Jump to content
ACN Latitudes Forums

IVIG


Recommended Posts

How long after the diagnosis of PANDAS are you able to get the IVIG treatment discussion going with your doctor? My son is in the begining stages of getting a diagnosis for PANDAS and Im just thinking ahead here wondering what steps or things I should prepare for in case he ends up having it. I hear that doctors only recommend it for severly ill paitents. I guess I don't know how you decide where that line is. And im hearing not all insurance companies cover it. We have Harvard Pilgrim not sure how good they are and if it's not covered how much will it cost? Are the number of treatments different for each child? He's eight years old and i've read the earlier you catch it the better the ivig will work. What can be done to correct the damage to the basil ganglia after you get the PANDAS under control?

Link to comment
Share on other sites

Hi, Darla:

 

Per Dr. K, Dr. Swedo, and a pediatric neuro we saw last Spring, the consensus does seem to be that IVIG and plasmapheresis are serious procedures with some degree of risk and are reserved for patients with severe PANDAS symptoms. I'd still imagine it's a judgment call to be negotiated between the parents and the doc. In our case, our son's August symptom explosion completely crippled him and made him utterly miserable (suicidal talk that scared the heck out of us). We really felt like we had no choice but to try IVIG or PEX. Had a phone consult with Dr. K, and - based on our son's age and symptom severity - he agreed.

 

Might be worth having the phone consult with Dr. K (if you haven't already) to see what he thinks. If you go down that route, it can certainly be expensive - cost depends largely on the amount of Ig you need, which is dependent on the child's weight. I'd guess you're talking in the range of $8000 - $12,000 if you have to pay it all yourself. (We were supposedly pre-approved by our insurance co... but had to pay up-front and are still waiting for reimbursement after 3 months. Argghhh!)

 

What scared us the most, I guess, was a few articles I found on the web asserting that the brain damage from PANDAS is cumulative; beyond a certain point, according to these articles, the child's brain can't completely heal. Also, Dr. K had mentioned that many PANDAS kids improve over time on just abx, but they "don't get back to 100%." That's what we had experienced over the almost 2 years since our son became ill.

 

IVIG and PEX are a tough choice: they're expensive and can be risky. Wish I had better advice, but I think it boils down to how well your child is doing with other treatments, and how badly their symptoms are interfering with a normal life. No easy answers, I fear.

 

Best of luck!

Link to comment
Share on other sites

Thanks for the info.

 

Yeah i'm definately not there yet. The brain damage part is what concerns me most. It sets a panic in me that makes me want to take drastic measures to prevent it happening more. Do you recall what point you had to go beyond before it the brain cannot completly heal? I feel because he is eight years old and I've noticed his tics and emotional behavior the last few years that I wasted all that time. I was told by his pedi that he would "grow out of his tics" But then came the ocd and as I researched I felt his tics really seemed to be part of the ocd. They were not jerky movements but wrist twisting that I could tell he was choosing to perform. So when his ocd became worse these past few months and then he had strep this week, and he had fits of fury all week I thought oh my god, is this PANDAS? I had already contacted his pedi to set up a neurology appt and he is due to see his pediatrician on the 14th (which is is planning on testing his titers). Another thought popped in my mind too. In the begining of the school year his teacher mentioned him having to go to the bathroom a lot, which he does at home. He even notices it. Although to be honest I haven't seen much of that the past week or so. I dunno, I want to stop what ever is causing this and make his brain heal. Do you know of anything - supplements or anything that can help heal the area of the brain that has been damaged? IF this is even PANDAS??

 

 

Hi, Darla:

 

Per Dr. K, Dr. Swedo, and a pediatric neuro we saw last Spring, the consensus does seem to be that IVIG and plasmapheresis are serious procedures with some degree of risk and are reserved for patients with severe PANDAS symptoms. I'd still imagine it's a judgment call to be negotiated between the parents and the doc. In our case, our son's August symptom explosion completely crippled him and made him utterly miserable (suicidal talk that scared the heck out of us). We really felt like we had no choice but to try IVIG or PEX. Had a phone consult with Dr. K, and - based on our son's age and symptom severity - he agreed.

 

Might be worth having the phone consult with Dr. K (if you haven't already) to see what he thinks. If you go down that route, it can certainly be expensive - cost depends largely on the amount of Ig you need, which is dependent on the child's weight. I'd guess you're talking in the range of $8000 - $12,000 if you have to pay it all yourself. (We were supposedly pre-approved by our insurance co... but had to pay up-front and are still waiting for reimbursement after 3 months. Argghhh!)

 

What scared us the most, I guess, was a few articles I found on the web asserting that the brain damage from PANDAS is cumulative; beyond a certain point, according to these articles, the child's brain can't completely heal. Also, Dr. K had mentioned that many PANDAS kids improve over time on just abx, but they "don't get back to 100%." That's what we had experienced over the almost 2 years since our son became ill.

