thereishope

Just a quick update that we were thinking early November 2011 for the get together. Before the holidays and winter hit and we don't have to wait until next year. When we have the exact date, which won't be a definite until we book the venue, we'll let you know!

Well, I can give an opinion if I look at it from Myco P....I've had kids who are symptomatic with Myco P and their only symptom was the cough.They were in great spirits and you'd never think they were sick. Keep an eye on it. Another mom on here, SarahJane, may be a good one to touch base with. Her son I think is finishing up a script for possible hidden Myco P and her son started with a cough after starting the meds. But I don't remember his timeline for starting abx and having the cough start.You can always message her about it for more info.

When someone has Mycoplasma Pneumonia they can also have a herx reaction. In a symptomatic person, after starting antibiotics for it, their cough is expected to worsen first indicating the antibiotics are working. Then it slowly improves.

I only had it done with my last pregnancy. There may be a shorter, prescursor test they can do and see if that's in normal range and if the 4 hour is needed. Well, at least it's like that with pregnancies....

This is directly from the TX A&M website: http://medicine.tamhsc.edu/research/centers/ccdd/upcoming-events.html

Thought I'd share our trip to the dentist. Our PANDAS ds went in for routine checkup 6 months ago. His newly formed 6 years molars were already slightly soft when they did a pressure test. It was suggested to get sealants and we passed. Then a couple weeks ago, it once again time for routine check up. Those 6 year molars were softer now according to the pressure test, but only borderline cavity. We were told his 6 year molars had extremely deep grooves, deepest the dentist has seen in his 22 years, and we were once again suggested to do sealants.If they did sealants, they would have to rid the teeth of the soft spots first. After a lot of contemplation, and some still existing hesitation, we decided on the sealants since he had those deep grooves and I guessed he inhereited my awful teeth. In order to get rid of the soft spots, they would use a fast circulating brush like instrument that would brush away those soft spot prior to sealant. It was not drilling. No novocaine would be needed. So, he went in this morning. After the dentist started to "brush away" the soft spots, he said the enamel on his back teeth never developed. There can be a number of reason why and with some kids it just doesn't. We did nothing wrong. It also ended up he had cavities in two of those molars with no enamel. This is a kid that does not eat a lot of sweets, doesn't chew gum, never drank a drop of soda in his life, and brushes his teeth daily. Those molars are less than a year old. The good news, no novocaine was needed still it was so superficial. When I got home, of course I researched lack of tooth enamel and it said kids with immune problems can have this issue. So, the reason for this long post is just to share our experience so if you find yourself with the same decision to make, you have more info to help you make your own personal decision. For us, I'm glad we did this now. If we waited, it could have eventually led to a worse cavity or a root canal which would run a higher chance of emitting bacteria into the body, needing anesthetic, etc.

I'm sorry. Do you have anything anti-inflammatory you can give as well? I have been reading a lot of kids getting back from camp and vacation and having symptoms resurface, probably due to exposure, coming off the excitement of the trip, and being tired and having to adjust back to life and routine at home. So, let's hope that is what it is and in a few days she will shed what has resurfaced. Push sleep and being laid back. I hope and pray all levels out very quickly!

I'm sorry. It's hard to hear words like that come out of your child, especially when they are so young. May I ask how open you and your husband are in talking about PANDAS, strep, etc in front of your son? I ask because I had to learn to stop saying things like "I think he has to go to the doctor" to my husband in front of my son as I realized that caused him more pain, anxiety, and sadness. I also had to learn to watch what I say like if he acted oddly, not to say under my breath, "I hope we don't have to go for a strep test". Don't know how open you are around him, but perhaps it may make a even a slight difference in how he views what is going on.

I messaged you

Thank you to those who have found the fundraising page, "liked" it, shared it and donated so far! Thank you to SarahJane and tampicc (my Indy native) for getting on board and helping me!

The ped's in my office say the same thing for strep and Zith. I think certain areas may see more resistent strains? Were they already on any antibiotics? When strep re-entered my house, the kids went on Omnicef but depending on insurance, it could be a pricey prescription. It was for us. For all 3 kids, it cost a total of near $200. Keflex is also a cephalosporin but I believe it costs less. Otherwise, you can go for Augmentin.

Great hidden gem they found! Thanks for sharing!

I messaged you:) Vickie, can those who might be interested in making a donation PM you for the information?

I cannot recall a Potential Prior Exacerbation.

Well, I dove right into this and I officially have a fundraiser started for this! We cannot post fundraiser links on this site and I fully respect that, but wanted everyone to know I am officially trying to make this happen!

It is in their criteria that the child cannot be allergic to penicillin http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969 but I just assumed it was going to be pen vk 250 twice a day.

My son's second strep induced exacerbation was worst than his first. His third lastest the longest. With the second and third ones, strep was caught and began treatment within 12 hours of onset. So, in my child's case, catching it fast may not make a big difference in severity.

Well, that wouldn't matter if the child is already known to be asymptomatic to strep infections. But, yes, if the child gets white spots and pus on their tonsils when they have strep, that may be a good reason to keep them. they act as an indicator. I think there are some children that benefit from having t and a , it's just also hard to pin point having tonsils removed as the reason for having less strep. I know I,as a child, had NUMEROUS bouts of tonisilitis (may have been strep but never tested, just given penicillin) and never had tonsils removed because that was the time when tonsils were kept because they deemed it an intergral part of the immune system. Now, as an adult, I wish they were taken out. I think if/when a PANDAS child goes for t and a, one really should weigh the time of year, what kind of stress the child may be under after surgery in terms of school and similar and how their PANDAS symptoms are. With my child's PANDAS symptoms in mind, I could not see putting him through even a consult whne at his worst or early on/mid way into recovery.

Amoxicillin once a day was the prophylactic given by those that ran the study? Just want to clarify.

Thanks, EAMom!

That would be the ideal, but then you still have the other kids that will be denied abx because they don't test positive for something. So, I would think this defintion is to also protect those children and show doctors they can "over ride" the strep tests and such because the child fits the PANDAS criteria otherwise. I think what the ideal is is that a child will get more than the normal 5 days Azith or 10 days Augmentin if they fit the criteria. To date, parents still have a hard time getting this from their first line of defense...the pediatrician. Docs still want that official diagnosis before prescribing more than the typical course of meds. I can see some saying "I'll give you 10 days worth, but then we need to wait the month that is cited and go from there". Sorry...yes...one month or less is fine

What's the estimate number of parents in the area? I'm trying to see how much funds would be needed and, obviously, that's based on the number of people.

Question, do you think if it is worded this way, docs will make kids wait a month to see how bad they get or if they will refuse to treat until the child is fully incapacitated? Don't want that window of catching it very fast to hopefully remit it with antibiotics to pass.

Can you call her?