Met with Immunologist today

[Suzan]

Well, I guess it's no surprise that the new immunologist did not know about PANDAS, didn't know what it was and was VERY suspect of the claim that it would affect the brain since "not much at all will cross the blood brain barrier" and he was not aware of how behavior and other neurological issues could be created from an autoimmune disease (that worries me though). He did not receive any of the articles I sent earlier for his review. Oh well.

 

But, the good news is that he is testing dd7 for IgA, IgM, IgG (and subclasses), some rheumatic test and a few other immune related tests (Shaesmom, he's doing the 14 strep related tests but I can't remember what it's called). He also is going to do a full allergy workup on her. I feel like he is doing everything I wanted him to do since I already know she has PANDAS I don't really need him to believe it since I don't need treatement from him (since I'm not trying to convince him we need IVIG right now). I should have the immune test results back in 2 weeks at our next appt.

 

He tried to convince me that dd was probably not allergic to dairy because "most kids grow out of it by age 5 or 6 so true dairy allergies are rare" and also said that "wheat allergy is very rare, did you know that?" And that if diagnosed through a blood test, it was highly likely that the allergy test was false. But I know for a fact that I can't eat any spec of wheat or I get itchy so badly and have a horrible histimine reaction and I had a positive wheat allergy test. (just a side note since I want to vent about him)....But, those were the only things that were annoying, the know it all attitude before really finding out what is going on.

 

Anyway, all in all, I feel hopeful that we will either figure something out or rule some things out. But, if I really need a doc to listen to us regarding her neurological issues, maybe I'll have to see a ped neurologist.

[mom md]

I am planning to take my son to an immunologist in Sept so I was interested in your visit. The one we are seeing is "interested" in PANDAS but I have no idea if she has any experience. We are done with PEX and doing great though so I am really just going to pick her brain. I want to explore the allergy issues and try to see if I can help build up his immune system. My son has several significant environmental allergies butI want to explore the diet ,etc. I did hear from a doctor today that the only real way to test for a gluten allergy is through a stool test so my guess is he may be right on that point. My hope is that even though she has no real expertise with PANDAS I can educate her and if we ever need treatment again to see if we can do it in Charlotte. Latimer was great to confirm the diagnosis and execute treatment and I would definitely go there again for treatment but I think I would sleep better if I knew someone in Charlotte could handle this if needed. We are not a candidate for IVIG unfortunately and will need PEX due to an allergic response to plasma proteins. One of the main problems with this disease is it crosses over so many specialties...neurology, immunology, psychiatry, infectious disease, etc. I have considered seeing an infectious disease doctor to to mange the long term antibiotic issues. It is almost like you need a doctor in each field to put thier two cents in in order to figure it out!

[Suzan]

I am planning to take my son to an immunologist in Sept so I was interested in your visit. The one we are seeing is "interested" in PANDAS but I have no idea if she has any experience. We are done with PEX and doing great though so I am really just going to pick her brain. I want to explore the allergy issues and try to see if I can help build up his immune system. My son has several significant environmental allergies butI want to explore the diet ,etc. I did hear from a doctor today that the only real way to test for a gluten allergy is through a stool test so my guess is he may be right on that point. My hope is that even though she has no real expertise with PANDAS I can educate her and if we ever need treatment again to see if we can do it in Charlotte. Latimer was great to confirm the diagnosis and execute treatment and I would definitely go there again for treatment but I think I would sleep better if I knew someone in Charlotte could handle this if needed. We are not a candidate for IVIG unfortunately and will need PEX due to an allergic response to plasma proteins. One of the main problems with this disease is it crosses over so many specialties...neurology, immunology, psychiatry, infectious disease, etc. I have considered seeing an infectious disease doctor to to mange the long term antibiotic issues. It is almost like you need a doctor in each field to put thier two cents in in order to figure it out!

