thereishope

For my son, it takes 1/2 hour to get in his system and it starts to wear off at the 5 hour mark. When he is on the verge of getting bad, I give it every 6 hours. When his symptoms are managaeble and minor (but there), I seem to be able to get away with giving him it once in the morning and maybe I'll give it once in the evening. Currently, he is not taking any and he is fine. If anyone else is intersted in dosing, I give my 43 pound son 200 mg (per doctor).

Thanks for posting the link.. I've actually been wondering how she's doing.

Imagine me....my son's first exacerbation was fear of germs, dirt, and contamination. Now with H1N1 and all the reminders about hygiene, I freak out it will bring things back for him. Every time he asks for hand sanitizer, I feel I have to ask him why he needs it. I know I'm over reacting, but his OCD w/ that was very bad last time. I buy foam soap for hands. It uses less soap per push. It's also a SpongeBob container and I find they are more apt to use it because of that. I breifly thought about paper towels for the bathroom but w/ 5 people, we'd go through that like crazy. I do save old, short yogurt cups and throw them in the dishwasher. Then every morning they grab one for their rinse and spit cup for brushing teeth. It's cheaper than disposable and the dishwasher sanitizes it.

It sounds like your child has a catch phrase too, huh? Mine did and I came across others that did too. My son had bad OCD. But you say the rage is better? My son's rage got better before the OCD got better so keep hopeful. Have you given Ibruprofen to see if that helps takes the edge off of the OCD? Also, Omega 3's are suppose to help with OCD as well.

I realized after I posted, it was steam cleaning you said, not carpet cleaning The directions for the bleach to water ratio is on every bottle of bleach. You can just look at that. I do suggest cleaning with gloves on. Also, I find myself switching out towels in the bathroom more....the ones that we put up to dry hands after washing.

I wouldn't clean the carpets or anything like that right now. I read that's real bad for kids and put tons of germs and bacteria into the air. Carpets have their own ecosystem. I think that cleaning carpets is sometimes associated with Kawasaki's. Someone said Dr Latimer said to do the bleach/water combo. I admit I do regular cleaners. Also, change bedding, sanitize stuffed animals they sleep with. If you are using a humidfier for the bay's pneumonia, make sure you sanitize that too.

Thanks for the update. hopefully you will all be well soon. Look at it this way, you're all sick, but you got the strong meds. How long did they write it out for? Did they do a strep test on the baby?

I was born in 1975, so I got all that stuff.

chap, Where do you live? I know you said overseas. I ask since there are others having a hard time finding docs overseas and if you found someone who "gets it" it would be great to post where you live.

When was that? Did you try calling the office?

My son improved on antibiotics only w/ the exception of a 5 days steroid burst during his second exacerbation. He was very bad off. There's a whole thread dedicated to those who did abs only. If you want me to pull it up, let me know. To give you an idea, my son's 3rd strep induced strep exacerbation was antibiotics only and took 5 months to get back to baseline. That included residual OCD we had to take of and the strep was detected very quickly. I would also give Omega 3's and DHA to help the brain as it heals. I continue to give it even though he is doing well now. Just be open with Dr Latimer. She'll understand.

If you've been treating the strep since July and have seen progress, I don't really see any harm in soley trying the Augmentin first if you are leary about the steroids. Honestly, if he's had strep for possibly 2+ years, it will probably take longer than 4 months to get back to baseline. Are you wanting to get IVIG? Did the naturopath give you a specific reason not to do the steroid besides that is may just be a bandaid? The reason I ask about the tics is because of the concern if there could be a "double diagnosis" of TS and PANDAS and the concern that a steroid could them worsen tics. I say voice your concerns to Dr L, ask if she ever considers doing IVIG w/o a steroid burst for comparison and take it from there. What is the naturopath's opinion about the IVIG? Personally, I would at least do the Augmentin.

Sorry. I know you've probably posted this, but I can't keep track of everyone.I have to refer back to my own journal entries to keep track of my own story. Does your son have tics? Have you tried Ibruprofen? If so, has it helped? Finally, how long has it been since you started treating the strep in the first place?

I don't really have much input on this one, but here is a thread that after a few posts, wandered off into unexplained fevers... http://www.latitudes.org/forums/index.php?...c=5742&st=0 The only other thing I can contribute is that otherPANDAS kids have had bad reactions on Singulair. What are the breathing treatments? A steroid?

This is what I wrote in my journal on Thanksgiving last year. Shortly into our second exacerbation... To end this, let me add that even though things still might not be fully back to normal and we have had a lot of hardships lately, I still have so many things to be thankful for. What I am most thankful for is my family. I am blessed to have all my family with me every day and that they are alive. That all issues that we do have will be resolved and healed. I am thankful for the patience and strength God have given each of us. Life is full of struggles. We have all experienced that. I also know that there are so many parents and families that would look at our situation with envy. Envy that we at least have our child and we can still hug and kiss him and hold him in our arms. Believe me. I know how blessed we are.

