Immunologist/Rhematologist/ID Specialist

[Debbie1]

Hi everyone,

 

I has been a long time since I posted so I will start with a brief update.

 

I have two children that were diagnosed with probable PANDAS in October and December 2008.

 

My son was put on prophylactic amoxicillin and results have been dramatic. His antiDNAse B has slowly come down from 2700 in September 2008 to 680 now (still high) and we continue to follow him closely. He has been symptom free for many months now and is doing great.

 

My daughter was put on 7 days of prednisone and started the prophylactic amoxicillin a few weeks later. About 1 week after predisnose her symptoms (primarliy eye tics) were mostly gone. Within a few weeks she was completely symptom free. Titers have come down as well from a high of 960 in November to 340 in June 2009. She remained symptom free for several months until late June 2008 when one of her siblings had a strep infection. Within three days her eye was bothering her again. She cultured negative, but our ped put her on a 10 day course of Duricef (neuro was on vacation) and we sent her off to camp. When we saw her on visiting day, she was significantly improved (about 75%). She came home from camp and one day later symptoms started up again. Culture was negative, but antiDNAse was up to 680. ASO did not change significantly, which neuro thought was odd. Ped put her on 10 days of Omnicef. She is now about 90% better. This past weekend she was exposed to strep again when she had a sleepover. The mom called us yesterday to tell us her daughter just cultured positive. I am watching her like a hawk. She has been complaining that her neck has been bothering her since Sunday night, but I haven't seen any neck tics yet. I think she may have outgrown her amox dose and it needs to be increased. I have to call her doctors today.

 

I am so grateful to everyone here who has helped us - as school is about to start, I can't help but remember how difficult things were for us one year ago and how far we've come.

 

Ok - that wasn't so brief, but here's my question:

 

I have seen lately on the board that many people have been going to see immunologists, rhuematoloists and infectious disease specialists. Has anyone gone to these specialists when their children were doing well? If yes, what are you trying to find out? Who do I go to first? What do I want to find out and what would I tell them is the reason for the apppointment?

 

Thank you so much for all of your help.

 

Debbie

[ShaesMom]

Hi Debbie,

 

Our Ped originally referred us to a Rheumy to rule out Rheumatic Fever and Rheumatoid Arthritis. We happened upon the dx of Pandas on our own through internet research like so many others and knew it fit her to a tee.

 

My dd7 has a food allergy so when it was time this summer for her regular allergy appt I asked her allergy/immuno doc about Pandas, her chronic illnesses, and if we could be missing something. He ran some additional blood work which showed the immune deficiency disease.

 

Have either one of your children been chronically ill since birth? Constant ear infections, sinus infections, or upper respiratory infections? These are common signs of a problem with the immune system. Do you or your husband or extended family members have any autoimmune illnesses? Arthritis, Lupus, MS, Fibromylagia, etc... Family history is also indicative of problems with the immune system.

 

Your regular doctor should be able to order the immunological blood work for you. If not, make an appt with a Immuno and give them your family history, tell them several families with Pandas kids are finding out that the kids have underlying immune issues and you want to explore it with your children. You will want to have IGG, IGG subclasses, IGA, and IGM levels checked in addition to the Pneumococcal Titers, Diptheria Titers, and Tetunas Titers.

 

Several kids have come back showing low levels in IGA, IGG subclasses and the Pneumococcal Titers. My dd is now receiving monthly IVIG based on her test results.

 

You can try finding an Immunologist in your area by calling the Immune Deficiency Foundation at 800-296-4433. Visit their website at www.primaryimmune.org, click on publications and then Patient and Family Handbook. Read chapters 1, 2 & 10 for more information. However, my dd never presented with constant URI's, sinus infections, or ear infections. Other than the chronic strep her main health issues have always been chronic urinariny tract infections and constipation. So, she has more of the GI issues that go along with the immune system.

T

[Kayanne]

We just went to a pediatric rhumatologist on August 11th, and my daughter is/was symptom free at the time...

 

We only went because our daughter's pediatrician had recommended that we go that route because he said that rhumatologists treat autoimmune diseases. He called around and did find resistance to PANDAS, so when he heard this rhumy was "open to PANDAS" he recommeded we go there.

