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How long do exacerbations last?
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
Fortunately the steroid burst we finished over Christmas put him almost back to his old self so that memory is not too distant, and it was so good to see that yes, he's still in there. But yes, definitely hard to see it coming back and displacing your normal child with this mess of nerves you can't really help out. -
For us it means increased anxiety (more like panic) and uncontrolable OCD. His "baseline" at this point is mild OCD with frequent handwashing and some other stuff. At the beginning of an exacerbation we see: dilated pupils, the "caged animal" look, melting down over small stuff, asking tons of reasurance questions, scrupulosity, spending too much time in the bathroom, washing like a surgeon almost up to his elbows, not wanting to touch "contaminated" things with his hands, etc. All these things are there most of the time, but he can go about his day without problem. During an exacerbation, it becomes all consuming.
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How long do exacerbations last?
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
I guess that's were I feel we are losing this battle, in trying to have enough time during exacerbations. I did start keeping a journal and am writing things down to help see the ups and downs, and keep track of other things going on in the family. I tend to notice the downs more than the ups!!! I would have a hard time putting a number to how well he's doing, though, but I guess I could just list his typical symptoms and rate each daily to see how things correlate. -
New childhood vaccines schedules released
matis_mom replied to thereishope's topic in PANS / PANDAS (Lyme included)
I think for most of these, even if the child is in school, you can get a religious exemption. Also, I think they make the schedule thinking of the least educated people with the least access to health care. They want to get everyone in early and do as many shots as possible at the same time because they don't want to "miss" anyone. But, for my part, I don't think my little girls are at high-risk of sexually transmitted diseases or those associated with multiple partners, we can wait for that shot, thank you very much! -
Dd7 has impetigo - Pandas ds in exacerbation
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
Thanks all for the input and concern. They are running CBC, strep titers (he was going to do only ASO, I asked him to add AntiDNASE and Streptozyme, Sed Rate (I have no idea of the spelling, I think that's the one that checks for inflamation/possible RA?), and Lymes. The rash is a lot better, the one hip hurts when pressure is put on it, a slightly swollen lymph node on the neck, and she has headaches... Now we just have to wait for the lab results! The Dr. was very sympathetic and is trying to get this wrapped up before baby! Isabel -
Dd7 has impetigo - Pandas ds in exacerbation
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
I think the strep is probably more than just on the skin, because she has the tummy aches/joint pains, we'll see what the bloodwork shows. About the vaccine, are you taking about the hepatitis one they want to give newborns? It was already on the schedule when my last dd was born and I declined it. PANDAS or not I think it's nuts to give a day-old baby a vaccine, and I'm particularly cautious with the newer vaccines, since they have been not been used long enough to really now for sure if they are safe. I do vaccinate my kids, I just don't follow the schedule and I don't do multiple shots in one day. Now, if they had a strep vaccine, that would be something to consider! -
Dd7 has impetigo - Pandas ds in exacerbation
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
Thanks Susan! I'll ask for the titers, a CBC to make sure the standard stuff is normal, and maybe see if they'll do a stool test, as that is how we found ds's strep. He is the kind that does show elevated titers, so maybe she will too, but even if she doesn't it will give us a point of reference. -
How long do exacerbations last?
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
Thanks Buster, having a timeframe gives me some perspective. The kicker is since late October, we've been having someone sick in the house every four weeks for one reason or the other, in spite of all our efforts to erradicate strep! So at this rate the poor child will go from exacerbation to exacerbation... hopefully we'll figure out what's up with his sister and that will keep things under control. -
OK, so we did steroids, saw improvement, now he's going through an exacerbation. At this point I have to accept this as a part of life, at least until he gets IVIG, we can't live in a bubble... So, what do you do when your child is going through an exacerbation? DS12 is already on Augmentin 875 2xday. Should I add ibuprofen daily? Should I just wait it out? Will he get back to where he was before this just with the abxs?
