thereishope

What's going on that would give us answers by 2026?

I was thinking...for those who have done the Cunningham test then found out later that Mycroplasma was involved, are you contacting her with follow up info? I know in the past she has requested that those who did her test to follow up how they are doing.

I need reread her bio. I believe she has had an interest in strep, not necessarily always focusing on PANDAS but also SC. But I'm not saying all her results would only pertain to strep. As for PANDAS vs PITAND, I think right now they are being used almost interchangeably. I would think PANDAS is a subgroup of PITANDS, but PANDAS got more known now due to Swedo concentrating on that. Again, I can look up the history Buster posted in the pinned thread. There is the whole debate if the whole thing should just get renamed to PAND, but who knows what will happen. Perhaps she has not focused on strep, but the acronym PANDAS really focuse on strep, and that is what most people hear. I think this is making it difficult for general docs to think of the PANDAS/PITAND coninuum. Why do we not include PITAND when we talk about PANDAS?

When they did have strep, do you recall what antibiotic they were usually prescribed and if their symptoms seemed better when on it? When was the last time they went for a strep test and how would you characterize their symptoms now? Are they mild, do they affect the way they function? Have you, or other family mebers been tested for strep? I have to throw one more thing out there since it's been talked about a lot on this board lately...did they ever have Mycroplasma Pneumonia aka walking pneumonia to your knowledge?

Do you think you have it in you to totally revamp your diet? Pixiesmommy did that and I belive she said her and Pixie's butterfly rashes went away! Be careful with a dx of lupus, if she should get one. In my personal experience unfortunately, sometimes docs hand out a dx of lupus when they don't know what else it could be.

I don't think it was ever said that her findings were unique to strep. I believe what she has studied over the last years focused on strep. Am I right with this? Also, because this is PANDAS forum and for a long time dealt with strep was the main trigger perhaps some inferred it was strep only? But I don't think that was actually ever said.

Yes, a child can still contract strep while amoxicillan. Also, it can be that the amox never erradicated the infection in the first place. If you get another strep test and the child is on any antibiotics, you can get a FALSE NEGATIVE. So remind your doctor of this possibility. That is also the case up to 3 weeks after finishing meds. So follow up tests should be done 3 weeks after finishing meds. Also, make sure family members are checked for strep in hopes of preventing reinfection. Some PANDAS kids will react to exposure only as well. Here's an article about the failure rate of amox and strep... http://www.entrepreneur.com/tradejournals/.../169459644.html LLM, my son had a sinus infection he was given amox for. Like yours, it didn't help. It took 2 rounds of Augmentin (first script for 14 days, second for 20) to rid him of it. He was also given Flonase to take down the swelling with the second script. If your child has allergies (specficially dust mites which are bad right now) that can be causing the sinus infection. Also, some moms have told me that you need at least 20 days of an antibiotic to rid a sinus infection because the blood flow is slow to get to the area.

I am so happy Buster did a fact page and a faq page! From Buster's FAQ page... Further explanation follows on the page. http://www.latitudes.org/forums/index.php?showtopic=6266

I'm so happy he's home. He may have a roller coaster of emotions over the next few days. He's been through a lot. Please keep us updated.

How did you know it was affecting his gut?What symptoms should others look out for? My ds16 was on 7 days of Biaxin 500mg twice daily. This came immediately on the heels of a couple weeks of Azith and 16 days of Augmentin 1000mg XR twice daily. We had to abandon the Biaxin on 2/18. His stomach was a train wreck. Dr. T. promptly called in Biaxin XL at the same dose which is supposed to be easier on the gut buy my son, who has never refused medicine, absolutely refuses to take it. I can tell you that while we were taking it, we started to see good changes in all areas where he struggles by the 3rd day. I was so happy about that but his gut continued to deteriorate. One thing I can also share is that we did see a cough develop that really freaked my son out. It didn't happen after all doses, but it did happen after some and would last about an hour. You may not see that in the IgG positive kids, my son was positive for IgM & IgG. We've now had to drop back to plan B, treating with all naturals addressing myco p as well as gut & brain inflammation, immune support & sleep support. The 7 days of biaxin did help though and he is continuing to make slow progress using the all natural route. I'm hopeful as he improves he will consent to 10 more days on Biaxin XL. Our short time on the biaxin was the ONLY time we have ever seen a positive result come that fast. Hope that helps, Gat's mom

How are your children's PANDAS symptoms? This is just my opinion, if their symptoms are in check, I would think you do not need to test. It seems like most who are finding out their children have Mycroplasma are those who are not seeing improvement or could not figure out why PANDAS surfaced in the first place since strep was not the culprit.

