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IVIG fears from the child's perspective


dabel

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I am pretty new to this forum. My son was diagnosed with PANDAS a couple of weeks ago by Dr.K.

 

Just a little background on my child. He became aggressive, banged his head, poor moods, crying etc at age 2. We had issues on and off but nothing that we could not justify - oh, it's the terrible twos etc. At age five he had a strep infection in his rectum. He was put on abx for a week and it cleared up. After one week it was back so another round of abx. When we went for his recheck they suggested he get his 5 yr vaccinations. Shortly after this he crashed! Extreme aggression, depression, paranoia, bed wetting, sleep problems, sore legs,horrible headaches, pale, dark circles, etc. He never developed tics. At this point we started to hit every kind of doc we could think of to help our child. He had CT's,MRI's, EEG's you name it. None of the doctors could tell us what was wrong. Finally one said all he could do was to offer us antipsychotic meds which I declined. This episode lasted for a little over a year. We thought we had nailed it - we had started him on an intensive nutrient therapy, found out he had some food allergies, pyroluria, yeast, etc.

 

Things went okay for awhile. He started school at 6 because he was too sick at 5. The first couple of years of school went okay. We had issues here and there but nothing like we had before (we would have to restrain him for hours daily - some times several times a day etc). He missed a fair amount of school but for the most part was functioning. In second grade, age 8, he got sick. Shortly after he started slipping again. He ended up inpatient due to being suicidal. He missed from October to April of second grade. We ended up putting him on Prozac which did seem to help for awhile.

 

The next couple of school years went okay. We had bumps here and there but again nothing like we have had. Other parents might have thought it was an issue but for us it was nothing compared to the behavior in the past.

 

The summer before fifth grade (2008) he got a staph infection. The infection got pretty bad because my mother had him and thought it was just poison ivy. He was put on abx. By this time I had figured out that every time he got sick - especially if he was to the point of needing abx - we would develop a problem. Sure enough a short time after this infection it hit. He ended up hospitalized because he was homicidal at eleven years old. The psychiatrist had never seen a child like mine. Thought it might be the Prozac so he took him off it and put him on Abilify (which did nothing). One of the psychologists mention PANDAS to the doc. He checked the ASO which was 400. I was told that it was elevated but not that high. He felt it warranted a recheck if these problems would arise again. This is the first I had heard of PANDAS. I read about it and thought my kid didn't have it because he didn't wash his hands 100 x's a day or have tics. How wrong I was! He was medically released from 5th grade and we have not been okay since. Sixth grade started and I hoped that he would be able to function but I was wrong. More homicidal stuff came out and I took him in to have his titers checked. They were both high (ASO - 400, Dnase 1590) and we ended up down at Dr.K's office.

 

Since he is so old (12 yrs), has had this a long time, and hit puberty early (a couple of years ago) Dr.K suggested we do IVIG ASAP. We are scheduled for December 3rd and 4th. We did a steroid burst and had good results. The affects of that are now gone and his bad thoughts are back.

 

Sorry for the big long story but I wanted you to have the background here. My son is a very bright child. He has ceilinged out on most of the tests that he has been given so we don't really even have a true IQ on him (not that I care), he is a gifted writter and artist, and generally excels in all areas of school etc. I tell you this not to brag but to tell you what type of kid I'm dealing with. He is truly like an 80 year old man in a 12 year old body - WAY beyond his years. So, given this intelligence etc wouldn't you think that he would want to get treated and get better? I wrote all this to get to this one point. The kid does not want to cooperate and take the abx and he does not want to get the IVIG treatment! He is afraid that it will change who he is. This is something that I had never even thought of!! I assumed he would be all excited! When his "bad" thoughts were gone due to the steroids he said "Mom, the problem is now I just feel nothing." He has lived with these intrusive thoughts for so long that he does not know what to think when they are not there! How sad. He did feel happier and bouncier and I am trying to convince him that this will not change him but it will allow him to be who he is supposed to be. He thinks if we put "other" peoples blood products in him he will change and will lose the things that make him unique. He thinks he will no longer be able to write the way he does etc. Have any of you with older children who understand the process had this problem? If so do you have any suggestions on how to convince this kid that he will not lose the gifts that God gave him - he will just be able to fully enjoy them.

 

Thanks for your input!

 

DeAnn

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He thinks he will no longer be able to write the way he does etc. Have any of you with older children who understand the process had this problem? If so do you have any suggestions on how to convince this kid that he will not lose the gifts that God gave him - he will just be able to fully enjoy them.