 

I was thinking that yesterday too, about needing a doc in each field... Let me know how your immunology appt goes in Sept. If you like her, we will switch over. There is a woman in his practice that was recommended to me after we made this appt. If I decide this guy is not up to it, I'll try her too.

 

So glad things are going well for you after the PEX!

 

Susan

[ShaesMom]

Susan,

 

This is great news. I'm sorry that he doesn't believe in Pandas but like you said at least he is running some addt'l tests on her immune system. Pneumococcal Titers is the name of the test. Please let me know what you find out.

 

As far as the allergies, my dd7 has had both the skin test and blood test for her dairy allergy since age 1 and both always come back positive. Kinda of scary that he doesn't believe in wheat allergies.

 

Mommd-Can your son not have IVIG because he is IGA deficient?

 

Sam

[mom md]

No, he is not IGA deficient but is in the 1% of people that have an allergic (serious) reaction to the plasma proteins in the pooled blood serum. IVIG has more pooled blood product than PEX with albumin so he has to do PEX in the future (and be on IV steroids around the clock when he does it). Luckily we were in an ICU when he had the reaction so the whole thing was handled correctly.

[colleenrn]

It is hard to believe that an immunologist would be confused as to autoimmune disorders causing neuro symptoms when Sydenham's chorea was discovered over 300 years ago.

 

I was wondering if I should have the 14 strep titers and pneumococcal titers done with my children. If you know your children have PANDAS, what would these titers show you? Also, they are on prophylactic antibiotics, so would there be any use in doing them now?

 

Just received the kits from Dr. Cunningham and will probably do them at the end of this week.

Thanks,

 

Colleen

[Suzan]

It is hard to believe that an immunologist would be confused as to autoimmune disorders causing neuro symptoms when Sydenham's chorea was discovered over 300 years ago.

 

I was wondering if I should have the 14 strep titers and pneumococcal titers done with my children. If you know your children have PANDAS, what would these titers show you? Also, they are on prophylactic antibiotics, so would there be any use in doing them now?

 

Just received the kits from Dr. Cunningham and will probably do them at the end of this week.

Thanks,

 

Colleen

 

This doc (and Diana P. too I think) said that the antibiotics would be OK to be on while doing these tests. I totally agree with you about hard to believe about his confusion. Also, if the AARDA says it's a real autoimmune disease, shouldn't they all have at least heard of it? That really confuses me!

 

http://www.aarda.org/research_display.php?ID=47

[chrisw]

Hi MomMd and all,

My son had IVIG in April this year. He continues to do well, with a few minor blips. Let me explain what I mean by this. Almost all of his symptoms are about 90% better than pre IVIG most of the time. I have noticed a mouth stretch "tic" that seems to occur after exposure to pool water. It usually happens occasionally for about 2-3 days after and then dies out. Also, he developed an ulcer in his mouth that lasted about a week (these used to last about 2-3 weeks before IVIG) and with this, his nightime separation anxiety kicked in, but in a milder form. He began a lip licking tic that only lasted about 3-4 days. He also seemed to have a stomach issue along with this "viral" type episode. He ran no fever, just loss of appetitie and a little nausea. Anyway, all these symptoms faded as he felt better, with the exception of the sep. anxiety, which is gradually improving. I emailed Dr. K when I noticed all of this, and he wanted me to double his abx. for 10 days. I actually didn't do this, because I wanted to wait and see if it got worse, which it didn't and then quickly improved.

 

To Mommd,

I think I would like to have my son tested for immune deficiencies also, because I am suspicious that he may have this because of his history. I realize that treatment for some of these deficiencies is IVIG on a regular basis and my question to you is do you think a deficiency will show up in my son post IVIG? Would just one IVIG possibley cure a mild immune degiciency? I know you are not an immunologist, but I respect that you probably have a better grasp on this than most of us. I think I am getting nervous because school is around the corner, and I see that he does have mild reactions to sickness (this does not surprise me). Wish I had gotten him tested pre-IVIG. Thanks for any input you or anyone else has on this subject,

Christie