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Started IVIG with Dr. Bouboulis


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Hi all,

 

My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday.

 

Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great.

 

Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back.

 

We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day.

 

We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits.

 

I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG.

 

Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription.

 

Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it.

 

The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time.

 

I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions.

Alex

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Hi all,

 

My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday.

 

Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great.

 

Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back.

 

We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day.

 

We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits.

 

I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG.

 

Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription.

 

Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it.

 

The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time.

 

I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions.

Alex

 

Alex,

 

Glad to hear that all went well. As you know, we will probably be doing the same thing as you,however, the Immunologist here, thougth we should do Plasmapheresis again followed by the IVIG. Not sure which route we will be taking yet.

 

Just FYI, Dr. K told us to make sure and keep hydrated before during and after the IVIG, to help with the headaches, and at the first sign of a headache to give tylenol or motrin.

 

I hope this continues to help.

 

Linda

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Alex, thanks for sharing the details of your son's experience. This is very helpful since we may be following in your footsteps some time soon. My son had plasmapherisis through Dr. Latimer in early October and we saw some improvements in symptoms for a few weeks but some of that was lost after he came down with a stomach virus and fever at the end of October. In November we started to see some very encouraging improvements after slowly increasing his Zithromax from 250 mg three times a week to 500 mg a day. Since then the improvements in focus and attention, especially when doing homework, have been much more obvious and we are gettting very good feedback from his teachers, but there are still remaining issues with OCD and spacing out episodes that I don't think will resolve without IVIG. I am ready to contact Dr. Bouboulis about taking the next step, which I hope will be monthly IVIG. Like your son, my son has low IGA but he also has low IGG, low IGM, and also failed most of the strep pneumoniae titers, and Dr. B does not think getting insurance approval will be a problem. I am glad to hear that you were able to get coverage and things went smoothy. It is interesting that your son tested negative for the penicillin allergy and was able to go on Augmentin. My son broke out into hives all over his body once after being on Amoxicillin when treated for a strep. I have always assumed it was an allergy to Amoxicillin and not a reaction to the strep, but I'm now not sure of that and am wondering if we should ask Dr. B. to test him at some point. How did he test your son for this?

So far Zithromax at the current dose seems to be working very well, but it would be good to know if there really is an Amoxicillin allergy going on. Please keep us posted on how your son is doing.

 

Ellen

 

Hi all,

 

My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday.

 

Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great.

 

Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back.

 

We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day.

 

We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits.

 

I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG.

 

Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription.

 

Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it.

 

The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time.

 

I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions.

Alex

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Hi Alex, we were there with my dd on Wednesday...were you there that day? I know 3 others pandas kids from the forum were there getting ivig that day, too. Sorry I missed meeting you in person if that was the same day. Glad to hear your son had no side effects.

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Ellen,

 

I just want to say our son too broke out in a rash after taking Amoxicillin. I too think it has more to do with the strep then the antibiotic.

 

Alex, thanks for sharing the details of your son's experience. This is very helpful since we may be following in your footsteps some time soon. My son had plasmapherisis through Dr. Latimer in early October and we saw some improvements in symptoms for a few weeks but some of that was lost after he came down with a stomach virus and fever at the end of October. In November we started to see some very encouraging improvements after slowly increasing his Zithromax from 250 mg three times a week to 500 mg a day. Since then the improvements in focus and attention, especially when doing homework, have been much more obvious and we are gettting very good feedback from his teachers, but there are still remaining issues with OCD and spacing out episodes that I don't think will resolve without IVIG. I am ready to contact Dr. Bouboulis about taking the next step, which I hope will be monthly IVIG. Like your son, my son has low IGA but he also has low IGG, low IGM, and also failed most of the strep pneumoniae titers, and Dr. B does not think getting insurance approval will be a problem. I am glad to hear that you were able to get coverage and things went smoothy. It is interesting that your son tested negative for the penicillin allergy and was able to go on Augmentin. My son broke out into hives all over his body once after being on Amoxicillin when treated for a strep. I have always assumed it was an allergy to Amoxicillin and not a reaction to the strep, but I'm now not sure of that and am wondering if we should ask Dr. B. to test him at some point. How did he test your son for this?

So far Zithromax at the current dose seems to be working very well, but it would be good to know if there really is an Amoxicillin allergy going on. Please keep us posted on how your son is doing.

 

Ellen

 

Hi all,

 

My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday.

 

Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great.

 

Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back.

 

We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day.

 

We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits.

 

I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG.

 

Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription.

 

Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it.

 

The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time.

 

I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions.

Alex

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Thanks for the update. We are on the same path. We are going to do IVIG this month. Right now my son is doing well but he has just come out of an exacerbation. When you look at how good he is now it is hard to believe he even has an issue but I know he needs it. We have had two exacerbations since PEX (both of which were caused by illness). We are doing 1mg/kg and will plan to do the second six weeks later. After that the immunologist and Neurologist here in Charlotte will re-evaluate. Glad to hear you are moving forward.

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Hello

 

I've read and Dr T also mentioned that a rash while on amox, if not allergy, is often a toxic rash and can be because the child has another infection at the same time.. usually epstein barr virus also known as mononucleosis.

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Hi all,

 

Ellen, Dr. B just gave Eli a standard allergy skin test for penicillin. It was a couple of pin pricks in the upper arm and then waiting twenty minutes or so to look for a reaction. No reaction so Dr. B wrote the prescription. We had an epinephrine pen on hand when we gave him the first dose just in case, but Dr. B really had no concerns of any sort of significant reaction after the skin test came up negative.

