had appt w/ immunologist today

[mama2alex]

Mama2Alex,

Try to get largest dose possible for SAID. The higher the dose the more effective the IVIG's are for PANDA symptoms. Coco was getting a low dose 200 mg per kg. My kid gets 500 mg per kg. Both are way below PANDAS dosage. Dosage is key to help eleviate symptoms. Are they saying a 6 month trial or lifetime? With a six month trial they tend to do higher doses (than normal) because they are trying to alter the immune system. The IVIG's will really help with pneumonia and overall health of your son. I am very interested in dosage so please let me know what they are thinking. Also there is a study in Allergy and Immunology showing one case with remission of "PANDAS like symptoms" after 3 SAID IVIG infusions. I am not sure what dose was used on that, but PANDAS symptoms reappeared every 3 weeks so dosage was too low. You may want to check on that. I am currently trying to get my dd dosage higher. They are measuring before and after each IVIG to see how much she eats up the globins, and if they are "eaten" rapidly then she will start getting higher doses. Just an FYI.

 

NeverGiveUp,

 

Thank you for this information! We are waiting for them to call us back after I told the nurse yesterday that we want to start with 2g/kg for PANDAS and then go to whatever dose they recommend for SAD. I think this threw her for a loop, because the immunologist at Stanford hasn't actually met with us yet. (It's complicated, but we initially went to UCLA to see two immunologists there, but have done all the labs, vaccine, x-ray, etc through Stanford because we live in No. CA and see a pulmonologist in the same practice as this doc). So we'll see what they come back with. I thought I remembered the UCLA docs saying they do 600mg/kg for SAD, but I can't find where I wrote this down, so I'm not sure. The nurse said 6 month trial initially, but I'm not sure she'd even spoken to the doc yet.

 

I will post under a new thread when I know the details.

 

Can you post more about how they measure globulins before and after each IVIG? Do you think this is something we should ask them to do? Is there a name for this test?

 

Thanks!

Jennifer

[peglem]

Peglem,

 

Just want to clarify that I (and I think NeverGiveUp) were not referring to Srep A infections when we said to compile a list, but to ear, sinus and lung infections (such as pneumonia) that would support the low strep pneumoniae titers in giving an immune deficiency diagnosis. Has your daughter had recurrent sinus, ear or lung infections? These are caused by streptococcus pneumoniae bacteria, which I understand is not "strep," just has the name streptococcus in it for some reason (this is what one immunologist told me - very confusing).

 

I agree you should try one more time to work this out with your existing immunologist, but move on if they aren't helping you.

 

I can't believe your daughter has low IgA, IgG and IgG4 and they still won't give you a diagnosis and treat! What more do they want??

 

Hang in there. You can push this through and get her the treatment she needs.

 

Thanks, NGU. My pediatrician has spoken with the immuno. The problem with a list of infections is that the immuno is convinced that my daughter is "just a carrier" of strep, so those + strep tests are meaningless to him. Before we saw this immuno, Allie's ped. ran blood work for IgG subclasses, and the other Ig's. She was low in IgG4 and very low in IgA. Her total IgG was low as well. The immuno did not rerun those. I'm going to call her pediatrician tomorrow- although getting a call through those nurses is quite a task!

I just looked at Kurlan's paper on intracellular strep, which hints that strep carriage may not be benign. I sure wish there was something more definite.

 

Okay, this is going to work out....yes it is, it will, really.

 

Well, we've been on prophylactic antibiotics for the past couple years. Before she had the t & a, she had chronic sinus infections, ear infections...when we'd take her to the doctor, they'd either call it allergies, or give a course of abx. Frankly, they did nothing so often that we seldom even took her to the doctor anymore. She was never tested for strep until age ten (when I began to learn about PANDAS). This was when we were new to her current pediatrician. The last 2 months she's had 2 illnesses, about a week each, with fever.

[nevergiveup]

Peglem,

 

No strep! try to Not talk with the immun doc about this, it is confusing the issue. CVID and selected antibody def have to do with resp, (pneumonias, RSV's, bronchitis ) sinus and ear infections and other infect too like cosackie and influenza. Take out the strep and document every infection. Go back to her school attendance record to show how often out of school. They like to see absences from school to. One sheet of paper with date of infection, type of illness signed by pediatrician. These kids also have fatigue on and off, joint pain on and off, some have an autoimmune component like high ANA or low C4. Go to the Gammagard web site and read everthing about CVID. My kid was out 30 plus days per year every year since Kindergarden, she's in 7th grade. What exactly were her IGG,s IGA's, Can you give me a number?? (IG4 subclass still contoversial) These are much easier to justify IVIG than the pnuem titers levels.

