DLD

THANK YOU NINA! I was having concerns myself about some of the postings I have seen. I have also been hearing from parents and children who check this forum and have concerns about the comments being made agaist their physicians. I know many who see the particular physician that is being referred to and have received nothing but compassionate and quality care and services. His staff is currently very busy because his patient load has increased tremendously due to the positive reputation he has with treating dysautonomia. People should be very careful about making negative comments on a public forum about a physician or anyone for that matter. Especially, if they previously worked for that physician and no longer do. Some people may think it borders on slander. This particular physician treats many other patients with success and he has the respect of many in the dysautonomia field, including Dr. Blair Grubb. People should remember that what they post on a public forum has a much bigger effect than getting advice for themselves. Of course, people do already realize that.

I am so glad you all enjoyed yourselves! Michelle - you are a wonderful person and it was great to finally meet you. I hope your DINET adults value you as much as I do! We are all very blessed that you take the time out of your busy schedule to get all this information out to the public and to keep DINET up and running. Someday, I would like to meet you when I am not overwhelmed with picking up kids off the grass or floors! A funny thing happened that you adults will appreciate. Through the kindness of a contact we have - a medical life flight helicopter landed at the hotel to give the kids a tour. When I had my back turned, someone took the kids outside to watch it land. Standing out in the heat and waiting for the chopper to land and looking up into the sky was too much for the kids though. As soon as I realized they were outside (ugh - it was way too hot) I ran out to tell them all to get back inside to wait. No sooner had I walked back in the door than one of the kids was having a seizure on the hotel floor. The medics were to her within two minutes though. Of course, technically the medics landing caused it! I heard one of the medics telling their boss on the phone that things sure got crazy once they landed (we had more than one child down by this time and we had them laying on the floor with their feet elevated in the hotel hallway). The kids all regrouped though and it all worked out fine. They also all know NOT to go out in the heat and stand in one place and look up at the sky now! Believe me...there is also no doubt that the Toledo Life-Flight Medics KNOW that dysautonomia is real. They got an eye full. The kids gave me a few more gray hairs this year too! It's all worth it to see the smiles on their faces though. They had a great time. They are so awesome and I am so proud of them all! I hope to always work closely with Michelle. Our organizations are proof that the young and the old (OK...now I am not saying you guys are old - you know what I mean) can work really well together! Please remember to donate to DINET - every little bit helps Michelle keep putting out the information that we all value so much. Debbie www.dynakids.org

I find Dr. Abdullah wonderful with treating the kids and very informed and up to date. I also know several adults who have seen him with great success. I highly recommend him as a compassionate, well informed cardiologist who is upcoming in the field of dysautonomia. No doubt, you be hearing his name a lot in the future. I do know he prefers to treat patients within driving distance as he likes to see them frequently during medication changes etc. As you might know, every physican has their own treatment plans and opinions on these conditions and every patient is different in how they respond to treatments and to the physicians. Anytime you can find a physican like Dr. Abdullah - who is compassionate and involved with his patients - you take a huge step forward in your own care.

There is a wonderful cardiologist in Northern Virginia that specializes in dysautonomia and would also be worth your effort. I am sure he could see you before October. His name is: Dr. Hasan Abdullah (1-866-645-4055). We see him and Dr. Grubb. It is always a good idea to have a local doctor. Personally, I love them both and find two qualified opinions a wonderful luxury.

I was told that many POTS patients experience this and that you tend to be sensitive to any sensory stimulation (meaning noise and light etc.). I know some people wear sunglasses when outside and I have heard wide brim hats help some too. When my daughter first got sick this was a huge problem for us but over time it has improved dramatically.

No...but we graciously accept donations to help cover our rental facility costs etc. and if you do want to eat the Pizza at the lecture - we will ask for a few bucks to cover that. Michelle and I greatly depend on donations to keep doing this work and every little bit helps us. It takes a tremendous amount of behind the scene work to accomplish things and it is very stressful for us sometimes to not know what funds we have coming in. We both run all volunteer organizations but we can only accomplish big things if we know we have funds coming in and how far we can get with promotoing awareness and support depends on what funds we do have. We run our organizations from donation to donation just like most of us live from pay check to pay check. If Michelle is like me, she hates to ask for donations but needs them badly. Even $5.00 helps.

Yes, Michelle and I already discussed this. One thing the DYNA kids do is copy our newsletters and take them into physicians offices. Generally, physicians are very receptive. You all could do the same. Michelle has wonderful newsletters and they are very informative without being overwhelming to read. Ours are also available for printing from our web site (resources page) and we would be glad to mail you our most recent ones for $4.00 postage and handeling. Our next edition is out in mid July. Another wonderful option is to order: The Fainting Phenomenon: Understanding Why People Faint And What Can Be Done About It By Blair P. Grubb, MD Mary Carole McMann, MPH ISBN#087993413 $18.95 1-800-216-2522 http://blackwellpublishing.com/ This book is a wonderful resource for physicians and is highly respected by them and it is also great for dysautonomia patients. He is holding a book signing in a major Toledo bookstore in August and it is in it's second printing. I can find out the name of the bookstore for those interested - or Michelle probably knows it. I am not sure if the price has changed since I last purchased mine - so you should check first.