 

Alex

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Alex,

Thanks for the update. I hope this is the key for your son. Can you explain what pneumococcal titers are?

 

Angela

 

Hi Angela, hope things are going well for your daughter. My wife just sent you an e-mail to check in on you. The pneumococcal titers are the antibodies that supposedly should be present in people vaccinated with the pneumonia vaccine. Failing the titers may or may not be an indicator of an immunological problem showing an inability to mount the correct antibody defense against infections. There was a long thread on this topic going back and forth here a few days ago and apparently there is not a consensus. It sure seems though that a high percentage of PANDAS kids fail these titers. Main point for us though was that it was part of the justification for IVIG to the insurance company.

 

Alex

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Alex,

so does that mean that your son was vaccinated against pneumonia and still had low antibodies present? I've never heard of a pneumonia vaccine. Is that a normal childhood vaccine?

 

Also, was wondering if you ever saw Dr. T. I thought you had planned to go at the end of Nov. Did you see a different doctor instead? Or more than one?

 

Angela

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Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break!

 

Good luck with the IVIG. We think Dr. Bouboulis us GREAT!

 

Lynn

 

Hi all,

 

My son had his first of what will be monthly IVIG treatments through Dr. Bouboulis, an immunologist out of Connecticut, yesterday.

 

Quick back story, my son develped full blown PANDAS after an untreated Strep infection last April. Looking back we realize he had some less severe episodes prior to this most recent. After several different antibioitcs and a month of Prednisone, all of which were somewhat but not completely successful, we opted for Plasma Exchange through Dr. Latimer this last August. It took about a week after the PEX to see big changes but for a few weeks we had our son back and it was great.

 

Then things started to go down hill with all his PANDAS symptoms returing over the course of a couple of weeks. Turns out he had an infected tooth during the time the symptoms returned and we have suspected that it may have been the cause. Also, his ASO titers, which were close to zero after the PEX, climbed back in to the 200's, indicating, I guess, that he is still harboring strep somewhere in his sytem. So, not really sure if the tooth or strep, or both was the cause of the PANDAS coming back.

 

We saw Dr. Bouboulis for the first time in late Novemeber. He ordered a host of blood tests for my son which included Igg levels, pneumococcal titers, ASO, anti-dnase B, lyme disease, calcium, vitamin d, and some other stuff. He also tested my son for penecillin allergy, which my son supposedly had since some hives while on penicllin as a two year old. The test came up negative and Dr. B. prescribed Augmenitin at 2X875mg per day.

 

We saw some improvement on the Augmentin, but nothing dramatic, over the course of Decemeber. We saw Dr. Bouboulis a second time this last Wednesday. We discussed the results of all the testing which found that Eli had low normal total IgG with low IgA and failed most of the pneumococcal titers. Dr. B's opinion was that because Eli did not have dramatic improvement on the Augmentin and that we had already done antibiotics, prednisone and PEX that monthly IVIG was the next step, but that it might be difficult to get approved through the insurance company, since there were no major immunological deficits.

 

I have government insurance through the Navy Reserves and they have not questioned any of medical decisions made by Eli's doctors throughout this PANDAS journey, and this again proved to be the case. We were approved for IVIG.

 

Also during the Wednesday appt. I requested that we switch the antibiotic to Augmentin XR and Dr. B was all for it and wrote the prescription.

 

Compared to Plasma Exchange, the IVIG was a non-event. The infusions are done at Dr. B's office. We had a room to ourselves. The nurse that does the infusions is great. She put the IV in Eli's hand quickly and painlessly and started the infusion before I even realized it.

 

The dose was 1 gram per KG of body weight of Gammagaurd IVIG. The treatment took 5 hours but went off without a hitch. The nurse pretreated Eli with tylenol and benadryl. During the treatment he was comfortable and watched a movie on a portable dvd player they have, played cards with me and read a book. On the way out to the car when leaving the doctor's office he said he was sleepy and then slept for three hours during the drive home. He was in a decent mood when we got home and ate and drank normally. He woke up this morning with a headache and not much appetite. He layed on the couch most of the day still with a headache and had a slight fever. By tonite he perked up, ate a full meal and went to bed at his normal time.

 

I'm sure it is too early to tell anything, but he seemed to have a pretty good day today PANDAS wise. We will keep you posted. Please ask if you have questions.

Alex

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Alex,

so does that mean that your son was vaccinated against pneumonia and still had low antibodies present? I've never heard of a pneumonia vaccine. Is that a normal childhood vaccine?

 

Also, was wondering if you ever saw Dr. T. I thought you had planned to go at the end of Nov. Did you see a different doctor instead? Or more than one?

 

Angela

 

It's vaccination against Streptococcus pneumoniae which causes pneumonia, ear infecdtions and other types of infections. I'm not sure when it became standard practice to vaccinate against it, somewhere around 2000 I think. Not sure if kids older than 10 would have gotten it.

 

Alex

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Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break!

 

Good luck with the IVIG. We think Dr. Bouboulis us GREAT!

 

Lynn

 

Hi all,

 

Yes, Tricare. As a reservist it's called Tricare Reserve Select but it is Tricare Stnadard where we pay a preumium. No difference in coverage that I'm aware of though.

It's been great. Haven't needed a referral on anyting.

 

Alex

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