Quinn's Immunological Results - Advice?

[nevergiveup]

Hi. Elizabeth, You sure have found some good doctors. My child also failed the pnem titers except two, plus has low IGG, low subclass 1, low C4, high ANA, etc..... Chronic infections except my immunologist doesn't know anything about PANDAS. Could you please private message me your doctors name?

 

Thanks,

 

 

Hello:

 

We just got back our immunological work up and wanted to share our results and the doctors treatment plan to get some feedback.....

 

Quinn had IVIG at Dr. K's dosage level with a Pediatric Oncologist 2 weeks ago. Prior to the IVIG, we drew his blood and just got back the results today.

 

He failed all 14 of the Pneumoniae titers. He also failed the Hep B titer.

 

He was normal on the IGG 1-4 subclasses, but on the very lower end of normal. He was normal for the IGM and IGA and high for the IGE (allergy related)

 

He was positive for Epstein-Barr,

 

He was high for Isohemagglutinin Titer.

 

And his T and B cells were abnormal.

 

This immunologist says that he treats and believes in PANDAS, but he wants me to realize that PANDAS is just the symptom and not the problem. The problem is the weakened immune system! He said if the symptom wasn't PANDAS, then it could be another autoimmune disease. We discusses my daughters GI issues and he said that can be how she responds to a weakened immune system.

 

Now the biggie...... he wants us to do IVIG every 2-3 weeks for 6 months. It will be at a lower dose than Dr. K's recommendation. Any thoughts??????

 

Elizabeth

[dcmom]

Hi shaes mom- thanks! I may go to one of the "doubters" for testing- if they can run those tests- but I really would rather see someone who could offer treatment. We are all so sick of running around to doctors... Children's hospital here seems to have a big dept, but I have to get a doctor to send them a letter of referral (not for insurance) and then they will decide if she needs to be seen by them (ugh).

 

We are seeing the hem/onc and infectious disease doctors at Georgetown this week. Maybe they will have some suggestions. Just want to get the legwork done, before (if) she goes into another exacerbation...

[P_Mom]

Shae's Mom,

 

 

I don't know yet...they referred me to a different immunologist to take over our case....the appointment is Oct. 15....won't know until then. UGH!

 

I am currently waiting for Dr. Latimer to call me back for our phone consult today....perhaps she can shed some light on this.

 

Kelly

[dcmom]

Please let us know what Dr Latimer says...

[smartyjones]

dc mom - did dr latimer send you to georgetown for testing? i'm with you in frustration that "all roads lead to hopkins". a few neurologists in my area that don't see kids have cheerily referred me to hopkins. i wrote to anxietybc.com - based in British Columbia - for a psych referral b/c i like their info on the website. it went down a little road and ended it up at - hopkins

 

my son is doing fairly well now so i'm trying to get ducks in a row for the future and trying to not take the initial $ hit for latimer if i can do some of it under insurance. it doesn't seem so promising to do it this way.

 

please keep me posted on what happens at georgetown.

 

thanks,

Kathy

[dcmom]

Kathy-

 

We are going to Georgetown, not really for testing, but in preparation for pex.

 

I have not gotten an immunologist to do testing, Dr L wants to get someone who will work on pandas, I am trying to be patient. I will let you know if she finds someone.

 

If I were you, and you don't want to spend the $ to see Dr Latimer- here are some thoughts. Her original visit is pricey, but she charges less than half of that for follow ups, so in reality it is a one time hit. I feel it is beneficial to start a relationship with her for future. If you don't want to do that now, I would get the Cunningham test done on your own (if you haven't), even if it is a baseline since he is doing well. She likes to see those numbers. I would definitely document everything yourself. Have you seen a psychologist?

 

I guess what I am saying, is if you hold off seeing her, I would try to document a pattern of pandas for when you see her.

 

Is your child on antibiotics?

 

Eileen

[P_Mom]

DC Mom,

 

I'll fill you in tomorrow...or no...I meant Saturday.

