amy s

It is a nerve wracking decision to do IVIg. For us, it was a life saver and I am thrilled for my child. Today is her 2nd day back to school (full day and without me) and I am just so proud of her! She is almost completely back to her old self and our whole family is so much more relaxed and happy. It took us about 10 days to see REAL BIG improvement...but we saw some improvement in a couple days afterward. She was pretty fatigued for several weeks afterward and I'm not sure why but even maybe up to a month or more she seemed pretty fatigued. Her experiences during the IVIg were difficult, only because of some pretty bad raging going on (several docs & nurses in the immediate vicinity wanted to send her to a 'higher level of care') but our doc pushed for us to stay and continue it there. She was fatigued and irritable and nervous the whole time. Have him drink plenty of water in the days/weeks before and after! It is dehydrating. My dd had a pretty bad case of sudden constipation right in the week and a half afterward which must have been complicated by not enough water. My dd did not have any nausea or vomitting or headaches like other people talk about. Good luck! Keep us posted.

The best of luck to your family! I hope it all goes well for your son. Sorry he wasn't feeling well after the infusion, though. Keep us posted on the progress!

Indigo-- Do you mind...I've never heard of a body brushing regime. What is it? I did try to google it and sounds like a dry body buffing type thing to get rid of dead skin cells? How do you do it and when? When my dd gets really (pandas) sick I often would give her regular massages with lotion to help her relax. There has been several in my dd's world who have brought up sensory issues and the school even put in her iep to have an OT eval for sensory issues. But it hasn't been done and so I don't have any direction as far as that goes. What's been your child's experience with it? Thanks! regards, amy s

My dd also has sensory issues since her 1st pandas episode. Her's is hair/head related (suddenly she can't stand to have her hair brushed) and also loud noises bother her also very sensitive to smells. These things have not really went away after IVIg like some of the other symptoms did.

Thanks EA- Good point...and it was one I hadn't thought of until you wrote that. I had the meeting at the school today regarding her starting school again. Before the meeting I probed her a bit regarding her feelings on the matter. She's very excited to go back so that's good. At the meeting it was decided that only for tomorrow she will go for a 1/2 day and that I would accompany her while she is there. She did say that she wanted ME to be there, so that's why I am going for the first day back. And secondly the school thought it was in her best interest (the 1/2 day tomorrow only) because all afternoon there will be testing going on...material that she missed. I'm so excited that she's going back! Nervous too! I really hope it works and she can continue to go to regular school. Next week she will go full days and without me! I will update in a few weeks on her progress! regards, amy s

Darla, I don't know what to say to help. We have had several visits to neurologists and I couldn't get them to believe in pandas or understand our situation. In fact one even tried to hospitalize my dd in a mental hospital against my wishes (for MY safety) But when we went to the neurologist at least they did an MRI and an EEG so that I could find out there was nothing seen. I guess that helped. (don't get me wrong...that neurologist was really nice, helpful and at least it was MORE documentation of the severity of symptoms...which that is important...having enough documentation to justify treatment options....he even got video of a rage during her eeg so that was good for us) Now...after everything we have been through, I refuse to take my child to a doctor who doesn't believe in pandas. I will call first and speak to the nurse and see if this is an appropriate appointment for my child or not. The nurses I speak with typically never have heard of pandas and so I ask them to please speak to the doctor and to call me back. I give them a quick run down of history, etc. There are all kinds of things that a neurologist can order to check for...but ours never ordered any strept titers or even cultures etc. But my child saw the first neuro about 7 months AFTER the beginning of symptoms. My dd's organic acid tests came back perfect, he tested for porphyria (perfect) even did a chromosome check which was perfect. I had my dd's catacholomine's checked and cortisol levels, ammonia, lead, amino acids...everything was perfect but she was OUT OF CONTROL BIZARRE. Right after we got back home from the testing I heard of pandas and emailed that neuro. He said yes that he'd heard of it but didn't think that was what my dd had'. Anyway, all water under the bridge now, but I guess my suggestion to you is bring research based papers in with you to the appointment...bring proof of your child's recent illness. It's just that there isn't anything that I know of to definitively diagnosis pandas. Dang, all of us wish there was. That would help immensly. Have you looked at the Neuroscience pandas OCD panel? I don't have the website right now but I'm sure if you google it you can find it pretty easy. Maybe you could request that from the neuro? Good luck and let us know how it goes! regards, amy s

