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Everything posted by T_Anna

  1. My DD9 (non pandas) learned to swallow pills by watching a YouTube video we found (there are many). She is allergic to amox and hates the slimy liquid of Azithromycin. T.Anna
  2. My DS 14 hasn't left the house (besides going to Dr.T on 2/11) since January 24. He is in a bad flare and we are 3 weeks post IVIG. He doesn't go to sleep until 2am or even later and sleeps all morning until 2 or 3 in afternoon. We have seen glimpses or our son, but are still waiting for some real progress. DH and I work, I come home around 3:40 a nervous wreck until I see he is OK. Two questions: 1.Does/did anyone else leave their teen alone at home during a homebound flare? 2. Is leaving him home alone preventing him from getting better? Am I enforcing this day/night schedule since
  3. 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 wee
  4. 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
  5. 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
  6. 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"
  7. 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 we
  8. 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
  9. Not sure where you are in CT, but Dr.T in Ramsey,NJ takes Oxford. T.Anna
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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 consid
  15. Great idea. I see they sell a Suave dry shampoo at Target. Might see if I can try that. T.Anna
  16. 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
  17. 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 Cas
  18. 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
  19. My DS also had this where he thought he had wet the bed and was dry. We also checked for UTI. T.Anna
  20. 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
  21. Price I was given tonight, $5177 per 50 grams. We will need two. T.Anna
  22. That sound like mycoplasma (waking pneumonia). Yes, that has caused a lot of problems with many on this list. T.Anna
  23. Glad you got him to agree to order the CT scan, hope you find the missing puzzle piece soon. T.Anna
  24. 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
  25. 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 tim
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