 

Overall, the appointment was a bit of a disappointment....I was hoping he would order the immunological blood work for us...no go.

 

I was able to pick his brain about prophalctic antibiotics, and I left there feeling pretty sure that I want to stop the azith and put her on penicillian.

 

The only positive that came out of the appointment was that he was suprised that my daughter recovered so well on the prednisone, and he said that he would call her pediatrician and tell him that he saw no reason why we could not use steriods occasionally as a treatment option.

[dcmom]

Can you tell me a little about the discussion you had about antibiotics?

[colleenrn]

Hi. I was wondering if you could talk more about your reason to use PCN instead of Zith. My kids are on Zith now and would love to have any input!

Thanks!

 

Colleen

[Kayanne]

Can you tell me a little about the discussion you had about antibiotics?

 

I asked him what the prophalactic protocol for rhumatic fever would be, and he said monthy penicillian injections. He said that in a dish, strep has never shown a resistance to penicillian. It is a narrow spectrum antibiotic, and he specifically used the word "benign" to describe it. Also, it has a proven track record because it has been used for a long time.

 

My DD6 is taking 100 mg of azith, and I have been worried about the effect this will have on her flora. We do probiotics but I still worry.

 

I know that my uncle had RF when he was 10 yrs old, and he took penicillin for twenty years after that. When I asked him how long he took them for, he didn't mention any side effects of being on it for so long.

[dcmom]

I thought they didn't do penicillin injections anymore. I think there is a negative that if you are allergic (or develop an allergy) to penicillin- it is worse in the IM form. Maybe colleen could speak to that. (I am just thinking out loud- as I am also fearful of long term antibiotics). Also, I know that missing a dose can cause you to lose coverage for a day or so. This may not be such a problem now, but when they are older and out a lot....

 

I occasionally see a NY neurologist who is a well regarded TS and Pandas specialist. He changed dd from amoxicillan to zithromax (when it wasn't working). He mentioned something about it being easier on the stomach (maybe because you only have to take it 2x week as compared to daily). Has anyone else heard this, or do y'all think pen is easier on the gut?

 

I am considering switching (maybe to Augmentin), with being able to keep a prescription for zithromax in my pocket to use if we see any flares. I have had the unfortunate experience of not being able to be in contact with my 2 neurologists when dd had a flare of symptoms- so I hate to be without lots of prescriptions...

 

I guess the other thing is if their strep is intracellular- pen might not be able to get it. Have we totally erradicated any intracellular strep with the zith, or maybe it is best to keep them on zith for a year, and then switch.

 

Oy!

[dee45]

Hi Colleen,

My son is pen-v-k 250 mg bid and when we met with Dr. Latimer she adovocated staying on the PCN that she did not beleive zithromax was any more effective it treating PANDAS so why use the bigger gun so to speak.

 

Deanna

[Debbie1]

Thank you everyone for the information.

 

Shaesmom - My kids have been sick over the years with sinus infections, upper respiratory infections, and lots of strep, but no more than all of the other kids around here. My one child that had recurrent ear infections does not have PANDAS. I brought up testing with my ped today. He was against it saying if I am not prepared to do IVIG right now for PANDAS, then why test? He told me that in medical school he was taught to only test for things if you know what you are going to do with the info. I disagree - I believe that in cases like PANDAS, where so little is known, the more info you get about what is going on inside your child the better. He told me I should run it by the neurologist to see if she thinks testing is worthwhile.

 

Colleen - we were started on amox (as opposed to azith) because we were told it is effective against strep (although we know from here that it is not always), it is the primary treatment used for Rheumatic fever, and the least potent leaving plenty of options if resistance results or if there is an infection that needs a stronger antibiotic. During my daughter's most recent exacerbation, the doctor I saw in my ped's office was trying to determine the best antibiotic to treat her with. I suggested azith because I know so many people use it here and Duricef (their ususual recommendation after amox) doesn't always work for us. The doctor said she will get yelled at by the more senior doctors if she prescribes azith for strep - it has a 30% failure rate and she has been yelled at for prescribing it in the past.

