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Quinn's Immunological Results - Advice?


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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

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Elizabeth-

 

I think that is great news! My dd7 was the first on this forum (I believe) to be dx with an immune deficiency disease. She has had monthly IVIG for three months now and IMO it is the best thing to have happened. She receives it every 4 weeks.

 

It is AWESOME to hear an Immunologist say that Pandas is just the symptom and not the problem! I tell you what you are the third person in two days to say that your child has been dx'd with an immune deficiency disease and montly IVIG is the treatment plan. The other two were by private email to me. Did you get a dx of Selective or Specific Antibody Deficiency? Common Variable Immune Deficiency?

 

I just say Thank God we may finally be on to something here! I have goosebumps! This may be the missing link for all of us!

 

My daughter is scheduled for an endoscope & colonoscopy on Monday to explore the GI side of this. She has had problems since age 2 so I'm scared to find out what may be going on. I also found out today through an Ultrasound that their is a problem with her kidneys but of course they didn't tell me anything else.

 

It's been a long day at my house but I have several posts regarding the immune deficiency diseases and where you can find more info. Here is one of those posts to get you started:

 

http://www.latitudes.org/forums/index.php?...art=#entry36601

 

I have some other great information I can get to you tomorrow.

 

This is a good thing--you wouldn't have wanted it to go undx'd because the chances of your child getting better would have decreased significantly.

 

Many people receive IVIG monthly.

 

Sam

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Elizabeth-

 

I think that is great news! My dd7 was the first on this forum (I believe) to be dx with an immune deficiency disease. She has had monthly IVIG for three months now and IMO it is the best thing to have happened. She receives it every 4 weeks.

 

It is AWESOME to hear an Immunologist say that Pandas is just the symptom and not the problem! I tell you what you are the third person in two days to say that your child has been dx'd with an immune deficiency disease and montly IVIG is the treatment plan. The other two were by private email to me. Did you get a dx of Selective or Specific Antibody Deficiency? Common Variable Immune Deficiency?

 

I just say Thank God we may finally be on to something here! I have goosebumps! This may be the missing link for all of us!

 

My daughter is scheduled for an endoscope & colonoscopy on Monday to explore the GI side of this. She has had problems since age 2 so I'm scared to find out what may be going on. I also found out today through an Ultrasound that their is a problem with her kidneys but of course they didn't tell me anything else.

 

It's been a long day at my house but I have several posts regarding the immune deficiency diseases and where you can find more info. Here is one of those posts to get you started:

 

http://www.latitudes.org/forums/index.php?...art=#entry36601

 

I have some other great information I can get to you tomorrow.

 

This is a good thing--you wouldn't have wanted it to go undx'd because the chances of your child getting better would have decreased significantly.

 

Many people receive IVIG monthly.

 

Sam

 

Let me clarify, obviously I don't think it is great news that your son has been dx'd with something else. I'm sure you knew what I meant but I couldn't sleep last night because I kept thinking about how bad it may have sounded to say it was great news! :)

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Keith and Elizabeth,

 

I know it must be so hard to have gotten this news, even though I am sure it is not shocking. Even with my dd, we KNEW she had pandas- but something about having it written in black and white (Cunningham's study) brings those original emotions up again. I mean with pandas, most of were puzzled about our kids for a while, and then had to fight the doctors to get them to believe it might be pandas. All the while our child is suffering. We never get the time to really absorb and grieve over a diagnosis.

 

But, that being said, I do think it is good news. I pretty much think monthly IVIG is probably the best treatment (maybe with pex first) for many of these kids. You won't have to fight for your son anymore- he will get treatment. I am sure you have been down a long and difficult road- but hopefully this is the beginning of getting things back to "normal".

 

A friend's daughter has monthly ivig for severe asthma caused my immune issues. It has been a life changer for her and her family.

 

So- has anything happened with your non pandas child (who tested high on Cunninghams' study)? Can you give me a little insight into the GI issues? I am having my non pandas daughter tested by Dr Cunningham because she has had anxiety producing stomach aches since she had the same strep throat that cause pandas daughter's sentinal episode. I wonder if I should consider having her tested by the immunologist....

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I am just curious if the IVIG that you had with Dr. K would change the results if you did another workup?

 

Shaesmom, do you know if they would?

 

Maybe because you did the procedure already at a higher dose, you've gotten some benefits from it and the immune system might re-set at a different point, and you could do the routine IVIG procedures less frequently.

 

I don't know much about it, but the recommendations that are being made to you right now are based on a blood draw that was prior to the IVIG.

 

Just some random thoughts...

 

Karen

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Hello:

 

I was in shock when I looked at the blood work results because Quinn has been a somewhat healthy boy up until our PANDAS diagnosis.

 

I feel like this doctor is right about wanting me to look at PANDAS as a symptom and make the overall functioning of the immune system our priority. He did say that the IVIG will help his immune system to mature and that it would probably only take 6 months. Now this doctor is known as an "aggressive" doctor in terms of treatment, but he is also known as "brilliant." So, I think I will follow his treatment plan.

 

He did say that their clinic does PEX as well as IVIG, but he really preferred IVIG for our situation because IVIG will help with the underlying immune situation although it will take several sessions to complete the treatment.