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New to all of this and asking for help
matis_mom replied to lboll's topic in PANS / PANDAS (Lyme included)
Just a quick reply to this part of your post... If he is positive for strep, they should treat him, even if he has no symptoms! The titers are irrelevant, if he has strep, insist on antibiotics. At this point, I would take whatever the doctor is willing to prescribe and see what happens. Best of luck! Isabel -
Dd7 has impetigo - Pandas ds in exacerbation
matis_mom replied to matis_mom's topic in PANS / PANDAS (Lyme included)
Yeap, that's right! You can see how I'm getting a bit overwhelmed and frustrated here after having everyone plus the dog on antibiotics, only to have it come right back... And Matias was doing so well after a month of steroids too! So, we are going back to Dr. Latimer and see what the next step would be... It's kind of hard to accept we will be dealing with this beast for a long time. I am just hoping the pediatrician will be able to help us and we won't have to be driving all over the place and paying out of pocket for every single visit. Time and money are at a premium with a large family! -
I'll sum up the picture quickly... DD7 had stomach and joint pains (hip) last week. My PANDAS ds is a going through a very marked exacerbation, so I know there is something going on. Cultured for strep on Tuesday, negative. Rash on face over New Year's holiday, went back on Saturday, looked like Impetigo, and the prescription seems to be working. Tested for Strep again, negative. Dr. ordered x-ray of hips and took it serious. They called back saying x-rays were normal, so next step is bloodwork. So, what should they run??? I was thinking of asking for strep titers, but I don't know if that's enough to tell us much. She did have strep in Nov, did not clear on Amoxicilin, and then again in December, "seems" to have cleared it on Omnicef. I am saying "seems" because here we are, a couple of weeks after finishing the abxs, she has the tummy aches, joint pains, and impetigo, so there's definitely something funny here... I pray the pediatrician will be enlightened enough to know how to deal with this. I am having a baby in a couple of weeks and would so much like to have this thing under control! We are also seeing Dr. Latimer on Thursday and I'll ask her advice, it would be cool if I could have some lab results from dd7 to bring along. Any input/advice is greatly appreciated! Isabel
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All the best on the trip and I hope you have a very productive appointment! We are going to be there Thursday at 4:30 pm... Isabel
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Thanks Susan for posting that, I'll keep it in mind and consider it in my book as her third strep-related problem since November, yikes! Hopefully they will run her titers this week and maybe if they are elevated they will agree to treat her (I was just reading Dr. T's post, and my DS is definitely type 1, elevated titers)... Not that I'm hoping she has PANDAS, but rather I am hoping if we catch this early and treat the strep aggresively now she wont' get to that point! Isabel
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Thank you for posting this! Our ds12 definitely fits into type 1... Have you noticed any connection with the way the initial strep presents? Our son had stomach/GI issues, and joint swelling/pain off and on, never the typical "strep throat" symptoms, and now my dd7 is starting with the same kinds of symptoms (she did test + and was treated twice in the last two months, but currently cultures are negative, however, she has stomach aches and hip pain, plus a rash on her face that looks like impetigo)
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I read the info of the cream too quickly and I assumed it was just for staph, reading on it is used for other kinds of infections as well. So, I don't know if impetigo is considered strep or staph, but the cream is certainly making it better, it is MUPIROCIN (generic for Bactroban). The doctor did ask if we had noticed any other rashes and did a thorough check (stripped her down to her undies, which they don't usually do at this practice). My ds is on Augmentin 875 2xday.
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Well, just came back from the doctor. He thinks the face rash is impetigo (staph) and gave us a prescription for that. He took it seriously and checked her all out, I told her about "my son having and autoimmune problem with strep", and he actually said, "oh, does he have PANDAS?", so at least he understands what's going on and is willing to help. He did not want to give her an antibiotic at this point because he said he kind of wants to see how she does in the next few days. He wants x-rays of the hips, and to come back next week for a follow up and to do some blood work. He also had her swabbed again (even though they had done it just this past Tuesday). Rapid is negative and they are sending in for culture. So I am very happy they are taking this seriously. This is a younger doctor in the same practice and I think I'm going to try to go back to him from now on. If she still has the tummy aches and joint pains next week I will insist they do the stool sample on top of whatever blood work.
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Impulse Control? TIC? WTH is this?
matis_mom replied to tantrums's topic in PANS / PANDAS (Lyme included)
Well, avoidance and redirection can be used as coping skills too, so don't beat yourself up over it, you are doing what you can Maybe your son can replace the hitting with something like a nice patting and saying "you are such a good dog, I'll sure miss you!" Try to change his anxiety into compassion somehow. -
Impulse Control? TIC? WTH is this?
