T_Anna

DS14 is two weeks out from IVIG #2. He is still stuck in avoidance although we have made progress in rages, crying and mood. His triggers are strep, coxsackie and mycoplasma. He is on Doxcycline and Azithtomycin. Should I ask to try Valtrex again (did 20 days in January) Augmentin? Something else? I have a call to Dr.T scheduled for tomorrow. Im impatient since DS hasnt gone to school since January 9, ad hasnt showered/left the house since January 24. How many IVIGs will this take or should I mix things up in the meantime? Thanks as always, T.Anna

As far as rapid strep tests. You can buy these on Amazon. I am on my third box and it is the first to give me false positives, but the previous two wereon the mark. That said, you can always go to a walkin clinic and they will send it out (much more reliable and results in 24-48hours). The clinics don't seem to care since they charge for the walk in. T.Anna

DS is on Doxy for 2 months, he goes to sleep VERY late, but I don't think it's from the abx. I think it's just him : / T.Anna DS 14

our flare really hit stride during Christmas. We are still stuck (moving sloooowly forward, but nowhere near functional). DS received his flu shot 10/26, we realized things were bad and getting worse starting in October and he stopped ALL OCD related behaviors around New Years. Today marks TWO months since he stopped showering, sleeping in his bed, praying, leaving the house. I tried to push today since I'm cleaning or the holiday and he seemed very cooperative, but now he's not talking to us again. Btw, his birthday is April 24. T.Anna DS 14

Thanks pr40. He has been eating a lot less dairy since being on Doxycycline (cannot be combined with dairy) and not being able to eat cold cheeses. But with the holiday there will prob be more cheese dishes so I will pay attention if things spiral. Thanks, T.Anna

We just did our second this past Thursday and Friday. I know that with the holiday approaching and Spring around the corner it gets harder for me to be patient. We have seen some old behaviors resurface as well as some improvement. Hopefully, it'll fall in place for our kids soon!! T.Anna DS 14 dx 11/30/12 Last at school in January

Thanks for all the responses. Re: Laxative He went last night from 1:40am to 7:00am and I think the laxative prob made things worse. I think I'll eliminate that one, since he still is only going twice a week and probably feels crampy the rest of the time. Pro-Biotics: I'll eliminate the Florastor for a while and see what happens. He does sometimes get angry and stops talking to us, so it would be nice to get away from that (although it has been improving lately). I'll see what happens after this week w/out the above two pills. Then maybe I'll add the flaxseed since DS is very sensitive to different flavors and the fish will be a turn off for him. Thanks as always, T.Anna

That worked out well last night and today he didn't complain about his stomach and ate a ton. Thanks, T.Anna

After reading the recent threads about supplements and compounds I'm afraid that I may be causing more issues with my lack of knowledge. DS tested positive for Mycoplasma, Coxsackie and strep (with the latter two the bigger issues). He is 4 days post IVIG and taking Doxycycline and Azithromycin and 25mg of Luvox. Supplements: Advil Multi Vitamin (1/2 dose) D3 magnesium Vitamin C Melatonin Phillips laxative caplets (1/2 dose) ProBiotics: Florastor Culturelle Thanks as always, T.Anna

Thanks. He can probably drink more, but even with stool softeners or laxative type products he can hold it. Before he settled into this avoidance pattern, he would go at least once a day. Once he started with avoidance of all things OCD (almost everything in his life) he was going "maybe" once a week....So I'm happy that at least I it's reliably Wenesday and Saturday and down to 2 or 3 hours each time : / T.Anna

Btw, before jumping into IVIG, try abx, and steroid burst & taper. The steroids showed improvement and gave us the confidence that IVIG may help. He is much better after the IVIG (and abx) than he was with the steroids. T.Anna

How many IVIGs probably depends on many variables: your child's age, how dysfunctional they are, how long they have had PANS/PANDAS untreated, etc. Our DS14 was diagnosed in late November (Strep, Mycoplasma, Coxsackie), we started anti-virals and abx, but he kept sinking further and further into the illness and finally stopped going to school or leaving the house. We tried IVIG#1 in February and he started to "wake-up" a bit, but still wasn't functioning (maybe 10% better). Last week we did IVIG #2 and he seems a bit better(20% so far?), we will continue with this until (and abx/meds) until we have our son back. My understanding is that IVIG can bring them back, but really only works for a few months, the hope is that you can keep from sliding ALL the way back once your child is healthy (with CBT, Meds, supplements). We did both IVIGs at home (same nurse who was wonderful and keeping her schedule open in 4 weeks). At first I was concerned about doing it at home because of the risk of anaphylaxis shock. But my son does not have Asthma and is averse to going out, so we are very happy that we did it at home, it was great. According to Dr. T it can take "a few" IVIGs. HTH, T.Anna

