IVIG for over one year

[JGsmom]

My ds 12.5 has PANDAS and neurologic Lyme and Bartonella. We started IVIG a year ago August for just PANDAS, before we knew about the Lyme. At that time, we thought it would be a 3 time thing. However, we have done IVIG every 8 weeks ( with some every 6 week doses during the summer) now for over a year with abx cocktail including tindamax on weekends.

He has improved greatly; he no longer has the incessant cough/sneeze tic he used to have, he has hardly any tics that I can see now. He had a movement disorder, myoclonus which saw him falling over from involuntary muscle jerks, which we see only mild occasional twitches now. Unfortunately he has lost his math abilities and has ADHD which we are trying to treat with non stimulant meds in order for him to function at school. I am happy to see the improvement, though I feel he still has a ways to go.

My question is, is anyone else or has anyone else done IVIG for this long? It is becoming financially and emotionally wearing and a burden. I have to take time out of work every 8 weeks and recently a 500 dollar facility fee was added on to the office where we go to get IVIG, each time we get IVIG. Since we travel 3 hours, there are hotel costs and food and gasoline. My son loses 3 days of school every 8 weeks and make-up is difficult. Do we need to go every 8 weeks or will he get benefit every 10 weeks?

Any opinions or insights would be appreciated.

 

Terry

[sf_mom]

We have not done hdIVIG in over 20 months with our older DS. We originally did 3 hdIVIGs with Dr. K when we thought were only dealing with PANDAS, September 2009, November 2009 and January 2010. His sudden on-set was June 2009. He has been treated for Lyme for 13 months now and is fairly close to full recovery but try not to kid myself on when we'll be rotating down and off antibiotics. Hoping for sometime in 2012.

 

I have discussed hdIVIG and ldIVIG with our LLMD many, many times... He felt that if you eradicate infection or lowered bacterial load enough the hyper immune response would stop (auto-immunity) and the immune system would recover to deal with remaining bacteria in the body. Our younger twins were never diagnosed with PANDAS and only Lyme at 3 1/2 years of age. Our Dr. felt our younger twins immune deficiencies would resolve along with infections. He even wanted our children to enter preschool and be exposed to a lot of little stuff to regain their immunity so they wouldn't crumble when the "big one" came along. I was very scared and suspended any judgement and decided to follow his advice. I have always kept the possibility of hdIVIG on the table for them if needed. Thankfully, things are moving in the right direction that it doesn't appear any of our children will require IVIG treatments. We have tracked their CBCs, IgG subclasses, Strep Pneumo Titers and a bunch of other stuff since 2 1/2 years of age when we felt they might be PANDAS too. Slowly, slowly things are improving..... the WBC, RBC, IgG subclasses are now mostly within normal range and anything that falls out of normal range continues to trend in the right direction.

 

Anyway..... my whole point in sighting our story is to give you confidence it can be done without hdIVIG treatments. Plus at some point, I would think you'd want to train his body to learn to fight the remaining infection on its own. Build up his own immunity similar to our Dr. encouraging us. As you know, those donor antibodies potentially suppress his own abilities. I have often wondered when the end point would be for some of these children doing both hdIVIG with good response and Lyme treatment. I imagine it might be rocky for a bit when his own body takes over but I could be totally wrong on that issue. Please keep us posted on your decision. I also think you'd have a baseline of labs from prior to IVIG and that you might be able to similarly track progress once you are a good six months out from the last treatment.

 

-Wendy

Edited September 10, 2011 by SF Mom

[JGsmom]

We have not done hdIVIG in over 20 months with our older DS. We originally did 3 hdIVIGs with Dr. K when we thought were only dealing with PANDAS, September 2009, November 2009 and January 2010. His sudden on-set was June 2009. He has been treated for Lyme for 13 months now and is fairly close to full recovery but try not to kid myself on when we'll be rotating down and off antibiotics. Hoping for sometime in 2012.

 

I have discussed hdIVIG and ldIVIG with our LLMD many, many times... He felt that if you eradicate infection or lowered bacterial load enough the hyper immune response would stop (auto-immunity) and the immune system would recover to deal with remaining bacteria in the body. Our younger twins were never diagnosed with PANDAS and only Lyme at 3 1/2 years of age. Our Dr. felt our younger twins immune deficiencies would resolve along with infections. He even wanted our children to enter preschool and be exposed to a lot of little stuff to regain their immunity so they wouldn't crumble when the "big one" came along. I was very scared and suspended any judgement and decided to follow his advice. I have always kept the possibility of hdIVIG on the table for them if needed. Thankfully, things are moving in the right direction that it doesn't appear any of our children will require IVIG treatments. We have tracked their CBCs, IgG subclasses, Strep Pneumo Titers and a bunch of other stuff since 2 1/2 years of age when we felt they might be PANDAS too. Slowly, slowly things are improving..... the WBC, RBC, IgG subclasses are now mostly within normal range and anything that falls out of normal range continues to trend in the right direction.