 

Wow, tough question. Yes, our daughter also didn't want to change. However, she is much younger. She didn't see the compulsive or obsessive thoughts as being foreign. In fact, for CBT to really work, they sort of needed her to name it. She couldn't externalize it but said that it was just her. She didn't feel it was outside. It wasn't until we got her on azith and her eyes cleared and she came back from the edge of starvation that we could talk about how she acted the 3months before. Then she saw it as really odd. So in retrospect she could see it, but not while she was in it.

 

Your son is clearly much older and much more aware. Have you been to a psychiatrist? They have very good ways of helping to clarify this space. I say this because of all the time we actually did do with our psychiatrist -- despite the fact that until we got our daughter to 80% better we couldn't have a conversation about her obsessions.

 

Buster

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I wonder if it would help for him to get in touch with other kids who have had IVIG? Has he gone to websites that explain IVIG and the immune system? There are some sites for kids that give easy to understand (even I can understand them!) explanations of how the immune system works. Maybe talk about how he feels when he's raging and aggressive (I'm pretty sure these are things he doesn't like happening to him) and explain that the strep antibodies are doing that to his brain, and they are causing the depression and enuresis, and all those other difficulties, but they are NOT causing him to be a gifted writer, or a good artist, or very intelligent- those are things that are really him. If he can realize (different than knowing, I think) that other peoples' antibodies can help him shed the things that are NOT really him, w/o losing the things that are, maybe that would help?

 

I can so relate to the rages/restraining/headbanging...the terror of it all as a parent. My daughter started young w/ this also...similar presentation, except she lost speech as well. She's been attending special needs schools all her life (and actually been asked to leave 2 of those due to behavior). She's 15 now and we are finally at the point where we think, just maybe we have some doctors who will treat with PEX and/or IVIG.

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wow - the devil that you know vs. the devil that you don't - such a struggle, my heart breaks for him.

 

have you checked out anxietybc.com? my son is quite a bit younger but i have found the info there very good - more helpful than most of the professionals we have seen. they have also been very responsive when i asked specific questions. they have a parenting section - i've worked with the section for younger kids but i believe they have info for working with older kids too.

 

good luck!

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My 9 year old daughter says, "It only hurts a minute when they put the IV in and then it is fine. Tell him that it only changed my personality a little bit, but that was a GOOD thing. I can sit and do art and write now without having to start a fight instead. I can concentrate. I feel better in my body and my brain.... clearer. I am still me, but happier and better."

 

She knows that life for her was headed for an institution. I say that only half in jest. Our story is VERY much like yours- in fact, yours is the closest to ours that I have seen on the board so far!!! We have been through the rages too, and those only went away with IVIG (and only in the past 2 weeks, so expect some things to stick around or even WORSEN for a little while after IVIG.)

 

Pixie did not have fears going in though, she wanted to get rid of the anxiety and was begging us to do something, anything. She has said several times, of her own volition, that she is happy she did IVIG and would do it again because she feels better and is able to act better. She is able to attend school, to sit and do art, to be creative and make more choices instead of locking up on OCD details, and has more clarity for things like word-play and making jokes, playing games, etc.

 

 

Have you mentioned this to Dr K? (He is the one who did our IVIG as well) He may have some insight too on how to best explain how it will be helpful and not strip him of "who he is."

 

Manda

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I feel for you and totally undersrand and relate.My son is 15 and has been through 2 years of ###### We did the IV and it has helped were waiting to do more .He kept saying this is going to get rid of the ourettes over and over he did have some breathing anxiety like long staggered breaths the mds said it was anxiety like he couldnt catch his breath. It went away when he left the hospital. The drs gave him benadryl so maybe you can speak to them about something to calm him.If he wants to talk to my son let me know he will try to make him feel better.Good luck!

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DeAnn, I am sorry for the ordeal you have been through with your son. Maybe since his is a very bright kid, it will help if you explain the science of IVIG in a way that shows how it will help get rid of the bad antibodies that are causing his intrusive thoughts and making it difficult for him to fully use his gifts. My son is 13 and there are many similarities to your story. He was a very bright and high achieving kid, a gifted writer and artist who had won awards and all that, until he came down with a strep at age 10 and had "curse words" and other intrusive thoughts stuck in his head. He was responding well to therapy but things became severely worse after he had vaccines seven months after the initial strep. After that the OCD got much worse and there were other symptoms including spacing out episodes, hyperactivity, sleep problems, pale, dark circles, pacing, inability to do homework, loss of all interests, impulsive and irrational behavior etc.. I could go on and on. He also missed almost his entire year of sixth grade due to multiple hospitalizations, and thankfully he is now much more stable and we have seen many great improvements, but I get how hard it is to watch a very bright high functioning kid go downhill in such a quick and dramatic way. We have done diet changes, the DAN protocol, neurofeedback, two rounds of PEX (second one just a month ago) and we are considering monthly IVIG. He is happy to have many of his gifts back but still struggles with homework and reading. He is so sick of doctors and treatments, but at the same time gets that it is helping him. It is not easy. It may help if you explain the benefit of the treatments in some kind of visual and concrete way so he can better understand how it will help. This is what I have done for my son whenever he does resist a new treatment and this seems help him get it.

