Preparing for IVIG #1- need any helpful advice

[3boysmom]

It has been about 6 months since I have posted and sadly I see many new names....sorry to those of you that are new and dealing with those dark days. I still see some of my long time late night cyber buddies that held my hand through the long nights of searching for answers (forever grateful).

 

Here is as quick of an update as I can think to give.

 

DS11 (9 when things hit the fan) He has been on Augmentin XR 1000 x 2 for a year and a half. We have also had 2 rounds of steroids and he was put in a private school with only 7 other kids in the class and teachers called us if anyone was sick.

 

He is so much better than those scary months of dysfunction.

 

I could be on here hours listing ALL of the things we have done over the coarse of these years: Cunningham’s on all 3 boys, T & A surgery on 2 of the boys, Flying to see Dr. Latamire, flying to see Dr. B., treating the dog, ERP therapy.....much, much more.

 

Well, when it was clear that we were dealing with 3 PANDAS kids...I stopped getting on this forum and needed to be treated for Post Traumatic Stress.

 

I am feeling stronger and ready to step back in the ring for yet another round with this beast. DS8 has tics but no OCD - treating with low prof dose antibiotics, DS 10 -titers keep rising (now 1920-which is where his brothers were when he woke up different) but not big issues & treating with prof antibiotics. We are attempting to stop the train wreck with the 2 younger brothers so that it never gets to the point that the first son did. (Of course it took a long time to get the first son treatment because we had never heard of PANDAS...you know the routine!

 

 

I know I am rambling but I am tired: When I first read this forum 2 years ago I said to myself "that will not be us", "we will take the antibiotics like that kid SAMMY and be done with this illness!" "We won't need steroids, our other kids will not have this, and we will never get to the point of needing IVIG!"

 

OK friends, I am here to now ask for helpful advice on what to do to prepare for IVIG for PANDAS DS11. I looked past all of that before because I was thinking that it did not pertain to us, now here we are. I see that some of my older posting friends that were hold outs like us have also gone the IVIG route. Praying all is well for you all!! IVIG will be with Dr. B on July 25 & 26. I remember something about drinking lots of water &.....????

 

I just want to say that DS11 is MUCH better than 2 years ago, but still not back to himself. We struggled with the choice of where do you say good is good enough and be happy with the progress that you have or as he gets older are we missing the opportunity to completely heal him. We are just worried that the IVIG will bring him back to the scary stage and he will not return & neither will we for hurting him.

 

We came to this decision for IVIG because he misses his life and friends and as he gets older and more handsome each day...I am finding it harder to "keep my protective bubble around him". He is great until exposed to Strep then within hours we are battling our way through problems that take weeks to return from. (He isn't even getting the strep-just exposed to others that have it.) Finally let him have a friend spend the night, kid went home feeling sick in the morning, DS11 began the constant questioning and hand washing, later that day kid goes to doctor...Strep! We are hoping the IVIG with boost his immune system and this will not continue to happen.

 

Thank you all in advance.

 

BTW-we have been fighting BCBS of Texas and have been denied coverage.

[michiganpandas]

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you.

 

I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions.

 

Again, good luck!!!!

[3boysmom]

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you.

 

I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions.

 

Again, good luck!!!!

The big challenge is to stay strong and don't give up trying to find answers. Every child is different so don't get too confused by these posts and some of the things people are trying. Also, keep a daily log because as time goes by and you think you will remember all the things you have tried...you won't...also you may be able to see what has helped and what has not. If you are not use to being outspoken, you may need to go outside of your comfort zone to advocate for your child. (Speaking up to doctors or teachers....not ugly...I'm just saying: don't let your mama gut instinct get squashed because of intimidation) The best website for my family to refer to has been Pandasresourcenetwork.org You can find a support group in your area and it is kept upto date. When we began our search 2 years ago...when you googled PANDAS...you got websites to the black and white bear...no joke! We have come along way this past year and as bad as it is that we do not have all of the answers; at least we are not the ones that went through this 10 or even 5 years ago. We wasted a lot of time trying to find a doctor around here to help us and if they were willing to be open minded, we spent time and money trying to learn and then teach them...if you can get to a PANDAS doctor, it is worth it. (We did not get antibiotics soon enough and then we were in serious trouble as we then went into Sydenhym's Chorea along with the PANDAS. He was not testing positive for strep so the doctors would not give him antibiotics. The strep must have been hiding out somewhere because his titers were 1920 and not to mention Sydenhym's Chorea comes from untreated strep) Once the Augmentin XR 1000 twice a day began, the downword spiral stopped and the improvement began within days. (of course from my first post you can see that we are still on that road)

 

One last but most important thing that helped me...prayer. Patience, Guidance, & Unconditional Love

 

 

Be tuff mom, you will surprise yourself at how much this challenge will "grow" you!