 

IVIG and PEX are a tough choice: they're expensive and can be risky. Wish I had better advice, but I think it boils down to how well your child is doing with other treatments, and how badly their symptoms are interfering with a normal life. No easy answers, I fear.

 

Best of luck!

Link to comment
Share on other sites

also, side note. He is allergic to amox (broke out in hives) Now on azith and has been itching today. He has one day left of treatment (four day treatment) so Im going to ride it out. He looks flushed again like when he had fever in begining of week, but no temp. His eyes are bloodshot again too when they had cleared up perfectly today. They had been covered in red throughout the week.

Link to comment
Share on other sites

Hi Darla,

I'm sorry to hear that your child is sick.

Everyone's situation is different and I bet somehow you will know when the time is right to explore IVIg as a treatment option. Read all you can about it. I know that my dd has benefited from it substantially so far and I wish we could have done it straight away when her severe OCD symptoms exploded 18 months ago but we couldn't for many reasons. One is that we didn't know pandas existed for the first 7 months of her illness, and two because we were out of the country.

Hopefully the antibiotics will help. Is your child staying on the antibiotics? I think most of the pandas kids on here are on some sort of prophylactic antibiotic. Frankly I am terrified to take my child off of hers.

My dd had IVIg and is now doing very good. But as far as supplements, I give omega 3 (1200mg twice per day), mastica, ola loa multivitamin, and immudyne immune support macroforce plus ip6...in addition to antiviral and antibiotic and probiotics. If she has an increase in symptoms I am thinking of starting transfer factors which are waiting in my fridge just in case.

Good luck to you and your family.

Link to comment
Share on other sites

Thanks. I am happy for you that ivig worked. I know sometimes the circumstances that arise can hinder how quickly you get to these issues, not knowing etc.. it's just a process. I have a feeling he is allergic to the azith hes just finished yesterday. Rash and swollen face. Hes also allergic to amox. He got bad hives from that a year ago. What will I do if that's the case? He won't be able to go on any probiotics will he? I don't know much about the tranfer factors. What will that do exactly? Will it help the antibodies not attack the healthy cells in the basil ganglia?

 

Hi Darla,

I'm sorry to hear that your child is sick.

Everyone's situation is different and I bet somehow you will know when the time is right to explore IVIg as a treatment option. Read all you can about it. I know that my dd has benefited from it substantially so far and I wish we could have done it straight away when her severe OCD symptoms exploded 18 months ago but we couldn't for many reasons. One is that we didn't know pandas existed for the first 7 months of her illness, and two because we were out of the country.

Hopefully the antibiotics will help. Is your child staying on the antibiotics? I think most of the pandas kids on here are on some sort of prophylactic antibiotic. Frankly I am terrified to take my child off of hers.

My dd had IVIg and is now doing very good. But as far as supplements, I give omega 3 (1200mg twice per day), mastica, ola loa multivitamin, and immudyne immune support macroforce plus ip6...in addition to antiviral and antibiotic and probiotics. If she has an increase in symptoms I am thinking of starting transfer factors which are waiting in my fridge just in case.

Good luck to you and your family.

Link to comment
Share on other sites

Thanks. I am happy for you that ivig worked. I know sometimes the circumstances that arise can hinder how quickly you get to these issues, not knowing etc.. it's just a process. I have a feeling he is allergic to the azith hes just finished yesterday. Rash and swollen face. Hes also allergic to amox. He got bad hives from that a year ago. What will I do if that's the case? He won't be able to go on any probiotics will he? I don't know much about the tranfer factors. What will that do exactly? Will it help the antibodies not attack the healthy cells in the basil ganglia?

 

Hi Darla,

I'm sorry to hear that your child is sick.

Everyone's situation is different and I bet somehow you will know when the time is right to explore IVIg as a treatment option. Read all you can about it. I know that my dd has benefited from it substantially so far and I wish we could have done it straight away when her severe OCD symptoms exploded 18 months ago but we couldn't for many reasons. One is that we didn't know pandas existed for the first 7 months of her illness, and two because we were out of the country.

Hopefully the antibiotics will help. Is your child staying on the antibiotics? I think most of the pandas kids on here are on some sort of prophylactic antibiotic. Frankly I am terrified to take my child off of hers.

My dd had IVIg and is now doing very good. But as far as supplements, I give omega 3 (1200mg twice per day), mastica, ola loa multivitamin, and immudyne immune support macroforce plus ip6...in addition to antiviral and antibiotic and probiotics. If she has an increase in symptoms I am thinking of starting transfer factors which are waiting in my fridge just in case.

Good luck to you and your family.

