thereishope

It's hard with siblings. They also have to deal with alot since so much attention needs to be give to the PANDAS child and the parent becomes exhausted and depressed. When my son would have high anxiety, rages, etc, I made sure siblings left the room. I didn't want them to see him like that. Good news, as time passes and things settle, they probably won't remember. My older son just says his brother acts different if he has strep and that's fro him hearing me talk to my husband. But he doesn't even remember how. I did tell him that his PANDAS brother was sick, it was making his brain sick,and he couldn't stop what he was doing. That it wasn't his fault and that he would get better.

Yes, definitely give a probiotic,esp with long term antibiotics. Make sure you space them out between the antibiotic. meaning, give antibiotic at breakfast and dinner. Probiotic at lunch. Another probiotic mentioned on here a lot (if your child can take pills) is Pearl probiotics. Or you can try just giving Kefir (a drink kind of like a yogurt drink). Biaxin has been popular on here for Mycoplasma, but for strep related PANDAS, it seems like Augmentin and Zithromax are the most "popular". I don't know if I heard of any of these kids who have gotten a script for Biaxin "just" for strep.

Those who have gone to Augmentin XR, I believe, are on it long term and with a high dosing. Some insurances will not cover Augmentin XR, so that's something to think about and research I would think for 2-3 weeks, it's okay to stay on "regular" Augmentin. Have a discussion with Dr K ahead of time about what antibiotics he will be going on afterwards. If he stays on the Augmentin afterwards, try to get the script so he continues to take it 2x a day vs only one dose a day. Something else... maybe start a thread if people think he should actually do a steroid prior to IVIG anyway. I think I read once that some theorized that the IVIG may have better results following a steroid burst. But I can't clearly remember what was said.

Well, it could also be in part the 4 year olds:) I have a 3 1/2 year old. They know no boundaries, don't respect personal space and can push the buttons of older kids. One of my other kids is 9 years old and she can really get to him. I say ask for a refill of the augmentin and explain how you see improvement. I think he'll agree.

I understand why it was deleted and there are no ill feelings about it on my part. As for those who are new here or guests who are viewing this forum, these parents are fighters and sometimes we are so used to fighting for our kids that we have a very deep passion for this issue that is hard to contain. Luckily, we respect each other and, overall, we have the same goal. To get these kids better, prevent unnecessary suffering, and get PANDAS and PITAND recognized and accepted.

Thank you for the update! Glad to hear things are going well! When a child begins to recover, it takes awhile. You see setbacks, you see plateaus, but hopefully over time things will improve overall. There were times I would reread journal posts and realize my son had overcome issues that I forgot he had. So, how long was your script for Biaxin? Will you be going for another blood test to see if anything changed?

Rages were one of the first things to calm down for my son. The hitting was the very first, thank God.He shed different PANDAS symptoms at different times. Some went away simultaneously, some took turns. OCD the last. So, if you see some improvement, that's good. Honestly, after things are calm enough, you just may have to test him and spend a few hours at you home with everyone there and see how he copes.

In regards to the IEP eval...each district is different and , in my opinion, aren't always fair. In mine, you either have to be very bad off with a disorder or if you are "so, so" with having issues, it then comes into play what your other scores are. Yours went for an expressive speech eval. However, they probably tested motor skills, other speech skills, etc. If your child has an expressive speech disorder but it is not severe, the other high scores disqualify him from services. So, just because he doesn't qualify through the district doesn't mean he doesn't need therapy. If you feel he needs help and your insurance covers it or you can afford to pay it on your own, get him re-evaluated through the local children's hospital. I have one child with a severe speech disorder (not expressive) that has an IEP for it and receives services. I have another that could use speech therapy but it's not bad enough to qualify for services. My insurance doesn't cover speech, I can't afford speech, so he isn't getting help. It's not bad and I hope over time he will teach himself the correct way with me guiding him. He outgrew some other speech problems so hopefully, the remaining will follow. As for just right OCD, oh boy I can write loads about that. That was also one of his residual OCD habits that we really had to work at. I will reread your post later and see if I can provide some suggestions. My son had a lot of OCD.