[colleenrn]

Kayanne,

I agree that there is no in vetro resistance of strep with PCN (in a dish), BUT it is much different in the body. There are two reasons why PCN may not work on strep. One is that if the strep is intracellular, PCN is ineffective.

 

The second reason is that in the body, with certain other common pathogens (Streptococcus pyogenes and Moraxella catarrhalis), these pathogens cause the strep to adhere to the epithelial cells (coaggregation).

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

I think it is always best to use the "least potent" antibiotic, but these two reasons are why penicillin/amoxicillin do not work sometimes. It was my experience with using thes two antibiotics with my oldest child and not seeing a positive response, that I switched to Augmentin, then a cephalosporin, and finally Zithromax. I am worried that possibly one day the Zith won't be effective, but fingers crossed and lots of prayers, it seems to be working now.

 

DCmom-

It is imperative with PCN that no doses are missed or you will not have coverage. B/c Zith has a long 1/2 life, this is not the case. If you are using PCN, try to give it on a very regular schedule. I too wonder if after using Zith for a long time, would it be best to switch to Augmentin??

 

Dee45-

If PCN is working well for you I would stick with it, but have a low threshold as to symptoms and think about switching if you think it is not working (intracellular strep or coaggreagation). You could always switch to Zith or a cephalosporin, then return to PCN. I definitely disagree with not testing unless you are prepared to treat b/c PANDAS is such a "mystery" that I feel any piece to this puzzle would be helpful.

 

 

Debbie-

What testing did yo ask your Ped about that he declined??

 

Colleen

[Megs_Mom]

I think that is a ridiculous statement "don't test unless you know what to do with it". If we KNEW what was going on, we might know what to do! At this point, I think that Azith and ERP are working well to treat my daughter's sudden onset OCD. However, it has been significantly worse every time. I am not ready to do IVIG at this point. However, I consider this a time of blessed peace, in which I am determined to learn as much as possible about why this periodically attacks her, so that when the next time occurs - I'll have a plan! If it keeps getting worse, we will have to do IVIG. If getting into a specialist takes 2-3 months, and the tests themselves take a couple weeks - why would I let my child suffer for months while I try to figure it out in a panic - again!? And if IVIG is often not covered, and could quite possibly be needed more than once....but is covered if I find an immunilogical cause... Clearly it is our job as parents to do our best to have as many facts in a very mysterious and underresearched disease as possible! Sorry for sounding so strident, but i am SO frustrated by Peds that don't get this. We are not talking about a cold here, we are talking about holding children that are litterally frozen by fear, children who are normal one day, and cannot stop obsessing the next. These are not normal circumstances, and knowing as much as possible so we can make informed decisions is our right and their obligation. So my advice would be to ignore him & find the next doctor that will help you find a good reference. Geez. Susan (Meg's mom).

 

Thank you everyone for the information.

 

Shaesmom - My kids have been sick over the years with sinus infections, upper respiratory infections, and lots of strep, but no more than all of the other kids around here. My one child that had recurrent ear infections does not have PANDAS. I brought up testing with my ped today. He was against it saying if I am not prepared to do IVIG right now for PANDAS, then why test? He told me that in medical school he was taught to only test for things if you know what you are going to do with the info. I disagree - I believe that in cases like PANDAS, where so little is known, the more info you get about what is going on inside your child the better. He told me I should run it by the neurologist to see if she thinks testing is worthwhile.

 

Colleen - we were started on amox (as opposed to azith) because we were told it is effective against strep (although we know from here that it is not always), it is the primary treatment used for Rheumatic fever, and the least potent leaving plenty of options if resistance results or if there is an infection that needs a stronger antibiotic. During my daughter's most recent exacerbation, the doctor I saw in my ped's office was trying to determine the best antibiotic to treat her with. I suggested azith because I know so many people use it here and Duricef (their ususual recommendation after amox) doesn't always work for us. The doctor said she will get yelled at by the more senior doctors if she prescribes azith for strep - it has a 30% failure rate and she has been yelled at for prescribing it in the past.

[ShaesMom]

Thank you everyone for the information.

