Immunology Follow-up

[mom md]

We saw the immunologist Friday and she said my son is more than likely immunocompromised in some way. She said he has horrible allergies which are not well controlled and we need to start allergy shots. Latimer said this was fine. He also failed his diptheria and prevnar vaccine and she wants to repeat them. If he fails the prevnar again we will start IVIG on a regular basis. She said she would do Vivaglobin which is a new subcutaneous form which can be given at home weekly. She said it is much easier. She also said that she would go to battle with the insurance company and they would have no choice but to pay if we prove he fails his vaccine.

She and I talked about the fear of vaccine starting PANDAS again and she said, we can treat PANDAS but if he is truly immunocompromised and you don't know it things could get much worse. She also wanted him to get both flu-shots ASAP. She did say all these vaccines needed to be given seperately so he only deals with one at a time. Last week I could not find a flu shot and so I guess I will try to do the prevnar this week.

On a side note, I am sitting in the hospital now with my other son, Spencer who is 5, who has pneumonia. I think it is bacterial but it hit him like a freight train Thursady morning and we were admitted Friday. His flu was negative and they think it is strep pneumonia. The flu test is only 50/50 so they are not sure. Strep pneumonia is a different strep than strep A and not very contagious. It makes me a little anxiuos though that Carter failed his prevnar vaccine. We are doing much better though and should be discharged tomorrow. For the first two nights though we thought it was swine flu and pneumonia. Very scary. After being here and watching a child who is so sick and seeing the report of 88 kids dying from swine flu I think we will all get the vaccine. My thought is Carter(who had PEX) probably is somewhat immunocompromised and not getting the vaccine could possibly be something I regret. I know it is a tough decision but that is where I stand on it today.

[sf_mom]

Did you see a reaction to the prevnar vaccine at all? Flair in PANDAS symptoms? I'm fairly convinced that the kids with compromised immune systems need monthly IVIG to jump start their system.

 

 

So sorry to hear your other son is now sick. How do they treat Strep pneumonia... will they be administering IVIG or do they just do straight high dose antibiotics. The thought of it possibly of it passing along to your PANDAS son is scary. I'm sure you know our story by now...... Son's friend had Scarlet Fever at time of play date 'both' my boys got sick, one ended up in hospital and treated with IVIG 5 days into high fever, my other son and friend went untreated and both are PANDAS now, both have compromised immune systems.

[KeithandElizabeth]

Wow - I am glad you did the immunological work up!!

 

Do you feel distress or relief by all this? I guess I felt a mixture of both emotions when I got my son's blood work up. I felt sad that he had a weak immune system, but relief in understanding how he developed PANDAS and that it is treatable. Did you doctor say how long or often your son would need IVIG? I am still confused about the vaccinations..... doesn't IVIG produce the antibodies to the failed titers?? I have heard of other kids whose pneumo titers rose after IVIG. I am still trying to understand this aspect of IVIG?

 

Elizabeth

[faith]

mom md (and others)

what exactly does it mean when you say "he failed the prevnar and diptheria vaccine"? do you mean he had the vaccine and now does not show immunity? I am squirming in my boots here hearing you say that Dr. Latimer wants you to repeat these vaccines and get two flu shots? yikes. Is this all really necessary? vaccines scare the bejesus outa me. I think I don't understand what this immunology work up is for and what it is supposed to show. I think I'm confused in that I would have thought that these kids don't have a weak immune system, but rather an "overactive" one. If anyone can explain this, I'd appreciate it.

 

thanks

Faith

[nevergiveup]

Hi mommd,

 

Several things did you get IGG panel, subclasses, ANA and complements. My daughter doesn't need prevar vaccine because insurance will cover IVIG with low IGG and subclasses plus a history of chronic infections. Also I am wanting to give my daughter the swine flu vaccine, since this flu is prevalent and spreading quickly. My uncle also an md suggested to run Cunninghams test pre vaccine and three weeks post to monitor Cam Kinase and see if vaccine is raising antibodies. If so gives you future info on whether or not vaccines can flair PANDAS. May help others decide whether to vacinate also. Also did you ever get another cam kinase post pex? Very interested to see what it was?

 

 

 

 

We saw the immunologist Friday and she said my son is more than likely immunocompromised in some way. She said he has horrible allergies which are not well controlled and we need to start allergy shots. Latimer said this was fine. He also failed his diptheria and prevnar vaccine and she wants to repeat them. If he fails the prevnar again we will start IVIG on a regular basis. She said she would do Vivaglobin which is a new subcutaneous form which can be given at home weekly. She said it is much easier. She also said that she would go to battle with the insurance company and they would have no choice but to pay if we prove he fails his vaccine.

