Our visit to Latimer, and Homeschooling questions.

[nojo]

We failed the IGG levels, specifically sub class 1 and 2. We did pass subclass 3 and 4. I'm not really sure how we will proceed. I'm not really surprised, she is sick all of the time. When I made the spread sheet, we don't almost don't need to be on prophylactic antibiotics because there are very few gaps when we are not on antibiotics. When Maddie gets sick, she always goes downhill rapidly, and she has been admitted to the hospital 4 times over the last few years, mostly due to the breathing difficulties. Dr. Latimer did suggest we will be diagnosed with a primary immune deficiency when you look at our numbers and history.

 

I know we need to meet the immunologist, but we are nervous about how to proceed. I hold out alot of hope that IVIG will really help us, but am terrified to put a blood product from so many different donors in my daughter. As it has been said, it is safe for what they know about now, but what about all of the crazy things they don't know.

 

When I looked at our records, the only time we are not sick is during the summer, and the 5 months we were pulled out of school and put on homebound with a tutor supplied by the county. I know we can't live our life hiding, but all this flu stuff is scaring me to death. We are the people with the underlying conditions. Her asthma is currently under control, but the flu (any flu, swine or regular) would land us in the hospital. I'm not sure the school can keep us safe. Does the school have any obligation to report infectious disease if they have an immuno compromised student? I want to explore all of our options before making any decisions. Maybe home schooling will give us a break from illness, and a chance to get stronger.

 

That being said, I do have a meeting with the school next week to also discuss some of this. Any helpful suggestions for the school meeting?

[thereishope]

You can request that the school tells you if someone in the grade has a certain virus. My kids' school will call me if someone in the grade has strep. They will not say which teacher though, just someone in kindergarten. There are 4 kindergarten classes. However, I don't think they are technically suppose to . Now that swine flu has hit, the do post on their website if someone in the school is a probable case but cannot say what the grade it is even due to privacy laws. So, just go in there very polite and calm. The nicer you appear, the more they will bend the rules for you.

[MMC]

We saw Dr Latimer last Friday...drove 4.5 hrs to see her, and it was a great visit. The only issue I have had with her office is trying to communicate over the phone and emails, but this is the case with any doctor, I guess. We did a phone consult back in the summer, but since then, phone calls and emails are not returned most of the time...so we went up there and it was good to sit down with her, develop more of a relationship and let her examine our kids (son, 11 and daughter, 13). Our son has the most issues...she too said he has more chorea than traditional tics. He has exhibited some PANDAS like OCD, but mainly issue is w/ tics (chorea)...which is no surprise since I was diagnosed with Sydenham's chorea when I was 7.

 

They both are now on preventative antibiotics (penvk) and 5 weeks of prednisone steroids. We are especially praying the steroids help our son.

 

We too went next door for a blood draw (not sure what test she requested)...were in/out in about an hour, not too bad...but that office is with the hospital there, not with Latimer.

 

We are scheduled for a follow-up appt in mid December. I don't know about everyone else, but we have paid out of pocket for Dr Latimer phone consults and visits...very expensive, but she is the best we could find and closest, even though over 4 hrs away.

 

- Mark

[nevergiveup]

I am not sure what happened that day you were in but I can assure you that it had nothing to do with your child being a PANDAS kid. Andrea and Faith are some of the kindest office staff I have encountered in doctors offices. And unfortunately I can speak with LOTS of experience in doctors offices. I will not speak about anything personal, but if you were in this week I can tell you that you misread the situation.

 

Good luck with the immunologist. Do not let them give the pnemoccocal vaccine to test titers. Do you have an immunologist, if not ask parents on forum, some immun docs are more familiar with Pandas than others

 

 

 

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.

[dee45]

Hi,

we saw Dr. Latimer in August wonderful appointment. was told to get the Cunnningham test and then we would talk, we got the test and the results came back about the second week of September. I have left 6 phone messages and sent 3 emails with no response very frustrating so now we are heading back up on the 30th. I know these docs. are busy but I feel it is common courtesy to return a call or an email.

