nojo Posted October 16, 2009 Report Share Posted October 16, 2009 Hi all, a quick update. We saw Dr. Latimer yesterday, and it was a helpful visit. I had my (large) 3 ring binder ready, my spreadsheet of strep positives and antibiotics handy. She was very nice and she really listened to us. She pointed out that we do have chorea (which I didn't know) so I'm really glad we made the trip up to see her. I left feeling validated that I wasn't crazy, and that I could help my daughter. The doctors we've seen in Richmond didn't quite know what to do with us, especially when our aso titers came back that we didn't have strep even though the culture was positive. I know this has been the a topic of debate lately, and it was making me question why we were culturing positive, having behavioral symptoms, but the blood test shows nothing. We did the Cunningham test while we were there, so I don't have those results yet. What she also told us, is that because we have severe asthma, and all of the positive strep tests we have been essentially treating the PANDAS, with prophylactic antibiotics and lots of prednisone (for the asthma) over the last two years. We are on prednisone quite a bit each winter. We also did the immunological bloodwork and failed the igg portion. Because of the failed igg portion and the constant illnesses she believes for us, a PANDAS diagnosis is really unnecessary, that we need to follow up with the immunologist, and pursue ivig because of the immune deficiency since this is a more easily recognized diagnosis. I never thought I'd actually be glad to hear that our severe asthma has saved our daughter from more severe neurological complications. I found her to be very helpful, but I do have to say, her office staff, and the lab that drew the blood work made us feel like second class citizens. I do think she is getting inundated with PANDAS patients and she was as kind as can be, but I really was pretty ticked off at the way some of her staff and the lab especially treated us. We drove for over 2 hours and are paying their salary. They certainly can learn to behave a bit nicer and show some compassion to parents who love their children enough that they are willing to do what it takes to get help for them. OK, rant over. Because we get strep monthly, and the swine flu is so scary and rampant, have any of you all considered homeschooling your children? Between the asthma, and constant strep we are exposed to, I'm thinking it may give my daughters time to heal from the constant assault of germs. I've decided to keep my kids home today, because flu is confirmed in the class, and with the weakened immune system, it could be bad for us. Our school is offering the swine flu vaccine, both the live virus and shot to all students. Dr. Latimer told us with our weakened immune system we cannot go to school for a full week after because being surrounded by live virus is dangerous for us. She wants us to get the shot asap. We are to meet with an immunologist next week to further discuss the implications of the bloodwork. Has anyone decided to do this? Any recommendations? Thanks again for all of the help I've received from all of you. The information I've gained here helped me tremendously. My husband has been impressed that often after you all explain the research in English, you provide the actual links to the scientific articles. Link to comment Share on other sites More sharing options...
faith Posted October 16, 2009 Report Share Posted October 16, 2009 nojo, just curious, when you were there, were there other kids in the waiting room too? does Dr. Latimer only see kids re PANDAS, or with other problems too? I mean, is she basically still a ped neuro, and she sees kids every day? that's a little wierd tho that the staff seemed put off, I mean all doctors offices are pretty busy, so that's a little curious. maybe it was just the peeps working there that day. yikes, now I'm scared to go, lol! Faith Link to comment Share on other sites More sharing options...
dcmom Posted October 16, 2009 Report Share Posted October 16, 2009 Nojo- I am sorry you had a bad experience- but I have to chime in. I have found Dr Latimer, and her office staff to be unbelievably kind and helpful to me and my children, both when we are waiting and on the phone. I have actually thought (for a doctor's office) they are exceptional in this regard. The first time we were there, my daughter was nervous, and they asked her to feed the fish. Little things like that can be a huge help. As for the lab, I am not sure where you went- she doesn't have a lab. Possibly you were sent to an independent lab in the building like Labcorp. Those places always seem to be a marginal experience- but that is in no way under Dr. L's control. It must have just been an off day- don't let it discourage you.... Link to comment Share on other sites More sharing options...
dcmom Posted October 16, 2009 Report Share Posted October 16, 2009 oh- and I do think of homeschooling, a lot. But dd loves school and needs the independent time from me. If illnesses get bad at school this winter, I will take her out for extended time though. Link to comment Share on other sites More sharing options...
nojo Posted October 16, 2009 Author Report Share Posted October 16, 2009 nojo,just curious, when you were there, were there other kids in the waiting room too? does Dr. Latimer only see kids re PANDAS, or with other problems too? I mean, is she basically still a ped neuro, and she sees kids every day? that's a little wierd tho that the staff seemed put off, I mean all doctors offices are pretty busy, so that's a little curious. maybe it was just the peeps working there that day. yikes, now I'm scared to go, lol! Faith Don't be scared, it was just little things the front people said. We were the only patient there for the whole 90 minutes. Someone else arrived when we were leaving, but we had her full attention for at least 90 minutes. We were not rushed at all, she answered all of our questions, looked through all of our information, and was very thorough. I felt like I did get my money's worth just having someone knowledgeable full undivided attention for that long. Her waiting room was set up for children, with block and a fish tank. When we went to the lab to do the Cunningham blood work, when we walked in, the guy said "Oh, let me guess..." like that is the only type of bloodwork they run these days. The lab was in a different building, and not part of her office. But it was little things they said when we were asking directions for directions like "Oh are you a PANDA'S patient?" type stuff. Maybe I was just grumpy from all of the rainy weather, and other challenges that life is throwing our way these days, but I wasn't really feeling the love. Link to comment Share on other sites More sharing options...