 

Linda

[3boysmom]

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you.

 

I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions.

 

Again, good luck!!!!

The big challenge is to stay strong and don't give up trying to find answers. Every child is different so don't get too confused by these posts and some of the things people are trying. Also, keep a daily log because as time goes by and you think you will remember all the things you have tried...you won't...also you may be able to see what has helped and what has not. If you are not use to being outspoken, you may need to go outside of your comfort zone to advocate for your child. (Speaking up to doctors or teachers....not ugly...I'm just saying: don't let your mama gut instinct get squashed because of intimidation) The best website for my family to refer to has been Pandasresourcenetwork.org You can find a support group in your area and it is kept upto date. When we began our search 2 years ago...when you googled PANDAS...you got websites to the black and white bear...no joke! We have come along way this past year and as bad as it is that we do not have all of the answers; at least we are not the ones that went through this 10 or even 5 years ago. We wasted a lot of time trying to find a doctor around here to help us and if they were willing to be open minded, we spent time and money trying to learn and then teach them...if you can get to a PANDAS doctor, it is worth it. (We did not get antibiotics soon enough and then we were in serious trouble as we then went into Sydenhym's Chorea along with the PANDAS. He was not testing positive for strep so the doctors would not give him antibiotics. The strep must have been hiding out somewhere because his titers were 1920 and not to mention Sydenhym's Chorea comes from untreated strep) Once the Augmentin XR 1000 twice a day began, the downword spiral stopped and the improvement began within days. (of course from my first post you can see that we are still on that road)

 

One last but most important thing that helped me...prayer. Patience, Guidance, & Unconditional Love

 

 

Be tuff mom, you will surprise yourself at how much this challenge will "grow" you!

 

Linda

One more thing I forgot...if you are married, be patient with your husband...from our support group it seems as though the men function in denial a bit longer. We have been very happily married for 22 years(waited 10 years to have kids) and this was by far the most difficult thing for us to go through as a couple. You take out your stress on the ones close to you. Try to support each other. We have come out even stronger, but it was difficult for awhile (especially when I was tired from searching on the internet all night)

Edited July 16, 2011 by 3boysmom

[momaine]

At Dr. B's they know what to do to keep the side effects minimal. Drink lots of fluids with no caffeine before you go and during the whole week after. They will give you benedryl and motrin and you may want to ask them about a prescription for Prednisone. I've been able to use it minimally with my dd, but it does help keep side effects away. I also got a prescription for a head ache medicine from them that its nice to have on hand, just in case. Sometimes I keep giving Advil for several days after to prevent problems.

[3boysmom]

At Dr. B's they know what to do to keep the side effects minimal. Drink lots of fluids with no caffeine before you go and during the whole week after. They will give you benedryl and motrin and you may want to ask them about a prescription for Prednisone. I've been able to use it minimally with my dd, but it does help keep side effects away. I also got a prescription for a head ache medicine from them that its nice to have on hand, just in case. Sometimes I keep giving Advil for several days after to prevent problems.

Thank you for your reply! So they will give the benedryl and motrin.? OK, did you bring food, snacks, games? How did your DD do? Did she get sick? Headaches? My son is very worried about throwing up...I hope that does not happen. We fly back the nest day..that scares me...the not knowing how he is going to respond scares me!!! The seeing things from "those dark days" enter our lives again, scares me!!! This was probably not a good time for me to stop taking Lexapro!

 

Thank you again,

Linda

[kimballot]

At Dr. B's they know what to do to keep the side effects minimal. Drink lots of fluids with no caffeine before you go and during the whole week after. They will give you benedryl and motrin and you may want to ask them about a prescription for Prednisone. I've been able to use it minimally with my dd, but it does help keep side effects away. I also got a prescription for a head ache medicine from them that its nice to have on hand, just in case. Sometimes I keep giving Advil for several days after to prevent problems.

 

I follow the sam protocol as Momaine - but I give ibuprofen and benadryl starting the night before. Don't know if it helps... I figure it can't hurt. Lots, lots lots of water. DS did not drink lots of water the day after IVIG this time and had a WHOPPER of a headache that night for the first time. Said he would never skip the hyper-hydration again!

[kimballot]

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you.

 

I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions.

 

Again, good luck!!!!

 

IVIG is something you have to feel very comfortable with before you do it. It is a commitment and it would be easy to look back and kick yourself if you have a rocky post-ivig period. We went to IVIG because my son's immune status was becoming affected by the PANDAS. In retrospect, I do wish we could have done it before puberty, because puberty throws its own set of behavioral issues into the mix!

