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Hoping it goes well today! No nausea for either of my girls with pex. Glad the Zofran is on board! My girls improvement: one week for one daughter (who had not been as ill for as long) and near total improvement by one month. by one month for other (sicker, for much longer- onset to pex was three years) and it was not as huge improvement, but it was still very, very helpful. This was a pattern, which we saw after her second pex a few months later. They had it done inpatient over 4 days. and then we went home.. to wait! Both have needed other interventions since then, but it was solidly the key to getting them on track. I would do it again in a heartbeat, if they needed it! I am so excited you have this chance for your son!

My daughter took it for many months for positive WA-1 Babesia. No problems that I could I tell from it at all. Out of curiousity, what problems did she have from plaquenil? It is usually not much of a "side-effect"med

Depends on bloodwork. Yes, esp anyrhing infection related. What came back concerning?

Totally agree, hrosenkrantz. On all points- my daughter did not herx, she got worse. No doubt about it. These meds are serious stuff and to target something that may not even be there, is risky, in my opinion. And I also totally agree on the southern mom part

T.Anna, Besides the increasing anxiety , how is he doing? I have another angle for you to consider-- how long since his last ivig or autoimmune focused treatment? Could it be time to give that another go round?

My child has no "typical" symptoms from this disorder. No clots, no obvious coagulation or vascular issues. However, as i am sure you are reading, there are many neurologic, cognitive and psychiatric symptoms associated with it. She had those! She has moderate-high anti-cardiolipin antibodies (a few months apart- the criteria for diagnosis) In females, it is definitively associated with miscarriage, placental problems and stillbirth. I also have this syndrome and during pregnancy, I take a baby aspirin daily and lovenox injections daily. I switch to twice daily heparin the last few weeks of pregnancy. When I am not expecting, I am "treated" preemptively, I suppose, with 325 mg aspirin daily. I did have significant pain associated with a very frequent "pins and needles" sensation in my fingers, feet and elsewhere- for a few years. As I was diagnosed with the syndrome and treated- those symptoms have remitted. I never was able to notice blanching of the area (due to decreased perfusion) but the hematologist I saw felt that was the cause of my pins & needles feelings. He said that some patients are able to notice the blanching and sensation concurrently, for example, in their fingertips. My daughter has been treated with cellcept, plaquenil, baby aspirin, monthly IVIG and high dose steroids and then Rituximab in April. She is being treated more for autoimmunity than coagulation, specifically. At first, I thought I understood the APS as causing a blood flow issue that allowed the BBB to be a bit more permeable and that allowed the encephalopathy. I am not sure the mechanism is understood. Even in the fertility aspect, there seems to be disagreement as to whether the problem stems directly from a clot (caused by the "sticky blood") or if it is more of an autoimmune reaction to the antibodies that creates the hostile environment for a pregnancy. I think that also may depend on the timing of the loss. My daughter is doing great. This treatment has been in effect for almost exactly one year! (Aug 4, 2013 was her first of the monthly IVIG/solumedrol infusions). Her sed rate is now normal, for the first time, since it has been checked since her illness began ( in Aug 2008)!

If she is not sleeping (on all these abx and supplements) then it seems they are not going to help her sleep. Give her the seroquel! She gets minocycline, amphotericin, bactrim and valtrex? Is one doctor in charge of all of this? this seems like a lot, especially if it is not helping! Have you tried backing off any of this, whether combinations or single medications to see if there is any change. Sleep is imperative for her brain to heal, her sanity and yours. Consider that the seroquel may be only a temporary measure-- who knows how long, but give her some rest.

Why do you not think it is HE? Duke has been very successful for my daughter. Sit tight- this all takes time. My daughter had improvement from pex, but it took a month and was only a relative improvement. This happened twice (pre-Duke). They know what they are doing, I know it is so hard, but hang in there. If you want to communicate privately, feel free to pm me. I am sure they told you but most forms of AE take 18-24 months of proper, consistent , aggressive tx. It sounds like she is getting that level of treatment. thinking of you. How old is she?

not to start an argument, I am sure there are people here who will tell me I am wrong-- but doesn't the streptococcus simply denote how the bacteria grows and its shape? I know there has been a link to an article that totally refutes my opinion on this- but I wanted to mention that maybe you should not worry about it. I have lost a lot of time and mental energy on pseudo-science trying to get my kids better. I would hate for you to throw the proverbial baby out with the bathwater, if your child enjoys this yogurt.

