thereishope
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Per Diana Pohlman…
The above post by laurenjoshnsmom was a direct quote from Dr. Karen Newell. Apparently both Diana Pohlman and Lynn Johnson were recently sent the same message. By being a private event this allows for an intimate discussion among scientists.
The Texas A&M website will be changed accordingly to reflect not being opened to the public.
Dr. Newell cares deeply about the parents and would like to find ways to opening future, similar events to the public.
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I'm East Coast time too and anxiously wiating for details. The conference is going on today too so we may have to wait a little longer. I, myself, was not able to go.
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Bumping.
Also, for those interested, the IOCDF has shared that next year's conference,in 2012, will be in Chicago!
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Reminder:
International OCD Foundation Conference
July 29th-31st in San Diego, CA
Meet and greet other parents connected with PandasNetwork.org
Saturday 9:30 am outside the lobby of Dr. Latimer's talk scheduled for 10:00 am.
An exhibit table regarding P.A.N.D.A.S. - P.I.T.A.N.D. Awareness will be found at the East Tower, Lower Level, Nautilus Foyer.
It was sponsored by PANDAS-PITAND Awareness and Research Support in an effort to raise funds for research.
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No offense to Dr B, but I would assume he is familiar with the studies associated with Xylitol and how it interacts differently with bacteria than other sweeteners? I'm just curious what his response was so I am familiar with everyone's opinions.
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Do you have her phone number? It's listed on the flyer
http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/
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I wonder if they worry that results would be askewed once they put him on antibiotics post IVIG/placebo. But, I did read over the criteria again and I don't see any clause about no children who currently improve while on antibiotics cannot participate. Does he nearly fill any exclusion criteria? http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969
I would contact that Rachel back and tell her you yet to hear from the researcher. You can call her which may be better. Ask for contact info or you should be able to track down info yourself too. I can feel your frustration. You know what your child needs, someone else will tell you what your child needs, but that doesn't help you get it. Tell her you would like something in writing or if your ped can contact her directly for guidance. If your ped gets the green light from someone from the NIMH to give your child abx, he probably will.
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If you can swing it, is there another ENT in your area, even if it is one that isn't soley pediatric? Have him/her look at your child, make sure everything was taken out that was suppose to be and the surgery was performed correctly as it soudns like this other guy isn't all that great. They may be able to help you. Some ENT's see adults and children. Just because you cannot go to the only ped ENT, doesn't mean all is lost.
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mamapanda, where do you live again?
Do you have other ped's offices you can look into? One day I finally had enough and looked for a new ped. I don't know why I didn't look sooner. Lots of phone calls, but eventually found one. You don't have to transfer records for the first appointment if not wanting vaccinations at the appt, so it's a way to screen the new doc before having all files transfered.
Also, you can go to an ENT. They may give you stronger antibiotics and longer antibiotics. If your insurance is bad, as it sounds like it may be similar to mine which costs me lots of out of pocket money, go to an ENT in a hospital in your county. You will be able to file for financial aid when you get the bill. Or you may be able to file for financial aid prior to the appt. Do you have copayments or coinsurance?
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All I can say is you're the Mommy. If you don't want to give him fish oil, then don't. Every child reacts different to anything. Chemar, I think said her son's tics worsen with fish oil yet when he eats fish, it doesn't. I think she gives him flax seed?
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My son continues to do well,knock on wood. However, when he entered kindergarten he was still early on in recovery and we had no idea what to expect. I had a meeting with his teacher prior to the school year and it really eased my fears as I learned she had a grandson with ASD and she could relate to some of the symptoms my son had. I did cite some examples that may have occurred at school and told her if she sees any questionable behavior, to just be safe and tell me.The meeting not only helped me, but I think it made the teacher feel more confortable.
As for the rest of the school staff, the only other person I told was the principal so I can be notified of strep in the class room. Well, his SLP was also aware of it since it is on his IEP for speech.
My son does have an IEP for speech and at his last meeting, I provided the OT article. I actually printed it off and burned it on a cd for them. I thought a paper copy in a binder would be looked at mor than a link. When I handed it to them, they instantly started fingering through the papers. Also, by printing it off, it will sit on their desk as a reminder they have it, need to look at it.
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PANDAS Network isn't having a table. Representatives are there to attend the presentations so we can remain in the loop of what is being conveyed and discussed. Since they will be there anyway, we thought it would be nice to meet other parents. I, myself, will not be there. Denise is having a table that she is doing independently and, to my knowledge, not affiliated with any organization.
