ShaesMom

She had an endoscope & colonoscopy done about 4 weeks ago where they found a significant number of eosinophilic (allergy) cells in her esophagus, tummy & colon. From there she went in for skin & ImmunoCap blood testing. It is important to note that eosinophilic cells are not always from IgE mediated allergies. From my understanding, we were "lucky" to find so many allergies through traditional testing. Most individuals have to go on a very strict elimination diet and reintroduce foods to determine which ones are causing the allergy. She will have to have another endo & colonoscopy in a few months to see if we have actually removed all of the allergens or if some remain that are not IgE mediated. We had the endo & colonoscopy done because GI issues are very common with primary immune deficiencies. She has had chronic constipation for years and has never been on the growth chart. We have made regular visits to the GI doc since the age of 2 but were always told she was just "withholding" and would grow out it. If only we would have known this five years ago.....

I just wanted to add that we not only found out about the environmental allergies but also an additional 9 food allergies. Four of these are considered severe (3-4 on scale). We have known about her anaphylactic dairy allergy since birth but I would have never guessed that she is MORE allergic to Pork than dairy. We eat pork 4-5 times a week. Same with eggs-she eats them all the time. She doesn't have any skin rashes, eczema, thrush, diaharra, tummy aches or any other common food allergy symptoms . I would think between the grass in our front yard (a 4), the dog & cats, and the foods she would be one of those kids who always has a runny, snotty nose-but she doesn't! Outwardly, she appears healthier than my older son.

My daughter's high eosinophils were not found in blood work but rather in biopsies on her esophagus, tummy & colon from the endoscope & colonoscopy. She has been dx'd with EE in addition to every thing else. From my understanding, typically eosinophilic cells are not related to IGE so the fact that they were able to find 9 additional food allergies through the skin & blood testing is quite unusal. She may have additional allergies that are not IGE mediated. Only another endoscope & colonoscopy will tell us if there are still eosinophilic cells in her GI tract.

I just wanted to say that my Pandas daughter who also has been dx'd with CVID & severe allergies has an immune system that is totally "wacked". She never responds to an illness in a "normal" fashion. For instance when she has a UTI she never has the typical symptoms--only behavioral changes which are my signal. At the age of three, she had a UTI that lasted for a period of months-turned out she actually had a pseudomonas infection that can only be cleared up with IV abx's. Anyway, during this time frame her behavior was identical to when she had her major Pandas flare last spring. NO burning, no frequent urination or other common UTI symptoms. It appears that her body only knows how to respond one way--with behavioral changes. We also found out recently that she is highly allergic to both dogs & cats--4 on a scale of 1-4. We have had two cats in the house since her birth and just purchased a dog. She has never exhibited any signs of being allergic to either animal. No running nose, itchy eyes, sneezing etc. Sometimes I wonder if our children are really sick and because their bodies don't produce the typical symptoms we just assume they are not actually ill.

We originally met with a Rheumy after the raised ASO titers. He ordered an EKG & Echo based on the fact that she had a new murmur that wasn't there three weeks prior and because he felt she was definitely having a problem with strep. Both came back normal.

Her numbers were <0.3 on seven of the serotypes; <1.0 on four; 6( 1.3; 19(F) 6.8; 23(F) 7.4 According to the Lab anything less than 2 is nonprotective. Her Immuno considered her as a non-responder. He did not recommend revaxing her with Pneumovax based on her four Prevnar shots. Insurance approved IVIG without revaxing and did not even request it to my knowledge. Insurance has paid for all IVIG's including the large two day dose with a code for CVID. We have BCBS.

The following serotypes are included in the Prevnar vaccine: 4 26 (6B) 68 (9V) 14 56 (18C) 19 (19F) 23 (23F) My dd "passed" on 19F & 23F and failed the rest

Nevergiveup-I'm not really sure your statement "immunologists vaccinate with the pneumococcal vaccine to diagnose secondary immune deficiency" is correct. Maybe that is how your Father dx's SID but not all Immunolgists do this. It is often standard practice among Immuno's to revax with Pneumovax prior to giving a dx of Selective Antibody Deficiency and even CVID. If you don't believe me I'll be happy to give you the phone number of my Immuno who is recognized as a leader in the industry by IDF and a professor at UCLA who consulted on Mama2Alex's son case. I can also direct you to a forum for CVID patient's who will also tell you that it is common to be revaxed and it has nothing to do with secondary immune deficiency. I must say your post appears to have a lot of assumptions regarding how much research and knowledge both Mama2Alex and her doctor's have. I know her family has agonized over this decision and has not taken it lightly in any regard. I believe in the case of her son they are not only dealing with Pandas but also a child who has repeatedly had Pneumonia and been hosiptalized. I believe they are doing what is in his best interest to not only treat his Pandas but his overall health issues and prevent future illness. I would hope that your Immunologist would have SOME idea what is going on in your child's immune system since this is her speciality. I think it is important that we ALWAYS support each other and never offer such judgement for another's decisions. Definition from Immune Deficiency Foundation's publication: When the damage is caused by an extrinsic force, such as an environmental factor or agent, it is called a secondary immune deficiency disease. For example, AIDS is a secondary immune deficiency disease caused by the HIV virus. Secondary immune deficiencies can also be caused by irradiation, chemotherapy, malnutrition, and burns. http://www.primaryimmune.org/publications/...pats/e_ch01.pdf

Yep, I believe that is the general thinking.