 

 

Mama2Alex,

 

600 mg per kg, not bad. I am going to try to get my kids higher than her current 500. Good luck with the 2 grams for two days, I am sure they are shocked by this. My kid could only handle 1 gram per kg, it made her sick but everyone's different. As for measuring the eating of the immunoglobins. They draw blood out the IV line after infusion and measue IGG levels, then again before next infusion they draw blood out iv line before infusion to measure IGG levels. If levels drop a lot they will up next dose. The idea is to alter the immun system permanently, therefore as the infusions continue the drop off between pre and post each drop off should be less and less showing that the body's immune system is working. Until pre and post stay sky high, then you know you may not need more infusions or higher dosage. So lets say pre ivig Igg's are 400 and post they are 1600. Next pre may be 400 again showing wrong dosage. They then up dosage next time so post is now 1700 and the next pre ivig is 600. This continues until IGG's are very high pre and post IVIG. I am sure they can do the same with measuring the pneumoccocal titer levels. My daughters pneum titers went sky high after IVIG but went back to low again post 12 weeks. I am glad you have such a good immun doc. I am also glad that you have found the problem. Some feel that the PANDAS symptoms are caused by the immun def. Obviously PANDAS symptoms can be caused from many different diseases, understanding where they are coming from can be half the battle.

[peglem]

Peglem,

 

No strep! try to Not talk with the immun doc about this, it is confusing the issue. CVID and selected antibody def have to do with resp, (pneumonias, RSV's, bronchitis ) sinus and ear infections and other infect too like cosackie and influenza. Take out the strep and document every infection. Go back to her school attendance record to show how often out of school. They like to see absences from school to. One sheet of paper with date of infection, type of illness signed by pediatrician. These kids also have fatigue on and off, joint pain on and off, some have an autoimmune component like high ANA or low C4. Go to the Gammagard web site and read everthing about CVID. My kid was out 30 plus days per year every year since Kindergarden, she's in 7th grade. What exactly were her IGG,s IGA's, Can you give me a number?? (IG4 subclass still contoversial) These are much easier to justify IVIG than the pnuem titers levels.

 

NGU, thanks so much for your help! I'm saying that since we've been on the antibiotics for so long...actual illnesses have been minimal, before that, and before her t & a, she was sick alot- sinus infections, ear infections- just constantly. After her t&a, she had a huge PANDAS relapse....but prophylactic abx were started soon after that. Do I have to yank the abx and let her get sick alot to show the doc. there is a problem? Sigh...I'm just doing what I can to survive here.

 

Here are her numbers from her sept 28th labs:

Total IgG-572, range 842-2013

IgG 1-347, range 315-855

IgG 2-129, range 64-495

IgG 3-44, range 23-198

IgG 4-4.0, range 11-157

 

Another place in the same report it says IgG is 546, same range. Dunno what's up with that.

 

IgA- 15, range 57-300

IgM-75, range <282

 

I don't have the labs yet that the immunologist ordered...I'll call and see if they will fax them over.

[sf_mom]

Would the same apply to STREP PNEUMOCOCCAL ANTIBODY TITER (oops, just saw your comments on strep titers)? My thought was to talk Dr. K about this and test our son's titers 3 weeks, 6 weeks and 10 weeks post his next IVIG treatment to see if there is a continued drop off. Our son's IgG's were normal.

 

-Wendy

 

Peglem,

 

No strep! try to Not talk with the immun doc about this, it is confusing the issue. CVID and selected antibody def have to do with resp, (pneumonias, RSV's, bronchitis ) sinus and ear infections and other infect too like cosackie and influenza. Take out the strep and document every infection. Go back to her school attendance record to show how often out of school. They like to see absences from school to. One sheet of paper with date of infection, type of illness signed by pediatrician. These kids also have fatigue on and off, joint pain on and off, some have an autoimmune component like high ANA or low C4. Go to the Gammagard web site and read everthing about CVID. My kid was out 30 plus days per year every year since Kindergarden, she's in 7th grade. What exactly were her IGG,s IGA's, Can you give me a number?? (IG4 subclass still contoversial) These are much easier to justify IVIG than the pnuem titers levels.

 

 

Mama2Alex,

 

600 mg per kg, not bad. I am going to try to get my kids higher than her current 500. Good luck with the 2 grams for two days, I am sure they are shocked by this. My kid could only handle 1 gram per kg, it made her sick but everyone's different. As for measuring the eating of the immunoglobins. They draw blood out the IV line after infusion and measue IGG levels, then again before next infusion they draw blood out iv line before infusion to measure IGG levels. If levels drop a lot they will up next dose. The idea is to alter the immun system permanently, therefore as the infusions continue the drop off between pre and post each drop off should be less and less showing that the body's immune system is working. Until pre and post stay sky high, then you know you may not need more infusions or higher dosage. So lets say pre ivig Igg's are 400 and post they are 1600. Next pre may be 400 again showing wrong dosage. They then up dosage next time so post is now 1700 and the next pre ivig is 600. This continues until IGG's are very high pre and post IVIG. I am sure they can do the same with measuring the pneumoccocal titer levels. My daughters pneum titers went sky high after IVIG but went back to low again post 12 weeks. I am glad you have such a good immun doc. I am also glad that you have found the problem. Some feel that the PANDAS symptoms are caused by the immun def. Obviously PANDAS symptoms can be caused from many different diseases, understanding where they are coming from can be half the battle.