My daughter(16) received rituximab for the first time in April. We did not notice any increase in symptoms, that I recall. We thought she seemed better ( a least a little) by about 2 weeks later (when she had her second dose) The doctors do not believe the ritux could have helped that quickly. She is now 4 months out and just doing great. She has been solidly improving after a nearly a year of monthly IVIG, IV solumedrol (high dose),. cellcept, and plaquenil. Does your daughter have a diagnosis besides PANDAS? My daughter has anti-phospholipid syndrome. Her doctors' do not expect any improvement from the rituximab to show until 4-5 months. I believe they will be stopping her monthly IVIG infusions, and seeing how she does. When we tried to stretch the IVIG intervals this spring (pre-ritux) she really declined. The hope is that Rituximab will reduce the need for the "band-aid" of IVIG. At least, that is how I understand it! Was she given steroids with the infusion? Does she ever get IVIG? How often will she be getting the rituximab? Are her symptoms primarily psychiatric?

I actually had that problem for several year (a small itchy, tender lump at the site) No illness, no problems. Just weird:)

I am not suggesting that the lymph nodes be ignored, as a potential sign on infection (though there can be other causes). However, please explore the possiblity that the lump could be a granuloma. They can last for months or even years after a tick bite. I am not sure what her symptoms are- PANS? or fever, muscle &joint aches? The tick bite may have everything or nothing to do with what is going on. It is a real crap shoot, to be honest. Just read into granulomas or dermatoses after a tick bite-- maybe you will feel a bit better after you compare that to your daughter's lump.

my littlest affected child's tonsils cultured postive for Methicillin Resitant Staph (MRSA) when they were removed for sleep apnea (no infection suspected at all!) She really did improve after that- though prior to the Tonsilllectomy- she improved with steroids and abx. Steroids are the kicker for my kids. do you have a pandas doc who would see her quickly and rx steroids? don't they help your older kid (s)?

aealliance.org has just placed a slew of videos from the AE conference held at Duke this spring- on their blog. If you have time to watch them, or even skim, you may find some information that may be helpful. I have not watched them all, but the information contained could be very helpful for so many of our kids. just an idea....

Isnt broxil just another antibiotic, similar to penicillin? I assume you are in the Netherlands. What do they use to treat strep there? I think you need to find out what the typical dose for strep is and ask for that for a period of time and then prophylaxis sounds great How are her symptoms, since the culture was so long ago?

I sent you a pm!

Complement Profile c3/c4 ANA(anti nuclear antibodies) Antibodies - Sm, RNP, Ro, La Anti-Microsomal thyroid AN angiotension-Converting enzyme Anti-thyroglobulin Thyroid Anti-beta 2 glycoprotein 1 (IgG, IgM, IgA) Anti-Cardiolipin (IgG, IgM, IgA) Thyroid Profile Protein/Creatinine Ratio, Urine Von Willebrand antigen Lupus Anti-coagulant screen & reflex CMP Sed Rate C-Reactive Protein anti-dsDNA These found the underlying disorder for my daughter,(anti-phospholipid syndrome) which created a treatment plan that has brought her light years from where she was just one year ago. i hope you can find help from some of this information.