Just curious-considering the age of your children would they not actually be receiving Pneumovax rather than Prevnar?? I did not think Prevnar was given to anyone above the age of 5 but I may be wrong. Wow Elizabeth-considering your daughter's results on the Cunningham test that seems like a tough call.

Do you know an Immunologist in your area whom you could mail the results to with a letter stating you would like to visit with them on the phone regarding whether the results are normal and follow up with an appt if they feel your child should be seen?

My dd also has been dx'd with an immune deficiency. She started monthly IVIG back in July and I think it has been a God send for her. You can learn more about immune deficiency's at www.primaryimmune.org click on the publications link and then the Family and Patient Handbook for some good background info. Chapters 1,2, 10 & 18 are a good place to start. Which Ig's did your daughter fail? Is your father the Immunologist??? PM me if you have any specific questions and I will try to help.

Here is a link to the IDF's explanation of IVIG: http://www.primaryimmune.org/publications/...pats/e_ch18.pdf

Have you tried giving it with food? could be she is allergic to augmentin. So I have to ask--did your daughter have a relaspe of her Pandas symptoms? Did she get another strep infection?

Great news all around Manda! I also think the high Lympocytes are just an indicator of infection. My dd were often high. My dd continued to spike fevers after her first IVIG as well. They have since disappeared-I believe this occured after her third IVIG. Maybe the fevers are an indicator of additional infection or immune issues.

Elizabeth-That is fantastic news!!!!! Just wait until you finish the third IVIG and he improves even more. Congrats!!

Susan this is great news to hear that you are headed in the right direction! I would be very careful with the OCD meds-from what I've read and heard they may actually do more harm than good with her Pandas. I'm sure others who are more experienced in this area will chime in.

I believe Wendy is correct-it shouldn't matter if your child is sick when he gets the IVIG. It isn't even a question they ask when we go in for our monthly infusions.

Peg, I believe Plasma Exchange is both procedures together. They filter the autoantibodies out and then infuse with donor IGG's when returning the plasma back to the body. I asked my Immuno on Monday about PEX being a cure and he said that it was not a cure. It will remove the autoantibodies but then the next time a person comes in contact with the same bacteria that caused the initial autoimmune illness the body can produce the autoantibodies again.

I haven't done much research on food allergies since my dd was originally dx with her dairy allergy seven years ago. On Monday, we found out that she is also highly allergic to beef, pork, and almonds and mildly allergic to peas, navy beans, string beans and rye. We also found out she is highly allergic to both cats and dogs. I have been researching the beef and pork allergy and ran across a couple of studies that showed there was a link between milk allergies and beef/pork allergies and also that individuals who were allergic to cats were often also allergic to the meats. I have a penicillin allergy. I never thought about the fact that a lot of our meats are injected with penicillin these days and that it may be affecting my allergy-could it possibly have caused or contributed to my Fibro???? Also, did you know gelatin was made using ground up beef or pork bones? My dd won't be getting all those yummy gummy vitamins anymore. I believe there are some other kids with a dairy allergy so i just wanted to share. I have to say too that I would never have guessed my daughter is allergic to cats or dogs. We have both at our house and true to form she has never exhibited any outwards signs of being allergic to them.

Has he been tested for food allergies or any other illnesses? Mono, for instance, which can be chronic. Has his immune system function been tested?

My dd does not seem to have OCD behavior with her exacerbations-if any it is very mild. She does have the emotional issues, explosive temper and sensory issues with touch.

Sounds like you might be the smoking gun! Make sure you retest after you finish your Zpack and throw away all your lip gloss and lipstick in addition to toothbrushes and toothpaste.

Don't be so hard on yourself. You will find the answers to help your son. I just wanted to add on the GFDF diet and food allergies--if your son was tested for food allergies with skin testing and Rast and they all came back negative it may mean that he still has allergies only they are not IGE mediated. It is very possible to have food allergies that only show up in the GI and not on the skin or in the blood. My dd was scoped three weeks ago and they found Eosinophilic cells in her esophagus, tummy & colon. Eosinophili's are allergy cells that are typically NOT IgE mediated so it is unlikely that allergies will be found through the traditional methods. She will probably have to go on an elimination diet and then be rescoped to see if the allergens have been removed. Also, celiac's often does show up in the blood tests either. An endoscope is the most accurate way to dx it. My dd7 was born with an anaphylactic allergy to dairy so I've had several conversations with her allergist & GI about additional allergies and how the GI tract allergies are a little different than the allergies that show up on the skin testing. We are going in today for a full allergy panel and blood work before we start the elimination diet.

I don't remember being ill as a child much at all. I have actually been much sicker since my Pandas daughter has been born than ever prior. I seem to get strep as often as they do only worse and I also get bronchitis once or twice a year. It seems like every time I get an infection it takes me at least a month to get over it. So, I'm beginning to think that I may also have a comprised immune system. In addition, my dd was born with an anaphylactic allergy to dairy and I have since become lactose intolerant. I truly believe something went "wrong" during my pregnancy with her. Either I have compromised her immune system or she compromised mine.