 

Ellen

 

 

I am pretty new to this forum. My son was diagnosed with PANDAS a couple of weeks ago by Dr.K.

 

Just a little background on my child. He became aggressive, banged his head, poor moods, crying etc at age 2. We had issues on and off but nothing that we could not justify - oh, it's the terrible twos etc. At age five he had a strep infection in his rectum. He was put on abx for a week and it cleared up. After one week it was back so another round of abx. When we went for his recheck they suggested he get his 5 yr vaccinations. Shortly after this he crashed! Extreme aggression, depression, paranoia, bed wetting, sleep problems, sore legs,horrible headaches, pale, dark circles, etc. He never developed tics. At this point we started to hit every kind of doc we could think of to help our child. He had CT's,MRI's, EEG's you name it. None of the doctors could tell us what was wrong. Finally one said all he could do was to offer us antipsychotic meds which I declined. This episode lasted for a little over a year. We thought we had nailed it - we had started him on an intensive nutrient therapy, found out he had some food allergies, pyroluria, yeast, etc.

 

Things went okay for awhile. He started school at 6 because he was too sick at 5. The first couple of years of school went okay. We had issues here and there but nothing like we had before (we would have to restrain him for hours daily - some times several times a day etc). He missed a fair amount of school but for the most part was functioning. In second grade, age 8, he got sick. Shortly after he started slipping again. He ended up inpatient due to being suicidal. He missed from October to April of second grade. We ended up putting him on Prozac which did seem to help for awhile.

 

The next couple of school years went okay. We had bumps here and there but again nothing like we have had. Other parents might have thought it was an issue but for us it was nothing compared to the behavior in the past.

 

The summer before fifth grade (2008) he got a staph infection. The infection got pretty bad because my mother had him and thought it was just poison ivy. He was put on abx. By this time I had figured out that every time he got sick - especially if he was to the point of needing abx - we would develop a problem. Sure enough a short time after this infection it hit. He ended up hospitalized because he was homicidal at eleven years old. The psychiatrist had never seen a child like mine. Thought it might be the Prozac so he took him off it and put him on Abilify (which did nothing). One of the psychologists mention PANDAS to the doc. He checked the ASO which was 400. I was told that it was elevated but not that high. He felt it warranted a recheck if these problems would arise again. This is the first I had heard of PANDAS. I read about it and thought my kid didn't have it because he didn't wash his hands 100 x's a day or have tics. How wrong I was! He was medically released from 5th grade and we have not been okay since. Sixth grade started and I hoped that he would be able to function but I was wrong. More homicidal stuff came out and I took him in to have his titers checked. They were both high (ASO - 400, Dnase 1590) and we ended up down at Dr.K's office.

 

Since he is so old (12 yrs), has had this a long time, and hit puberty early (a couple of years ago) Dr.K suggested we do IVIG ASAP. We are scheduled for December 3rd and 4th. We did a steroid burst and had good results. The affects of that are now gone and his bad thoughts are back.

 

Sorry for the big long story but I wanted you to have the background here. My son is a very bright child. He has ceilinged out on most of the tests that he has been given so we don't really even have a true IQ on him (not that I care), he is a gifted writter and artist, and generally excels in all areas of school etc. I tell you this not to brag but to tell you what type of kid I'm dealing with. He is truly like an 80 year old man in a 12 year old body - WAY beyond his years. So, given this intelligence etc wouldn't you think that he would want to get treated and get better? I wrote all this to get to this one point. The kid does not want to cooperate and take the abx and he does not want to get the IVIG treatment! He is afraid that it will change who he is. This is something that I had never even thought of!! I assumed he would be all excited! When his "bad" thoughts were gone due to the steroids he said "Mom, the problem is now I just feel nothing." He has lived with these intrusive thoughts for so long that he does not know what to think when they are not there! How sad. He did feel happier and bouncier and I am trying to convince him that this will not change him but it will allow him to be who he is supposed to be. He thinks if we put "other" peoples blood products in him he will change and will lose the things that make him unique. He thinks he will no longer be able to write the way he does etc. Have any of you with older children who understand the process had this problem? If so do you have any suggestions on how to convince this kid that he will not lose the gifts that God gave him - he will just be able to fully enjoy them.