[nevergiveup]

Peglem,

 

OK. They are low enough to justify monthly IVIG for insurance. Don't take your kid off abx, all these kids with CVID tend to be on long term abx for chronic sinusitis. My daughter was and yet over the last 2 years or so her infections were much less. Document all the infections, even the one's not seen by ped. Have ped call immun doc, is your ped on your side???? Don't draw attention to the timing of the infections rather the large number over the last 10 years. We went back many years. Have you read the gammagard web site about CVID? Some lab results scream IVIG like those with IGG's in the 200 or 300 range. Some are not as low but with a history of chronic infection, they may try high dose abx for a while. With no change, then IVIG is recommended. Its up to you and your ped to present your case. Some kids have almost normal levels of IGG's but still suffer from chronic pneumonia and then the docs did deeper for Selected Antibody Def. Lets face it most parents would be devasted by the thought of monthly infusions of blood product so immun docs try everything else first. Rarely do they have parents desperately looking for IVIG. Their gut is to avoid IVIG unless completely necessary. (Who in their right mind wants IVIG for their kid, however what these docs don't know is how severe PANDAS is) Your child DOES qualify, so I am thinking after all you have been through you can now sit back and rest. If this doc won't do it, many others will. (Hint: find an immun doc that also has an infusion clinic combined in his practice).

Its both clinical presentation and lab markers that justify treatment. Her low IGA's complicate things, not to mention make it much more expensive. She runs the risk of a serious adverse reaction to IVIG (allergic reaction) so your doc will need to source a special blood product with low IGA's. I am very hopeful.

[peglem]

Peglem,

 

OK. They are low enough to justify monthly IVIG for insurance. Don't take your kid off abx, all these kids with CVID tend to be on long term abx for chronic sinusitis. My daughter was and yet over the last 2 years or so her infections were much less. Document all the infections, even the one's not seen by ped. Have ped call immun doc, is your ped on your side???? Don't draw attention to the timing of the infections rather the large number over the last 10 years. We went back many years. Have you read the gammagard web site about CVID? Some lab results scream IVIG like those with IGG's in the 200 or 300 range. Some are not as low but with a history of chronic infection, they may try high dose abx for a while. With no change, then IVIG is recommended. Its up to you and your ped to present your case. Some kids have almost normal levels of IGG's but still suffer from chronic pneumonia and then the docs did deeper for Selected Antibody Def. Lets face it most parents would be devasted by the thought of monthly infusions of blood product so immun docs try everything else first. Rarely do they have parents desperately looking for IVIG. Their gut is to avoid IVIG unless completely necessary. (Who in their right mind wants IVIG for their kid, however what these docs don't know is how severe PANDAS is) Your child DOES qualify, so I am thinking after all you have been through you can now sit back and rest. If this doc won't do it, many others will. (Hint: find an immun doc that also has an infusion clinic combined in his practice).

Its both clinical presentation and lab markers that justify treatment. Her low IGA's complicate things, not to mention make it much more expensive. She runs the risk of a serious adverse reaction to IVIG (allergic reaction) so your doc will need to source a special blood product with low IGA's. I am very hopeful.

See, this is exactly what I thought. When we got those labs back in October, I immediately looked up info on it...and so, thought this was finally it. When we saw the immuno 11/3, he volunteered (before I had a chance to mention it) that he has an associate in the office that treats some PANDAS kids with IVIG (I may switch to his associate- got the name)...So I was very confused when I got this call, and of course, frustrated when the person making the call for him could not answer my questions.

My ped is very much on my side here and the whole reason for these referrals were to try to get PEX and/or IVIG. (recommended to the ped. when he called Dr. Latimer, where he was referred when he called Dr. Cunningham). We even looked up the insurance criteria for "allowed" IVIG: An IgG defiency w/ at least 1 bacterial infection that is can be attributed to the deficiency.

You're right- if there was another way to treat this-NO WAY would I ever consider IVIG. Frankly, if we do get IVIG treatment, I DREAD having to do the treatment and have no idea how we'll manage to get her through it. We'll cross that bridge when we have to. This practice does do infusions.

Thanks, NGU, I'm feeling more hopeful now, too. If we are very lucky, the blood work for the rheumy (we see him again Tuesday) will show high titers (never happened before, but who knows!)