DS has been complaining about stomach aches. He had his second IVIG on Thursday and Friday and he has been complaining about his stomach more than usual. Unfortunately, his primary OCD at the moment is going to the bathroom which he avoids doing as long as possibly (he goes about twice a week) so that may have something to do with the pain. I want to try activated charcoal since it seems to help in many areas, but I don't want to risk constipation. Thanks in advance, T.Anna DS14

So glad to read this!! Happy Birthday : ) DS just completed IVIG #2 on Friday, hoping to have a similar success. T.Anna DS14

Also, many on this forum have found that the Igenex Lyme test is more accurate the WestrenBlot. T.Anna

Here is the RX list of Dr.T's blood tests. Please keep in mind that the majority of these tests need to be done at a Lab. PLEASE DO ALL TESTS 1-20 (UNLESS CROSSED OUT) 1. ANTI-STREPTOLYSIN O TITERS 2. ANTl-DNaseB TITERS 3. STREPTOZYME 4. MYCOPLASMA PNEUMONIAE IgG and IgM 5. LYME WESTERN BLOT 6. IgG, IgA and IgM levels 7. IgE level 8. IgG SUBCLASSES: IgG1, IgG2, IgG3 and IgG4 (ALL 4 PLEASE) 9. FERRITIN 10. CERULOPLASMIN 11. VITAMIN D (25-OH) 12. PNEUMOCOCCAL ANTIVBODY PANEL (14 SEROTYPES) 13. CBC WITH DIFFERENTIAL AND PLATELETS 14. BABESIA, BARTONWELLA, ERLICHIA TITERS 15. FREE T3, FREE T4, TSH 16. ANA WITH REFLEX TO INDIVIDUAL TESTS (QUEST 19946 OR LANCORP 164863) 17. COXSACKIE A TITERS 18. EBV PANEL 19. HEMOGLOBIN A 20. COXSACKIE B TITERS *DS 307.23 300.3 HTH, T.Anna

You may ask to speak to the doctor or someone who is better versed in their available procedures. My friend's husband is an eye doctor and their secretaries aren't always know what goes in the exam room. T.Anna

SurfMom, thank you so much. I will definitely use this information if it happens again. It does seem as though it was a control issue as he also stopped speaking to us. And then took them when he was in the room with just his brother. Late last night I texted him that I'd like to get h something in light if the second IVIG (this one was a quick surprise to all of us). He opened up immediately (via text), I guess I forgot the saying "you can get more bees with honey." Praying that our kids finally turn a corner to fast healing. T.Anna DS 14

Thanks for the suggestions. i will ask the nurse to talk to him.Taking away screens combined with my going out to a school event seems to hav helped. He took his meds and asked my mother to bring him food. Looks like DH and I are on some sort of evil list in his mind. I know it's not personal and I'm glad he's at least talking to his grandparents and siblings. Praying this next round of IVIG does more. T.Anna

DS 14 started sliding again. He is 4 weeks post IVIG and yesterday he stopped talking to us. Last night he was stuck in the bathroom until 4:30am (from midnight). It's now 5pm and he hasn't taken any of his morning meds, including Azithromycin and Doxycycline. He is scheduled for his second IVIG tomorrow. How do you make a teen take pills? I took away all the "screens" until he takes the pills, but so far he just lies under the covers staring at me (oh, and he gave me the finger when I told him that Dr.T ordered an IVIG for tomorrow). Any advice is welcome!!!! T.Anna

We did rifampin with Clindomycin . T.Anna

HopeNY, can you post the link? DH had a heart attack at 31 (had bypass and is completely good now)...and DS has been on Azithromycin for a month already. Thanks, T.Anna

<< To make a long story short, the IVIGs (notice plural form)>> PTCgirl, how far apart were the IVIGs and how did you know you needed more than one? DS14 had his 3 weeks ago and I worry that he may have had PANDAS/PANS almost 10+ years and maybe one IVIG won't be enough. Thanks, T.Anna

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

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 no one is home to wake him?? Thanks, T.Anna