Hi, Well, just real quick reply here...I'm cooking. Anyway, some selective IgA deficiencies cannot have IVIg due to anaphylactic reaction to having IgA introduced into the body. Check out this link real quick... http://www.immunedisease.com/patients-and-...deficiency.html This paragraph taken from that site. Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals. That's why I made sure my dd was tested before IVIg. I don't know what Dr. K does. I just know this is on all the sites regarding selective IgA deficiency (which I suspected in my dd). Gotta go...liver and onions burning. regards, amy s Wow, coming back to read this...I am really confused. What I said and posted doesn't seem to make sense... Anyway, by now I'm sure you figured out what I was trying to say. Basically I had read a lot about selective IgA deficiency and was afraid that my dd might have it. The reasons were because she'd had so many illnesses and two of which were autoimmune (glomerulonephritis and pandas) in nature so that's why I was reading up on what could be wrong with her immune system to allow her to get pandas to begin with. I was afraid that she might have selective IgA deficeincy and read that when one has that they could have an anaphylactic reaction to IVIg. Anyway, odd...here in the paragraph that I snipped from that site, it says that experts do not necessarily caution the administration of IVIg in individuals with IgA deficency. I didn't even see that part when I did that last week. Other things I've read did caution against IVIg in those with IgA deficency. I just felt better getting it tested before proceeding with IVIg. Sounds like (???) your child's IgA was normal to me...but I don't understand why the tTg IGG would be high considering that tissue transglutaminase is tested in those with IgA deficency celiac disease. I'm kinda confused.... is the tTg IGG high or the IgA? Maybe there are other reasons it can be high??? Have you talked to your doctor about this since you last posted? The 'high' 51 level....what are the normal parameters, do you know? I really don't know what all this means. I THINK that IVIg would help if it were celiac disease...but if it is related to being IgA deficient...I don't know. I would think they would be more cautious in giving IVIg or something. But perhaps I'm wrong... good luck and let me know what you find out!!!

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

Yes, I definately have notice my dd's breath being 'off' on several occasions. Not just bad breath kind of breath, either...and not the diabetic type fruity breath either. I have mentioned it to doctors on several occasions since this began for us August 2007. But of course, sinus infections and strep throat will definately cause breath to smell bad so maybe that is it? But even when my dd didn't have any physical signs of illness I would notice an odd smell with her breath. Interesting. She hasn't had that for a long time now.

Hi all, Just wanted to give an update on my dd, now almost 7 weeks post IVIg. She is doing really great. I would say she is 95% back to her pre august 2007 self, some days it is 100% back. She is happy almost all the time and the rages are gone. No rages whatsoever since the week OF the IVIg. Right now she seems almost like any other kid. Slight hand tremors are still present and the very rare occasion she will say something or do something reminiscent of her OCD days. Even the anxiety seems to be going away and she even wants to go and do things again (actually wants to go out to dinner, go bowling, to movies, etc). Her pupils seem to react normally now and her urinary issues are fading. She's reading chapter books, changing focus easily. She is hilarious again! We are so happy to have her back. She hasn't been back to school in a couple months. Her home bound teacher is not planning to come back and we have a meeting on Jan 8th regarding getting her back on track with school and such. I think she will be a little nervous to go back but she seems to really want to and I don't see why she can't go back. I was contemplating trying half days for a week to see how it goes but I am not sure. She's just doing really great, I can't really justify that. I guess my biggest concern is that she will come into contact with a classmate who is a silent carrier of strep. I find myself extremely protective of her and now I'M afraid to be away from her. This illness brought our family to it's knees and my poor dd has gone through so much. I know everyone understands, for sure. I hope everyone else is doing good. Happy new year to you all.

Hi green, It sounds like you are doing great with getting online research and finding a doctor who you can work with. I just wanted to chime in and agree about the psych med issue. For my dd, they did very little for her...and I'm not sure if they made some of her symptoms worse or not, because it can be hard to know what is pandas and what is psych meds. for the most part I blamed everything on the pandas but after reading some stories on here I have wondered if some of it was not from the psych meds. It sounds promising that you already have a doctor and some sort of a plan and antibiotics for your child! Some of the parents desperately try to get antibiotics for their child and are not able to. For us, it was 6-7 months before I even knew about pandas but as soon as I did was able to obtain antibiotics (in retrospect I don't think it worked for her- it was penicillin vk, by the way). I don't know anything about tics, so I can't answer your questions regarding any of that. My dd presented with severe ocd and other psych issues, not tics. Good luck to you and I hope your child's tics do wane soon.