She and I talked about the fear of vaccine starting PANDAS again and she said, we can treat PANDAS but if he is truly immunocompromised and you don't know it things could get much worse. She also wanted him to get both flu-shots ASAP. She did say all these vaccines needed to be given seperately so he only deals with one at a time. Last week I could not find a flu shot and so I guess I will try to do the prevnar this week.

On a side note, I am sitting in the hospital now with my other son, Spencer who is 5, who has pneumonia. I think it is bacterial but it hit him like a freight train Thursady morning and we were admitted Friday. His flu was negative and they think it is strep pneumonia. The flu test is only 50/50 so they are not sure. Strep pneumonia is a different strep than strep A and not very contagious. It makes me a little anxiuos though that Carter failed his prevnar vaccine. We are doing much better though and should be discharged tomorrow. For the first two nights though we thought it was swine flu and pneumonia. Very scary. After being here and watching a child who is so sick and seeing the report of 88 kids dying from swine flu I think we will all get the vaccine. My thought is Carter(who had PEX) probably is somewhat immunocompromised and not getting the vaccine could possibly be something I regret. I know it is a tough decision but that is where I stand on it today.

[mom md]

It is all very confusing to me. The immunologist used the word immunodeficient, but this category also includes abnormalities of the immune system where it "over-responds". i think she means he does not respond appropriately.

I think the immunology stuff just taking PANDAS to the next dimension and finding out why it all happened. He did have diptheria vaccine and prevnar and just did not get immunity. This whole thing is both a relief that we are starting to understand why but also scary to that he may be susceptible to more things. My husband's reaction was one of anger and frustration. He does not understand the thought process and wondered why we did not just do IVIG if that is what he needed. I tried to explain to him that the PEX fixed the PANDAS and the IVIG would be preventative. I think he just is angry that we keep subjecting my son to tests and treatements. He is doing great right now and my husband just wants to go back to normal. I on the otherhand, want to prepare so this never happens again.

Yes, the vaccines scare me and I would not give hep a or anything I don't really think is needed. I really think he may be immunodeficienct and we need to figure that out.

So, how to you do the pneumococcal challenge test? Does he get pneumovax and then check his blood three weeks later?

The PANDAS saga never ends...

[mom md]

I don't remember if he had a reaction to the prevnar vaccine and back then we did not know about PANDAS. I wish I could remember. Also, I am so sorry you have two sons with this. Very scary. I have read several of your posts though and you have been very pro-active which is wonderful. Good luck. Strep pneumonia is treated with IV Rocephin. No one has mentioned IVIG becuase he appears to be responding well. Hopefully we will be home soon.

Did you see a reaction to the prevnar vaccine at all? Flair in PANDAS symptoms? I'm fairly convinced that the kids with compromised immune systems need monthly IVIG to jump start their system.

 

 

So sorry to hear your other son is now sick. How do they treat Strep pneumonia... will they be administering IVIG or do they just do straight high dose antibiotics. The thought of it possibly of it passing along to your PANDAS son is scary. I'm sure you know our story by now...... Son's friend had Scarlet Fever at time of play date 'both' my boys got sick, one ended up in hospital and treated with IVIG 5 days into high fever, my other son and friend went untreated and both are PANDAS now, both have compromised immune systems.

[P_Mom]

Faith.....the vaccinations make me "squirm in my boots", too. Yes, failing the vaccines means you were vaccinated, however, when tested, do not show protective antibodies to these illnesses.

 

I gathered from reading Mom Md's post that it was the immunologist that suggested the vaccinations, not Latimer. Did I interpret that correct, Mom MD?? Latimer asked me what I was planning on doing about the Swine Flu...I said nothing...meaning no vaccination.......I asked "what about you?" She said she, nor her children, would be receiving the Swine Flu vaccine. She believes it was a hurried vaccine, with no testing, etc., and does not trust it. She referred to the 70's (?was it the 70's) Swine Flu outbreak that never came to fruition..however, many were vaccinated and the vaccine caused more harm and deaths than the flu that never really came.

 

Perhaps these kids are weak in some areas, and, over-reactive in others???

[mama2alex]

I think I don't understand what this immunology work up is for and what it is supposed to show. I think I'm confused in that I would have thought that these kids don't have a weak immune system, but rather an "overactive" one. If anyone can explain this, I'd appreciate it.

 

thanks

Faith

 

My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS.

 

For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse.

 

Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part.

 

That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started.