My daughter was treated with multiple abx, herbals, homeopathy, the works for close to a year before the PICC was placed. She was only 10/11 then. She is over 16 now. 5 years of her life lost, in ######. She now has only some OCD behavoirs and anxiety and a few tics. That is it. It is a miracle. She was room-bound, like your daughter. Did not speak, only screamed. Incontinent. raging. suicide attempts. self-harm (cutting legs, neck). We did try Riluzole, which, if I remember correctly- is similar to Namenda. I did think that offered some relief, though not enough for the severity and crisis situation at the point she tried it. I am really hopeful for you with the namenda! another thought, has she tried a tricyclic anti-depressant (clomiprmaine is one)? That, at very low doses (25mg) has also offered a bit of OCD relief for both my girls (i have another that was clear-cut PANDAS & she recovered after pex, steroids, ivig and intensive CBT). SSRI's made one daughter violent and worse- but clomipramine seems to be helpful. The treatment she recieves now (since aug 2013) is monthly IVIG 1g/kg, cellcept, clomipramine, plaquenil, aspirin, IV solumedrol monthly & a round of rituximab in April. We started seeing big changes by about 3-4 months of this new protocol. The only other time she recieved relief was after pex (twice) and after high dose steroids- though those improvements were much smaller and short-lived. The new team treating my daughter has found anti-cardiolipin antibodies and an undifferentiated connective tissue disorder (based on symptoms and postive RNP antibodies.) This quick and agressive treatment has made a world of difference. I am always concerned that people may focus on infection and be missing the autoimmune portion-(my personal soapbox!) and that is why I asked about the Hashimoto's.

Qannie asked about egg substitiutions: Here is a link to some substitutions: http://www.foodallergy.org/tools-and-resources/managing-food-allergies/cooking-and-baking? We used the third one listed- 1 1/2 TBSP Water, 1 1/2 TBSP Oil & 1 Tsp baking powder per egg-- It worked excellent and was very inexpensive. I have a daughter (not PANS) who had anaphylatic food allergy to egg and severe allergy to milk and peanuts. We practiced complete avoidance from age 18 months until approx age 8 or so. upon both retesting and food challenge she was normal. Now she has no restrictions at age 13. I am so glad you are finding some answers. It was also the egg white that created such dangerous reactions in my daughter- it usually is the white that is the offending allergen!

are you (the adult) being treated to? or is this your daughter? I would be alert for allergy, too- it can start kind of insidious.

My daughter did no better with IV abx, She had Rocephin for about 4 months. It was a PICC line in her left arm. She had Lyme and Babesia. In fact, she worsened dramatically during that time period. Hard to say it was the rocephin, but I was very suspicious. These antibiotics are powerful drugs and have the capacity to influence neurotransmitters. Considering that there is very little reliable testing to determine the offending neurotransmiiter(s) in PANS , nor to determine if an excess or lack of said neurotransmitter if the problem, I think this situation could be ripe for danger. My daughter became truly psychotic while using IV rocpehin- at about the 3 month mark. She did not recover from this psychosis, even remotely, until she was given high dose oral steroids 3-4 months later. That improvement was dramatic. as to your specific questions: PICC place in Oct/Nov 2009, IV rocpehin daily or maybe 5 x week, until end of feb/beg of March. Psychosis began mid- Feb. She did not recover until Dr L began oral steroids end of May 2010 (first time we saw her) Insurance paid for line placment and all meds/supplies for 30 days - all the cover for Lyme tx. After that we were on our own. The hospital system I am employed at has an employee discount- I was able to purchase rocpehin at cost. I found a homehealth care company, run by a friend of a friend, who provided me with supplies at cost. (I was lucky!) The changes must be done by a professional (at least an RN)- we were able to handle that ourselves and with assistance from a friend when we needed mutiple hands- but it was still a very expensive deal. I think the Rocephin would have been like $3K /month without my discount . the LLMD charged about $100 a week for the changes by her nurse, but I, thankfully, did not need that. How is she now? She is great- but not from the IV abx. She has her autoimmune disorder treated by a very aggressive and intensive team and is doing great- like 90%. Literally. I see you wrote she has hashimoto's-= has this been treated completely and ruled out as the cause of whatever symptoms she has now? I am not trying to add confusion to your decision on IV abx. I just want to share what happened to our child. The IV abx, at most, created a psychotic disorder, and at the least, did not help the disorder. Thorough, consistent and repetitive autoimmune treatment saved my daughter.

My daughter (5 @ the time) pans symtpoms improved dramatically after t&a. Her tonsils cultured positive for methicillin-resistant staph. Don't doubt that staph can cause symptoms! Sorry i did not answer your question, at all. Just wanted to mention about the staph/symptoms correlation.

I Third the rothman center recommendation.

Good article about stanford-- but those comments! Are they for real??

I do not think the ivig matters either way for the strep. Does he have tonsils still? Yes, this is nightmare for you guys. Did they culture the throat, too? Can you test siblings/family members? I hope he feels better soon.