 

Thanks for your input!

 

DeAnn

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DeAnn and Ellen:

 

I just want to say that I really feel for both of your situations. As I watched my 7 year old son lose his mind right in front of eyes, I always thought how much harder it would be if he were older. So, my thoughts are really with both of you!

 

Ellen, I am so happy you are seeing progress. What a journey you have been on! I wish you more success with your further treatments.

 

DeAnn, I think that once you can convince your son, Dr. K is willing to work in so many different directions to help you. Whether it be high dose antibiotics or IVIG or multiple IVIG's, I think you are working with a great doctor.

 

Elizabeth

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My 9 year old daughter says, "It only hurts a minute when they put the IV in and then it is fine. Tell him that it only changed my personality a little bit, but that was a GOOD thing. I can sit and do art and write now without having to start a fight instead. I can concentrate. I feel better in my body and my brain.... clearer. I am still me, but happier and better."

 

That is so sweet! :)

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My 9 year old daughter says, "It only hurts a minute when they put the IV in and then it is fine. Tell him that it only changed my personality a little bit, but that was a GOOD thing. I can sit and do art and write now without having to start a fight instead. I can concentrate. I feel better in my body and my brain.... clearer. I am still me, but happier and better."

 

That is so sweet! :)

 

 

I want to thank everyone for your input and suggestions. It really helps to know that you are all out there! Being a parent to one of these children can be very lonely in that no one can really relate to you. I know that most of you can!

 

Buster, I wanted to let you know that we have had a psychiatrist for our son. I am not real popular with him right now because he bucked at this diagnosis even though he was the one that brought it up (and missed it) a year ago. He just wanted to raise this drug and add that one etc and I wanted to get at the root of the problem. We have also had a few pschologists involved and none of them knew what to do with this kid. It has been very frustrating! I am so glad that your daughter is doing well! This gives me hope!

 

Peglem, Do you have a link to the sites that you would recommend or should I just google it? I suspect that my younger son had a brush with PANDAS as well. He lost his speech like your daughter and has bilateral brain damage. The neurologist thought he must have had encephalitis that went undiagnosed. Most likely viral since he was given abx. We are lucky because it did not have a big affect on his cognitive abilities. As a matter of fact he has just been identified as a gifted and talented student. It did however affect his motor skills. He has been left with ADD and since he is not mean like his brother I did not suspect anything was wrong on these lines. After hearing all of the stories here I am sending a blood sample to Dr. Cunningham on both of the boys. Did your daughter regain her speech etc. My son has been in speech therapy ever since (7 yrs) and is doing well. I guess I did not realize that PANDAS could cause this but now I wonder if that is not what happened to this other child. He changed over night! The immediate symptoms are very similar but the long term residual is quite different. I hope your daughter continues to improve and that you get the treatment she needs soon!!!

 

Manda, Your daughter is a peanut!! That was very touching and you tell her that I will tell my son what she said. I am sooo glad that she is doing better. Did she get worse after IVIG? I know it is part of the journey but quite frankly it scares me. Things can get very bad here at times and to think they could be worse is not a fun thought! I know there is hope which is more than I have had for years. I pray that each day will bring more healing for both your daughter and your family!

 

Melanie, Thank you so much for the offer of your son talking to mine. I will keep this is mind. How is your son doing now?

 

Ellen, Your story scares me. I was told that my child needs two vaccinations recently. My gut told me not to mess with his system until I had things figured out. This was right before he was diagnosed with PANDAS. Thank God I listened to my internal voice screaming at me - DON'T DO IT!! I think he would have crashed like your son. Has your son regained his skills, interests, etc? My son loved to read - not now. He loved chilling with his friends - not now. I could go on but I know you know what I am talking about. Can I ask why he has such a hard time with homework? My son had an insatiable thirst for knowledge before and now he has such anxiety associated with learning it is crazy! Getting him to do homework is painful - you can feel the anxiety radiating out of him. I don't get it but it is real. His aversion to school is unbelievable and has no good basis. I hope that your son makes a FULL recovery!!!

 

Again, thank you all for your kind words and help. If anyone else has any ideas I will take all I can get. I have to get him on board here. I don't know how I could drag a 130 pound kid that is taller than me into the surgery center to have this done. For those of you whose children have rages you know what I am talking about. I can't wait for us to all plan a - Oh My God They Are All Cured Party!!!