 

Anyway..... my whole point in sighting our story is to give you confidence it can be done without hdIVIG treatments. Plus at some point, I would think you'd want to train his body to learn to fight the remaining infection on its own. Build up his own immunity similar to our Dr. encouraging us. As you know, those donor antibodies potentially suppress his own abilities. I have often wondered when the end point would be for some of these children doing both hdIVIG with good response and Lyme treatment. I imagine it might be rocky for a bit when his own body takes over but I could be totally wrong on that issue. Please keep us posted on your decision. I also think you'd have a baseline of labs from prior to IVIG and that you might be able to similarly track progress once you are a good six months out from the last treatment.

 

-Wendy

 

 

Thanks, Wendy. I am going to discuss all this with Dr. Jones and Dr. Bouboulis when we go to CT next week for IVIG. He has not done any S. pneumoniae titers since a year ago. I would be curious to see what is going on with that as you said. Actually, I did not think that the IVIG suppressed a normal immune response, I thought it helped decrease the hyper or auto immune response by letting the body know it had enough antibodies and calming down the auto antibodies. In any case, he has been slowly improving and I am sooo tired of packing up every 8 weeks and sending his twin to his dad's and doing the drive. Recently his father has given me a hard time about the cost of all the treatment. It's hard to let go of the IVIG when you see all the improvement. I do see him improve even more with the IVIG now that he is on the right abx mix. Thanks for the support. Glad your DS is improving, I know you have your hands full.

 

Terry

[sf_mom]

Terry,

 

Each Dr. has a little different take on the hdIVIG and why its effective. In reality... nobody knows truly what is is doing but our PANDAS Dr. did state it suppresses one's immune response. Hence, stopping the auto-antibodies from reproducing (also stopping one's own good antibodies from producing). I know I'm not going to get this right but it was suggested it halts the bone marrow from developing antibodies. Help from anyone that might be able to explain it better. Its been a long time since I've talked to our PANDAS Dr.

 

As for tracking strep pneumo titers. We did that with our older son pre hdIVIG and post hdIVIG at one month intervals. What we found was they were rapidly depleting each month back to back to prior deficient status. I believe a better measure is what is happening six months out from hdIVIG when all the antibodies have left the system and a continued measure of those every six months thereafter. Again, they are SLOWLY turning around for my younger son. I have not tested my older son or younger daughter recently. My girlfriend who also initially thought PANDAS and then found Lyme and had the strep pneumo titers measurements over time prior to figure out what was going on. You could see his immunity initially and over the 1 1/2 years time you could see them being depleted. This was all prior to antibiotics and hdIVIG. What was causing him to go from having antibodies to have essentially none is a mystery. BUT, I do believe these bench marks might be helpful for long term success with treatment.

 

Again, I'll be interested in the strategic plan between your Dr's. How he does if you stop. You are potentially moving into uncharted territory that might help others make certain decisions in the future that are doing both types of treatment.

 

-Wendy

[sptcmom]

IVIG every eight weeks is like living on borrowed immunity. I would love to hear about any child's immune system truly truly benefitting from it. I am yet to hear a child holding their own once regular IVIG is stopped. The epiphany moment is extremely rare. Its next to impossible to understand the logic of foreign antibodies being able to entrain your own to"behave". Some parents do talk about the epiphany moment but it can't be explained logically. Maybe they had a mild case to begin with.IVIG being used for life threatening autoimmune diseases like Guillian Barre syndrome is widely used. At that level of severity where the actual muscles are paralyzed, nerves can't process signals etc and the person will die once the breathing muscles are paralyzed, IVIG is a huge factor. Repeated IVIG for such things I have heard of for many many years. Im guessing the same principle is being applied to PANDAS since its deemed autoimmune.

 

The question is how directly single-cause autoimmune is it? Absolutely pure, strep only PANDAS is also unusual. Its rare even. Many parents consider it to be pure PANDAS only because they haven't found something else, havent looked for something else, the child is relatively stable so they're not looking anymore or worse is when the additional infections are overlooked due to denial, lack of understanding, non cognizant docs- myriad of reasons.