 

 

I don't see why he couldn't take probiotics, but of course talk to your doctor about it. I didn't put my child on probiotics until she'd been on daily antibiotics for quite a while and never needed it apparently (we did yeast testing after about 6 months of penicillin--but when we changed to augmentin I did put her on probiotics). If it were me I would find another antibiotic that my child COULD take. But that's me. As far as transfer factors, I don't really know. I read a book about them and it seems like there is a lot of research on them being an immune modulator and good for keeping the immune system healthy, even for autoimmune issues. The book I read even mentions PANDAS in it. Anyway, transfer factors are a type of cytokine and from what I recall are part of normal colostrum. And made from cow and pig colostrum. They are taken orally, so the person taking them become immune to the things that the cow and pig have been exposed to. They can make transfer factors specifically for a particular illness, apparently, people have looked at this if there were to be a bird flu outbreak they can manufactor specific transfer factors faster than getting immunizations for it and without the risks. anyway, I am still kind of undecided on it but check out this website to learn more www.transferfactorresearch.com

 

Good luck. To me, your son does sound suspicious for pandas. The rages and acting out in a way you have never seen before are very suspicious.

Link to comment
Share on other sites

Our son was first diagnosed with PANDAS at age 4 1/2 and he responded well to short rounds of zithromax whenever he would have an exacerbation of symptoms. We didn't start the ongoing antibiotics until this past summer (at age 7). For us, that was too late and he had a really bad PANDAS attack which caused full Tourette's with coprolalia, ocd, severe anxiety, adhd behaviors, and loss of impulse control. He's been out of school ever since and we are doing IVIG next week. After continous Ceftin since September and doing biofilm treatment along with it for the past 5 weeks, he is greatly improved, but still has damage from the attack in the Fall. For my husband and I, making the decision to do IVIG now (with it's risks) is to save him from further brain damage. We just completed his evaluation with the school district and he went from the highly superior range in all areas, to very low on the cognitive piece. He's a kiddo that could build elaborate lego structures and now just stares at the legos and doesn't seem to know how to build the ideas he has. He also has continued ADHD symptoms which he didn't exhibit before, has anxiety about balloons of all things, and still can have daily meltdowns. O ur doctor has also recommended transfer factor which we haven't tried yet, but we do give him colostrum from Kirkman Labs.

 

In the talk I heard from Dr. Swedo at the DAN! conference, she mentioned that several kids in their study had symptoms of enuresis so your son's frequent urination also makes sense from a PANDAS perspective.

 

We are receiving coverage for the IVIG treatment, but not because of the PANDAS. Our doctor faxed in lab results which showed our son had a compromised immune system in other areas.

 

If you do get the PANDAS diagnosis, I would take it seriously and do the prophylactic antibiotics. I wish we had from the beginning and had been able to avoid the nightmare that happened in the Fall.

 

Hope this helps.

 

Jena

Link to comment
Share on other sites

I can't imagine seeing my son go from a smart healthy child to sitting there in front of legos not knowing where to start. My heart breaks for you. Our children are fading away it seems sometimes. It's like you have to fight for your healthy child to just remain that healthy. A constant fight with the outside world. I know it sounds dramatic but when your exausted from it all and your mind is just spent thats how it feels...and i've only been doing this for a few months! LOL

 

I hope that your son has a full recovery and you get him back! Im not sure if you have posted how he is doing now, but keep us posted if you can.

 

So is there a test that shows a compromised immune system? Also, does it fit the description that if my sons has pandas and had a strep infection in which his behavior was off the charts along with extreame anxiety, seperation anxiety tearfullness all of that. Only to be this perfect normal little happy boy today after finishing his azith yesterday. IS that what PANDAS does?

 

Our son was first diagnosed with PANDAS at age 4 1/2 and he responded well to short rounds of zithromax whenever he would have an exacerbation of symptoms. We didn't start the ongoing antibiotics until this past summer (at age 7). For us, that was too late and he had a really bad PANDAS attack which caused full Tourette's with coprolalia, ocd, severe anxiety, adhd behaviors, and loss of impulse control. He's been out of school ever since and we are doing IVIG next week. After continous Ceftin since September and doing biofilm treatment along with it for the past 5 weeks, he is greatly improved, but still has damage from the attack in the Fall. For my husband and I, making the decision to do IVIG now (with it's risks) is to save him from further brain damage. We just completed his evaluation with the school district and he went from the highly superior range in all areas, to very low on the cognitive piece. He's a kiddo that could build elaborate lego structures and now just stares at the legos and doesn't seem to know how to build the ideas he has. He also has continued ADHD symptoms which he didn't exhibit before, has anxiety about balloons of all things, and still can have daily meltdowns. O ur doctor has also recommended transfer factor which we haven't tried yet, but we do give him colostrum from Kirkman Labs.

 

In the talk I heard from Dr. Swedo at the DAN! conference, she mentioned that several kids in their study had symptoms of enuresis so your son's frequent urination also makes sense from a PANDAS perspective.

 

We are receiving coverage for the IVIG treatment, but not because of the PANDAS. Our doctor faxed in lab results which showed our son had a compromised immune system in other areas.

 

If you do get the PANDAS diagnosis, I would take it seriously and do the prophylactic antibiotics. I wish we had from the beginning and had been able to avoid the nightmare that happened in the Fall.

 

Hope this helps.

 

Jena

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...