[3boysmom]

Hi...please keep us udated after the ivig and best of luck....i have no advice because i have not yet decided on the ivig....i can't even get to the point of the antibiotics yet.....i totally understand the post traumatic stress....it is like i have lost the life and child and family situation that we used to have and it is heartbreaking. I am also afraid to just go the ivig route b/c we are "surviving"....(not the same and sad to think that intense ocd fears are "ok")....but, I have a feeling we'll be making the same decision as you.

 

I keep thinking about the whole saving sammy situation as well....he seemed soooo much worse and then got better and didn't even have an ivig done (i think?)......but, i often wonder if puberty or age just started kicking in.....i don't know...just all new to this.....but, hopefully the ivig will speed it all up so that it doesn't have to be a waiting game. Again, PLEASE update after....it is everyone's updates that really help in making these tough decisions.

 

Again, good luck!!!!

 

IVIG is something you have to feel very comfortable with before you do it. It is a commitment and it would be easy to look back and kick yourself if you have a rocky post-ivig period. We went to IVIG because my son's immune status was becoming affected by the PANDAS. In retrospect, I do wish we could have done it before puberty, because puberty throws its own set of behavioral issues into the mix!

Totally agree about the puberty comment. Our DS is almost 12. I think I feel more comfortable about the IVIG now than a year and half ago (when we found "PANDAS" as our issue) because I know that we have tried all of the other less extreme things and they have brought us a LONG way, but he still has a immune system that is "quacky". We are hoping this will settle down his response to strep that OTHERS have and we don't want to miss that "possible window" as her gets older. Thank you for your help. How is your son doing now? I remember your name and reading some posts that were like ours. I think we are on the path to recovery for our sons but I hate to say that out loud...and before IVIG!

 

Thank you,

Linda

[JAG10]

Hi Linda,

 

I can't say we are in the exact same boat. My older girl was sick with behaviors not typical illness most her life before we realized the etiology of the behaviors was infection based. Asymptomatic to strep, her titers were sky-high (we'll never know how high, just over the tilt measure) when they were finally tested 12/09. Within 6 months of that, she had her first ivig that rendered her 75%. This February we started multiple ivig therapy with Dr B to get all the way better and pray this works to change the memory of those t & b cells.

 

I think you know a lot of the advice regarding minimizing side effects. My dd, now 11 and entering 6th grade, gets some nausea and even some vomiting occasionally weeks away from the actual infusion, that might be a little less common. But my advice to you is for your emotional well being. The inconsistency, saw-tooth that comes with the infusions is a necessary evil that indicates you must continue with the ivig therapy. When there is no back-sliding with each infusion OR no progress that only lasts X number of weeks, when everything stays consistent and neurotypical, that is when he is done. That is when the beast is dead.

 

You need someone you can count on emotionally and that may be a cyber friend, but someone who can care, understand the emotional vomiting you may need to do periodically to get it out and not be judged for it in any way whatsoever. I have a couple of friends on this forum like that who we text, email, PM, ect. One friend I text several times a week, several times a day when things are rough; we call sometimes and have travelled great distances to see live twice. I count on her and she me for emotional support in a way only another parent on this crazy journey can understand. We both love our husbands dearly and know they are doing the best they to manage this journey as well. We have both grown to loveceach others kids dearly. A great friend who understands this madness of inconsistency attacking your heart-strings is more valuable than even the most skilled therapist and free. My opinion is it needs to be another parent of a pandas child, your kids don't need to be exactly the same either, but you have to live this life to believe it/understand it...isn't that true??

 

The insurance issue is so frustrating! We have a BCBS HMO and have been covered to where each two day infusion costs about $325 after meeting a $500 deductible. Dr B's office is so good with insurance, we paid $12K out of pocket for first one with Dr K. I pray they will persevere on your son's behalf and soon.

 

You would think after you, personally, come to terms with the $ issue, and the medical piece of the decision, that should be enough blood from the proverbial stone??? Probably not. Prepare for the emotional rollercoaster and hopefully you will be pleasantly surprised.

 

Sending prayers of health and good fortune your way.

Jill

[Bill]

"OK friends, I am here to now ask for helpful advice on what to do to prepare for IVIG for PANDAS DS11. I looked past all of that before because I was thinking that it did not pertain to us, now here we are. I see that some of my older posting friends that were hold outs like us have also gone the IVIG route. Praying all is well for you all!! IVIG will be with Dr. B on July 25 & 26. I remember something about drinking lots of water &.....????"

