matis_mom

In order for my insurance bcbs to cover the infussions It has to be done in NJ Im going to have to wait now untill next week .The holidays have really messed things up for us .I think we have found another company to supply the service but I am interested in the inusion companys name Thanks everyone ill keep you posted I know this will end soon I guess God wants us to wait just a little longer. Melanie and Danny I was just going to say, when things get messed up like that it is usually because it's not meant to be... all in God's perfect timing. Isabel

Thanks all for the replies... All children tested negative for strep yesterday, but we are waiting for the culture. The 2-yo definitely has a stomach bug (maybe just a coincidence), so he might just be reacting to that. The 7-yo, who had stomach aches and joint pains, was sent for x-rays since her lungs did not sound clear... the doctor wasn't sure what to make of it, but at least she checking it out. Hopefully by tomorrow we'll get the culture and the x-rays back. I definitely think it was the steroids that made the difference, not just the different antibiotics (he has been on abxs since July). It took a couple of weeks for him to even start showing any improvement, but then slowly started shedding the OCD to the point where he was I would say 90 to 95% better. Five days after last dose, he was suddenly almost in a full-blown exacerbation (not just OCD coming back, but emotionally distressed about it, swollen eyes, dilated pupils, etc), that's why I thought for sure we had strep in the house again. We did have out of town visitors that day, so maybe they had it? I was good to see him "back to normal" (or pretty much there), it gives me hope to see he can better, even if it doesn't "stick." Dr. Latimer did say this was more just like a way to see if he would be a good candidate for IVIG, I was just hoping he did not need to go that way. I am more and more resigned to the fact that he will need further treatment. We are trying to use so CBT to make this a little easier, but he really does not seem to be able to help himself right now. Maybe this will all just ease-off in a few days... I'll keep you posted, Isabel

Faith, It was gradual but definite improvement. By the last week he was I would say 95% better! He finished on Monday of last week, and I started noticing things creeping back up again on Sunday. He is on Augmentin 875 2xday, plus Vancomycin. We are definitely keeping up the antibiotics. We'll see Dr. Latimer in about 10 days, and I hope to get everyone checked out to see if we have strep going around (again!), since this flare up reminds me very much of what he was like in early Nov. when his sister had strep. Tonight he kept coming out of his bedroom to ask if this or that was OK (mostly germ-related, but also asking me to make sure all the lights were turned off, etc.) and he was very anxious, almost crying, over these things. I had to stay tough and not answer (well, for the most part) and just kept sending him back to bed. It breaks my heart, to think a few days ago he was so happy and easy going, and now the weight of the world is back on his shoulders! I guess only other PANDAS parents can understand this sudden changes, you got to see it to believe it. But is it, as usual, at lot worse at bedtime, I wonder if other people have had the same experience. I did give him 1 ibuprofen in the am and he did OK during the day, and then a couple more after dinner, because I could see it coming, but it did not seem to help at all (or maybe it would have been a lot worse without it?)

So discouraging... Ds is already sliding back! He finished a 30-day steroid burst last Monday. He was great through Christmas. Sunday he did not look too good. Sunday evening he started with the questions and had a hard time getting to bed. Nearly lost it when his brother dropped the bath towel on the floor, and then brought his laundry to the laundry room by picking it up with his foot (he was doing that a a while back, would not use his hands to touch anything he deemed "contaminated") Today he has been asking tons of reasurance questions, spending lots of time in the bathroom, talking to himself, and checking things over and over. I guess it's good to confirm the diagnosis and know there is definitely inflamation causing problems, but I was so hoping this would just close the BBB and it would stay closed at least for a bit longer! Maybe there is something else contributing too. Dd7, the one that did not cleared strep in November has been complaining of stomach ache and pain in her hip. It's been about two weeks since we finished abxs. I am taking everyone in tomorrow to have them checked. Good thing the pediatrician is already on board, at least as far as checking everyone and trying to clear any carriers. I'm scared to death to think dd-7 may be going the same route my PANDAS ds12 started. At least now we know what we are dealing with... sigh!

