 15 lying on the couch. Yes, I know IVIG needs more time, and that sometimes more than one IVIG is needed. It's just hard to watch. Another week has started and DH and I struggle anew to work and take care of DS (as well as get our two younger kids to school, etc). Honestly, I am depressed all over again. Any advice, stories, links to blogs or personal stories are greatly appreciated. Thanks as always, T.Anna DS 14 (4/1998)

We used Walgreens infusion center and they had mentioned flu like side effects like chills. I would ask the prescribing service about your symptoms. I don't remember anything about sores. T.Anna

Not sure where you are in CT, but Dr.T in Ramsey,NJ takes Oxford. T.Anna

Thanks. LLM, thank you, I sometimes get cold sores so I will pick up some L-Lysine. I know I need to be patient. Sometimes it's just really hard. He's making progress, but there is still such a determined Avoidance of OCD. Thanks again, T.Anna

DS14.5 has so far been on the following: Augmentin - 10 days Biaxin - 20 days (10 days about 2 weeks apart) Valtrex - 20 days (10 days about 2 weeks apart) Clindomycin - 20 days Rifampin - 8 days (at the end of each 10 day dose of Clindomycin) Currently: Azithromycin - 15 days Doxycycline - 26 days Wondering if we should try Augmentin again since we didn't give it a very long time. or Cefdinir that some people seem to be successful taking. Thoughts? T.Anna

By the way, my son is enrolled at private school and I dropped off 5 copies of Saving Sammy to all th e administrators and the psychologist. It really helped the school psychologist understand the illness. Although, I think they are running out of options, it seems like the whole year is gone. T.Anna

DS 14.5 just had an IVIG 10 days ago, and while we see progress it is very very slow. It may have to do with the severity of the flare (he was really not functioning). His triggers were diagnosed in November as Mycoplasma, Cox Sackie and Strep. In January we were dealing more with Strep and Cox Sackie (Myco went down). He is currently on, Azith and Doxycycline, but maybe we should try something else...instead of Doxy. I want to stay on Azith. What abx (or combo) worked for your child(ren)? What are main triggers? Thanks in advance, T.Anna

My son DS14, has not been in school reliably since early December, he had been back off and on but kept catching strep and then things just slid downhill FAST. He is now also not showering, leaving the house, etc. DS is also a patient of Dr.T's and was diagnosed with the same triggers, Mycoplasma, Cox Sackie, Strep. We did IVIG 10 days ago. He is currently taking Azith. and Doxycycline, but while things are improving by teeny tiny steps, it is still a very slow process. As far as school is concerned, he is only now getting to the point where I think that next week we may be able to consider an at home plan...hopefully. I agree with LindaMW, it is torture to watch them wait to get better and languish on the couch. T.Anna DS 14.5

Great idea. I see they sell a Suave dry shampoo at Target. Might see if I can try that. T.Anna

Thanks everyone. I love the pool idea, but besides going to Dr. T's he hasn't left the house in a month. ChrissyD -here's to speedy recoveries for our boys. T.Anna DS 14.5

DS 14.5 had his IVIG a week ago Thursday and Friday. Procedure went fine. He seems a bit more "awake" cognitively and was showing a real sense of humor (honestly, I don't remember him being very funny). However, he still wont take a shower, change his clothes (it will be a month on Monday) or go out of the house. He invites a couple of friends over, but is not so open to people who want to visit him. His feet stick out of his socks and his hair is crazy, he doesn't smell bad, but it's starting to change. By the way, he seems totally fine when he is "up" lately, just looks like Tom Hanks in Castaway. For those who have had an unwashed child. How long can it continue? How much do you expose your child to visitors? This morning I cleaned up some clutter which included a sports bag of his with 2 half used Poland Spring water bottle. He flipped out! All out rage, which we haven't really seen. Later I found the two empty water bottles shoved in the cabinet under the sink. I looked at a few post IVIG posts and some say they began to see real results at 10 week, anyone see anything earlier in a teen? Any input, advice, is welcome. I realize we are living a pretty HUGE flare, but what's the longest it can last? We are on Doxycycline, Azithromycin and still 25 mg of Luvox. I would add more abx if I could figure out which. Oh, and since I'm venting, I'm tired of well meaning advice from the non PANDAS familiar. For example: Are you sure you gave CBT enough of a try? My brother in law is a pediatrician and says it has a lot of results. If you read this far, thanks. T.Anna DS14.5

So sorry you need to deal with this. DS is on Azithro. every day. When he would go off abx he would fall apart. Crying, sad, etc. I had the audacity to clean up our hallway by the entrance door and he flipped out. I got a note similar to yours, but mine had a curse word : ( Hang in there. T.Anna DS 14.5

My DS also had this where he thought he had wet the bed and was dry. We also checked for UTI. T.Anna

Walgreens Infusion company, subsidiary of Walgreens (I believe they're based out of Chicago IL). Supposedly we are doing it tomorrow. I will hear tomorrow morning. Just in case I had doubts whether this is necessary...DS has been stuck in the bathroom since 7:15 (it's 10:48 right now) : / T.Anna DS14

Price I was given tonight, $5177 per 50 grams. We will need two. T.Anna

That sound like mycoplasma (waking pneumonia). Yes, that has caused a lot of problems with many on this list. T.Anna

Glad you got him to agree to order the CT scan, hope you find the missing puzzle piece soon. T.Anna

http://intro.bio.umb.edu/OLLM/112s99/dairyBacteria.html Just saw this on Dr. T's Facebook page. Does everyone here avoid cheese? DS loves Parmesan cheese on noodles. T.Anna

We went to see the doctor yesterday and we went over DS's last bloods. His Immunoglobulins have been going down, and his Strep #s and especially Coxsackie numbers have been on the rise. At the moment DS seems to be doing a bit better, he is on steroids, Doxycycline and Azith. The mycoplasma have been dropping and since the Valtrex hasn't seemed to make a difference (he had been on 20 days) we are going ahead with IVIG. DS has had a better mood, sleeping more "normal" hours and last night we tried Melatonin which worked great (DS wouldnt try without the doctor's ok). Yesterday was the first time DS has left the house since January 25! And still hasnt showered since then...but hopefully the IVIG will help with the Avoidance/OCD issues. T.Anna DS 14.5 - dx in November and hasnt made it to school regularly since Decemeber : (

He's in a better mood more of the time, but also a bit more manic. I just suggested he shower (it has been weeks) and he lay down again with his head under the covers. Really nervous about how I'm going to be able to get him out to Dr.T's tomorrow. He hasn't left the house since January 25!! T.Anna DS 14

Oops double reply