 

He further explained why some of these children are failing the vaccine titers. He said that at the time of the vaccine, if the child's immune system is weak, they will not make the antibodies to the vaccine and the vaccine basically dissipates in the body.

 

In terms of my daughter's GI issues, we drew blood yesterday for a full immunological work up on her as well. I do have to day that I have been giving her a high dose of prebiotics in the morning and then 125 billion cfu's of probiotics in the evening and she is doing so much better. She has not had any stomach aches since 1 week after I started this regimen. And in terms of her high Cunningham bloodwork, the doctor said that the gut and the brain are always communicating and she definitely has inflammation somewhere and again we need to study her basic immune system.

 

Thank you all for your support. I feel like we are learning so much from each other.

 

Elizabeth

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I am just curious if the IVIG that you had with Dr. K would change the results if you did another workup?

 

Shaesmom, do you know if they would?

 

Maybe because you did the procedure already at a higher dose, you've gotten some benefits from it and the immune system might re-set at a different point, and you could do the routine IVIG procedures less frequently.

 

I don't know much about it, but the recommendations that are being made to you right now are based on a blood draw that was prior to the IVIG.

 

Just some random thoughts...

 

Karen

 

My initial thought is "yes" it would change the results. But it may not be a long term change. The immunoglobulins live for approx. 3-4 weeks and then they start to die off on their own. It is recommended that you wait 3-4 months before retesting the Ig's and titers after IVIG so that you may get more accurate, true results.

 

Doing IVIG less frequently would just open the door for a new infection.

 

I wish I could say I completely understood why a large two day dose of IVIG seems to be benefical to so many but I can't. My inital thought is that maybe those children do not have an underlying immune deficiency. I believe Dr K states an 80-90% success rate with one IVIG treatment. Maybe the kids who have immune issues fall within the other 20%.

 

Excert from IDF publication:

It is important to understand that the immunoglobulin

that is given partly replaces what the body should

be making, but it does not help the patient’s own

immune system make more. Unfortunately, the

immunoglobulin only provides temporary protection.

Most antibodies, whether produced by the patient’s

own immune system or given in the form of

immunoglobulin, are used up or “metabolized” by the

body. Approximately 1/2 of the infused antibodies

are metabolized over 3 to 4 weeks, so repeat doses

are required at regular intervals. Depending on the

route of administration, this may be done by giving

small infusions under the skin as often as every 2 or

3 days, or larger intravenous infusions once every 3

or 4 weeks. Since it only replaces the missing end

product, but does not correct the defect in antibody

production, immunoglobulin replacement is usually

necessary for the patient’s whole life.

 

Currently Shae receives IVIG every 4 weeks. The week before her treatment she has an increase or return in some of her symptoms. Especially the leg pain and fatigue. Both disappear the day of the infusion.

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Elizabeth-

 

thank you. Can you tell me, were your daughter's issues primarily stomach aches? What type (and brand) of probiotics do you give her?

 

If the vaccines dissapate in these kids when they originally get them, does your immunologist want you to get them again?

 

thanks,

 

Eileen

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Hi Eileen:

 

We never broached the subject of revaccinating. I did do full vaccines on both of my children, but I do have some regrets now. I wish I was a little more selective with them and did a little more research.

 

In retrospect, my daughter had mild stomach aches when she was little which were attributed to constipation. I never knew until we went to the doctor because she did go to the bathroom everyday without problem, but he doctor said that she still had constipation issues based on her physical exam.

 

This summer she had such severe stomach aches followed by a serious GI infection (rectal bleeding) that was completed unexplained. Everything came back negative.

 

I will PM you about probiotics.

 

Elizabeth

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Well, just got off the phone with my son's immunologist.......you can add another child to the falied s. pneumonia titers (after full Prevnar vaccination), slightly low total IGG and slightly low IGG subclass 1. My older son, who is a MUCh milder version of PANDAS, (Cam Kinase 112, almost normal.......younger son, 162), faired much better on his immunological work-up...passing (although barely) the S. pneumonia titers vaccinated for (except 1, but it was close)....immunoglobulins (IGG subclasses) good except a slightly low total IGG also. He agreed today, that on a bell curve, they are on the low end, and that my younger son does look to have a slight immune deficiency.....hummmmmm........this is becoming very interesting. He said the clinical picture is the major thing to look for.....recurrent illness, etc. He referred me to someone better to handle this....I guess for whatever reason he doesn't know what to do with us.....with the PANDAS and all. It was quite interesting to me to find my more severe PANDAS child's immune system was not functioning as well as my mild PANDAS son......could this possibly be the underlying issue?????

 

Kelly

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Kelly:

 

It is really revealing how your kids have a direct correlation between their immunological work up and Cunningham results!!!

 

I think it is important to do both tests before steroids or IVIG to get a good baseline. We unfortunately did our Cunningham blood work post steroids so I have skewed results.

 

Elizabeth

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Okay, I received another pm from a different Mom today so counting your child Kelly & her's we are up to five kids in three days!!!

 

Immune Deficiency's can run in families so I wouldn't be surprised if you or your husband would find something off in one of your immune systems.

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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

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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??

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