I want to add that I am not saying I am "anti vaccine". To be honest, I don't know what my feelings are about vaccines, in general. I know some are needed, but I know some may do more harm than good. I know vaccines seem to be getting out control. I have not had to vaccinate any of my kids since PANDAS entered our life. When the time comes, I will have a lot of soul searching to do.

I have heard of kids experiencing floaters, but not sure about the vision being totally blurred. If you are concerned and want to see if his vision is okay, you could take him to an opthamologist. That the kind of eye doctor I went to when antibiotics affected my vision (tertracycline). As for his sinuses, if you think it's a sinus infection, get that checked out. That may make his symptoms worse. Could it be allergies? My son takes Benadryl for his spring allergies. He gets kind of tired on the first day, but then quickly adapts and is fine. Never complained about blurred vision from it.

About Ibuprofen (IB), it's like a band aid. For some, it eases the PANDAS. However, if your child does not get improvement from IB, it does not rule out PANDAS. When my son was recovering from a strep triggered exacerbation, IB didn't work. But it does work for other triggers, like viral. For him, it took 1/2 hour to kick in and strated wearing off at the 5 hour mark. It is recommended by doctors that if you are taking a steroid, not to take IB at the same time. It can take a toll on the stomach. If Ibuprofen works, continue to look for the root cause of the problems. It is just a temp band aid. IB does not replace antibiotics.

When my son was very early on in recovery, we did a 5 hour drive to Chicago for a bday party. I was hesitant to go, but we did. It involved the drive and staying overnight at someone's house. Boy, did that stress send him over the edge. It took a couple days for him to get over it. So, yes, stress can make things worse, esp when they are early in recovery. This disorder is so cruel. it takes our kids in a heartbeat and we have to spend months (for some, years) getting them back.

What are the other ingredients in the probiotic? If there's food coloring, does your child react to it?

Did they send a sample out to culture? My family has had negative rapids, just to have the culture come back +. Always remember... First the rapid. If that is negative, then culture. If the culture is neg, then blood tests. Unfortunatley, a lot of kids on here do not respond to penicillin. However, there are some who do. So if it's worked for your child before, you can try it. That's up to you. Here is an article that you may have be given before. Hopefully, if the pen is going to work, you will see some improvement within a few days. Not full improvement, but something. It is a long recovery. If you see improvement, I suggest communicating that with your doctor. http://www.entrepreneur.com/tradejournals/.../169459644.html What you also need to remember is that strep can exist in other places than the throat. Strep in the sinuses, ears, gut, vaginal, anal, strep on the skin. Also, in subsequent exacerbations, even something viral or allergies can cause PANDAS symptoms to ramp up. Then you start to look more outside the box. Has anyone else in the family been sick? You can test family members. Some PANDAS kids react to EXPOSURE. It's good to know these things as they help you keep your sanity when you thought for sure that strep test was going to be positive. --><div class='quotetop'>QUOTE(Amy B @ Mar 12 2010, 02:34 AM) 59574[/snapback]</div><div class='quotemain'><!--quotec-->Thanks you really got me thinking. It would be great for the nonreactive kids because it would decrease the spreading. Not such a great idea for the pandas kids. I've been trying to think outside the box. It's a very small box.lol. We went to pediatrician tonight. The rapid was neg. as always. She did give him abx, penicillian 10 days. I am very lucky to get that. They do not like to prescribe any antibiotics with out a positive. I'm just afraid its not strong enough and this illness might be a bad one. He has already started the eyes and mouth and some noisy tics. My dh is freaking out again. What do you think about the penicillan? They will not give out augmentin or azithro. They want to save those for when he's really sick. I did get ammmox a few months ago. I do think it helped. Thanks.