 

Kelly

[Ellen]

My son also had the immunological testing done recently by an immunologist who has treated a few other PANDAS cases. In addition to a Selective IGA 2 deficiency, he has a low total IGG (593) and is low in IGG subclass 4. Also, he has low IGM and failed 12 out of the 14 strept pneumoniae serotypes with numbers less than 1. The immunologist is strongly encouraging us to consider monthly IVIG with him. What surprises me with all of this is that over the last year and a half (since he started seeing a DAN doctor and got on a gfcf diet and numerous immune supporting supplements) he has not been sick except for a couple of colds and some seasonal allergy flare ups. He still has significant OCD and focusing problems and right now I am thinking that that best plan for him would be to pursue PEX with Dr. Latimer (I am waiting to hear back from her) and possibly follow up with monthly IVIG with the immunologist who did the testing. The immunologist feels that because of his Selective IGA2 deficiency, he would have to give him a form of IVIG without IGA in it. Otherwise he says his chances of an allergic reaction to the IVIG could be as high as 40 percent. According to the immunologist, giving the IVIG without the IGA eliminates the risk of allergic reaction and is just as effective.

 

Ellen

 

 

 

 

Shaesmom, Diana-

 

Do we know what number of total kids that have gotten tested vs how many have failed some portion of immunology?

 

I am so frustrated in trying to find an immunologist to do this testing- am trying to get someone that will coordinate with Dr Latimer, but seem to be dead ends at Gtown. I have an allergist who will do the testing- but don't know if they will really do the treatment. National Children's Hospital in DC has an immunology dept- guess I will try there. I kind of want to have the testing done by a dr that is prepared to follow through with treatment.

 

Since we are close to Baltimore (hopkins), I think we have lots of non believers in the area...

 

Eileen

 

I don't know the exact number who have been tested. I'll have to check with Diana. I did read a post last week or earlier this week from a Mom whose child did not fail the titers or Ig's. But that is one out of the approximately 15 that I believe have had the blood work. With my dd-it looks like a total of six have actually rec'd a dx of an immune deficiency and four of those will be have monthly IVIG for six months or longer.

 

I need to make a better list but just haven't had the time.

 

Can you have your Ped or someone run the tests and then you can try finding an Immunologist with results in hand if there are irregularities??

[Kayanne]

Ellen,

 

Pursuing the PEX make a lot of sense to me...It filters out the antibodies that are currently in the blood. It is like starting with a clean slate.

 

I have to admit that my husband and I can't seem to grasp why IVIG helps PANDAS kids if antibodies are the culprit....It must be related to the fact that many of these kids are having immune issues. If somebody can enlighten me, I would greatly appreciate it.

[Megs_Mom]

The answer that I get on this, is that no one really understands how IVIG works. If it is giving you enough "good antibodies" that they are able to handle the bodies own system more effectively (ie not attack the host) or if they are going in & killing or removing the hyper antibodies and replacing them. But IVIG does work for a number of auto-immune issues, in which hyper antibodies are the issue. Maybe there are a number of 'reasons" a child being vulnerable to gettin PANDAS.

 

Ellen,

 

Pursuing the PEX make a lot of sense to me...It filters out the antibodies that are currently in the blood. It is like starting with a clean slate.

 

I have to admit that my husband and I can't seem to grasp why IVIG helps PANDAS kids if antibodies are the culprit....It must be related to the fact that many of these kids are having immune issues. If somebody can enlighten me, I would greatly appreciate it.

[ShaesMom]

Ellen,

 

Pursuing the PEX make a lot of sense to me...It filters out the antibodies that are currently in the blood. It is like starting with a clean slate.

 

I have to admit that my husband and I can't seem to grasp why IVIG helps PANDAS kids if antibodies are the culprit....It must be related to the fact that many of these kids are having immune issues. If somebody can enlighten me, I would greatly appreciate it.