Either ways, IVIG is a band aid. If it wasn't it would work better and work faster. Its a huge procedure, its an invasive procedure. Kids with Guliian Barre or cancer related issues that get IVIG DONOT herx from it, there is NO flipping back the pages etc- just healing, thats it. They start recovering because IVIG is proven to work for these serious conditions.

 

In my experience inflammation is the trigger for PANDAS in our kids. IVIG is not antiinflammatory I don't believe. It is borrowed immunity, plain and simple. Once the foreign antibodies drop, its over.

Inflammation is a symptom and it brings about several other symptoms like OCD, rage etc. Treating symptoms you get suppression not a cure.Need to find out the cause of the inflammation and then can start healing for real. OCD, PANDAS etc are all symptoms of brain inflammation. Why is the brain inflammed? For most kids its a variety of factors in play- psychological like stress, trauma, biochemical like heavy metal toxicity, xenobiotics, biotoxins, glutamate, physiological like thick blood etc. Then there are those with underlying multiple chronic infections. ALL these factors when addressed for a few years will really help the immune system recover.

 

The KEY is knowing what to treat first and there after so on. The steps backwards seen by so many is due to inadequate nutritional and detox support and also due to incorrect order of treatment. The layers of the onion have a different order of priority for each child. They all have to be peeled gently, accurately, in the right order and then and only then can we get a real cure.

Just sharing my experiences.

Edited September 11, 2011 by sptcmom

[JGsmom]

sptcmom,

 

I appreciate your input and you have given me some things to think about, but I am not quite clear on what you are trying to convey.

 

I personally do not think that there is a true 'cure' for any auto-immune disease to my knowledge. I agree that PANDAS does not live alone, witness the huge numbers of children with PANDAS/Lyme and PANDAS/ ASD and PANDAS/Lyme/ASD. My understanding is that borrelia also suppresses the immune system. Borrelia potentially is not eradicated from the body, though WB may be normal and pt. is asymptomatic. Animal studies show attenuated spirochete in the brain, knee joints and myocardium on post-mortem, though asymptomatic and blood work normal.

 

Many other auto-immune diseases are helped, not cured with IVIG, ie--rheumatoid arthritis (RA), lupus, even MS. It does not cure these conditions but helps pts. manage symptoms and live a somewhat 'normal' life. My mom suffered w/ RA for 20 years becoming a twisted, deformed mass of pain before she died. I think she would have liked the 'band-aid' of IVIG, it would have improved the quality of her life. She lived on methotrexate, a chemotherapy drug, and prednisone to manage her symptoms. IVIG, in combination with the right abx, has improved the quality of my son's life and we are nowhere near any type of cure.

 

IVIG in and of itself is not anti-inflammatory, but the inflammation in the brains of our PANDAS kids is theoretically from auto antibodies attacking the brain stem. This is our normal immune system gone haywire. Theoretically, IVIG is used to calm down that haywire anbormality, and as such, decrease inflammation. No one knows how long it will last.

 

I do not know what an epiphany moment is or how it applies to Lyme, but I am happy for kids whose immune system can recover for them to fight the Lyme. My understanding is that Bb suppresses the immune system so that it can not fight the spirochete and IVIG helps it to stay strong and fight the bacteria. If IVIG's 'borrowed immunity' helps my child's immune system fight off Bb and bartonella, then I'm all for it. We have not found it to be so horribly invasive. A true Jarish-herxheimer reaction only occurs with syphillis and Lyme, to call the healing reaction to IVIG for PANDAS a herx is a misnomer. How do we know how the brain heals? To equate symptoms of brain healing with other organ healing symptoms is too simplistic, in my opinion. I feel that many adverse 'peeling back' reactions are due to undiagnosed Lyme and/ or co-infections. My son only had bad reactions to IVIG when his bartonella was undiagnosed and he did not have an abx cocktail for his Lyme. He was only on one abx as we thought he was asymptomatic for lyme. Well, I am grateful for the IVIG because it brought to light the underlying infections. Many integrative docs are using LDN, or low dose naltrexone, as an immune booster, using the body's opiate receptors to boost endorphins and increase immunity. It is used for other auto-immune disorders such as MS and IBD. It also is not a cure, but the idea is to help healing, manage symptoms and allow for a more normal life.