matis_mom replied to tantrums's topic in PANS / PANDAS (Lyme included)
Wow, that shows you how anxious he is about death! I suppose you could take this as a teaching moment to learn about the value of life, even for a dog, and how he should treat them well and help make their last days pleasant. I would avoid talking about the fact that he has not much longer to live, and focus on how good a pet he's been, how sweet and calm he is, etc. And I would go ahead and get the parrot now, to take the focus off the dog. If that doesn't work, another thing you might want to consider, if it's an option, is to have someone else take care of the dog for a while? Even though I am not much of an animal lover, I think is important FOR YOUR SON not to be allowed to mistreat the dog. I know if it's a compulsion he can't help it, so just removing the dog may be the best option, and it will show him that sometimes we need to separate ourselves from things we can't control. I think unfortunatelly for our PANDAS kids, OCD is something they are going to struggle with all their lives, so it's never to early to start teaching coping strategies. Hope the new parrot does it! Isabel -
Interesting that you mentioned staph, as it was something I was considering too. I put oil of oregano mixed with olive oil (too strong otherwise) and although it really bothered her at the beginning, it does seem to make it better. I use it on myself full strength when I feel a cold sore coming up, and if I do it a few times in a row, the sore never does come up, it's amazing. Oil of Oregano is supposed to be anti-viral, anti-bacterial, and anti-fungal, so I guess it works on sores because they are viral, it's just a form of herpes, which kind of gets activated if you will by cold and in my case sun (can't be in the sun around noon in summer!) Anyhow, as for the homeopathic, my son was given a combination remedy that is "Upper Respiratory - Staph/Strep" so I could try that with her (coincidentally, her lungs were not clear on Tuesday, even though she didn't have any coughs or anything). I will go to the pediatrician tomorrow and see what happens. If that doesn't go anywhere I will have to go to the dr. that diagnosed my son, but I really hesitate because of the cost...
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Thanks for the reply Smartyjones... It's good to know I'm not crazy Do you mind me asking what homeopathic remedy you use? I was thinking of trying oil of oregano on the rash, as it seems to do wonders when I'm getting cold sores, but I know she will also need something else to deal with whatever it is that is causing the other symptoms. I almost want to leave it alone so the Dr. will see it on Sat. I am glad I am not seeing any behavioral issues in dd7, but I have the feeling if I don't get on top of this it will be just a matter of time. Looking back at my PANDAS ds12, I can see his issues started way back, but the neurological effects where not felt until he was 11 (or maybe we just didn't notice). Up to then I was very laid back about things, and I figured most things would pass if left alone... Well, now I have a whole different take on life! It has been very, very cold and windy here, so maybe the rash could be attributed to that, but the joint pains and stomach aches are harder to just brush off. I'll write all this down and see the doctor on Sat, we'll see what brilliant non-explanation they come up with... sigh! She was on Amoxicillin on Nov, and Omnicef in December, so I'm not sure if the doctor will agree to give her any more abxs... Maybe we'll "get lucky" and the culture they did on Tuesday will reveal strep, and then things will be easier. That's my prayer these days, "If they do have it, God please let the tests show it so we can do something about it"
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Need any help and support I can get
matis_mom replied to mrigsby's topic in PANS / PANDAS (Lyme included)
We'll be praying for you... You are going an excellent job at keeping it together for so long! My advice is to find a doctor that works. It's hard enough to deal with the day-to-day stuff, you need a doctor who understands PANDAS, or at least is willing to look into it, and can relate the behaviors to a physical problem. We are here to help in whatever way we can! Isabel -
OK, maybe I'm stretching things here, but let me go over what's been going on this week... Sunday Pandas ds started going down-hill (5 days post steroids) Monday, still a basket case, dilated pupils, etc. Tuesday, took everyone in to re-check for strep since it's been two weeks from when we all finished antibiotics. Dd 7 (who had not cleared strep first round) had been complaining of stomach aches, and pain on hips. Everyone negative for the rapid, no news on culture. But dd7 was sent for chest x-ray because lungs did not sound clear. Have not heard back from that. Wednesday, dd7 has rash on face. Also pain under arm, maybe swollen limph node? Thursday, rash worse, and we noticed she is cutting some molars. Called the doctor but they were only working 1/2 day, will have to wait till Saturday. Friday, face looks pretty bad, and she has a tummy ache. So now I am worried dd7 might have intercellular strep and all the other symptoms are related to her teething. Or maybe she has impetigo or something? This is a little far-fetched and I now the look I'm going to get from the pediatrician. The hip-pain freaks me out (although it's gone now)... Still, I think deep inside the pediatrician feels guilty she totally missed my Pandas son's symptoms, so maybe I'll get more sympathy in trying to get to the bottom of this with dd7... So will some of you who been through this please chime in? I even remember someone writing their child also had canker sores (that's what her face looks like) around exacerbations. Luckily, DD7 is not showing any change in behaviors, but I think it's definitely affecting his brother (or, it could just be the typcial "saw-tooth" pattern after steroids for him?) Am I going crazy? Isabel