 

Deanna

[michele]

NoJo, I am glad you got the confirmation you needed. The office staff were very nice to us over the phone and the day of the visit. Dr. Latimer did take a lot of time to go over our three ring binder wih us also. We were disappoined she could not offer us more help. We had wanted to do the IVIG while we were there for the weekend. We had already been dealing with PANDAS for 7 years. However we did get the script for steroids. I wish I would have gotten a script for antibiotic Azith since we can't get it in OH. We traveled six and a half hours to get there. My husband was a bit mad we didn't really get any more answers then we have gotten other places. She suggested we go to NIMH for an anxiety study that is 9 months and 11 visits to DC. The visit cost us $570 out of pocket plus expenses to DC overnight. The part that has me the most irritated is we never got that report from our visit. I even called about it and never got it. We really got little follow up which is exactly what we have been lacking in the past. We really need that report to give to our local Dr's, school etc. I agree she has just gotten busy and the PANDAS must be taking alot of her time.

 

Michele

name='EAMom' date='Oct 16 2009, 11:57 AM' post='41282']

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!

[Megs_Mom]

Hi,

we saw Dr. Latimer in August wonderful appointment. was told to get the Cunnningham test and then we would talk, we got the test and the results came back about the second week of September. I have left 6 phone messages and sent 3 emails with no response very frustrating so now we are heading back up on the 30th. I know these docs. are busy but I feel it is common courtesy to return a call or an email.

 

Deanna

 

No excuses of course - I know they are slammed - I suggest calling until you get a live person. Andrea is great. Good luck!

[dee45]

Hello,

Andrea is who I have left all my messages with I don't know why I can't get a call back.

 

Deanna

[faith]

michele,

do you know why she couldn't offer more for your child? did she agree with a PANDAS dx? why did she give a script for the steroids? what will you do after that is over? I mean, when you go see this doctor, aren't you basically "their patient" now? or is this all just consultation? I'm confused.

 

 

Faith

[michele]

He was not a clear cut case. More of an alphabet kid. Yes his symptoms are immune related but they are also anxiety related and compulsive related to the anxiety. It seemed to me she was more of a one time deal and didn't seem interested in a return visit. . She suggested NIMH and we haven't decided what to do on that. The steroids were a trial and he actually got more hostile and irritated on them. In that case I don't know how she typically proceeds. Does tha mean IVIG would not be successful?

 

michele,

do you know why she couldn't offer more for your child? did she agree with a PANDAS dx? why did she give a script for the steroids? what will you do after that is over? I mean, when you go see this doctor, aren't you basically "their patient" now? or is this all just consultation? I'm confused.

 

 

Faith

michele,

do you know why she couldn't offer more for your child? did she agree with a PANDAS dx? why did she give a script for the steroids? what will you do after that is over? I mean, when you go see this doctor, aren't you basically "their patient" now? or is this all just consultation? I'm confused.

 

 

Faith

[EAMom]

Michelle...have you ever noticed a difference on advil?

[faith]

michele,

I wonder if the pred had that effect because of interaction with the other meds he is on?

 

 

Faith

[matis_mom]

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.

 

 

Hi there,

 

We are homeschooling (always have), but kids are kids and you will still be exposed to stuff. Even if you keep your PANDAS child home, other family members come and go and bring stuff home. So don't go into it thinking it will cut grealy on the exposure. But the good thing is, if you know there is something going around, it is a lot easier to keep the child home, you don't have to worry about falling behind, you just stay home and get done whatever you can.

It has been a blessing for us on the "bad days" to be able to switch gears and do something else, or just leave school for the afternoon, or just for another day. My son's PANDAS manifests as anxiety and lack of concentration, and some mornings I can tell he is just not there, and there is no sense in trying to get everything done. I can get him to do certain things that will take his mind away from his worries (about washing hands), I can have him do his breathing counts (to help him relax), I can send him to read a good book, etc. On the good days we can catch up and so far, thank God, we have been able to stay on track. I can't imagine how he would have handle this is a school setting.

So do consider it for the flexibility it offers (especially if the OCD is affecting their schooling)

As far as contagion goes, it is so hard! We are trying to keep things "normal" for our ds, so he is still doing soccer and scouts, and we are in a homeschooling coop. I'm in a bind because his anxiety focuses mainly on germs, so he got to a point where he would not go play outside or pet the dog, he would walk around the house with his hands clutched to his chest, he will not touch doorknobs, he does a lot with his elbows and with his feet instead! So if I get too strict about not being exposed to stuff, I am reenforcing his fears... anyone else have the same problem?

Wrestling season starts soon, but I'll definitely keep him out of that one, although he loves it. It's just too much physical contact, and then when they have meets you are stuck in a stinky gym with about 500 other people... I don't think so!

 

Isabel