 

 

I wish someone would explain to me how PEX is able to cure some of these kids.

[ShaesMom]

An important use of plasmapheresis is in the therapy of autoimmune disorders, where the rapid removal of disease-causing autoantibodies from the circulation is required in addition to other medical therapy. It is important to note that plasma exchange therapy in and of itself is useful to temper the disease process, where simultaneous medical and immunosuppressive therapy is required for long-term management. Plasma exchange offers the quickest short-term answer to removing harmful autoantibodies; however, the production of autoantibodies by the immune system must also be suppressed, usually by the use of medications such as prednisone, cyclophosphamide, cyclosporine, mycophenilate mofetil, rituximab or a mixture of these

 

Okay, so you remove the autoantibodies immediately with PEX. but the body is going to remake antibodies after a few weeks and if your immune system doesn't function properly to begin with then how does the PEX prevent the new antibodies from going haywire? According to above-it doesn't. There will still be an immune issues.

 

Am I getting any of this right or am I completely off base??

[Kayanne]

An important use of plasmapheresis is in the therapy of autoimmune disorders, where the rapid removal of disease-causing autoantibodies from the circulation is required in addition to other medical therapy. It is important to note that plasma exchange therapy in and of itself is useful to temper the disease process, where simultaneous medical and immunosuppressive therapy is required for long-term management. Plasma exchange offers the quickest short-term answer to removing harmful autoantibodies; however, the production of autoantibodies by the immune system must also be suppressed, usually by the use of medications such as prednisone, cyclophosphamide, cyclosporine, mycophenilate mofetil, rituximab or a mixture of these

 

Okay, so you remove the autoantibodies immediately with PEX. but the body is going to remake antibodies after a few weeks and if your immune system doesn't function properly to begin with then how does the PEX prevent the new antibodies from going haywire? According to above-it doesn't. There will still be an immune issues.

 

Am I getting any of this right or am I completely off base??

 

No, not off base at all...I think it is all becoming clearer to me....here we go...just my theory....

 

As far as autoimmune diseases go, PANDAS is one that needs an outside trigger to get the autoantibodies circulating...if you filter them out, they will only be produced again if exposed to strep, and or maybe a much less amount with a viral issue...so If you filter the antibodies and control future strep then it would be essentially a good way to manage it--could even be considered a "cure". Personally, I don't think there is a cure...just effective ways to manage it. Swdeo's experience with PEX has been that if strep returns the symptoms return.

 

Remember, the medical model for PANDAS was RF and SC, both of which are believed to be casued by several factors combining: the right strep stain, strep that is not properly treated, and genetic vurnerability. So once a family is aware of PANDAS, strep is treated aggressively...thus lessening the chances of another severe exercabation.

 

I know my daughter's strep wasn't treated properly...there are many whose story starts with the PANDAS symptoms, then led them to a strep infection.

 

Now lets take it a step further, and factor in what we are now learning about PANDAS kids immune systems, and that explains why IVIG has been working. And also why it may take longer and stronger courses of antibiotics to clear the strep.

 

Please correct me if I'm wrong on this but isn't the purpose of IVIG to bring the immune system to somewhat of a baseline? If a child's immune system seems to be working the way it should, then wouldn't the brain have time to heal also?

 

What I don't understand about IVIG is how does it address the autoantibodies....does it neutralize them?

 

Another question my husband and I have been asking, is why after these procedures an anti-inflammatory like prednisone isn't prescribed to address brain inflammation.....wouldn't the recovery be quicker?

[nojo]

Hello all. Thank you for such helpful posts. I have posted here a few times before, and haven't been able to in the last little bit. We have been on a bender of late. Add me to the list with the immunological workup. I am in the process of getting a copy of the blood work. Two years ago we had this done when diagnosing our asthma, and guess which part we failed...the pneumococcal titers. We were re vaccinated and I am not sure how we re tested or where we are at now. I can pretty much say we are not doing well. Also, I believe our IGG numbers were low.