Lack of sleep will make everyone (including Mom) cranky! I don't know about the supplements you mentioned, but an easy thing to try is potatoes... yes, POTATOES. Eating a potato (or probably just 1/4 of one for your son) before bed (ideally about 3 hours after dinner) helps you get a good-night sleep. You are supposed to eat it with the skin, and you can add butter and salt, but no cheese or anything with protein in it. The idea is that by eating a complex carb before bed, it will create a natural "sugar low" in the middle of the night and let you get into deep, restful sleep. It also helps increase serotonin. If you want you can check out the book "Potatoes, not Prozac" (most libraries have it) which explains this a lot better. But it anything, it can't hurt! If your son is not napping and not sleeping well at night, he's going to be bad tempered no matter what. And it is so hard to deal with a cranky child when you haven't had any sleep yourself! Another thing to try is Epsom Salt baths, magnesium is great for relaxing and it is best absorbed through the skin. Maybe a good relaxing bath before bed will help. Someone posted this link about it not too long ago. http://www.care2.com/greenliving/health-be...alt-baths.html# Hope everyone sleeps well tonight...

I am so thankful for all the help and encouragement in this forum, particularly when I was hesitant to try steroids. Time will tell whether we need another round of steroids or IVIG, but we are very thankful for the progress we've seen, and to be working with a good doctor who understands the autoimmune nature of this disorder. And after hearing other families' experiences, the idea of IVIG does not seem so scary any more. Another thing you all have taught me is that there is no straight path, and I have to be prepared for setbacks and/or repeated treatment, but I am very encouraged to see he has responded. I keep asking him how he's feeling and he says "good!", and then I point out all the progress he's made. Hopefully this will help if he slides back, at least he'll know he can get on top of things again. Isabel

Hi all, I hope everyone had a very merry Christmas! I had a little down time today so I was organizing DS's "Health" Binder (pages and pages of labs, prescriptions, etc), and writing down how he's been. To my surprise, I came up with a long list of improvements we've seen while he was on steroids. * Improved concentration * Getting his school work done quicker * Spending less time on the toilet * Washing a lot quicker * Eczema on hands greatly improved * "Loud Whispering to Self" (I don't know what to call it, he tries to reassure himself as he washes) greatly decreased * Going to bed a lot quicker/not coming back up with reasurance questions as often * Able to accept no response and even laugh when he asks a reasurance question and we refuse to answer * Spending lots more time outside * Playing with dog without problem * Changing clothes/underwear less often * Reduced bedwetting (although this seems to be creeping back up again) * Decreased overall anxiety He finished the 4-week course this past Tuesday, and had a headache on Wednesday. He has been doing fine these last few days, very animated, playing lots with brothers and sisters (he's getting a bit annoying, but that what he was like before this whole PANDAS thing started ) I do hope and pray he maintains all this progress as his own immune system takes over! We are seeing Dr. Latimer Jan. 7, and we'll take it from there. If anything we know the steroids/Augmentin did work. We also managed to get everyone in the family treated in December, so that is probably another contributing factor. I wanted to share this good news with you all, and maybe others can chime in with their own successes. It seems we all tend to write more when things are not going well, but we can all use a little holiday cheer! God bless, Isabel

Debbie, We had a good experience at the CVS Minute Clinic... do you have anything like that around? I guess it just depends who you get, but they were very accomodating when my husband took my two daugthers in. Other than that, do you have any MD friends or relatives? As far as abx choices, we were all put on Omnicef, and it seemed to do the trick. Hope things go well with the T&A! I am assuming your child is already on some strong abx, right? Isabel

I understand people's frustration, but looking at it from another angle, think of all the parents out there who are desperate for a Dr. who can help them out... sometimes a delayed consultation or even getting the run-around is better than being told "Sorry, the doctor is not taking new patients at this point." So I would say, especially for those who are not in the area, keep looking for a good local doctor that can manage the day to day stuff, and then try to get in with Dr. Latimer.