Good luck Jena! I'm happy that you were able to set things up. As far as when my dd got ivig, we had a very bad day with severe raging when they had to put the iv in, though she'd had IV's in the past, she was just very ill this time. They almost sent her to another hospital but we had a wonderful doctor who pushed for us to just do it there. Our doctor also did my dd's ivig working with Dr. K's protocol. We thought we almost would not get it done, though. We knew she would do that (rage), because up to that point she was raging about almost anything and it would last 3, 4, 5 hours at a time with max assist of 'keeping her safe', you could say. As far as during the procedure, she had no complications... just a few different times of mild rages in which we were just desperately trying to keep the IV in. She had no rashes. She did not mention any headaches and had no nausea or vomiting. She did get very constipated straight away though, which was a complete opposite for her because she'd had loose stools for MONTHS prior to the IVIg and she also had some fatigue which I believe started when she got the IVIg and it hung around for several weeks. Otherwise all was good. I don't regret a thing except I wish we could have gotten it done sooner.

Hi Darla, I'm sorry to hear that your child is sick. Everyone's situation is different and I bet somehow you will know when the time is right to explore IVIg as a treatment option. Read all you can about it. I know that my dd has benefited from it substantially so far and I wish we could have done it straight away when her severe OCD symptoms exploded 18 months ago but we couldn't for many reasons. One is that we didn't know pandas existed for the first 7 months of her illness, and two because we were out of the country. Hopefully the antibiotics will help. Is your child staying on the antibiotics? I think most of the pandas kids on here are on some sort of prophylactic antibiotic. Frankly I am terrified to take my child off of hers. My dd had IVIg and is now doing very good. But as far as supplements, I give omega 3 (1200mg twice per day), mastica, ola loa multivitamin, and immudyne immune support macroforce plus ip6...in addition to antiviral and antibiotic and probiotics. If she has an increase in symptoms I am thinking of starting transfer factors which are waiting in my fridge just in case. Good luck to you and your family.

Well, I don't think it would hurt anything to have your son tested for strep as well. Yes, if he had strep it could affect your dd. Congestion USUALLY is not something that goes along with strep, unless you have something viral going at the same time, which is entirely possible. But yes strept could be in the sinuses. I don't know the answers to the other questions. My child does not take 5-HTP. Definately we here understand how hard the ocd is to live with. Hang in there and good luck. regards, amy s

Hi there. None of us can diagnosis you, but it does sound like ocd to me. This is my understanding of it....The obsession is the part where you are thinking the thoughts and then the compulsion is the part where you are doing the actions that you think will somehow control the thoughts. Some people have pure 'o' ocd and others have the full OCD stuff going on. Good luck to you. Do lots of research on the disorder and then you may need to visit a doctor depending on the severity of your symptoms. Many people go undiagnosed for years with this. You mention that you get depressed and then happy again...which many normal people do get normal ups and downs, (and I don't know the severity of your ups and downs) but sometimes when there are BIG fluctuations in mood that might be an indication of other disorders so you may want to bring up to your doctor when you go next time. Take good care of you!!!

I'm so sorry to hear your story. But I am very glad to hear that you are trying to take care of yourself. You HAVE to take care of yourself. What you are feeling...the sadness and depression beginning...I think is normal considering everything you have been through lately. OCD can be absolutely horrible for the family as for the person with the ocd...it can stop everything someone believes about their life in it's tracks, as I know you are aware. Good luck to you and your wife and your life together. It sounds like you are trying your best to be a supportive husband. If the two of you have an appointment with a psychologist in two weeks it sounds as if there is still some hope for reconciliation and even if you find out that there is not perhaps the two of you can still support each other as friends someday.

Hi, Well, just real quick reply here...I'm cooking. Anyway, some selective IgA deficiencies cannot have IVIg due to anaphylactic reaction to having IgA introduced into the body. Check out this link real quick... http://www.immunedisease.com/patients-and-...deficiency.html This paragraph taken from that site. Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals. That's why I made sure my dd was tested before IVIg. I don't know what Dr. K does. I just know this is on all the sites regarding selective IgA deficiency (which I suspected in my dd). Gotta go...liver and onions burning. regards, amy s

This is an interesting article. I believe there is something else wrong with my dd's immune system other than this autoimmune issue with PANDAS. She also had glomerulonephritis as a 3 year old and has had constant infections of one sort or another. When I took her to the rheumatologist I did ask about Ig testing and discussed my concerns (probably could have gotten more detailed Ig testing if I would have taken her to an immunologist or maybe infectious disease doc?) but mainly I was worried about an IgA deficiency because you cannot get IVIg if you have an IgA deficiency (and the rheumatologist agreed it was good to test given two autoimmune problems and constant infections)...so anyway, they did basic immunology testing for IgA, IgG, IgM and c3 and C4 levels, all came back normal. But they did not do the specific IgG testing which this article talks about. Anyway, interesting...