 

Currently, we have had strep twice in 6 weeks, we are sorting our food by size and our having violent outbursts. Getting my daughter to eat is a challenge, and finding clothing that doesn't irritate her also a chore. She is finally becoming rational, and not hitting me every day. We just finished our last round of antibiotics less than one week ago, and her sister (who was also on antibiotics) tested positive again yesterday for strep. I have found another pediatrician locally from someone on the board who has had positive results. We have an appointment in two weeks, (the first available) and we are going to request the full Cunningham blood work panel to be done, and if it does not include it, and immunological work up for her and her sister. Something is not right. Both of my children have strep monthly, and one of them reacts violently. I have treated my husband, myself, my dog. I have sterilized everything in my house. We have ripped out all of the flooring and replaced it, we have switched schools, we change our tooth brushes, and again yesterday, we are positive. When I saw about the blood work, I remembered about ours, and I'm getting a copy. I am positive we failed that part of the test and they had even mentioned ivig to us before because our other numbers were low (although apparently not low enough). This gives me some hope. Thanks.

 

 

Hello:

 

We just got back our immunological work up and wanted to share our results and the doctors treatment plan to get some feedback.....

 

Quinn had IVIG at Dr. K's dosage level with a Pediatric Oncologist 2 weeks ago. Prior to the IVIG, we drew his blood and just got back the results today.

 

He failed all 14 of the Pneumoniae titers. He also failed the Hep B titer.

 

He was normal on the IGG 1-4 subclasses, but on the very lower end of normal. He was normal for the IGM and IGA and high for the IGE (allergy related)

 

He was positive for Epstein-Barr,

 

He was high for Isohemagglutinin Titer.

 

And his T and B cells were abnormal.

 

This immunologist says that he treats and believes in PANDAS, but he wants me to realize that PANDAS is just the symptom and not the problem. The problem is the weakened immune system! He said if the symptom wasn't PANDAS, then it could be another autoimmune disease. We discusses my daughters GI issues and he said that can be how she responds to a weakened immune system.

 

Now the biggie...... he wants us to do IVIG every 2-3 weeks for 6 months. It will be at a lower dose than Dr. K's recommendation. Any thoughts??????

 

Elizabeth

[ShaesMom]

Can't answer the steroid question but according to the excerpt I copied-then it looks like "yes" you should follow up with something.

 

I'm not sure that IVIG would bring the immune system to a "baseline". What it does is gives the body healthy IGG antibodies that can then attack any of the foreign invaders that are lingering in the body still.

 

When you have someone with an immune deficiency either they do not make enough of the antibodies (low Ig's or subclasses) or the ones that they do make are worthless (defective antibodies)-they do not go to work or even recognize a foreign invader. My immuno explained it like this:

 

Our body=house

Our antibodies=dog

Bacteria=thief

 

In a healthy immune system when the thief enters the house the dog will attack it. In an unhealthy immune system when the thief enters the house the dogs sits and wags his tail at the thief but does not attack him.

 

So, the IVIG gives the body plenty of healthy Igg's that immediately attack the bacteria that was floating around untouched by the faulty Igg's. So, my thinking is that when given IVIG for Pandas-the healthy antibodies eridicate any of the remaining strep that may be left over. But that brings up the question of why didn't the abx kill all the strep bacteria?? Can't answer that one. Is it possible that the abx can't "reach" the inflammation in the brain (can abx cross the BBB?) and that the healthy Igg's do? the steriods would bring down the inflammation but that affect isn't always long lasting right? So, let's say there are some left over autoantibodies hanging out in the basil ganglia-having a party-all of a sudden the healthy Ig's arrive and surrounded them and kill them. No one more autoantibodies attacking the brain- so slowly over time the inflammation would start to subside and pandas symptoms would decrease.

 

What do you think? Make sense? Way off base??