 

In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this.

 

The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

[nevergiveup]

Hi mommd,

 

My father is an immunologist refers all his polysacchroid antibody def cases to hopkins if they do not respond to vaccine. (For ivig) After my daughter came back with several years of failed immune markers. (See my earlier response above). He insisted to me to take the vaccine and see if my daughter responds. Even called my daughters imm doctor here in my home town to review her care. I was hesitent after hearing about relapse from one of Swedos PEX kids. I went in to see my immunologist explaining I didn't care what my dad thought, that I felt it could make my daughter sick if I vacinnated. (Mentioned high ANA and Swedo case). My immunologist said no problem, she was ok with that and with a low IGG and chronic sinusitis we should have no problem getting insurance coverage. I checked the PIDD association and it appears to be true. My immunologist felt insisting on the pnuemoccocal vaccine was a little old fashion and not necessarily required. Most parents do it to avoid IVIG, my father said very rarely after 2 vaccines do the kids not respond and do not show titers.

So is your goal to have ivig fix his titer response, or his overall immune def?

If you vaccinate you run the risk of only vaccinating and no ivig coverage. Is this the only way to prove he has an immune def.

I think immune docs are no different than Neurologists or OBGY for that matter. "Its not if you see a doctor, its WHICH doctor you see that matters". My family likes to say that. (Of course they are mostly mds ). My daughter just got the go ahead from her doc for monthly ivig for 6 months. They see in children after 6 months the immunesystem does sometimes alter and life long ivig are not always necessary. My father is all for my daughters ivigs for 6 months. Apparently , I have heard Leckman from Yale refers some of his kids to an immunologist. I am trying to get this immunologists name to have my father call him to see what kind of results They are seeing from monthly ivig's.

I heard that they are seeing some commonalities among these kids immune markers Like low IGG4's. Again this is just doctor and chat room hearsay and still trying to get details and facts about the yale immunologist seeing panda kids.

 

 

 

 

 

I think I don't understand what this immunology work up is for and what it is supposed to show. I think I'm confused in that I would have thought that these kids don't have a weak immune system, but rather an "overactive" one. If anyone can explain this, I'd appreciate it.

 

thanks

Faith

 

My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS.

 

For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse.

 

Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part.

 

That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started.

 

In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this.

 

The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

[nevergiveup]

Hi mommd,

 

My father is an immunologist refers all his polysacchroid antibody def cases to hopkins if they do not respond to vaccine. (For ivig) After my daughter came back with several years of failed immune markers. (See my earlier response above). He insisted to me to take the vaccine and see if my daughter responds. Even called my daughters imm doctor here in my home town to review her care. I was hesitent after hearing about relapse from one of Swedos PEX kids. I went in to see my immunologist explaining I didn't care what my dad thought, that I felt it could make my daughter sick if I vacinnated. (Mentioned high ANA and Swedo case). My immunologist said no problem, she was ok with that and with a low IGG and chronic sinusitis we should have no problem getting insurance coverage. I checked the PIDD association and it appears to be true. My immunologist felt insisting on the pnuemoccocal vaccine was a little old fashion and not necessarily required. Most parents do it to avoid IVIG, my father said very rarely after 2 vaccines do the kids not respond and do not show titers.

So is your goal to have ivig fix his titer response, or his overall immune def?

If you vaccinate you run the risk of only vaccinating and no ivig coverage. Is this the only way to prove he has an immune def.

I think immune docs are no different than Neurologists or OBGY for that matter. "Its not if you see a doctor, its WHICH doctor you see that matters". My family likes to say that. (Of course they are mostly mds ). My daughter just got the go ahead from her doc for monthly ivig for 6 months. They see in children after 6 months the immunesystem does sometimes alter and life long ivig are not always necessary. My father is all for my daughters ivigs for 6 months. Apparently , I have heard Leckman from Yale refers some of his kids to an immunologist. I am trying to get this immunologists name to have my father call him to see what kind of results They are seeing from monthly ivig's.

I heard that they are seeing some commonalities among these kids immune markers Like low IGG4's. Again this is just doctor and chat room hearsay and still trying to get details and facts about the yale immunologist seeing panda kids.

 

 

 

 

 

I think I don't understand what this immunology work up is for and what it is supposed to show. I think I'm confused in that I would have thought that these kids don't have a weak immune system, but rather an "overactive" one. If anyone can explain this, I'd appreciate it.

 

thanks

Faith

 

My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS.

 

For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse.

 

Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part.

 

That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started.

 

In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this.