 

Just went through first IVIG with son who is 13. He has been diagnosed with PANDAS, Lyme & co-infections. Dr. B. diagnosed CVID last fall. We waited 8 months before proceeding.

 

As it worked out, I took my son. First time was surreal for me. I think everyone else in those two days had been multiple times before. I had to make it clear that this was our first time and I really didn't know anything. So, some lessons learned.

 

Yes - bring your own food. I was not about to leave my son this first time and only thought to bring some crackers and drinks. A couple of sandwiches would have been better. I think we were there till 2 or 3 each day.

 

As to hydration - well they hook them up to an IV saline drip. My son who pees twice a day whether he needs to or not - part of his OCD - peed no less than 5 times each day. It was all boys when I was there and after the first hour they had a conveyor belt to/from the bathroom. My son held out for two hours I think.... One can't get much more hydrated than that. I did try to keep him drinking at the hotel though of course he did not drink that much.

 

It was cold. Long pants are a good idea; I was fine in shorts with a light weight jacket on.

 

They have TVs plus portable DVD players and DVDs. I think most of the DVDs were for younger kids maybe less than 10 but would not swear to it as we brought a bunch of our own. I read books the whole time.

 

The rooms (six) are all enclaves with no doors so everyone shares the day with everyone else. I add this as my son has reacted poorly in the past when people - especially other kids - got too close. There were no issues but understand that you will not be in a 'room.'

 

My son had mild headaches toward the end of the first day so we were instructed to alternate between Advil/Tylenol. They are also on benadryl. They will give him the medicines there but it is up to you to supply them before/after. We did not do the steroids since he's being treated for lyme. We did lunch at Bertucci's end of day one so did pretty good.

 

They slowed things down the second day but he still left with a headache and started vomiting later that evening. Was not able to keep fluids much less medicine in him that evening. We drove so planned on and did spend the night anyway.

 

At 5:30 the next morning, he woke up not feeling well again. His headache was no better no worse but continued with the vomiting. Dr. B.'s office was great; Dr. B. personally called me back. By 1030 my son stopped vomiting. By early afternoon we probably could have headed home but I chose to just spend another night. By dinner time I don't think he even had a headache. We stayed in the room and took it easy though. We left the next morning at 0530 with him feeling fine - no residual headache or nausea. He did not experience any further symptoms. They will slow down his infusion rate next time as well as give the steriods. Dr. B.'s opinion is that since they are on steroids such a short time, it is not long enough to dramatically impact the immune system. He also stated that the negative side effects were simply from too fast of a rate so they would make a note in his chart and slow it further next time (mid September).

 

They also noted that his next experience could be completely without issue or the same. Each time can be different so not sure how one plans for that.

 

Hopefully I've not caused you too much worry with my son's experience but it can happen. I'm not sure there's a good way to plan for that plane trip home since some kids have side effects immediately and some a couple of days later. Perhaps it's worth asking them to go extra slow especially this time?

 

Best of luck. bill

[Buster]

Hi 3boysmom,

 

SS8 has tics but no OCD - treating with low prof dose antibiotics, DS 10 -titers keep rising (now 1920-which is where his brothers were when he woke up different) but not big issues & treating with prof antibiotics.

So DS11 is on Augmentin XR 1000mg twice a day. Did you put DS10 on anything?

 

I just want to say that DS11 is MUCH better than 2 years ago, but still not back to himself. We struggled with the choice of where do you say good is good enough and be happy with the progress that you have or as he gets older are we missing the opportunity to completely heal him. We are just worried that the IVIG will bring him back to the scary stage and he will not return & neither will we for hurting him.

 

This is a big decision and we too went for IVIG after the scary symptoms returned (in our case the eating disorder). I will tell you the first two weeks after IVIG were particularly difficult and made us wonder if we had made a horrible decision as almost all behaviors returned with intensity for those 2 weeks.

 

Dr. K often says in his talks that the predinsone is there for the parents - to help them understand that it is an autoimmune disorder. In our case, our daughter was exquisitely sensitive to her sister getting GABHS. In fact when PANDAS daughter ramped in symptom we could invariably take younger sister in and she'd be culture positive. When symptoms subsided, we could take younger daughter in and she'd be culture negative.

 

We decided to call this the "peanut allergy" equivalent. She just had to be around someone with peanuts to have a reaction. (I know, not very scientific, but what we observed).

 

DS11 began the constant questioning and hand washing, later that day kid goes to doctor...Strep!

 

Yup. We've seen exactly that.

 

We are hoping the IVIG with boost his immune system and this will not continue to happen.

 

That hasn't been our experience I'm sorry to report. What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again.

 

We don't know how others have done, but that's what we see.