 

I have not yet explored the things you mention, glutamate, etc., but I am open to learning about them and picking and choosing what might work for our family and for DS. I agree that stress, nutrition, excercise play a big role in healing and managing symptoms. I believe that genetics and environment play a big role in illness. My personal feeling is there may not be a cure for my son's PANDAS and lyme. But I will take the management of those symptoms and anything that allows him to lead a full life.

 

There are not many docs who can agree on what is proper treatment and what needs to be addressed first. I think we are all learning and there is much to explore and try. I will be going to the ILADS conference in October to try to learn more. There is a presentation on PANDAS and I will be happy to report back what I may find out. You said the key is knowing what to treat first and there after and peeling back the layers. I honestly don't think anyone has that key yet. I wish they did.

 

Terry

[PhillyPA]

Geez-I have got to get my son up and ready for school. I have to be brief...

 

Spctmom, I do so want this to come across as respectful...

 

Your information is grossly incorrect. You make some pretty powerful statements that come across as fact when surely they must be your theories. I am all for thinking out loud and offering theories. We are all moms just trying to figure things out - but make it clear that these are your "guesses". I believe that practically everything that you have stated in your post is wrong.

 

PANDAS that is triggered by strep only is quite common. In my own circle of friends and family I know 8 people who have had strep and then got pandas. That seems pretty common to me. Rare means you can't find anyone else with a similar problem. None of these people are on this forum. They don't have to be. They are all better and have things under control. They also may not even be "forum" people. What percentage of people with medical problems or any problem for that matter do you think seek out forums on the internet and post?

 

Also, have you ever talked to Diana P.? Her son has been "cured" of pandas with two ivigs. I don't have time to get into the whole ivig thing. My child's neurologist, who is not a pandas specialist but an auto-immune encephalitis specialist, said that some people with auto-immune disorders will have to have ivig for the rest of their lives.

 

Lastly, my best friends daughter had cancer. Leukemia. She threw-up after ivig.

[dcmom]

I agree with PhilyPA in the sense that-

 

please parents- if you are stating something that is your OPINION, or a doctor's OPINION- please say so. Please do not type your or your doctor's hypothesis on here as fact- it is dangerous, and a dis service to the parents on the forum.

 

S

[JuliaFaith]

A few months back, I spoke with a CRT doctor who discounted everything that I was currently doing to help heal my son. It shook me to the core, because it made me doubt the path I had chosen for my son which I so firmly believed in. After further evaluation, I decided that the path we were on was the right one and healing is happening.

 

I appreciate reading about anything and everything so that I can make as informed decision about my child's health as possible, no matter if it makes me doubt what path we are on temporarily, because it is about my son's healing. I can pick and choose any information that is presented and make my own decisions about what step or dr. or anything to take next.

 

In my opinion, the more information presented, the better.

 

Thanks for reading.

Edited September 12, 2011 by JuliaFaith

[P_Mom]

A few months back, I spoke with a CRT doctor who discounted everything that I was currently doing to help heal my son. It shook me to the core, because it made me doubt the path I had chosen for my son which I so firmly believed in. After further evaluation, I decided that the path we were on was the right one and healing is happening.

 

I appreciate reading about anything and everything so that I can make as informed decision about my child's health as possible, no matter if it makes me doubt what path we are on temporarily, because it is about my son's healing. I can pick and choose any information that is presented and make my own decisions about what step or dr. or anything to take next.

 

In my opinion, the more information presented, the better.

 

Thanks for reading.

 

 

Juliafaith.....the problem with that is when the parents are so new and fresh to all of this and they do not have the strength to pick and choose. When someone posts with such conviction that their information is fact...others tend to get swayed by it and head that direction. No, not everyone, but many. And many do not doubt temporarily...they change course...over and over. Yes, brainstorming and sharing opinions is great....it is what we need....but so many here state things as fact, even offering up treatments for others children. It is dangerous. So, I have to agree with Philly and DCMom.

 

Spctmom...