Here it is.. http://www.latitudes.org/forums/index.php?...c=7170&st=0 The whole discussion about PANDAS/PITAND symptoms worsening was more towards the end of the thread. A few on here have said they've experienced it. Are you giving him probiotics too? How's his stomach? How was he on the first 5 days?

Son of a gun. Don't trust me in polls. I checked off my boxes and hit "see results". That's a null vote and you can't revote. I've done that before. Will I ever learn my lesson? Diagnosed 1 1/2 years ago Abx, steroid burst, natural supplements Local docs

I'll add, not sure if it helps, that my non-PANDAS son was given 5 days of Zith, I was told to expect a cough up to 2 weeks after finishing it. He seems okay now. Also, "regular" non-PANDAS people could rid themselves of Myco P over a period of time without antibiotics. A lot of people never realize the have it, hence why it is called walking pneumonia. So, even if your daugher could have killed it off herself, she still has those pesky antibodies that need to lower over time and that quote above said the antibodies can remain elevated for a long time.

I don't know when they are switching back. I believe Gat's Mom was one of the others that switched from Zith. I'm not sure how long ago that was. JAG, did you guys do a steroid burst too? I'm sorry she is backsliding. I want to say it's from die off, but then how would you explain the initial improvement. I hate how much of this is a guessing game. It's just not right.

Well, with my son he had a cough, the doc listened to his chest and just matter of factly said "mycoplasma". He said that we probably noticed the cough was different. Well, no we didn't notice the cough sounded any different. To us, it sounded like a cough.We weren't even concerned about the cough. I think others on here have gotten a blood test to determine if they have/had Myco P. But then it gets confusing because one level rises during the first infection, but if you get it again, it may not rise. Here's quote about that... I haven't gone done the blood test route so I don't really have a lot of info on that.

Here you go.. http://www.latitudes.org/forums/index.php?...ic=7255&hl= I tried to be careful how I worded it. So it looks like 3 kids were on Zith, found out they had Myco P, switched to Biaxin then saw improvement. With my non-PANDAS son, I thought the cough was a result of allergies since my PANDAS son had a sinus infection from what the ped believed came from allergies. I brought my non-PANDAs son for a strep test since he was exposed and instead left witha script for Myco P. If by any chance it is Myco P, it was said on here a steroid could worsen it. So, it is worth ruling it out before a possible burst.

Let me find the link to the poll I did. You may be surprised how many switched from Azith after being dx with Myco P then saw improvement.

EAMom...that cough....have you outright asked the ped if it could be Mycoplasma? For my non-PANDAS son that was his only symptom and they did a clinical dx of Mycoplasma. If by any chance that's what she had, a change in antibiotics, like Biaxin, might help. Granted, I don't live anywhere near you, but my ped did say that he's seeing a lot of it. Then he started to mumble something about because of H1N1 and a very bad allergy year. The school did have a lot of coughing cases and mycoplasma is contagious.

The 2 most popular antibiotics that work on here seem to to Augmentin and Zithromax. However, some have cited that Omnicef and even Keflex have been the mosts successful in their children. Sadly, it is a lot of trial and error and not every child is the same. If he's been on Augementin for a bit and you still don't see improvement, I'd probably try to change abx. Here is one study that may help you to convince your doctor.. Meta-analysis of Cephalosporin Versus Penicillin Treatment of Group A Streptococcal Tonsillopharyngitis in Children http://pediatrics.aappublications.org/cgi/...tract/113/4/866 One of people who did this study was the same author as that popular article about the amox and pen failure rate with strep... http://www.entrepreneur.com/tradejournals/.../169459644.html

I like the change too. It will help parents looking for PANDAS info realize why there is so much talk about things like Mycoplasma and realize they can ask a variety of questions. For those who do not know what PITAND stands for... Pediatric Infection-triggered Autoimmune Neuropsychiatric Disorders Would I be correct to say that PANDAS is a subset of PITAND?

There is one hospital in the UK that I believe has done some PANDAS research. On Ormand Street? That does that ring a bell?