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Amazing Dr's appt at Shands clinic


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Michele,

 

That is awesome that you have an appointment so soon. I can't wait to hear how it goes. To answer your question, we use NSI brand of Fish oil and I get it online from vitacost. I started off using Nordic Naturals because that is what is used in many of the studies done on children. I was very satisified with them, and only switched because of price. I have my entire family, 3 children and 2 adults on it so it can get a bit costly for us. If I was only giving it to one son I would probably have stayed with the Nordic just for the peace of mind knowing that is what was chosen for scientific studies. However, I researched the NSI brand thoroughly and found it to be very good as well and a bit less expensive. I had actually talked to Dr. Murphy about my other child (who wasn't with us during our visit), and his OCD tendencies, and some of his behavior that was becoming a bit PANDAS acting. She had recommended that I start all of my kids on the fish oil, so that is how we got to the family plan. I give my oldest son who has PANDAS and is almost 12 years old and weighs 135 pounds, three capsules daily. The bottle will say to only take one, but the studies give much higher doses. I started off giving him four for about the first month till things settled down, then I cut back to three and he is still doing fine. I take four a day myself and I can tell that I feel so much better.

 

As for the probiotics, I also use the NSI brand for that, although there are lots of people here who use other brands successfully. I just chose that so I could order it together and because it has all of the appropriate strains that he needs. Seems to be fine. I have all the children on it.

 

My son is doing fine. I knew that school would be the defining time for him. So far, and I hold my breath, everything is going well. He did very well the last few months of last year as well. All I can do is thank the Lord, and keep a close eye out for changes. We haven't had to call back to Shands yet for anything except to remind them to send the follow up letter to my pediatrician. As usual, they were extremely nice and apologized that it had not been done. I think you will be pleased with your experience.

 

I really do not know how she will react to the whole DAN doctor thing. I personally don't know much about it either. I guess that is the only thing we didn't do. Although I would have if I needed to. She is so very nice and seems open minded, I can't imagine she would ever be rude. Please let me know how things go for you after you get back. Hope you get some answers.

 

Dedee

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Tell me about it! Did you travel to get there? Where did you stay? We are flying from Ohio so I found it less expensive to fly to Orlando and rent a car and drive. The car rental is half the price there. We will stay close to the hospital since it is an 8:30AM appointment. Any suggestions where to stay? What did she say or recommend for your child? Is she a psychiatrist? Does she try to treat the PANDAS from a cognitive therapy approach? How long did it take you to get in? I started calling Aug. 13th. Had his records faxed that day. Called once a week since then. Finally this week when I called Dustin fit us in. I am nervous about traveling so far and spending so much money again on Dr. We just got finished seeing the DAN Dr. and that is about $600 out of pocket plus all the tests. The air over night test cost $50 to ship lus it was about $60 to order. My husband is getting ready to commit me. We are an one income family with four kids. I am desperate to get him the help he needs though. Just some reassurance we are treating him right.

Sincerely,

Michele

 

 

OH MY! we just had our first appt with dr murphy last friday! i finally have hope for our child!!!!!!!!!!
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Just curious, is this Dr. Murphy only well versed in the PANDAS syndrome? I mean does she only know about ts as it relates to the strep connection? Do they treat TS or OCD if it is not connected with the strep? We don't seem to fit into that boat, but I think many of us here are aware of times when we've seen definite increase in tics when our child is sick and with strep, but the test for titers doesn't come out elevated. Has anyone asked if the antibiotics would work for anyone with tics/ts? And why does it take so long to get an appointment? Is it because there are so many patients with this type thing waiting to see her? Or just have alot of patients in general. Also, what is her main area of practice--is it only PANDAS research?

 

Thanks

Faith

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we saw dr. murphy last week---for my 8 year old she told me to go to the local pharmacy and get "coromega". i found it at our grocery store, it's a 30 day supply and they are like ketchup packets, liquid type. go to coromega.com. so far my daughter takes it and i mix it with a popsicle and she eats it fine---hope that helps. PS dr murphy is great

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Hi Everyone,

 

I keep hearing about coromega as the fish oil choice for PANDAS as suggested by Dr. Murphy. I checked their home page and there are many different flavors and packets etc. What is she recommending? Are they all the same quantities? I am wanting my younger kids on fish oil but they cannot swallow pills, this seems like a powder.