Here's the link... http://www.latitudes.org/forums/index.php?...c=7170&st=0 This is the response where I read about the worsening of symptoms from die off. And it is more than a cough. It seems like PANDAS symptoms might worsen. I think it appears on the 3rd page of responses. It also discusses how steroids might worsen symptoms if it is Mycroplasma. Let's hope this is the worse and you will soon see better days. Unfortunately, I think we'll learn more about how Mycro P PANDAS patients react and recover from the current patients (like your child) who are just beginning treatment now.

So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what. Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link?

Please keep us updated! I hope the increase works.

If you first saw an improvement and now he's backsliding, in my opinion, I'd probably switch. I've heard that before. The first month they see what they believe to be improvement then a worsening. Does anyone know why that seems to be a magic time for when an antibiotic may stop working (around a month)?

Just wanted all of you "non facebookers" to know that our fan page now has 208 members! I thought I'd let you know since it's a good feeling to know there are people (even w/o a PANDAS child) supporting us.

UHC does have different plans and different things are covered under each plan. So...that may be a reason why it's covered for one person and not the other. I hate UHC too, but for different reasons. Could it be the diagnostic code they used? Is the hospital you are going to in your network to begin with?

I'm glad he's coming home! Keep up with the Ibuprofen right now in hopes of easing rages. Jot down everything that has happened along with number of calls, what was said, etc so you can file a report against that psych! Print out this thread too so you can have a timeline in case you forget anything. It's up to you, but I would fire that psychiatrist and file a complaint. Even as simple, as them saying they ran out of Ibuprofen. It's a hospital! They don't run out of Ibuprofen!

Has a higher dosage of Keflex worked before in improving PANDAS symptoms? There are a few kids on here who ending up having the most success on Keflex. I belive they did try abx like Zith first and it didn't help.

I don't know the answer to that off the top of my head but I do remember reading if someone has strep and mycroplasma at the same time, it's becomes a sort of powerhouse infection. It's much harder to erradicate.

It's time to camp out at the hospital and start threatening legal action if you don't see the psychiatrist. Or say that you want to bring him to be checked our by a "reg doctor" after slamming his head in the wall to rule out concussion. Don't do it via the phone anymore.At that point, whatever dr you see, have them call Dr K. Or that you will call news outlets. Can Dr K write/type out the recomendation for meds and email/fax it over to you and the hospital in the event that you don't get it all coordinated in time? I still say camp out and don't move until you are seen by the right people. This doesn't seem legal. It's not right!I swear, if I could get to you right now, I'd be right next you getting your son help.

That hospital and doctors are making me mad! They think they know PANDAS, they don't. Just remind your son you are not punishing him and you love him. Tell him ther are many peolpe fighting for him to get better! When are these kids ever going to be treated correctly?

Have you ever read this .... http://www.entrepreneur.com/tradejournals/.../169459644.html it seems most are having sucess on Zithromax or Augmentin. For those who are doing higher doses of Augmentin, some are getting Augmentin XR.

I'm sorry, but no one has tried changing his antibiotic, not even Dr K? I'm just confused because a lot of kids do NOT have success on penicillan. If it wasn't offered, I'd call Dr K today and ask if he can prescribe him a different antibiotic.

reactive, I'm just going to cut to the chase...how bad is his speech? I feel I can ask it that way, since one my kids had a speech delay and is 9 now still with some slight issues and my other one has a severe speech disorder. You can request an eval by the school district and try to get services through them.