Saw Immunologist today

[mom md]

We saw an immunologist today and things went well. She said we were her third patient with PANDAS and she was very interested in it. She agreed to contact Madaline Cunningham and Swedo at the NIH. She was also willing to develop a team approach and work with Latimer. We are having no issues after the PEX right now but she agreed to do IVIG if needed in the future according to their protocol. She also felt we neeed to test my son for CVID. We had a ton of labs drawn which will be back in 4 weeks when we go back. She allergy tested him today and he had a significant reaction to probably 75-80% of the things she tested for. She did some additional blood testing but said we definitely needed to pursue allergy shots. She said his immune system is in a "hyper state" and we needed to work to calm it down. Overall, it was a productive visit. We are heading to see LAtimer again next week.

[Suzan]

We saw an immunologist today and things went well. She said we were her third patient with PANDAS and she was very interested in it. She agreed to contact Madaline Cunningham and Swedo at the NIH. She was also willing to develop a team approach and work with Latimer. We are having no issues after the PEX right now but she agreed to do IVIG if needed in the future according to their protocol. She also felt we neeed to test my son for CVID. We had a ton of labs drawn which will be back in 4 weeks when we go back. She allergy tested him today and he had a significant reaction to probably 75-80% of the things she tested for. She did some additional blood testing but said we definitely needed to pursue allergy shots. She said his immune system is in a "hyper state" and we needed to work to calm it down. Overall, it was a productive visit. We are heading to see LAtimer again next week.

 

This is great news! Is she in Charlotte? I am wondering if it is the one I've been trying to decide whether we should make an appt. Either way, I'd love to have her name if she's in Charlotte. Sounds like we need to go see her.

 

Susan

 

Edit... Ah, I found your PM with her name. Since you are now the 2nd recommendation to her, I will be making our appt tomorrow

[bronxmom2]

mom md, you are an inspiration! I was wondering about you guys today, wondering if your son was still doing well. It's so good to hear positive news from someone! We are seeing Dr. Latimer next week, I think my son is not quite as extreme as yours was, but I have the numbers to back me up (Cunningham's tests, etc), and I am really devastated, so I am hoping she will be able to help us. Your story makes me feel we should go straight for PEX, though it sounds traumatic. Thanks for continuing to post... and for advocating for us from the inside.

 

Something tells me we could all benefit from having a little tiny mom md with us in our pockets when we go to drs appointments.

[dcmom]

mommd-

 

That is great news that your son is doing well! It is always uplifting to hear good news.

 

Please keep us updated on the immune testing results. I am trying to find an immunologisttin DC to work with my dd, that will work with Dr Latimer.

 

Please keep us updated on pex results as well. I fear my dd is heading in that direction. Is he on antibiotics now, and if so what kind and dosage? Are you considering having Dr Cunningham's test again to see how his numbers are post pex?

 

thanks,

 

Eileen

[mom md]

mom md, you are an inspiration! I was wondering about you guys today, wondering if your son was still doing well. It's so good to hear positive news from someone! We are seeing Dr. Latimer next week, I think my son is not quite as extreme as yours was, but I have the numbers to back me up (Cunningham's tests, etc), and I am really devastated, so I am hoping she will be able to help us. Your story makes me feel we should go straight for PEX, though it sounds traumatic. Thanks for continuing to post... and for advocating for us from the inside.

 

Something tells me we could all benefit from having a little tiny mom md with us in our pockets when we go to drs appointments.

We are going next Thursday to see her. Please let me know if you have any questions about PEX if you get to that point. I know things always seem better looking back but it really was not a big deal. He truly seems cured too.

[ShaesMom]

Mommd-That is great news! Please keep us posted on the how the Immunological workup goes.

[mom md]

He is on Azithromycin 250 mg qd but I do not think that is right. I think that was fine for treatment but not for prophalaxis. We are going to see a pediatric infectious disease doctor in Nov and I am going to pass the antibiotic torch to her. My guess is we will just follow rheumatic fever guidelines.

I have to say though that I am finally starting to relax a little. I thin I am realizing that PANDAS can be cured if treated correctly. If we are unfortunate to get it again we are now looped into the correct doctors and will just treat it. Hnag in there.

[dee45]

Hi,

who is the immunologist you are seeing?? glad to hear things are going so well.

 

Deanna

[sf_mom]

Fantastic News.... Its so nice to hear good results.

 

-Wendy

[LNN]

I'm really happy for you and your whole family! I know it's been a long road for you.

 

I just wanted to add a quick, if less positive, update on our own recovery. We are three weeks post-pex. The first week showed subtle improvements, mostly in demeanor. The second week saw some heart-breaking steps backward, worse than before we went to Georgetown. Tics seemed to explode and that hideous cognitive fog came back with a vengeance. The difference between this and an exacerbation was that unlike the "healing in reverse" thing people were talking about the other day, this time symptoms would come out of nowhere, then disappear. More like a fireworks display instead of a bell curve of waxing and waning symptoms. We also had a "turning of the pages" event where my son remembered some things from when he was 3.

