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dcmom
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Bump in the road...we had a relapse
dcmom replied to mom md's topic in PANS / PANDAS (Lyme included)
I think I have seen somewhere (on this forum?) that sedation can possibly affect the blood brain barrier? My dd had an exacerbation after T&A- this is one of my possible theories of what caused it. I am also fearful of an exacerbation after pex because of the sedation at the beginning of the process. Hopefully these episodes will be short term because only what antibodies are still hanging around have a chance to get to the brain- new ones are hopefully not being made. Mommd- I wonder if the nitrous oxide opened his bbb enough to cause an episode. I am sure there are still some antibodies hanging around after pex- hopefully this will be short lived, and he will continue on the road of healing. My dd has a dental appt in a few weeks. She hasn't been in a year (cancelled a few appts during exacerbations- couldn't imagine getting her there then). I will have them look for issues, maybe xray- but not touch at all unless really necessary. Keeping my fingers crossed there are no dental issues. EA mom- did you just double the abx dose the few days surrounding the dentist? -
shoring up the blood brain barrier
dcmom replied to bronxmom2's topic in PANS / PANDAS (Lyme included)
I agree Bronxmom 2! I am desperately trying to figure out what to do.... Are you going next week? PEX or IVIG? -
Bump in the road...we had a relapse
dcmom replied to mom md's topic in PANS / PANDAS (Lyme included)
MomMD- I am so sorry you are going through this. Since we are 1 day post pex, I am devastated by this news. Did you say he was on daily zith? What do you think the cause is? I mean stress would open the bbb- do you think 3 treatments are not enough pex to remove the antibodies (swedo did 5, I think)? or has he been making the auto antibodies? But then why 4 mos of success? Did you talk to Dr L? I was wondering what her thought was? Are you planning to try to get IVIG? My thoughts are with you, and how devastated I am sure you are Eileen -
Hi everyone- thanks for your well wishes! We came home from pex at Georgetown today and all is well. It was a long week, and I plan on posting a really detailed description of the whole process asap. We had our share of glitches- but no complications. It was a difficult week for our daughter, but I think she will get over it quickly. Hoping that we can continue the healing process, trying to figure out when to let her go back to school. I will post details in a day or so... Eileen
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Appt. with Dr. Latimer yesterday
dcmom replied to Stephanie2's topic in PANS / PANDAS (Lyme included)
I have been thinking about this topic a lot lately. I am sorry to those who have not gotten the follow up by Dr L that they hoped for. That is certainly frustrating. But, I think we need to remember, she is one of a handful of doctors trying to help pandas kids. She believes in it, she is compassionate, and as far as I know is the only doc in the country that can help you get IVIG or PEX, for many covered by insurance. I am sure she is sticking her neck out a little in doing this. I would hate for parents to start giving her flack, and her decide it is just not worth it. As PMom said, she is a mom of four who just lost her husband. She also, is a person, with a family. Unfortunately, it is not up to her to educate all the doctors in the country about pandas. She is certainly doing more than her part. She is pretty much all many of us have. And for the record, she has done really well by many of us. So for those who feel they have slipped through the cracks, I would suggest being persistant- yet kind. And if possible, book another in person appt- because I am sure you will get the results you want then. BTW, we were just at Georgetown, and they are extremely busy in the ICU- she certainly needs their buy in to continue to be able to get a bed there, so I am sure she has to jump through some hoops at her end as well.... Anyway, just my 2 cents. -
Immunologist Recommending Pneumovax
dcmom replied to mama2alex's topic in PANS / PANDAS (Lyme included)
nevergiveup- do you know what if any statistics there are about "normal healthy" kids failing the pneumococcal titers? I am under the impression the docs just don't know, and from that study regarding tylenol and vacs it seems like it could be high. Here is why I ask: dd has always been healthy, no ear infections, few colds, very few antibiotics until pandas hit this year. I had all of her immune numbers done- they are all perfect. The lab did not do the pneumococcal titers (they changed it to a test for mycoplasme pneumonia for some frustrating reason). I plan to have her tested at some point, but, would failing pneumococcal titers with no history of illness (other than pandas) mean anything? (I absolutely won't vaccinate!) Any thoughts? -
My daughter's experience on the steroids was very good, and I would/will try again. She did four weeks- 2 weeks treatment, 2 weeks tapering off. In 4 days all of her issues were gone- she has ocd! Unfortunately she was exposed to strep during the taper down- so she had an uptick of symptoms, but the rages didn't come back. We didn't have any side effects. I would stick with it...