 

Buster

[dut]

Buster - do yo mind me asking where you are at the moment symptom wise, % baseline etc and what you are currently doing?

 

thanks.....

[3boysmom]

Hi 3boysmom,

 

SS8 has tics but no OCD - treating with low prof dose antibiotics, DS 10 -titers keep rising (now 1920-which is where his brothers were when he woke up different) but not big issues & treating with prof antibiotics.

 

So DS11 is on Augmentin XR 1000mg twice a day. Did you put DS10 on anything?

 

 

 

 

Buster,

DS 8 - (looks “Torrett’s” like) and DS 10 (that was having very bad night terror and beginning to baby talk) are both on Amox/K with Clav 500 twice a day. (Augmentin) They have both been on this since January the ASO is dropping but oddly the Anti DNase is rising with that 10 year old. Has not affected him at all academically. He made all 100s on his report card in all subjects and made a perfect score on the State tests. He has qualified GT for all subjects but we chose to have him help us (I teach Sp. Ed.) by putting him in an inclusion Regular ED. class to implement a peer program (like a circle of friends). I think that an education is not all about "the grades". Anyway they go for more blood ASO and Anti DNase today because the lab ran the wrong Anti DNase test and Dr. B wants it before the IVIG.

 

 

 

I just want to say that DS11 is MUCH better than 2 years ago, but still not back to himself. We struggled with the choice of where do you say good is good enough and be happy with the progress that you have or as he gets older are we missing the opportunity to completely heal him. We are just worried that the IVIG will bring him back to the scary stage and he will not return & neither will we for hurting him.

 

This is a big decision and we too went for IVIG after the scary symptoms returned (in our case the eating disorder). I will tell you the first two weeks after IVIG were particularly difficult and made us wonder if we had made a horrible decision as almost all behaviors returned with intensity for those 2 weeks.

 

Dr. K often says in his talks that the predinsone is there for the parents - to help them understand that it is an autoimmune disorder. In our case, our daughter was exquisitely sensitive to her sister getting GABHS. In fact when PANDAS daughter ramped in symptom we could invariably take younger sister in and she'd be culture positive. When symptoms subsided, we could take younger daughter in and she'd be culture negative.

 

We decided to call this the "peanut allergy" equivalent. She just had to be around someone with peanuts to have a reaction. (I know, not very scientific, but what we observed).

 

 

 

Buster,

We too use the peanut allergy comparison; it does seem to help people understand a little bit better but it still feels like I am telling people that we just moved here from Planet Jupiter. DS 11 just finished his a one month prednisone taper. (Also did one a year ago.)

 

 

 

 

DS11 began the constant questioning and hand washing, later that day kid goes to doctor...Strep!

 

 

 

Yup. We've seen exactly that.

 

 

 

 

Buster,

So hard to live with. One exposure and you begin that fight back to sanity (I'm sure their is a more sensitive word but, that is how "IT" feels)

 

 

 

We are hoping the IVIG with boost his immune system and this will not continue to happen.

 

That hasn't been our experience I'm sorry to report. What we did see was a dramatic falloff of symptoms post-IVIG for approximately 6 months. Then when there was a fever, symptoms would return. Not disasterous like the last time, but say 40-50% of last time. These would subside, but there was a baseline drift. I guess the way I'd say our case went was if 100% was the worst, we got about 90% back when daughter went on azith, then when got sick again, baseline moved up to about 20% (i.e., 80% better than worst). Then sick again, baseline moved up to 40%. We did IVIG again, returned to about 10% for about 6 months. Then when sick, baseline shifted up again.

 

We don't know how others have done, but that's what we see.

 

Buster,

I'm sure you all have checked for other co infections because you have so involved with all of this research through these years. However, I was hoping that since it does not appear as though we are dealing with Lyme or anything, that the IVIG would be what finally kicked this beast. To be honest I really discouraged that this treatment didn't help your DD. Dr. B said with his level of illness, it may take 3 treatments. (July-this week, Sept. & Nov.) Insurance will not cover so....$36,000 out of pocket. We have come to terms with this, but don't want to throw money at a treatment that will not really help if the money could be better spent on other treatments...but what other treatments? It is comforting to see you’re still checking in on here...this complicated illness needs your "brain power"! Thanks for all the contributions you have made; your posts have helped me to better understand what was going on when we first were searching for answers.

 

How is your DD now? Will you be doing more IVIGs? Is she still on Antibiotics? Prayers and thank you, Linda

Edited July 18, 2011 by 3boysmom

[3boysmom]

Buster, after all this time I still can't do the multi, multi quote "thingy" correct!! I hope you can follow my answers to you! Thanks