Quick update on Momto2 and her 2!

[momto2pandas]

Hi all,

 

Just wanted to post an update. We saw Dr. B on Monday, and he wants all three of us to have IVIG for our immune conditions (PANDAS irrelevant to the decision as it turns out.) Ds3 has quite bad CVID at this point - worse on the last round of testing than on our February tests - and Dr. B feels confident that he will need monthly IVIG for quite some time if not indefinitely. First treatment high dose, then lowering. I haven't yet broken it to the little guy that he's going to have to go through this every month. I just can't picture it...

 

Ds6 has IgG subclass and specific antibody deficiency. Dr. B thinks he may be able to get away with one high-dose treatment for now to help get rid of his raging strep...and then wait and see.

 

I have specific antibody deficiency and "immune complex disease" (news to me), and will be treated monthly for the latter. I'm trying to adjust to that idea... I never knew that these joint pains I get when infected with strep, the old drug-induced lupus I had years ago, misc other stuff that never really affected my life, all meant that I had immune complex disease, but Dr. B put it all together and wants to keep a damper on it. When I looked it up online, one of the first things it mentioned was that it happens sometimes in people who have had histories of chronic malaria, which I had for years (had recurrent episodes after my first big episode), but which I hadn't given much thought to for a while.

 

We all have strep, including DH, who is now (for the first time during this whole thing) on antibiotics. And now the kids and I are all on a few weeks of steroids (for massive sinus inflammation) and antibiotics. The kids look (and act) TERRIBLE on the steroids (only 2 doses so far); it's scary. But I always have a terrible first 2 days on them before it turns around so nicely, so I'm going with it for now... Interestingly, this time around on the pred I am very tired, but not all that moody.

 

We are still back east, staying with my godparents and waiting for insurance approval. We got insurance approval right away for ds3 given his condition and acute infection, but are waiting on ds6 and myself. Hubby will fly out pronto once we know the timing. Hoping to start treatment tomorrow but it could be next week.

 

I am quite nervous not only about getting all three of us through the procedure itself at once (esp since I may be on my own until DH gets here!) but mostly about what I've seen called the "turning back of the pages". We have really been sick with this Strep since Oct, but we have all been doing reasonably well PANDAS-wise compared to what we've seen in the past, and if I have to turn back 40 years' worth of pages, I'm looking at a rough ride ahead....and all the while, I'll be taking care of 2 little PANDAS and whatever reactions they have. I have never needed disability except for the usual post-partum few weeks, but I am looking into applying for it and planning to take a couple of weeks off of work. I just can't see how I can plan to go back to work on Monday (even part time) and take on all of that responsibility right away. I'm finding it hard enough to get anything done this week on the steroids alone....

 

My DH may be in for a roller coaster of a few weeks ahead, and then maybe a brand new and improved family! How surreal is that!

[P_Mom]

Wow! How interesting, nerve rackng, but, HOPEFUL! I hope it all works out for you all!

 

Can I ask what your sons immune numbers were that determined Dr. B's suggections? And, what exactly is an immune complex?

 

Thanks!

[momto2pandas]

Ds3's total IgG was somewhere in the 400's (lower limit of normal was somewhere in mid 500's). His IgG3 was also low out of range (don't recall the number), and he only responded to 1 of the Prevnar serotypes vaccinated (I had miscounted the first time when I though it was 3). Normal response is at least 5 out of 7. He also had low (out of normal range) albumin/globulin due to too little IgG. And zero antibody response to strep (ASO or anti-dnase , despite clear infection, which Dr. B said was just because his immune system is too weak to launch detectable antibodies to it. Poor little guy. His little sinuses are so inflamed that he doesn't drain at all and we can barely understand his speech. We are now giving a lot of mucinex and saline spray and hot baths in addition to the steroids and antibiotics, since Dr. B says that we need to get him to drain. Tonight one little booger came out of all of my efforts on his nose, smaller than a petit pea, and I was overjoyed! A drained sinus starts with a single booger! May he have many more in the coming days...

 

Ds6's total IgG was in the low-normal range. His IgG3 was low out of range (don't recall the exact number, but it was substantially below normal). He responded to 3 out of the 7 Prevnar serotypes vaccinated, though most of those were not great responses (just over the border). He also had no ASO response to strep, though he did have a very high anti-dnase b, so at least his immune system was doing something with it.

 

An immune complex is basically a great big glob of immune cells + antigens, that can get lodged in unfortunate places (like your joints and also your organs) and cause inflammation and tissue damage. I do have some cartilage damage in my shoulder (interestingly only the left side, same side where I tend to get the swollen lymph node), but did not know that it was from this. I also was diagnosed with kidney damage at some point (not bad enough to have consequences, but there on urine tests) that I was told was probably some sort of residual effect of anorexia nervosa, but now I have to wonder since this is also caused by immune complex disease.