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Mati's mom- welcome to our family (it really feels like one!) My heart sinks every time I see a new parent on this forum, although I know they have found the best place for help. I am sorry for what your son is going through. Dr Latimer is great, we see her. Hopefully she will be able to help. I know others will post- but it seems many here have had bad experiences with psych meds, so proceed cautiously. I am interested you said he had strep in the gut. What was the test for that? How does one treat that? Thanks.
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I agree with Vicki, try to perservere. It is so hard. When my dd (although younger) was having these issues, we set up a reward (we were seeing a psychologist). She only had to do a few things: dress (we lay out clothes night before), go potty, and be on time. If she did this, she got an immediate reward walking out the door. I had a big bag with a bunch of small wrapped gifts (a few dollars each) and she would pick one. It really worked when she was "close" like you say. Maybe you could set up a program like this. My psychologist thought the key was an immediate gift she could have that morning, and only a few clear requirements. Hang in there pixiesdaddy and mommy!! Think of how far you've come!
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Yes during exacerbation dd has pale skin and dark circles. Combine that with refusal to brush hair, and only willing to wear old non matching too small outfits, well you get the picture... I am sorry this is happening post pex- this is devastating. Was he/she on abx?
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EAmom- sorry if I have asked you this before- what do you do for probiotics?
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She did really well on 400mg/ week for a month (after being on 200mg/day for over a month- that was her treatment dose). Then she has a T&A and had a relapse, We kicked the relapse with steroids and upping the zith. When she came off of the steroids, she was exposed to strep and had another mini relapse. Last week she had a 24 hr stomach bug, and I definately saw an uptick in symptoms. We are doing pex in a couple days- and of course post-pex I don't want to mess anything up, so I imagine I will keep her on the daily zith as long as I can (meaning at least through the winter)- but I am anxious about so many abx. With your dd on daily zith- do you see her react at all if exposed to strep or when she has a cold, virus? thanks!
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So what type of dosing do you consider prophylactic? My dd is supposed to be on zith 2x week, 200mg each dose. I don't know if that is enough, and I have lots of rx so I am doing 200mg day for now. (she is 36lbs). I like the zithromax if we can get down to a few times per week, because I think it is easier on the tummy. I had this conversation with Dr T and infectious disease dr at Gtown, and they think it may be better for the gut to get zith 2x week, rather than something every day like amox.
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While I definately don't want to disagree with Buster I just have two things to add: If you research plasma exchange, there are actually three types. In one of those, the patient recieves some type of donor plasma product. When I discussed the possible use of pex or IVIG with and experienced pandas neurologist (Dr T) he told me when he has been involved they have done both (at the time that was like a punch in the stomach to me- for some reason). So, I don't think it is out of the question, and I wonder peglem if it would be worth exploring this option for your daughter considering how long she may have been dealing with pandas, in a pretty extreme way. We are doing pex, and I struggle with wanting to also do IVIG (but am holding off due to the donor exposure)- and dd has always been very healthy- so am not concerned with immunity issues. I guess I am now thinking of following the pex with strong antibiotic doses for an indeterminate amt of time. Buster, EAmom- I think your dd is on daily zith. Since IVIG, do you have any plans in the future of pulling back on that? If so can you elaborate.
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Wow. So if a child has a healthy history- she prefers pex. That would make me think if a child is sick frequently, they should get both. Are you happy with this? Can you add anything else? When will you be going in? Did you already have a consult with HemOnc at Georgetown? I think you have to do that first.