 

The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

[LNN]

MomMD-

I'm curious about post-pex immuno testing. If pex removes nearly all antibodies to everything, then how do you know the test results are accurate? I'm not trying to be argumentative- this is a sincere question. I know you retain "memory" cells that will remember how to fight an infection even if you don't have the standing army of antibodies in your blood stream. So you'd still be able to fight chicken pox if you were exposed, even after pex (assuming you had chicken pox or the vaccine prior to pex). Your body would just have to take an extra step of creating new antibodies instead of calling on a standing army.

 

But let's say you had an immuno workup to test for a proper immunity to chicken pox prior to pex and you passed. Then you had the same test post-pex. Would you still pass or is there a chance that the test would show insufficient immunity because you've removed the pool of antibodies the test is looking for? Even tho the memory cells still retain the knowledge needed to create new antibodies if the need arose, my limited understanding is that a test would be looking for a pool of existing antibodies, not testing the memory system.

 

We are 8 weeks post-pex and I've been under the assumption that it's too early to do any immuno testing and have any confidence in the results. That the tests might reflect a condition we created by doing pex rather than any underlying deficiency of the body's abilities. Can you help me understand what I'm missing?

 

Laura

[Suzan]

I am happy to hear your update especially since we go on Wednesday and I am making a huge assumption that we will get similar information. I really need time to process the whole allergy shot/vaccine thing. It really freaks me out. Since so far we may have some immune testing on the lower range of normal, there is nothing else so far that is an obvious deficency aside from the strep pneumo titers. Please keep us posted. I am very curious and anxious about how you do with this immunologist.

 

I am very sorry to hear about your other son! I hope he gets better quickly and you are home today. BIG HUGS!

 

Susan

[michele]

MomMD,

I was happy to hear Carter has been doing so well post PEX. Sorry about your other son. I hope he gets well quickly. Can you list the specific tests the immunologist did or checked for? We have been to two immunologits but never really found out anything. Maybe there are specific tests that I need to request. However both did write scripts for antibiotics. One would only write for PEN VK or Amoxicillin, and the other wrote for Omnicef. I don't think they ever knew what was causing these PANDAS OCD episodes. I am sorry you are having to go through all this again. However you are going to help him and others in the long run.

 

Michele

I am happy to hear your update especially since we go on Wednesday and I am making a huge assumption that we will get similar information. I really need time to process the whole allergy shot/vaccine thing. It really freaks me out. Since so far we may have some immune testing on the lower range of normal, there is nothing else so far that is an obvious deficency aside from the strep pneumo titers. Please keep us posted. I am very curious and anxious about how you do with this immunologist.

 

I am very sorry to hear about your other son! I hope he gets better quickly and you are home today. BIG HUGS!

 

Susan

[kim]

MomMD,

 

A couple of things come to mind. If it were me and there is not some reason that I'm not aware of, I think I would hold off on the Prevnar and get the flu shots only if there is a line of thought that the flu is a real threat to your sons health and that he will respond favorably to the vaccines. I would be CERTAIN that they are not the thimerosal containing vaccines. I have personally found that there is very liittle knowledge of the difference. Read the insert yourself. Many parents have encountered physicians or staff that just don't know that there is still thimerosal in the flu vaccines. Maybe this time is different because they are specifically making thimerosal free vaccines available to pregnant women and young children (is this routine or just if the parent knows enough to ask for the T free vaccine, I don't know).

 

As far as Prevnar, that vaccine is conjugated to diphtheria protein. If your son failed the diptheria titer, it makes me wonder. I think he has probably had, what, DTaP, TDaP (some combination of) 4 or 5 times now? Then his Prevnar series, which again, is the S pneumonia saccharides of the capsules joined to the diptheria protein. He was younger when he recieved the Prevnar series, so by now he may respond to the saccharides alone (children under the age of 2 were shown not to respond to the saccharides, hence the addition of the diptheria protein and aluminum phosphate). I strongly question the wisdom of injecting a child with H1N1, seasonal flu and Prevnar. If there is a compromised bbb, the aluminum hydroxide is also concerning to me. Even if the bbb is not compromised it's still concerning IMHO.

 

I'm sure your Dr. is aware of all of this and may be recommending Prevnar specifically (instead of a s pneu. vaccine that is not conjugated to diptheria) possibly to help battle insurance, but what she is recommending is something that I would have give a great deal of thought to, personally.

 

I hope your little guy recovers quickly and you are able to take care of yourself too. I know you are still recovering from post PANDAS trauma yourself and I'm sure it's so difficult to deal with all of this. Hugs to you and your little sweeties