Guest guest Posted October 1, 2009 Report Share Posted October 1, 2009 Judy--That's big news! After all this time, you have something to pursue to help him. Hurray! I'll be looking for your updates. How are your other children doing? Is your daughter still in gymnastics? Dina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi Dina, Yes ,I'm calling on Monday about the PANDAS, but my question is, " Isn't the treatment for Lyme the same as PANDAS? " I'm suppossed to be going to a Lyme specialist in Jan, and that costs 875.00 to walk in the door.Also would this doctor actually diagnose my son with PANDAS? Would it go on his record? My oldest daughter is doing great!! Still straight A's and a red belt in karate now. My middle daughter (with OCD) is doing okay.She had to quit gymnastics, because the stress of being on team was too much for her.She has been in football cheerleading for 2 years now.She does very well with that? How is your dd doing??????? Hugs judy ________________________________ To: Sent: Thursday, October 1, 2009 3:08:28 PM Subject: Re: Re: OCD and Tics-Judy Judy--That's big news! After all this time, you have something to pursue to help him. Hurray! I'll be looking for your updates. How are your other children doing? Is your daughter still in gymnastics? Dina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Judy, Mikayla is doing great. She is still on Prozac, 60 mgs. and was on 30 mgs. of Buspar all last year. I noticed since about April that she was having a lot of OCD anxiety in the evenings, so the Buspar was just not helping. In the past, I've taken her off of it (no difference, since it wasn't working anyway) and then a few months later put her back on and it works well again. ?? Go figure. So, I took her off at the end of June and we started back up when school started in Sept. It's working! No anxiety at night. Which is a God send since she started high school and is on a dance team 3 nights a week until 8:45. Too much to do to have vomit thoughts! :-) So, so far, so good. Now, the whole teenage thing is a whole nother matter.....I catch her watching tv instead of doing her homework, her room and bathroom are a complete disaster...just not her usual responsible self. What's up with that? Dina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Hi , I was just curious if anyone had any experience with all of this. From my understanding Lyme is sometimes treated with IVIG, just like PANDAS. I was just thinking if my son were to get the treatment from a PANDAS doctor, perhaps, he wouldn't need to go to the Lyme specialist.I thought maybe I could " kill two birds with one stone " It's just so crazy!!!!!! hugs Judy ________________________________ To: Sent: Friday, October 2, 2009 9:18:19 AM Subject: Re: OCD and Tics-Judy Hi Judy - Medical issues, especially ones that cause Neurological issues, are so complicated and hard to understand! But I think that is a little like asking isn't the flu treated the same as a cold. They are similar, but require different specialists. They are both very serious, and need to be treated as such. They are both progressive, and early treatment is helpful. If you work with a doctor now, be sure to inform him of the Lyme possibility as well, as they may wish to order additional blood tests. I'd suggest that you do the earlier doctor - and get the blood tests run. Then you can decide on next steps, and whether you need the appt with the Lyme specialist in Jan. Hope this is helpful to your son - I know the cost can be daunting, but imagine all the money you will save if his long term care options are made easier! in NC > > Hi Dina, > Yes ,I'm calling on Monday about the PANDAS, but my question is, " Isn't the treatment for Lyme the same as PANDAS? " I'm suppossed to be going to a Lyme specialist in Jan, and that costs 875.00 to walk in the door.Also would this doctor actually diagnose my son with PANDAS? Would it go on his record? > > My oldest daughter is doing great!! Still straight A's and a red belt in karate now. > > My middle daughter (with OCD) is doing okay.She had to quit gymnastics, because the stress of being on team was too much for her.She has been in football cheerleadin g for 2 years now.She does very well with that? > > > How is your dd doing??????? > Hugs > judy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi Michele, This is what I was afraid of. I know I will never find a doctor around here to do a prednisone boost, never mind antibiotics or IVIG.Dr. K, pretty much said in the e-mail he thinks my son has PANDAS. He said it was very highly likely he did. He honestly has every symptom of it there is. We have tried dozens of meds, and nothing works anymore. I'm really discouraged. He started tenex a few weeks ago for the tics, and it did work, now they are right back again, along with all the thoughts, etc, etc, It's so exhausting!!!!!!! thanks for sharing! Hugs judy ________________________________ To: Sent: Friday, October 2, 2009 1:57:27 PM Subject: Re: OCD and Tics-Judy I wanted to jump in because we have done the phone consults with Dr. K. and a few other Dr's for PANDAS and immune issues. He billed us for $300 I think. The only problem I had was, even though he emailed me with his recommendations for treatment, no local Dr.'s would do the steroid burst or antibiotics. You might as well go to Chicago and save yourself the phone consult and let him check you out in person. We finally got the steroid burst this summer in MD by Dr. Latimer in person. After the phone consult I felt he did have all the symptoms but were back to the now what do we do? Have you looked into a spectrum disorder from a dev psychologist? We have spent enough time and money seeing every type of Dr. in the world for my 7 yr old. His came on from strep, however even with antibiotics he didn't stay symptom free. His obsessions continued and the compulsions and tics and anxiety and rage got worse. I feel now that we have gotten a diagnosis of Aspergers it is like the larger picture and everything else is just a sympom that falls under it. The steroids didn't take his symptoms away either. We have not done IVIG and may have to do it later but steroids 3 weeks at 10, 20 30 mg made him angry and irritable. A lot of this is guessing and spending alot of money out of pocket. Are you using any meds? Right now we are on Risperdal 1 mg twice a day and my son is seemingly not as angry or obsessed. However he is still anxious and gets on his curled toes and smells and worries about things. Maybe we will try a new med anxiety with the risperdal next. A good psychiatrist can help alot. Dr. K is a ped and knows alot about PANDAS but nothing came out of it for my son because we didn't travel there. Dr. latimer is a child neurologist and she felt my son's largMicheleest issue was anxiety. > > Hi Dina, > Yes ,I'm calling on Monday about the PANDAS, but my question is, " Isn't the treatment for Lyme the same as PANDAS? " I'm suppossed to be going to a Lyme specialist in Jan, and that costs 875.00 to walk in the door.Also would this doctor actually diagnose my son with PANDAS? Would it go on his record? > > My oldest daughter is doing great!! Still straight A's and a red belt in karate now. > > My middle daughter (with OCD) is doing okay.She had to quit gymnastics, because the stress of being on team was too much for her.She has been in football cheerleadin g for 2 years now.She does very well with that? > > > How is your dd doing??????? > Hugs > judy > > > > > ____________ _________ _________ __ > From: Dina <dina.n.jones@ ...> > To: @ yahoogroups. com > Sent: Thursday, October 1, 2009 3:08:28 PM > Subject: Re: Re: OCD and Tics-Judy > > > Judy--That's big news! After all this time, you have something to > pursue to help him. Hurray! I'll be looking for your updates. > > How are your other children doing? Is your daughter still in gymnastics? > > Dina > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.