Hey Faith, his tics are the same....they haven't been too pronounced, just a mild eye winking. When he had strep his tics increased dramatically especially with his fever but I haven't seen a change either way. His throat is really sore but I think that's b/c he threw up quite a few times last night and it's really irritated. I hope you guys had a nice Christmas and are relaxing this week in preparing for the next year. Bonnie Vomitting is very common in connection with strep throat. Not always, but it is common that it goes along with it.

I thought I'd pass along this article... http://www.klaire.com/images/PANDAS.pdf My dd uses Klaire labs probiotics and I ran across this article on their site.

thanks for clarifying. When exactly did your daughter have IVIG? What changes did you notice and at what point? You may remember from my earlier posts that Gaby had it OCT 4, had 2 weeks of 80% reversal, then gradually behaviors came back.Right now she is still anxious and difficulty concentrating, but I believe its better - not too many anger outbursts - just when she's confronted by her twin or other kids and she gets anxious. Nov 17 & 18 is when my dd had IVIg. She had and still has about 90% improvement back to baseline. But we didn't really get significant improvement until the second week after. She still has anxiety that is hanging on (but at a functional level now at least) and very subclinical OCD tendencies that I can see as well as emotional times. Now when she is emotional about something she cries rather than rages.

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back) Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us. I'm not sure I understand your post. Did you say that before IVIG, your dd did not have any anxiety and now, s/p IVIG, she does? Pat Sorry for the confusion.... Before August 2007 (when pandas symptoms began) my dd did not have any anxiety. She had anxiety throughout the whole time along with her other pandas stuff and now s/p IVIg she still has anxiety, albeit at a functional level at least.

Yeah, I agree....I want to hear more about children growing out of this. I know that my dd will have a lasting effect...if nothing else to get over the trauma that was caused during all the pandas spikes. Hopefully we can move on from that stuff soon, though. I know that before my dd had NO anxiety about anything basically and after IVIg it is still hanging on so far. I have wondered if she will grow up and be an anxious adult now that this happened to her (even if the full blown OCD, etc doesn't ever come back) Also now that she is doing so much better I do wonder what did she miss (normal growth and development stuff) that we hadn't thought of before, or stuff that didn't JUMP out at us.

I don't see why not. I know that when my dd is around children with strep throat her pandas symptoms spiked. When I spoke to the rheumatologist regarding that phenomenon he wasn't a bit surprised and nodded in agreement about it and Dr. K said that too, that with his experience the children only have to be exposed to strep for symptoms to worsen. Good luck! That sounds crummy to be dealing with along with everything going on with Gaby too. Take good care!!

Hi Faith- I can totally sympathize with the situation with your ds. My dd also has (had?) periods of time when she does nothing but erase perfectly good letters/numbers. This drove us crazy but she could NOT seem to stop it. since IVig she's gotten better with it (times one thousand) but still has the tendency to want her work perfect. But it's odd, the work is NOT perfect, by far...yet she only would get fixated on certain aspects of it being perfect and didn't even see the glaring errors on other parts of the work. She can be such a perfectionist that it is hard to even tell her when she has made an error, however so small. That's when things really got so out of hand at my dd school (she had bad rages too sometimes related to this and sometimes not) anyway, she had to leave school temporarily and we're hoping she can go back in January since she's had such an improvement after IVIg (she has pandas). I don't know what could help it, otherwise. I just know our experience. She didn't get help from that with antibiotics. I didn't really think of it as an attention thing with my dd. Your child might be different. My dd just had such clear case of OCD that I knew that was part of it, for her. Good luck with everything. Sometimes my dd would seem to do better than other times, for no reason that I knew of. Sometimes I would threaten to take away the erasers, but that didn't help matters. I remember that used to drive me so crazy. It takes 10 times longer to do school work/homework like that. Have a nice holiday and hope you find the answers you need. regards, amy s