Dear Dr. T. Wow, I don't know how you can manage it all! I hope and pray you will soon be able to find some help so you can give 100% of your time to patients. There are so few doctors both capable and willing to deal with this thing, we need you to stay healthy! I do appreciate the fact that you are willing to see people no matter what, especially in these tough times. May God bless your work. Merry Christmas! Isabel

Thanks Vicky, I did not think of tying the vision to the headaches...duh! I did give him a couple of Advil before dinner, and the headache got better. Tomorrow I'll just have him keep his glasses on all day and see how he does. He says he is not dizzy, it's just he's naturally compensating. Before he had one eye stronger than the other so they prescribed the glasses for watching TV, etc, maybe an hour or two a day just to give the good eye a rest, but now it seems he really has to strain to focus. I will have to take him back to the optometrist and have them measure again, and compare from where he was this summer... just another appointment, another expense. But it would be best to have it figured out before we go for our follow-up with Dr. Latimer, particularly to see where the headaches are coming from.

I think it is awful nice of your SIL to give you the heads up and be willing to put other kids on abx. It is a tough decision, but in my case I would go. It seems your SIL is on the ball and hopefully she will have disinfected bathrooms, etc. How old are your kids? The trick is with little ones who grab just any cup at all and start drinking, or cousins sharing cookies, etc. So that would be my biggest worry, the toddlers who have no clue what germs are all about. Older kids usually understand, my problem is my PANDAS ds's anxiety focuses on germs and contamination, so in a situation like that I feel I would totally be "feeding the monster" if I tell him to wash often/be careful. How's the rest of the extended family at understanding your problem and helping keep things under control? Hope you and your husband can make a decision soon and have a peaceful Christmas! Isabel

Ds 12 just finished the 30-day course of steroids. Overall he has improved with some ups and downs, but overall I think I see improvement... We finished yesterday and today he has been complaining of headaches. So my questions are: 1) Is this normal (swelling coming back?) 2) Is it OK to give him ibuprofen? I wanted to wait a week to give him a chance to clear all the prednisone out of his system, but today he was complaining over and over, which is very unlike him. Also, this may be totally unrelated, but he has been squinting a lot. He is near-sighted and got glasses over the summer, just to rest his eyes maybe an hour or two a day, but now it seems since last week he is squinting all the time, like his eyesight is suddenly going downhill. I wonder if it has anything to do with the meds/PANDAS. Thanks!

Thanks for the reply Kim. I am currently giving it to him as part of a product called "Gastrothera" from ProThera, which is a reputable company. My thinking is his gut is probably a mess, he has some food sensitivities he did not have before, and constipation/diahrrea off and on. So along with probiotics, I am giving him this supplement that is designed for leaky gut. So far he seems to be doing well on it, and his stomach/bathroom issues are better too (well, that may have to do with other things). Isabel

Did they try the numbing spray? It's makes the area really cold and it helps my son a ton. Also, don't let the child look at the needle, stand by him and have him keep looking at you. And the silliest thing, it turns out my son did not mind the needle as much as the rubber band... He actually had the composure to ask the nurse not to use it, and she obliged... They took 17 little tubes of blood of out the one arm that day!!! And this is someone who had been sick for months and the ped kept coming up with different possible explanations trying to avoid doing a draw because he was so traumatized the first time they tried! Of course, he's older (12) and I can explain to him the need for it. I don't know what it would have been like at 5! I know it's hard, but you got to do what you've got to do. Living with PANDAS is a lot worse

So... how much NAG do you give??? I am currently giving my ds "Gastrothera" (from ProThera, Inc.), which is supposed to help heal the gut (I suspect he has a bit of a leaky gut). NAG is one of the main ingredients, I wonder how much is needed to make a difference in the immune system... Isabel

Well, even with the flash, the difference between the two is noticeable. It's obvious the child in the first picture is not reacting to the flash nearly as much as the second one. All variables being the same (flash, distance from camera, time of day, etc), you can tell the PANDAS child's pupils are much bigger than the other one. My son gets not only the dilated pupils but his eyes look kind of puffy overall, and when they look at you it's like they are actually looking behind you, hard to explain, I guess is what some people call the one-mile (or is it 7-mile?) stare...

Wow, ladies, that's tough. I keep thanking God my son is staying sweet and cooperative, I can't imagine what you are going through. The only thought I have is to borrow some CBT techniques and try to keep things in perspective. Maybe take a nice picture of yourselves hugging your sweet child in a good day, and keep it somewhere prominent to remind you THAT is your child, and not what you are dealing with at the moment. Also, when your child is NOT having a PANDAS moments, talk about the irrational things that go on, and have him agree that does not make sense. Then when they are wacky you can say, "This does not make sense, and I am not going to engage" The child might go on with whatever, but at least you are not getting dragged down into the mud, and you don't have to feel bad, because it's OCD/rages you are saying NO to. It is very hard but somehow try to find a way to cope with this and limit the impact on the rest of the family. You can't really help your child if you let him/her get you out of control.