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I agree EAmom. Dr Triffileti told me he had a patient that was 21 (he had seen her since she was a child), and had a relapse after contracting strep. So, although we hope and hypothesize puberty means something, I am not so convinced. Which stinks!! I hate the thought of having to continue the antibiotics indefinately. But I know that pales in comparison to if they have another episode. Although I know everyone here doesn't aggree with everything in Saving Sammy. I am keeping two copies of the book. One for each daughter. When they are teens and young adults, they will listen more to something written in a book, than something I tell them, I am sure. I want them to know how debilitating (and fast) pandas can happen- so they remain vigilant. (only one is pandas, btw)
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p.o.p- Both of my daughter have/had a fear of automatic flush toilets The difference is in how they handle that fear. Non pandas dd (and pandas dd while not in an episode) will nervously use the potty with me there and jump off quickly. When pandas dd is in an episode she can not/will not get on that seat. She will have a full blown panic attack before that happens. (Your post made me smile remembering this:) Drove to Hilton Head this summer. On the way down, pandas dd was still in episode. Every bathroom stop caused huge anxiety and panic. While on vacation, she completed the steroid burst and came out of her episode (THAT was a real vacation). The way home, the bathroom caused only minor (if any) anxiety that is barely remembered. I think a lot of this stuff is in how reasonable their reaction is. I mean, I hate using public toilets- so I guess you could say it might bring up a bit of anxiety- but I deal with it. It is in these moments where the anxiety holds them hostage that we see the pandas. Does this make sense?
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Shelly, Thank you so much for sharing your daughter's story. I think, when they are doing well (for me anyway) it is easy to think this is in their past. I think it is a natural form of denial, and protecting one's self from so much constant worry. I think your story is so important for everyone to see, so that we know that even in the best times, pandas is still there, and we cannot let down our gaurd. Wishes for continued healing for your daughter (and family)!
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Oy! Let me know what she says. This is never ending. Gtown was supposed to test my dd's pneumococcal titers. Their lab (or Mayo) changed it to a test for Mycoplasma pneumonia. So I have been battling within myself whether to find some local immunologist and beg them to see her before pex on Monday. I decided I can't do that to her. I hope I can have them do it in the hospital.....
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DC children's hospital neurology?
dcmom replied to smartyjones's topic in PANS / PANDAS (Lyme included)
smarty jones- I really don't know about Children's. I did see an infectious disease doc there, he did not believe in the "pandas theory". I said that is ok- I am not here to debate that, but to learn about strep. He then read to me from the book (whatever that book doctors have- that by the was is bout 3 yrs old and needs to be updated). I could have done that myself. So, I really wouldn't bother with them. I know Dr L is expensive (well actually the going rate for specialists). The first visit is the most, subsequent visits are less than half that price. My insurance paid me quite a bit out of network, and her office submits. Unfortunately, many/most private practice specialists (heck even peds) don't take insurance in the immediate DC area. If you have the option, i would establish a relationship with latimer. The co pays for useless docs add up fast. And Georgetown takes insurance- so if you need to go for any procedures- you are covered there. I am still looking for an immunologist. So let me know if you find one of those... -
Our visit to Latimer, and Homeschooling questions.
dcmom replied to nojo's topic in PANS / PANDAS (Lyme included)
oh- and I do think of homeschooling, a lot. But dd loves school and needs the independent time from me. If illnesses get bad at school this winter, I will take her out for extended time though. -
Our visit to Latimer, and Homeschooling questions.
dcmom replied to nojo's topic in PANS / PANDAS (Lyme included)
Nojo- I am sorry you had a bad experience- but I have to chime in. I have found Dr Latimer, and her office staff to be unbelievably kind and helpful to me and my children, both when we are waiting and on the phone. I have actually thought (for a doctor's office) they are exceptional in this regard. The first time we were there, my daughter was nervous, and they asked her to feed the fish. Little things like that can be a huge help. As for the lab, I am not sure where you went- she doesn't have a lab. Possibly you were sent to an independent lab in the building like Labcorp. Those places always seem to be a marginal experience- but that is in no way under Dr. L's control. It must have just been an off day- don't let it discourage you.... -
I am curious, why did dr L prescribe IVIG as compared to PEX? When will you be at Gtown?
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New Possible Pandas dx in Knoxville need dr. help
dcmom replied to coco's topic in PANS / PANDAS (Lyme included)
Contact Diana via pandasnetwork, and Beth Maloney via Saving Sammy websites....