I also know of over a dozen (probably more) "pure" PANDAS children......and yes, most of them are not on this forum, and, some of them have left because of such statements made that they are in denial, lacking knowledge, etc. if they believe thier children are "pure" PANDAS. Well, my children are "pure" PANDAS. Yes, I have looked, I am not in denial and we have seen numerous knowledgeable doctors. Both went from "normal" to "not" after the same strep infection in 2007. They were both treated with 2 courses of abs to eradicate their initial strep infection. Since then, they have been on low dose porphylactic abs. There were one or two times since then they had to take a full course of Biaxin and a course of Zith (in 4 years)....once for Pertussis and another for a suspicious cough. Neither "herxed" with the addition of a full dose antibiotic. Neither ever worsened with abs...only improvement. They are not antibiotic dependent...they can go off without any return of symptoms. They never did long term full dose abs. They have both been strep free for over 4 years and neither has had another horrible episode. They have both just gotten better and better over time. Now, 4 years later, my older son has been in remission for about a year now and announced to me this past summer (and this kid would NEVER talk about PANDAS) ..."Hey Mom...it's gone." Me.."what's gone?" Him..."The PANDAS stuff." Who knows...maybe he feels it...maybe he knows it. I don't know but I am starting to get really hopeful for him with his length of remission and the fact that he now has had multiple illnesses with no symptoms of PANDAS. (has a cold and cough currently....nothing PANDAS wise) Would he react to strep? Most likely, he is only 11 and I am not taking my chances of pulling his antibiotic until he is through puberty.....he is only on 250 mg Aug. daily. We all know that low dose Aug. would not touch Lyme and CO......he does not have any of that. My younger son is also doing extremely well....he was a much more severe presentation, but, he responded to antibiotics and two steriod bursts which stopped symptoms in their tracks. Thank God for steroids if you have a PANDAS child. Nobody would notice a thing in either of my boys now.....they are thriving. Neither ever required IVIG...but, if it ever came down to it...I would take the band-aid in a second to help bring my child out of an episode from ####...and I would do it again and again if I had to. Pure 'PANDAS' does indeed exist and in more frequency that you may think....how would you feel if I posted that PANDAS and Lyme/coinfections appearing in the same child was unusual, actually rare, and that the parents here that believe their children have PANDAS AND Lyme, coinfections, (MCIDS) etc. are misinformed, in denial, and go to incompetent docs??

Edited September 12, 2011 by P.Mom

[philamom]

back to the question at hand - I would consult with Dr. B whether 10 weeks (instead of 8) would make much of a difference.

 

Rgearding IVIG- my dd's first one was in Chicago in June 2009. She went on to have six more with Dr. B since April 2010. I will pm you to share our experiences.

 

Good luck this week!

[sptcmom]

Absolutely didnot mean to start an argument or hurt any feelings. We're going going thru enough to last us a couple lifetimes so not my intent at all.

Just sharing my experiences, what I learned personally and professionally.I follow these learnings/theories/beliefs/whatyoumaycallthems all thru my personal and now professional journey with all this. I stand by what I said as my interpretation and understanding of what I've learned. No I don't wish to change anything. Different people with different backgrounds will understand things in their own way. I am sharing what I've learned and understood in my head.I do say that in my original post. Its my experience only.

This is one of the most intelligent bunch of parents I've ever 'met" and you can take from my post what you like or chuck it as ramblings, its up to you. To each his own by all means and with all due respect.

 

Pure PANDAS does exist. I know. And I know more than a dozen but its all an assumption. To what extent is it "pure" no one knows. Some children get well with a couple IVIGs, some even have the epiphany moment but most don't. Its still a symptom only. Its a symptom of an immune system disorder. IVIG debate has gone on forver too. Each doc has his own interpretation of how it works. I have mine. I don't have to justify that to anyone I don't think.Its my opinion and I have had excellent results with my theories by God's grace.

There is no right or wrong. All parents make decisions that work best for their child and family.

Its just Eastern v/s Western medicine . Suffer thru the herx and treat the root cause towards a cure v/s treat the symptoms for a life time and try to stay functional thru the journey. Each one makes their own choices. There really is no right or wrong, just what works for your situation.

Edited September 12, 2011 by sptcmom

[melanie]

didnt have a thorough read but did want to comment.Danny gets ivig every 21 days and has for 2 years (almost) Hes a different kid .Still has issues but night and day.Not treated by dr j or dr k.Has immune defiencys so its covered by insurance and the nurse comes here my home for infussions if anyone has questions pm me

[dcmom]

I also appreciate all information, and everyone's experiences. But- I worry for the new parents, and the parents in crisis- all I ask is that if we post, we should relate stories as our experience, or doctors opinions as just that, and NOT relate our personal opinions, hypothesis, experiences, etc as FACT-

 

SPCT mom- I know you mean well, and I am not looking for an argument- but saying that you are on the path to a cure vs those parents using traditional medicine are on a band aid path is condescending at best, and at worst a MAJOR dis-service to those on this board looking for help. I am very interested in the experience you have had with patients in the last six months, the training course you went through,eand in the journey of lyme and possible pandas you have had with your son- but, I would rather see these these things written about as your opinion, and the opinion of the doc/ organization that you are working with.