 

Shaesmom - My kids have been sick over the years with sinus infections, upper respiratory infections, and lots of strep, but no more than all of the other kids around here. My one child that had recurrent ear infections does not have PANDAS. I brought up testing with my ped today. He was against it saying if I am not prepared to do IVIG right now for PANDAS, then why test? He told me that in medical school he was taught to only test for things if you know what you are going to do with the info. I disagree - I believe that in cases like PANDAS, where so little is known, the more info you get about what is going on inside your child the better. He told me I should run it by the neurologist to see if she thinks testing is worthwhile.

 

Colleen - we were started on amox (as opposed to azith) because we were told it is effective against strep (although we know from here that it is not always), it is the primary treatment used for Rheumatic fever, and the least potent leaving plenty of options if resistance results or if there is an infection that needs a stronger antibiotic. During my daughter's most recent exacerbation, the doctor I saw in my ped's office was trying to determine the best antibiotic to treat her with. I suggested azith because I know so many people use it here and Duricef (their ususual recommendation after amox) doesn't always work for us. The doctor said she will get yelled at by the more senior doctors if she prescribes azith for strep - it has a 30% failure rate and she has been yelled at for prescribing it in the past.

 

 

Sorry Debbie, but I would not have a lot of confidence in a Doctor who was concerned about being yelled at by senior doctors nor would I be impressed that she even shared that bit of information with you. Very unprofessional all around.

 

I think you are right to disagree with your Ped on the testing. How does he ever find any underlying issues with his patients if he is unwilling to explore? Sounds like another overpaid doctor who wants to do nothing more than prescribe abx for ear infections and send you on your way. The reason to test is if there is an underlying immune issue your child is going to continue to get sick no matter what abx they are on. AND you would have a solid dx if you need IVIG that insurance should pay for. Sounds like you are definitely going to have to be your child's advocate with this one--find someone who is willing to do the testing. If it all comes back negative at least you've ruled out an underlying immune issue.

 

ARG! I hate doctors with small minds and big pockets!!!

[EAMom]

Debbie...

I have never heard that Azith. has a 30% failure rate (for strep?). I wonder where that doctor got that info from? The link that colleen posted (entrepreneur) does say that amoxcillin has a 35% failure rate for strep throat.

[EAMom]

I should add that for us, Azith. was the only antibiotic (we tried 4) that really worked for our dd's pandas when her symptoms were severe in Spring 08. We found initial mood improvement with Augmentin , but still lots of OCD/other issues (both dd's were culture positive so both were put on it; non-pandas dd5 was thought to be a carrier). The (stanford univ) pediatrician chose Augmentin over Amoxicilln b/c "it is more clinically effective". When we switched to Amoxcillin (for longer term prophylaxsis), PANDAS dd7 started to spiral downward again. We found out that dd5 wasn't cleared of her carrier state on Augmentin...so PANDAS dd7 also had re-exposure there. We put PANDAS dd7 on a 2nd (or 3rd?) generation cephalosporin (stronger version of Keflex) and that did nothing. We placed younger dd5 on Azith. and that cleared her. We placed pandas dd7 on Azith (she was bad enough that the eating disorder clinic was recommending we re-hospitalize)...within 10 days she had significant improvement in both OCD/mood/and eating. After 1 mo. on Azith (and advil) she was about 95%.

 

I think my kids may have had intracellular strep...but we also feel that a big part of why Azith. really helped my dd-is that it is immune-modulating and anti-inflammatory. Our Stanford immunlogist agrees (and told us that it is the only anti-biotic that has this property.) (She's been on 250mg/day since June 08...we notice a change when we drop to 125mg/day.)

 

With time, we found our dd had a baseline change/exacerbations (nothing like the ###### of spring 08 though) (she didn't get strep herself but reacts to exposure and other illnesses) through out the next year...hence our recent IVIG.

[Debbie1]

Colleen - I had asked my pediatrician to run the immunological blood work.

 

I agree with everyone here that the doctor was wrong on this one. And that the younger doctor was unprofessional when we saw her. I do not know where she got her statistics. I am just reporting what she told me.

 

In all fairness to my pediatrician (the senior one that I usually see), he has really been great and overall very open minded through our whole PANDAS ordeal. He has helped us tremendously. This time I think he made a mistake. I can push him more on it and I may get him to test, but I would prefer to try to get our neurologist to agree first and try to avoid the confrontation.