 

I don't think this is a routine part of PANDAS. I asked Dr. B if he would take into account my immune complex disease is considering my kids' treatment (particularly for ds6, for whom the plan is NOT monthly treatment), and he basically said no, they were too young to be worrying yet about whether that could happen down the road. Who knows if they will encounter the triggers for it.

 

 

 

 

 

Wow! How interesting, nerve rackng, but, HOPEFUL! I hope it all works out for you all!

 

Can I ask what your sons immune numbers were that determined Dr. B's suggections? And, what exactly is an immune complex?

 

Thanks!

[sf_mom]

I wanted to wish you all the best with your upcoming treatments!!

 

Specially, how old is your 3 year old? 3, 3 1/2 or closer to 4. My DD who is only 2.75 years old, her IGGs were in the low 300's with deficiencies in 1,3,4 Subclasses. We've been waiting it out with our twins and I'm wondering what might be a good age to treat if things don't improve.

 

Thanks, Wendy

[Fixit]

I have specific antibody deficiency and "immune complex disease" (news to me), and will be treated monthly for the latter. I'm trying to adjust to that idea... I never knew that these joint pains I get when infected with strep, the old drug-induced lupus I had years ago, misc other stuff that never really affected my life, all meant that I had immune complex disease, but Dr. B put it all together and wants to keep a damper on it. When I looked it up online, one of the first things it mentioned was that it happens sometimes in people who have had histories of chronic malaria, which I had for years (had recurrent episodes after my first big episode), but which I hadn't given much thought to for a while.

 

i wish you well and luck...i don't know how you will handle that coaster on your own, but you will, you are very knowledgeable and that will help you.

i hope it goes easier than imaginable on the little guy...maybe he'll just handle it better than can be expected...my ds is the best patient any doc has seen!!!!

 

how did you contract malaria? and do yo know when?

and what do mean by chronic?

i've mentioned before my dh grandfather had malaria in the war and had a psychotic episode and i think things trickled down from there

[momto2pandas]

Ds3 will be 4 two weeks from today, so he's considerably further along than your DD. From the little I've read, a lot of maturation of the immune system can happen between ages 2 and 4 on its own. The reason that we can't really put it off is that his sinus infection situation is really bad. Not only does he have bad symptoms, but he has really fallen off of his growth curve over the last several months and Dr. B suspects that it's due to the chronic infection and poor appetite. He's tired all of the time. So the decision is really a clinical one as well as by the numbers. Dr. B said that if he stops getting infections, we can stop the monthly IVIG and wait and see if he does better once he's back on his feet - even if his numbers are still low.

 

I wanted to wish you all the best with your upcoming treatments!!

 

Specially, how old is your 3 year old? 3, 3 1/2 or closer to 4. My DD who is only 2.75 years old, her IGGs were in the low 300's with deficiencies in 1,3,4 Subclasses. We've been waiting it out with our twins and I'm wondering what might be a good age to treat if things don't improve.

 

Thanks, Wendy

[momto2pandas]

I have specific antibody deficiency and "immune complex disease" (news to me), and will be treated monthly for the latter. I'm trying to adjust to that idea... I never knew that these joint pains I get when infected with strep, the old drug-induced lupus I had years ago, misc other stuff that never really affected my life, all meant that I had immune complex disease, but Dr. B put it all together and wants to keep a damper on it. When I looked it up online, one of the first things it mentioned was that it happens sometimes in people who have had histories of chronic malaria, which I had for years (had recurrent episodes after my first big episode), but which I hadn't given much thought to for a while.

 

i wish you well and luck...i don't know how you will handle that coaster on your own, but you will, you are very knowledgeable and that will help you.

i hope it goes easier than imaginable on the little guy...maybe he'll just handle it better than can be expected...my ds is the best patient any doc has seen!!!!

 

how did you contract malaria? and do yo know when?

and what do mean by chronic?

i've mentioned before my dh grandfather had malaria in the war and had a psychotic episode and i think things trickled down from there

 

I got malaria in 1989 while living in Madagascar. Like the 21-year-old immortal that I thought I was, I decided that I didn't really need to keep on taking malaria medicine now that I was almost "a local". In less than 2 weeks, I had malaria. After the first episode, which was about 3 weeks long, I had "recrudesences" that lasted a couple to a few days every several weeks for several years, even after I came back to the States. I don't know if I would say that they were associated with psych symptoms, though. The fevers got really high (circa 105) and I always got really delerious and disoriented/confused , but I think that might just have been the high temp rather than anything autoimmune. Who knows.

[sf_mom]

I absolutely think you are doing the right thing for BOTH your son's and yourself. Our older son is doing really well post 3 IVIG treatments.

 

Our current plan is to retest the twins next month and again in 12 weeks.... if there is not improvement Dr. K will most likely treat for PID. By the way, our daughter also went from 40% in weight to 7%...... this was prior to me realizing PANDAs.