nojo Posted October 16, 2009 Author Report Share Posted October 16, 2009 Nojo- I am sorry you had a bad experience- but I have to chime in. I have found Dr Latimer, and her office staff to be unbelievably kind and helpful to me and my children, both when we are waiting and on the phone. I have actually thought (for a doctor's office) they are exceptional in this regard. The first time we were there, my daughter was nervous, and they asked her to feed the fish. Little things like that can be a huge help. As for the lab, I am not sure where you went- she doesn't have a lab. Possibly you were sent to an independent lab in the building like Labcorp. Those places always seem to be a marginal experience- but that is in no way under Dr. L's control. It must have just been an off day- don't let it discourage you.... I agree, she really was wonderful, and helpful. I know that the lab wasn't part of her office. Overall, my experience was very good. Her staff may have been having an off day. It was just little aside type things that were discouraging. I can tell she is very compassionate and knowledgeable. I left feeling relieved, not stressed out. I hope that my rant isn't taken the wrong way, that was our only slight negative in an otherwise very encouraging and helpful day. Link to comment Share on other sites More sharing options...
P_Mom Posted October 16, 2009 Report Share Posted October 16, 2009 Our experience with Latimer and her staff was also nothing but positive. We went in to speak with Latimer for quite a long time while my boys stayed in the waiting room...the receptionists helped us out by talking with them, being silly with them , etc. I am a little surprised she told you to get the swine flu shot asap...she told us not to get it. Perhaps because of the asthma...compromised immune system......etc. Every child is dirrerent. Anyway...must have just been a bad day....we all have those! Faith...don't be scared! Link to comment Share on other sites More sharing options...
nojo Posted October 16, 2009 Author Report Share Posted October 16, 2009 I probably should clarify, as I looked over my early morning typed entry, the lab is a separate entity, and that was the worst part of our visit. Link to comment Share on other sites More sharing options...
smartyjones Posted October 16, 2009 Report Share Posted October 16, 2009 we do have chorea (which I didn't know) can you explain that? thanks. Link to comment Share on other sites More sharing options...
nojo Posted October 16, 2009 Author Report Share Posted October 16, 2009 we do have chorea (which I didn't know) can you explain that? thanks. When my daughter holds out her hands, she can't hold her fingers steady, she looks like she is playing a piano. That shows that the basal ganglia is inflamed, and shows that even though the strep titer test was negative,(we do however always culture positive), her brain has been effected by the strep, and it will most likely show up on the Cunningham lab work. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted October 16, 2009 Report Share Posted October 16, 2009 Hello Nojo: We are homeschooling our son and it is much easier than I envisioned. Please feel free to PM me at any time. I never really fully understood the chorea and I just asked my son to stand with his hands in front and he does seem to play the piano. Wow!!! We have had 2 IVIG's and we are so amazed at the difference in our child!!! Elizabeth Link to comment Share on other sites More sharing options...
ShaesMom Posted October 16, 2009 Report Share Posted October 16, 2009 My dd also has been dx'd with an immune deficiency. She started monthly IVIG back in July and I think it has been a God send for her. You can learn more about immune deficiency's at www.primaryimmune.org click on the publications link and then the Family and Patient Handbook for some good background info. Chapters 1,2, 10 & 18 are a good place to start. Which Ig's did your daughter fail? Is your father the Immunologist??? PM me if you have any specific questions and I will try to help. Link to comment Share on other sites More sharing options...
Char Posted October 16, 2009 Report Share Posted October 16, 2009 nojo, I am glad that your visit went well with Dr.L. I find Dr.L too be very compassionate and understanding. However, I have found some of her office staff not very friendly and not very helpful. So I think maybe some of her office staff needs to be a little more compassionate and understand that it's there job and We are parents, who maybe are a little more sensitive. Because alot of us are stressed and are desperately trying to find help!!!! Doesn't it make it easier for the parent, when office staff is friendly and helpful? I find that anyways.. But I do think Dr.L is a wonderful doctor and I am thankful she is willing to try to help my son. Just wish her office staff was a little more friendly and not so stand offish!!! I agree with Faith, aren't all doctor offices busy and busy with calls etc., that shouldn't make office staff not friendly to patients.... Link to comment Share on other sites More sharing options...
sf_mom Posted October 16, 2009 Report Share Posted October 16, 2009 Swedo talks about this type of Chorea on one of the on-line talks she gives. One of the immunologist we saw that knew nothing about PANDAs said our son also had Chorea but it was more in the way he moved his head at peak of symptoms. I would say our son is very close to TIC free...... I'll keep you posted as we are only 4 weeks post IVIG. -W we do have chorea (which I didn't know) can you explain that? thanks. When my daughter holds out her hands, she can't hold her fingers steady, she looks like she is playing a piano. That shows that the basal ganglia is inflamed, and shows that even though the strep titer test was negative,(we do however always culture positive), her brain has been effected by the strep, and it will most likely show up on the Cunningham lab work. Link to comment Share on other sites More sharing options...
EAMom Posted October 16, 2009 Report Share Posted October 16, 2009 Maybe all PANDAS parents from this forum should start bringing a nice box of chocolates (no See's on the East Coast....bummer) to their first visit (for the office staff)...that might cheer them up and then they might start to love all the PANDAS appointments. Wow...Nojo. That sounds like a great appointment! I'll bet the IVIG will help your dd's asthma as well. It's so great that you are finally getting all this figured out! Link to comment Share on other sites More sharing options...
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