Pandasphilly

Hi Dedee, Just Pm'd you

We have experience with both and both are excellent programs. My ds10 attended Rogers for sudden onset OCD including eating issues. At Rogers there is no escaping therapy, exposures are not an option. They eat, sleep and breathe therapy. They have an excellent CBT/ERP intensive treatment program and work closely both individually and in group. They are excellent at providing antibiotics and medication, and following your wishes. In fact it is there that we finally received high dose augmentin which was life changing for my son. Dr. Ekin is excellent. I cannot say my son enjoyed it since it is hard work, but he seemed in ok spirits when we visited every other week and we found fun things to do on weekends. The downside is that your child is exposed to everyone elses problems, but they are taught that these are specific to that individual and are to remain confidential. He seemed to compartmentalize his ocd from others. My fear was that he would take on other peoples ocd and rituals but I don't believe that happened. I will definately consider it again. We recently attended USF (almost one year later than Rogers) due to relapse from a second severe Pandas Flare. Unfortunately we were in a flare during attendance so he gave a lot of pushback to his therapist but it also is a phenomenal program. If you are not trained in ERP you will learn it here and be able to help your child moving forward. At Rogers you as parents receive a bit less training in ERP but you may already be familiar with it.

It was prescribed by LLMD so he should be but he's refusing to take all meds.

I believe they both have the same risk in regards to sun. My husband is mostly irish so my daughter is very pale. She started doryx in late spring last year and burned so quickly that I actually held off treatment until September so that she could do swimteam. However we are now back on Doxy for lyme so I provided her a face moisturizer with sunscreen that's easy to apply. I also carry a spray sunscreen since she's on spring sports and outside a lot. If she braids her hair and has a part, even the scalp gets burned. She's really sensitive to sun on doxy and doryx. My son has a tanner complexion so doesn't burn quite as quickly. I don't worry if he's out for 1/2 hour or so but anything longer in the sunshine and he needs sunscreen. If your daughter is doing any type of sports or camps I would definitely cover her with sunscreen.

Thanks s & sHow long did it take to get rid of parasites? Is there herxing?

Thanks Allie! should we all be checked? Is it transmittible to others? By chance i just found My daughter has Lyme & bart (probably more. I'm taking her for ART next week). And I was hospitalized with what turned out to be Lyme about 5 years ago (suspected to have had it all my life). I'm imagining I may have passed it. I doubt I was ever treated properly so I'm wondering if I could possibly give it back to them? Also husbands never been checked.

Brief History: DS11 had signs of PANDAS at a younger age however it came on full force with strep and ALL symptoms including OCD in Sept 2011. We received a proper diagnosis in April 2012, in-patient CBT/ERP, antibiotics & 1 round of IVIG in July 2012. We saw some improvement, followed by a decline upon return to school in September 2012. We did Pex in Nov 2012 and our son was worse than ever. My son then got the flu in Feb 2103 and declined further. It was near impossible to live with the rage, violence, inflexibility etc. We pursued Lyme and ART. Today's results from ART testing are below. The doctor said my son is FULL of parasites. The lyme testing & every possible coinfection registered so high they turned the machine off. Same for STREP which we knew was treatment resistant based on bloodwork. His stomach is extremely disbiotic (I think was the word) due to all the antibiotics, infections, parasites, candida, hpylori, etc. Part of me is not surprised as his most recent decline indicated how bad off he really is. Our doctor feels he will find relief even from just the first step of the treatment process which is the parasite protocol. Question: Have any ART followers seen THIS MANY infections/viruses? Candida Strep Mycoplasma Proteus Rickettsia Salmonella H.Pylori Ecoli Klebsiella Camphlobactor Bartonella Borrelia Erlichia Pseudamonon Clamydia Pneumonia Ascaris Enterobias Necadum Shistusons Tricharia Liver Fluke Virus: Herpes 6 XMRV Borna

Are you seeing positive results with privigen? What dose are you using?

We cannot obtain gamunex brand ivig in the hospital which means we only have access to Privigen brand. Is there any reason we should not be using Privigen brand? Can we later add gamunex (as early as next month) or should they not be mixed? I thought i read somewhere long ago to try to obtain same brand and same lot from same lab if doing regular infusions. (at least I'm hoping for regular beyond this one opportunity). Also has anyone here used Privigen and what was the response & results? Our neurologists admin explained gamunex is the only one approved for neurological use, the rest are for immunity. If they were doing it in the office they would normally order gamunex. Now I'm feeling nervous

Hi TMom, I find it interesting because my son's history follows that of your daughters almost exactly. Except his began 2 years younger (at age 9) after strep. We also came back positive for bands 23 + 41 on Western Blot recently in February 2013. Can you please let me know the results you find through igenex? Also how much IVIG initially brought you to a symptom free year? We are now treating for suspected Lyme and bartonella or other co-infections and my fear is the same in regards to symptom increase in die off. (increased aggitiation (rage) and Defiance). I definitely need to get on the detox train. We see an ART doctor next week so I'll share any additional suggestions to those of these brilliant moms ahead of us!!!

Do they just test iron levels? Ours were low not high. I was actually thinking of this as we are Irish but his levels didn't seem concerning. This is a good description of testing for both genetic and secondary hemochromatosis: http://www.cdnhemochromatosis.ca/assets/pdf/hemochromatosis_diagnosis.pdf Our doctor just explained 2 possibilities: either relief of toxicity in the blood; or relief of iron levels (hemotchromatosis) in which therapeutic phlembotomy (or plasmapheresis) is sometimes used to relieve the symptoms. Also low iron levels do not exclude a person from hemochromatosis. He recommended the tests you posted. Thanks so much! It actually runs in our family through relatives, not immediate. He said Imagine how good the person might feel after a pint rather than just a moderate blood draw. I think the first theory - relief of toxicity - also makes sense.