What kind do your kids like? How much does the doctor recommend?

 

Thanks in advance,

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Michele:

We live only 2 hours away from gainesville and i went to college there so i am familiar with the area...we had that 8:30 appt as well. we left in the morning so we didn't get a hotel room...there are a few hotels right across from shands that are really convenient and you can easily walk over...not sure of their names but they are on archer road, right near dr. murphy's office. we met first with a dr named dr. segurra, super nice lady --- took our history. the office is really nice and there's a playroom so the kids can go play while you give a history. she then talked to my daughter (not murphy but the fellow dr) for about 30 mins. then they returned and segurra went to meet with dr murphy for about 45 mins---i sat wondering what the heck was taking so long---they were literally reading all of the records from the pediatrician, neurologist, etc. they both returned...i met dr murphy. she was amazed by alex's history of strep infection, allergies, skin allergies, ear infections. right now my daughter's tics are mild, they were bad this summer. she ordered a lot of blood tests so we haven't heard back on the results but she is checking immunity, etc. she suggested magnesium and coromega. and a better diet. but really i have to wait and see what the test results say...they also did a quick strep swab. i can't say exactly how they treat b/c we aren't on any meds and we don't have any test results back. we have seen two pediatricians, one neurologist, a psychiatrist and dr. murphy. so far i got more info from dr murphy-----the director of neurology for a hospital in jax told me to "avoid support groups and realize it will be a long road---and to realize that diet, supplements, etc have nothing to do with ts, it's purely genetic". the pediatricians said it was only allergies and habit. dr murphy and her fellow were the only ones i have talked to that didn't think i was a nut case---and they are open minded and take the WHOLE history and want to find the CAUSE of the ts in the child, not just treat the symptoms. i do not debate that there is a genetic link, but i believe there is a pre-disposition and that environment/infection/etc plays a role.

it didn't take me long to get an appt, but they do not take our insurance which is a bummer! but you know, it's your child and i think God will provide and will take care of us---i think you are doing the right thing by taking your son there. my husband thought i was overly worried, affected, etc...but after we met with the gainesville docs he said "finally, someone wants to look at her blood, check what is going on, etc" it took a long time for my husband to just acknowledge it was TS---he thought it was allergies or visual problems. i was a speech pathologist and have been around kids with ts although i only worked with adults---i knew what it was and it made me so frustrated that i couldn't get anyone to verify what we saw. i finally took a secret video of my child watching tv --- tons of tics...took the video in to the neurologist and pediatrician---that finally confirmed the diagnosis, as alex didn't present with those symptoms at her visit.

let me know how the visit goes....i think it is worth the travel and money---you will have more hope i believe....let me know if you have anymore ?s---

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check coromega.com

i found it at the pharmacy. it's a pudding like consistency, natural orange flavor----no sugar, starch, gluten, etc. i think i paid $18 for a 30 day supply. your grocery store probably carries it--that's the one dr murphy told me to get.

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PS, i give my 8 year old one packet of the coromega (it's just like one packet of ketchup--) i put it on a spoon and stick a little popsicle piece on top and she takes it fine---of course she complains but that's what kids do! i also bought fish oil capsules for myself so we take the dose together.

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the reason it takes so long to get an appt is that she only does clinic on fridays --- and treats half a day i think, so that is what the delay is. we don't know if our daughter has a strep link, waiting on blood tests, etc. Our daughter has a history of a lot of strep and ear infections, etc...

 

[

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yes, keep calling and try to get a live person if you can, not sure the hours they answer. i am sure by now you are very persistent at this stage of the game! keep calling and once you get the appt they will send you paperwork, etc.

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Wow, I am so glad to see that you had a positive experience at Shands as well. Dr. Murphy is so awesome! I think in regards to the fish oil it may depend on the age of the child as well, depending on whether or not they can swallow a capsule or not. We have used both Nordic naturals (which is used in most studies) and NSI brands. My son can easily swallow capsules though.

 

I can feel your relief in your writing. It is so good to finally see a doctor who doesn't think you have lost your mind and looks at you like you have grown another head :-). I just wish there were more like her out there. She was even able to help me with my other son who doesn't have PANDAS but who tends to have OCD tendencies. Just gave me a few pointers and explained a few things that made so much more sense.

 

All I can say is God bless her and I am so happy for you and I can't wait for Michele to get back!

 

Dedee

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