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Hi Dabel,

I find your post very interesting. I have a 7 yo son-- very very bright like yours-- and he also does not recognize his obsessions and incessant violent fantasies as a problem. I have looked into his eyes and shuddered at the thought of where this would leave over time, as he got bigger, etc.

 

I was also interested in your post from my own perspective. There are several parents on this board who feel that they had PANDAS as children-- or even still experience it now-- and I am one of them. I suffered so much as a child-- though, for complicated reasons, I kept it much to myself-- I developed a sort of third person narration in my head, both as a coping mechanism and a symptom of what I never realized was OCD-- and I wrote. Wrote and wrote and wrote. Wrote and wrote through my twenties (though I was suicidal) I also tended to resist getting psychological help because whatever was causing me pain seemed so intricately tied up with the only thing that brought me joy.

 

Anyway I believe I was cured of PANDAS by my pregnancy.

 

And I have not written a word of fiction since.

 

So I guess my advice is to honor what he is saying, as much as you can. He seems psychologically pretty astute.

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I can't wait for us to all plan a - Oh My God They Are All Cured Party!!!
Amen to that!

 

Peglem, Do you have a link to the sites that you would recommend or should I just google it? I suspect that my younger son had a brush with PANDAS as well. He lost his speech like your daughter and has bilateral brain damage. The neurologist thought he must have had encephalitis that went undiagnosed. Most likely viral since he was given abx. We are lucky because it did not have a big affect on his cognitive abilities. As a matter of fact he has just been identified as a gifted and talented student. It did however affect his motor skills. He has been left with ADD and since he is not mean like his brother I did not suspect anything was wrong on these lines. After hearing all of the stories here I am sending a blood sample to Dr. Cunningham on both of the boys. Did your daughter regain her speech etc. My son has been in speech therapy ever since (7 yrs) and is doing well. I guess I did not realize that PANDAS could cause this but now I wonder if that is not what happened to this other child. He changed over night! The immediate symptoms are very similar but the long term residual is quite different. I hope your daughter continues to improve and that you get the treatment she needs soon!!!

 

My daughter has not regained her speech. Once in awhile between exacerbations we'll get a few words here and there, so I'm hopeful we can get some back with Pex/IVIG...or at least be able to work on it in speech therapy. When i think of all she lost...it just makes me ill, so I try not to think of it...I just focus on moving forward.

 

Here are some sites that I googled that might work for explaining things:

http://www.cyh.sa.gov.au/HealthTopics/Heal...152&id=2402

http://kidshealth.org/kid/htbw/immune.html

This one has some video games to demonstrate: http://nobelprize.org/educational_games/medicine/immunity/

 

Well, here is the site that linked to all of those. Links to different body systems are near the bottom:

http://www.kidskonnect.com/subject-index/3...human-body.html

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Hi Dabel,

I find your post very interesting. I have a 7 yo son-- very very bright like yours-- and he also does not recognize his obsessions and incessant violent fantasies as a problem. I have looked into his eyes and shuddered at the thought of where this would leave over time, as he got bigger, etc.

 

I was also interested in your post from my own perspective. There are several parents on this board who feel that they had PANDAS as children-- or even still experience it now-- and I am one of them. I suffered so much as a child-- though, for complicated reasons, I kept it much to myself-- I developed a sort of third person narration in my head, both as a coping mechanism and a symptom of what I never realized was OCD-- and I wrote. Wrote and wrote and wrote. Wrote and wrote through my twenties (though I was suicidal) I also tended to resist getting psychological help because whatever was causing me pain seemed so intricately tied up with the only thing that brought me joy.

 

Anyway I believe I was cured of PANDAS by my pregnancy.

 

And I have not written a word of fiction since.

 

So I guess my advice is to honor what he is saying, as much as you can. He seems psychologically pretty astute.

 

Bronxmom,

 

Just to clarfy. My son does know that these thoughts and acts are indeed a problem. What he is concerned about is losing himself. He fears that his core personality etc will be changed. I feel for you. I used to look at my son in the past and wonder where this would lead him or us also. I still wonder this. I pray that this IVIG works - if not (not to be negative) my son will likely end up dead (by his own hand) or in prison. The mere thought makes me sick but sometimes I have to face this so I know why I am continuing to fight the fight with all I've got! As far as myself having OCD I have never experienced it. I am sorry that you had such a tough time for years but I guess one good thing is you can relate to your child. I am compassionate etc but I can not imagine having this problem. I wonder if this is why he writes? I hope not. That is very interesting that after pregnancy you no longer had this issue. I guess that treatment is out of the question for my son. ha ha

 

DeAnn

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