 

In our third week, many symptoms are subsiding. But the fog remains. I have hope that it will lift and he will return to the kid I saw this summer when he started to heal after his T&A and was strep-free for the first time in a very long time. Unlike many, my son's math ability remains strong during episodes but his reading really really tanks. Over the summer, his reading improved by nearly 3 levels in a month. So to see it all slide away has been heart-wrenching for both of us. But at least he knows he's capable of more and that it's the disease, not an innate lack of ability. And that has helped him hold on to hope.

 

I don't consider the PEX procedure a really big deal. My son took it in stride and I never felt worried. Yes, there were some moments I don't fondly remember. But I was more worried during his T&A than during the Pex. And I do believe he is healing. I'd do it again in a heartbeat.

 

I just wanted to add a note of caution to peoples' expectations. If you're considering PEX, or even IVIG for that matter, I don't think you can expect an immediate or even a linear path of healing. If you get that, awesome! But if you prepare for ups and down, I think it'll make those set backs easier to weather. Nonetheless, I do think it's the right thing to do for those kids who can't seem to get healthy any other way.

 

LLM

[Suzan]

mom_md, we got amazingly lucky and we see her tomorrow! My dd has not been able to walk since Thursday so I am so happy we are going to get started with her. I know we won't have answers tomorrow, but maybe it's a start and maybe a step towards ivig someday.

 

Susan

[ShaesMom]

mom_md, we got amazingly lucky and we see her tomorrow! My dd has not been able to walk since Thursday so I am so happy we are going to get started with her. I know we won't have answers tomorrow, but maybe it's a start and maybe a step towards ivig someday.

 

Susan

 

 

Susan,

 

Congratulations! This is great news that you were able to get in so quickly! How is she doing today? Did she go to school?

 

Sam

[acdrobert]

Hi,

who is the immunologist you are seeing?? glad to hear things are going so well.

 

Deanna

 

 

I am now convinced that I need to bring Thomas to an Immunologist. We just keep getting sick with these little viruses. The viruses don't seem to make him really sick just really tired and of course they make him tic and tic !! Advil continues to help some but its effectiveness seems to be wearing off (just like everything else we have tried) Oil of oregano doesn't really seem to help and it tastes awful.

 

Can someone send me the name of a good immuno doctor. Charlotte is about 5 hours away but I can make that trip. Anyone know of anyone in Raliegh ?

 

Many thanks

 

Anne

[Suzan]

I am now convinced that I need to bring Thomas to an Immunologist. We just keep getting sick with these little viruses. The viruses don't seem to make him really sick just really tired and of course they make him tic and tic !! Advil continues to help some but its effectiveness seems to be wearing off (just like everything else we have tried) Oil of oregano doesn't really seem to help and it tastes awful.

 

Can someone send me the name of a good immuno doctor. Charlotte is about 5 hours away but I can make that trip. Anyone know of anyone in Raliegh ?

 

Many thanks

 

Anne

 

I have not been here yet but I have been in contact with them and this is where we will go if the Charlotte immunologist does not work out for us. They run a clinic and see patients on Friday's. The doctors there have read my daughter's histories and would like to see us. They see PANDAS and other immune related conditions.

 

Dr. Markert and her associate Dr. Ivan Chinn. Dr. Chinn has a clinic on Fridays (Dr. Markert does not have a clinic). Pediatric Allergy/Immunology

Box 3068

Room 103

Research Park Building IV

Duke University Medical Center

Durham, NC 27710

Phone: 919-684-6263

 

So far, in Charlotte, this immunologist seems the most promising - Dr. O'Connor with Carolina Asthma and Allergy. We go tomorrow for the first time.

 

Susan

[Suzan]

Susan,

 

Congratulations! This is great news that you were able to get in so quickly! How is she doing today? Did she go to school?

 

Sam

 

Thanks Sam! She did go to school and had a dentist appt so she left a little early. She fell so badly trying to get on the bus this morning that now her other leg is badly bruised. She was dragging herself around the house tonight by her arms and otherwise I'm carrying her everwhere I can to give her a break School was OK but the walker is killing her (it's really too big). We ordered some crutches that we can pick up tomorrow so hopefully that will help her get around. We went to our chiropractor and he agrees that an x-ray is not needed (he ran one the last time this happened and saw first hand that nothing was wrong). We will go back tomorrow so he can check for any fractures. Otherwise, she will just hang in there and hopefully we will figure something out fast and hopefully the new immunologist will be of help to us somehow. Sorry this got so long in mom_md's post I'll post tomorrow how our visit goes.

 

Susan