 

I am thrilled your son is thriving with alternative treatment. My girls continue to thrive with "traditional" pandas treatment. Occasional steroid treatment has literally saved them, which is why I get extremely concerned when parents are steered away from this course of treatment. They even took the summer off of all meds (antibiotics and supplements) with no ill effects.

[sptcmom]

I also appreciate all information, and everyone's experiences. But- I worry for the new parents, and the parents in crisis- all I ask is that if we post, we should relate stories as our experience, or doctors opinions as just that, and NOT relate our personal opinions, hypothesis, experiences, etc as FACT-

 

SPCT mom- I know you mean well, and I am not looking for an argument- but saying that you are on the path to a cure vs those parents using traditional medicine are on a band aid path is condescending at best, and at worst a MAJOR dis-service to those on this board looking for help. I am very interested in the experience you have had with patients in the last six months, the training course you went through,eand in the journey of lyme and possible pandas you have had with your son- but, I would rather see these these things written about as your opinion, and the opinion of the doc/ organization that you are working with.

 

I am thrilled your son is thriving with alternative treatment. My girls continue to thrive with "traditional" pandas treatment. Occasional steroid treatment has literally saved them, which is why I get extremely concerned when parents are steered away from this course of treatment. They even took the summer off of all meds (antibiotics and supplements) with no ill effects.

DCmom please have a reread of what Ive written. I absolutely resent your accusatory tone. We all have enough stress without being at each others throats. Please don't read my posts if it upsets you- you have a choice. You stand by your opinion and I stand by mine. We are both moms trying to help our kids. I think you know very well I have pursued conventional, abx, IVIG, steroids you name it for my son and WILL do so again if I need too.I continue to pursue a combined approach. We ARE and always HAVE been on abx plus detox as are tens of mothers on the forums.

My son is NOT, I repeat, NOT healed at all. We are dealing with lyme, Bartonella, Babesia, Mycoplasma,Mold, MARCONS, PANDAS and viruses in EVERYBODY in my family including me.

 

We have seen some 100% days but its a long road.We had a major exposure to strep in August with my son UNABLE to walk,excrutiating leg pain, unable to even move, turn in bed, sit on the floor or go up and down stairs. Turns out it wasn't PANDAS but the exposure to strep had provoked Babesia - both species and together they were attacking his bone marrow. The MRI of his pelvis and thighs showed the bone marrow BLACK with inflammation.We used high dose minocycline, hyperbaric oxygen and detox. He is still limping and can't do stairs but we got rid of the wheelchair and he can now go to school. Mepron helped tremendously as well.

 

I remember you gave me excellent advice on loose teeth and the ramp up to expect, how to deal with etc last year when I was new to this and I appreciated your opinion. I respect you as a mom but please don't disrespect another mom and her experiences.

I know of several children that have become horribly worse on steroids and IVIG. I know of one child being treated by the famous PANDAS doc who after 5 IVIGs and steroids is now in a NY PSYCH ward as an inpatient for the last two months. This child also tried PEX and everything to no avail. Now mom has approached a NYC famous homeopath for help and the child is healing, calming down and hopefully can come home non homicidal and suicidal. he is only 14.....

Thats just one story. I know of several others.

On the flip side, I know of several stories that IVIG and sterods and PEX have been life savers but need to be continued.

My two nephews have Thalassemia Major and they need blood transfusions EVERY two weeks now that they're older and multiple IVIG for YEARS now. I am their godmother and its hard for me to have seen that last 12 years (I go with my sister once a month). I know its just a needle prick, just an IV etc BUT the kids go thru a lot of emotional trauma.The two little boys are a psychological mess emotionally, it breaks my heart. It doesn't happen the first few times, the kids kinda deal but when its year after year of IVIG, transfusions, needles hospitals, it does take its toll on the little guys. My poor little nephews don't have a choice due to their illness.

 

My son has tremendous emotional trauma with IVIG. Dr K was wonderful with him as were the nurses, God bless them but if I can avoid it I won't go back that route.So yes, I am looking for a cure. I will search the ends of this earth to find it. I have merely highlighted my experiences and learning. Numerous wonderful moms on this forums have been my guiding angels this last year and I want to post what I've learned. Maybe it will strike a chord with one family out of so many posting here.

Maybe people want to hear both sides of the story. I have been thru it all Eileen. Still going thru it all. NO lasting remission so far. You're lucky to have remission after PEX. God Bless your girls and I hope they continue to thrive.