My son had his 5 year picture taken in the beginning of an exacerbation. Iwas never able to put up that photo or share it with family. It hurt too much. But he is well at the moment and I've found myself looking at that same 5 year picture now and then. Maybe as a reminder of what is was like and to ensure myself during questionable moments that it is not happening again and to remind myself what we have ovecome and to enjoy him as much as I can right now. I agree with the "calling". For me it is because I really don't know what our future may hold. I can not leave it up to others to map out our path. I don't know what it may be for our grandchildren who may also be afflicted with this disorder. I also cannot expect others to come to my need if I am not willing to be there for them. I know what it is like to go through this all alone. I didn't find you guys until the third storm began to settle. I feel such a sense of community when I stumble on another mom who has been living with this for years and is so happy to connect with someone who "gets it". Finally, I want to be able to proudly stand and prove to those who questioned us that PANDAS does exist, my son has this, my son did overcome. That part may be just spite, but that's part of me too:)

For people meds, Meijer offers some antibitics and even prenatal vitamins for free! No plans to pay into.Target and Kroger have $4 antibiotics too. You can call pharmacies for pricing prior to filling a script there. I've called around for "quotes" before.

All disorders, whether PANDAS, classic OCD, anxiety is a roller coaster. Just when you think you have it nipped, something pops back up as a reminder to stay on your toes. Celebrate when it only takes a minute to get him out of it. Do you keep a journal of when his tics or anxiety attacks seem to hit the most? I suggest you start doing it. Especially when it's ones that reasoning doesn't work or it takes more than 5 minutes. Things to note is if he had gotten enough sleep the night before, the reason for the increase (if known), has been under stress and could blood pressure have been raised,and note how else he behaviored throughout the day. Also, something very important to do is to note when he has symptoms of allerges, viruses, etc. How old is he again? When do remember was his last illness (not necessarily strep)? p.s. I went to pandasnetwork.org and I think they do have a link for the Yale Brown OCD test. You said you might ask the therapist about what OCD looks like. I'd look at the test first so you are more prepared for the questions. It might be under diagnostics.It also had a link for a tic test.

My son did not have tics, but he hit his head as a result of a sensory problem. If someone touched his head, kissed him, he took off a hat or hood...he'd start wih flattening his hair and spiral into hitting his own head. maybe someone had improevment w/in 48 hours (I think that was a recent post) but that is rare. Some will notice some improvement or a plateauing of symptoms w/in the first couple of weeks, some have said it took a month or more. And that's just for the beginning stages of recovery, not 100% back to themself. Get as long a script as you can and then you will may to eventually go to prophylactic dose to try to prevent future infections.

Others on here have said their child had/have joint pain. One said that their child said they felt hot inside. So that is not out of the ordinary.To me the clothing issue sounds sensory. The clothes that she does wear....does she need to wear the same ones over and over? do you notice she will only wear one color? how does she react when you mention she should try wearing socks today? Was that one of her first symptoms to surface? If so, that may be one of the last ones to go. How much of the clothing issue is part of the remaining 15% (you said she 85% back to herself).

I thought I would post a quick update on my son. He is 6 years old and in kindergarten. All of preschool last year, he was sick with PANDAS. 3 strep triggered exacerbations included the first one he ever had when we still didn't know the reason for the behavior changes.That teacher never really knew my real son. Anyway, I had my parent/teacher conference yesterday. He is doing great! His report was great too! The teacher and his slp were impressed with his neat, perfectly form writing, he is where he should be for numbers, sounding letter, recognizing letter, etc. Socially, he is making friends and he is even asking to have friends over to play! The slp said she is "tickled" with him. They both said he is a hard worker, listens and follow directions. He can move from task to task very easy. Easier than most of the other kindergarteners. He secretly wants to go to school ( I say secretly because he's one of those kids that would nver admit he likes school) and takes the school bus with never a fuss. I admit I was nervous going into the meeting, but I couldn't have asked that it go better. When I look at where he was a year ago compared to now...it is a miracle.

Actually, I don't know if amoxicillan in high dosing would do the job. I think the most success on ths forum has been Augmentin and Azithromycin (I may have spelled that wrong). Here is the link about why amox doesn't work sometimes... http://www.entrepreneur.com/tradejournals/.../169459644.html If your doctor is willing to give the stronger abs, I'd take advantage of it. Ask for the stronger ones first. Then if they are adament they won't give it, then ask for something else. I would leave amoxicllan and pencillan as the last resort. But I admit, I am not the antibiotic expert on here, so hopefully more will chime in. Is this her first experience with PANDAS? Has she had long term success with an antibiotic before? If so, which one?

Have you ever tried giving Ibruprofen? Some find that Ibruprofen takes down enough inflammation on the basal ganglia that they see some improvement or relief. It is not a diagnositic test for PANDAS, but it's something to try. Nor is PANDAS something to rule out if it doesn't work. Even if it does help, you need to continue to try to search out treatment and get to the root of the problem.

I can totally visualize the md saying that. I'm sure some head nodding action took place too likes he got what you were saying. Pandas, acne...yeah, they're in the same genre. I can see how she confused the two.Oh, boy. What do they do for mono or diagnose it? One girl I knew was out of school for a month but then 2 years ago, a neighbor teen was back to school in a week. What are his symptms? Fever and throat?

The psychiatrist told me that symptoms of OCD can surface as young a 6 months old but that child more than likely will not be diagnosed until a decade later. She said even simple things like needing to be held a lot and diffiuclty sleeping may be signs of early OCD in a baby. Or I guess I can add....PANDAS. she didn't say that but I am.