[momto2pandas]

I just wish Aetna agreed with you! They denied to cover it for me, despite the fact that I meet their detailed written criteria for coverage with no exceptions, and have it all documented. I am hoping that Dr. B will change their minds, but if not, we plan to hire a lawyer. What good is insurance if they can back off like this on the written stipulations of their coverage contract as soon as you need something? I am mostly afraid that if I don't get treated and am never able to get over this chronic strep infection, then the kids will be continually exposed to it with little hope of that situation ever ending. I have little hope for the boutique antibiotics I'm taking now that I've been through months of all of the usual suspects with no luck. We could pay for IVIG for me if need be (not indefinitely but at least for now) but I really don't want Aetna to get away with that.

 

I don't suspect any kind of PANDAS-related things for my little guy's failure to grow. He's not weird about food behaviorally, at all. He's just eaten very little since his nose got totally blocked. I don't think he can smell anything with his nose so stuffy, and infections at the level that he has really kill the appetite.

 

 

I absolutely think you are doing the right thing for BOTH your son's and yourself. Our older son is doing really well post 3 IVIG treatments.

 

Our current plan is to retest the twins next month and again in 12 weeks.... if there is not improvement Dr. K will most likely treat for PID. By the way, our daughter also went from 40% in weight to 7%...... this was prior to me realizing PANDAs.

[sf_mom]

You know a health care advocate might be more effective with an insurance company over an attorney. Believe it or not, my insurance company didn't want to pay for my twin pregnancy!!!!!!! I was 35 weeks pregnant when they finally started covering and babies came at 36 1/2 weeks. The advocate we hired did a fantastic job. Good luck

 

My daughter's not weird about food either... I just think her immune system is in overdrive and not gaining as a results. I actually think she eats more than her twin who is a good 10 pounds heavier. I was shocked when she dropped so dramatically in %. At the time, Dr. told me to not be concerned.

 

-Wendy

[kim]

Momto2,

 

Do you know if monthly IVIG will eventually clear any immune complexe?

 

I couldn't really find much regarding that? I quickly read thru this (kind of an overview of what an immune complex is) and saw this at the end.

 

BTW...congratulations on the booger retrieval yesterday, lol. Funny what can bring tremendous joy to a parent

 

 

http://www.uchsc.edu/immuno/cohen/PDF%20fi...7630%202009.pdf

 

 

TREATMENT in all these conditions is anti-inflammatory and sometime

immunosuppressive. If a patient has hives (urticaria), they may be a result of the

anaphylatoxic release of histamine, and respond to antihistamine treatment. In the worst

cases, plasmapheresis (removal and replacement of plasma with return of red and white

blood cells) can be very helpful as a temporary measure.

[momto2pandas]

Thanks for this, Kim. That's a great article. Interestingly, I did start getting hives last week (went away with a lot of benadryl) and a rash on my shins just a couple of days ago. I assumed that was from the steroids but maybe not. Dr. B didn't really elaborate, but the IVIG for one thing seems like it may be the only way I can get rid of this strep (with no antibodies of my own), which I think would cut down on the immune complexes, and it suppresses autoimmunity. I don't know if it actually clears the complexes, though - that's a really good point. Does seem like PEX then IVIG would make sense.

 

Can't believe I'm talking about myself in these terms...

 

 

 

Momto2,

 

Do you know if monthly IVIG will eventually clear any immune complexe?

 

I couldn't really find much regarding that? I quickly read thru this (kind of an overview of what an immune complex is) and saw this at the end.

 

BTW...congratulations on the booger retrieval yesterday, lol. Funny what can bring tremendous joy to a parent

 

 

http://www.uchsc.edu/immuno/cohen/PDF%20fi...7630%202009.pdf

 

 

TREATMENT in all these conditions is anti-inflammatory and sometime

immunosuppressive. If a patient has hives (urticaria), they may be a result of the

anaphylatoxic release of histamine, and respond to antihistamine treatment. In the worst

cases, plasmapheresis (removal and replacement of plasma with return of red and white

blood cells) can be very helpful as a temporary measure.

[momto2pandas]

Also, on the topic of boogers, ds3 started picking his nose yesterday. I take that as a sign that the inflammation has lowered enough to allow stuff to actually start draining down into his nostrils. Had to laugh because I am so pleased to see my kid picking his nose. His voice sounds much less congested today.

 

 

Momto2,

 

Do you know if monthly IVIG will eventually clear any immune complexe?

 

I couldn't really find much regarding that? I quickly read thru this (kind of an overview of what an immune complex is) and saw this at the end.

 

BTW...congratulations on the booger retrieval yesterday, lol. Funny what can bring tremendous joy to a parent

 

 

http://www.uchsc.edu/immuno/cohen/PDF%20fi...7630%202009.pdf

 

 

TREATMENT in all these conditions is anti-inflammatory and sometime

immunosuppressive. If a patient has hives (urticaria), they may be a result of the

anaphylatoxic release of histamine, and respond to antihistamine treatment. In the worst

cases, plasmapheresis (removal and replacement of plasma with return of red and white

blood cells) can be very helpful as a temporary measure.