Hi All, This is Debbie from dynakids.org. I just wanted to let you know that if you do plan to attend we need to know to expect you so we have enough seats set up. You should notify us by email: ddominelli@dynakids.org by June 25. We have limited space available so of course it is nice to know how many from outside our group plan to attend. We serve pizza to our DYNA kids and families mid lecture. We can feed some of you but we sure can't feed an army. Please let us know if you plan to eat with us. We may have to request a small food fee if so. Basically, what we hold each year is not a conference but is what we call our "Summer Chill" and it is a 3 day private summer social event for DYNA kids. What is public is our "Goofy Slipper Lecture on Dysautonomia" on July 13 at 4:30 PM. This years speakers are: Blair P. Grubb, MD, Hasan Abdullah, MD, and Robert Hoeldtke, MD. Michelle and I work closely together and this invitation is only open to members of her organization. If you are unable to attend we video tape the entire lecture each year. Email me if you have any questions. I am sure Michelle and I will be talking frequently as well.

Some of the kids in DYNA (www.dynakids.org) experience hair loss (my own daughter included). I was told by Dr. Grubb that in our case my daughter's hair loss was a side effect of long term use of Florinef. We took her off Florinef last year. Her hair immediatly responded but she could not function without the Florinef so we had to add it back in 6 months later. Once again, her hair started falling out. We just stopped the Florinef again and immediately her hair is coming back in and responding. In her case it is obviously the Florinef long term use (over 4 years). We have added Licroice Root to compensate for the Florinef and we are hoping that will work this time. At age 13 you pick having hair over standing if it comes down to it. I know of two other girls in DYNA who both recently experienced extreme hair loss (everywhere). One was told by her doctor that it was from lack of circulation and the other was told it was the stress of the condition itself.

Has Wellbutrin ever been mentioned to any of you for your brain fog? Some of the DYNA kids have had a lot of luck with it helping them.

Hi Ladies, I don't have POTS but I just started taking Neurontin for peripheral neuropathy and migraines. It immediately made a difference in my life. I was wondering why it has not be utilized as much in POTS patients - as it has helped me so much. I was going to discuss this with Dr. Grubb next time we talked. Funny you brought this topic up! Thanks for the link! Debbie from www.dynakids.org

Thanks for the input on the cancer comparison. That actually came from a physician who treats many of these kids. I will have the web site people look it over. It probably would read better if it said ?Why have I never heard of ?dysautonomia? before?not specifically ?POTS?. What he is actually saying is that like cancer ? dysautonomia has many degrees and many forms and some respond to treatment and some don?t etc. Also, that in the past people didn?t know what cancer was but now people do. Someday people will know what dysautonomia is too. The kids will mutiny on me if I compare dysautonomia to cavities and chicken pox and cold sores though (however I know what you mean by that comparison and that you were not downplaying the conditions). Tragically, we have more than POTS and NCS cases in DYNA so it is very hard to word things addressing everyone sometimes. The DYNA kids all know about fatal cases because we have some kids in our Postal Outreach with a fatal prognosis (obviously not POTS or NCS cases). The kids are very supportive of each other and we constantly stress the differences to them. It actually helps them to be able to help each other with support issues. They write our sicker kids and send cards and care packages etc. While it may scare them to know that there are fatal cases, it is a fact of their lives and we constantly stress the differences in forms of dysautonomia with them. The able kids in DYNA become advocates and are constantly working as a group to promote awareness of dysautonomia conditions. We have kids from 1 year old to 26 years old so it is a wide age range. The average DYNA member is a teenager. Tragically, it tends to be our littlest ones that are on oxygen, feeding tubes, etc. The older kids take them under their wings. Yes, soon we do expect we will have to deal with losing someone (we have a little one with hospice services currently) and getting through this is going to be upsetting for us all. For now, we are just all glad that we could be there for these children and their families when things were at their worst.

This is Debbie from DYNA (www.dynakids.org). Michelle is someone I greatly admire and she gave me permission to spy on you guys a little. I really learn about about how to help the kids by listening to you. Unfortunately, they keep me so busy that I don't have a lot of free time to spy! If you don't mind I will be logging on now and then and reading your posts etc. Also, I'd greatly appreciate it if you would tell kids or parents who come to this forum about DYNA. As you know a whole world opens up for you when you finally find out you are not alone. I will be sending adults to Michelle and you guys. Thanks for being the heroes and setting the path for the kids who follow after you. Stay strong!