Tantrums, We've had no adverse issues with steroids. Dr Latimer said while they do make some kids hyper, that is usually not the case for PANDAS kids, it tends to settle things down. So at this point, if you are already seeing the irrational/raging behavior, I would give them a try and see if they slow things down. Of course, all this assuming antibiotics are already in use.

Debbie, I would definitely get that child checked out! That is exactly how my son started... stomach aches here and there, joint swelling and pain off and on, feeling tired all the time. Then we started noticing difficulty concentrating, emotional instability, compulsive hand-washing, anxiety/OCD, asking reasurance questions over and over. It's hard to know exactly because we did not notice all this things at once, but these are signs to look for. Maybe you can start keeping a journal. If you do go to the GI, insist that they do a stool sample and check for strep in the stool. It's so frustrating! My son had a wrist that would just swell up noticeably and then go down, off and on... One ped sent us for an x-ray, no explanation. Another said, "Oh, kids just get that" Uh? How lame is that?! Anyway, hope you find help soon, and I don't know if you already have, but do test everyone in the household for strep, especially if you see behaviors escalating. Isabel

My thoughts are similar to what everyone else has said... 1) ADHD symptoms will get better in time. Just try to find coping mechanisms for now and avoid psychiatric drugs! 2) You may have re-tested too soon after that course of antibiotics, take her back now and have them do the rapid and the culture 3) Check all family members for strep 4) Start keeping a journal of behaviors/health (including other people in the family). Being able to tie things together may help with diagnosis 5) Get over the blood-draw thing... I know it's hard, but it only takes 10 minutes. Just think of all child and your whole family is going through because of this. I think my son's issues would have been caught a lot earlier if he had not been so afraid of needles! Months before he was diagnosed, the pediatrician order a Lymes test and a CBC, but the nurse only took one sample... Oh, my goodness! It was so traumatic that when I brought up the fact that the CBC wasn't done, the doctor said not to worry and we never did it... Now he still hates it, but with the numbing spray (I don't know what is called, it just makes it really cold) he is OK. Hope this helps and your doctor gets the picture! Oh, and one more thought... how come docs are so ready to try psychiatric drugs for ADHD, yet so hesitant to give antibiotics??? You could always present it this way. Could they just give you 30 days on a strong antibiotic and take it from there?

My ds is 80lbs and taking Augmentin 875 twice daily (per Dr. Latimer)... it seems to me you probably need a higher dose than what your doctor is recommending.

Melanie, My ds has a very hard time concentrating while he is going through exacerbation, their brain is just not responding, there's not a lot they can do, and stressing them out only makes things worse. At the young age of 9, I don't think it's a big deal if she misses a week of school or doesn't turn in all her homework, for crying out loud, the child is sick! But if she is somewhat able and you can help her, how about she tells you what to right and you do the actual writing? Or she could dictate into a tape and the teacher can listen to it. I think if you show she is putting forth her best effort they will understand. Math becomes really hard, and sometimes you just have to give up on that, or break it up into smaller segments. Again, doing the actual writing for them is very helpful. We homeschool so I have the option of just calling the day off when things are bad and we catch up later. Just now that this will get better and try to keep things in perspective. Isabel

Melanie, First, don't be discouraged... this is just one of the ups and downs of this disease. We were very discouraged the first time our ds had an exacerbation after being on abxs for months, all of a sudden he had that panic/dear in the headlights look and kept asking all these reasurance questions... a few days later we discovered his sister had strep... So, I would suggest two things: 1) make sure there isn't someone with strep around him (my son did not "catch" strep, but the exposure was enough to rev-up his immune system), 2) try some ibuprofen and see how he does.

Count your blessings! To have an immunologist AND your pediatrician on board, that is awesome! Hopefully your son will see quick improvement on the antibiotics. Once all your tests are back, then you can panic, but for now, I would just be patient and see how he does. Also remember to test other family members...just in case Isabel