Thanks may zoo and everyone for responding.

Amazing news. Gives me hope also. Does your ped have a plan to administer Bicillin shots regularly? Or just one round?

Do they just test iron levels? Ours were low not high. I was actually thinking of this as we are Irish but his levels didn't seem concerning.

I notice every time my son has a relatively decent amount of blood drawn his mood and symptoms drastically improve. Does anyone else notice this reaction in their child? Has anyone ever explained why this may be?

Ditto to Misty's post above. Also extreme slowness of getting words out, stammering along the way til the response takes so long he either gives up, or just rages in frustration. This was a child who gave a student council speech and won, as well as winning grade wise spelling bee, etc. A huge degradation has occurred.

Tpotter can you pm the name to me as well. I live in the Philadelphia area. Cannot take another day of rage.

I have been familiar with anatabloc for 9 months ot more and decided to try it a few months ago. While we experienced some relief (day 1 was a miracle) my child also suffered some really concerning side effects including heart pausing, difficulty breathing and numbness of body. It ended up being a drug interaction called Long QT delay where the heart cant keep up, most likely to ciprofloxin (although he was on both augmentin & cipro) Ive been meaning to connect with you. It definitely has its advantages but I learned a lot about dosing, etc and will start a new post so as not to hijack.

Broo100 Was your child on any meds when you tried anatabloc? For example augmentin, any other antibiotics? Any regularly dosed supplements?

But, if you're dealing with lyme, you don't want to use steroids. Makes the lyme worse. There was a post just recently on the lyme forum about having cleared lyme 2 1/2 years ago from both her kids. Can't remember all the details, but just in the past week or so. Since you're dealing with immune deficiency, lyme and strep (at least), I would definitely be also looking at co-infections, such as bartonella, babesia, erlichiosis, etc, as well as viruses, and parasites. You really have to clear all infections, plus see if there's heavy metals that are impeding the process, and other problems. Browneyesmom, are you working with an LLMD? There are specific protocols for each type of infection, and they definitely do help. I would also recommend that you consider alternative treatment (in addition to the LLMD, abx, etc.) We have gotten a lot of benefit from LLMD tx plus ART (helps figure out what is going on) plus my kids really like chiropractics, and I've gotten some great results with acupuncture. Although abx, IVIG and PEX helped my kids a lot, they just weren't holding. That's where the alternative tx has helped. Tpotter Should there be ART in conjunction with LLMD? Is ART not enough to treat Lyme, strep, virus parasites etc? If so which doctor do you recommend first?

Hi smarty, Yes I'm continuing ibuprofin. How is your son doing? For us The face and eye tics are getting worse & so exhausting. IViG originally relieved this so i may just schedule that again soon after I get results on viral tests. It's the mood swings, rigidity and rage that are killing us both. The remorse he feels afterward is heartbreaking. I'm not yet seeing signs of anxiety and panic attacks so that's good.

Good question on alternative fever response. I can't say I quite understand it but Dr. T said fever is good. Means it's fighting something in the body. He said Cytokine levels are higher during sickness which may be why he feels relief. Maybe someone can chime in here. It does sound conflicting. I never inquired about Ibuprofen after fever but I saw some concerning tics (arm jerk back, vocal tic returns, eyes and head slowly up like Stevie Wonder, Hand tics etc. I was thinking more likely it would help than hurt so I went for it. We are about 5 days post fever and things got worse each day. Not quite as bad as the initial onset but it's still early so I'm fearful. Days 1-7 fever, child is an angel. No signs of pandas just sweet and loving and sick (with flu? I guess), plus strep titers doubled even though he swabs negative. Fever breaks day 8. Day 8 OCD increasing but he's able to correct himself Day 9 Swearing starts (he can't control this, asks why it's happening. This one went away originally after IVIG). Hyper, Another vocal tic, distracted with technology so not eating, starts to think dad is contaminated again. Day 10 & 11 says "I need your help", fighting over meds, abusive to dog, begins getting agitated and raging,asks "why is this happening to him (again? Help me. I wish I had self control", then bedtime fears, thinks he saw something, separation issues. Day 12 Wont eat at all, nothing is right, nothing is good enough. Can't make it to therapist. Thank goodness a friend called to come over and he recovered quite nicely, ate late lunch, plays. I'm walking on eggshells!!!

We just experienced similar starting with 102.8 fever (plus strep & flu symptoms) then down to 101 fever for a week. Fever to us means a few things: 1. When he gets fever almost all pandas symptoms disappear. 2. It's always the calm before the storm. We Brace ourselves. I decided to use Ibuprofen due to how high it would go without it, back up to 102+, and also because I noticed ocd & mood ramping up around day 7 when he started to turn the corner. I felt it could only help. However in speaking with Dr. T during this time he suggested we may not want to reduce fever too much (I already did -oops). Also again he mentioned alternative fever response helps elevate cytokine productions which is responsible for helping relieve pandas symptoms.

Thanks LLM. You are a guiding light on this forum and I really appreciate your quick reply. We added Cipro a few weeks back due to urinary problems (which all of us pandas moms know are not bladder infections but what the hec I was hoping) and we did see some small improvement in mood, behavior etc. It was big enough for my husband to notice so maybe it wasn't all that small. Is Cipro along the lines of bactrim? Maybe I can convince Dr. L to consider your regime as repeating the same failed approach doesn't make sense to me.