Vickie, Would you be willing to have a flyer available on how to properly test for Lyme Disease and its co-infections since its such a problem for so many of us? I could speak with our Dr. have something put together for you.
-Wendy
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It sounds like you were happy with appointment, overall. Why the change with the fish oil? Was it the ratios? What kind was you child taking?
Did they give you an idea of when you will hear from the person that schedules the intensive therapy? Do they need to consult with Storch first?
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If you plan on going to the IOCDF Conference, some parents will get together to meet each other prior to Dr Latimer's presentation. Here's the link for info http://pandasnetwork.org/2011/07/pandas-meet-and-greet-at-upcoming-iocdf-conference/
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Well, since you posted this, I started looking for info and it's really hard to find! I see exactly what you did about the warning. I saw one site stating that IVIG did not include thimerosol but I cannot find the reason for the warning. Could it possibly be already existing in the donors whom may have gotten vaccinated with a vaccine containing it or it that really far fetched? I don't know much about all of this. Sorry...I tried!!!
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Just wanted to officially welcome you and thank you for sharing your story.
@michiganpandas, when you feel you, you child and family may have emotional strength again, perhaps consider trying some type of CBT or ERP if the OCD plateua remains. My son actually experienced residual OCD the last time. Not saying that's what you are experiencing, but after some soul searching some people may realize the PANDAS exacerbation is over but that pesky OCD stays around.
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I would vote to go in the sequence of do a rapid. If positive, stop there and get abx. If negative, get a culture. If culture is positive, get abx. If negative, it's up to you to decide to go further and check titers. Some have done so and realized others in the family are high.
We have experienced positive rapids in addition to false negative rapids, but positive cultures.
If at any point a family member does test positive for strep, recheck them 3 weeks after finishing abx to see if the infection has cleared.
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It's still there. It's the first one
http://pandasnetwork.org/2011/01/sample-p-a-n-d-a-s-letter-for-schools/
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I haven't tried it but they also make a nasal spray with it that I keep meaning to buy and haven't.I think it's called XClear.
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Yes, Sarah Jane...I already told my husband how I am actually relieved he has symptoms since he is asymptomatic to strep. Coincidentally, my other son, who is not PANDAS is also asymptomatic to strep but gets symptoms with Myco P. I'm telling you, though, it would be so easy to dismiss these symtpoms as something else and as a parent not see a reason to ever take them to the doctor for it. I debated for a few days before taking him.
Right now, his low grade fever, high non-fever...whatever you would call it...has leveled off and his temp is back to normal. His cough is worsening a bit (more often) as the doctor would happen when starting abx for it. She said it will worsen at first then slowly get better.
Vickie I'm glad it seems things are going okay. Hoping it stays that well!!! I know you do too. Having those myco p symptoms is probably a good sign too since if I'm remembering correctly he's asymptomatic to strep. Know that I'm thinking of y'all. ((((HUGS))))
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To rule other things out, have you tested family members for strep to make sure exposure isn't playing a role? Also, how about allergies? I ask since April is the beginnning of seasonal allergies for some people.
Would you be interested in a get together in Indianapolis?
in PANS / PANDAS (Lyme included)
Posted · Edited by Vickie
I am seriously thinking of trying to find a way for parents to get together for a luncheon, but I have no idea how many would actually be interested in attending.I was thinking Indianapolis, IN. I was thinking this may be of interest of people in IN, IL, OH, KY, and more. I'm from Ohio but I know not many are in my area and I would like to make this more accessible.
I don't have a date and even if I can swing this it may not even be until 2012 due to planning, getting some funding (as the ideal would be a complimentary lunch) and availability of locations.
I know I would want a Saturday, maybe something from 1-4pm so people have extra time to drive back hom if it's a further drive to avoid staying overnight.
So, this is not a RSVP or anything but just so I can at least have a ballpark number of people interested. I hate to think 10 or 25 and then get 50 saying they wish they could attend.
If you may be interested, please mark the poll. If you don't pop on here often and you'd like me to take note of a contact for you, like an email, feel free to message me the info or email me at pandasparent@gmail.com. I would only use the email to contact you if plans are actually made and for no ther reason.
EDIT 8/4: This would be parent only. Unfortunately, funding would not be sufficient to pay for travel, lodging for doctors or researchers to speak.