Dedee

You guys are probably the only ones who would understand how nerve racking it is to wait and wait to get test results back for this kind of thing. On one hand I am scared they will show nothing and then on the other I am scared of what it may show. I mean, what will I do if everything is normal? Then what? I'm not even sure I know what all she drew. There were 11 vials of blood when she drew it all. It was so much to take in at one visit and I only remember talking about inflammatory pannels, immunology pannels, GI markers (stool samples), antibody reactions. I can't even remember the rest. We did a Cunningham test later but those results aren't back yet. My stomach is churning. I don't no what I'm looking for, but I guess I get what I get. I just want answers and a treatment. We will take these results to an appointment we have with Dr. Murphy next week for a plan of action. The one we see here is good but just doesnt have the experience that the "experts" have. She is a wonderful resource and will be here to follow up with the action plan we come home with. Please pray for my dd that today will bring answers and hope for recovery. Dedee

Wishing you luck with your IVIG. Continue with your appeal. I have heard many cases that eventually get approved after several doctors send letters confirming the same diagnosis. I wondered how you found out that Cigna will pay for IVIG. We are seeking IVIG and have appointment next week with a PANDAS expert. Our insurance is Cigna and we are hoping we can get approval. Please keep us updated on your son's progress. IVIG has helped so many. Dedee

She got 80mg of SoluMedrol. She weighs 52 lbs. I think we definitely saw progress with the steriods. I just think the progress was interrupted and set back by the onset of the illness. Still though, even now she is more functional than she was pre-steriods. I can be happy with the fact that she is back to dressing herself, even though the tantrums have returned. At this point, we take ANY improvement as a blessing. There is just that constant reminder that this isn't going to be a quick journey and it is sure to be full of set backs. I am thankful for all the wonderful people here who are dedicated to their children and to helping other parents navigate this difficult path armed with knowledge and support. Dedee

Well she only did one IV steriod infusion. We started seeing improvement almost immediately. It was small things and very gradual. That lasted about a week and then she got a cold and the next day the rages returned (she had only had one during that week). She has rages almost daily, they differ in how violent and how long they last. We had a one week reprieve. She still dresses herself which we hadn't seen since before christmas, so we haven't lost that. She has been on antibiotic injections monthly for two months (bicillin). We don't see much relief from that. Going back tomorrow and I think I will ask for another steriod infusion. At least discuss it. Just trying to hold on till next week. Dedee

Just throwing in my experience. Every situation and every child is different. My oldest son (now 15) has had PANDAS since he was six. Took several years to get appropriate diagnosis and treatment. He had his tonsils out and started daily antibiotics nearly four years ago. He takes amoxicillin 250mg twice daily. So I realize this isn't the strongest antibiotic out there but we have always been fortunate that it works for him. I make sure he gets plenty of probiotics, in addition to his fish oil, daily vitamins, and magnesium. He is actually the most healthy of all my children. He rarely gets sick. He had a cold this winter, which is the first I can remember him being sick in a long time. We have discussed taking him off the antibiotics several times but when it came down to it I just chickened out. We have an appointment to see Dr. Murphy for my younger daughter next week. She is the one who saw my son four years ago and approved the antibiotic therapy (My pediatrician prescribes). I plan to ask her about my son while I'm there if I can remember. My son is doing well so I have been reluctant to change anything, but it probably bears looking at. I will let you know what she says. It's a very hard decision to make. Dedee

My daughter got steriods over a week ago and we started to see immediate improvement. It was slow gradual improvement but still improvement. She started dressing herself (hasn't done that in five months). Her rages and defiance were much less. Things were improving a little bit everyday. Then she got a runny nose and cough and it all started to backslide. The rages and tantrums came back first. She did still dress herself this morning but was very anxious about the rain and possible storms today. She managed to get to school but the school has already called and said she feels sick (usually means anxiety). I didn't get any calls last week at all. Uggg, I feel like I should put her in a bubble. How can you make any progress when any little cold puts you right back to square one. So we are supposed to go to the doctor to get the rest of her test results on Wed. I am thinking of calling to see if we can get another run of steriods while we are there. When she got her first dose, they said if she had improvement we could schedule for another dose in a week, but I wanted to wait and see how much improvement we got out of the first run. Also, next week we go to Florida to see Dr. Murphy. So what do you all think? Should I go ahead with one more run to get us through till we get to see the "expert"? You guys know how hard it is to deal with the rages, tantrums and defiance. For some reason those are the symptoms that come back first. I really need advice / opinions here. I'm at my whits end and keep second guessing all of my decisions. I got a brief glimpse of how it could be only to have it jerked away. We are devastated and going day to day waiting till we can see someone who can offer us some hope. Thank you all for your support and guidance during such a difficult time. Dedee

My suggestion is to get rid of any doctor who discourages you from persuing this. You are his mother and you should always follow your instinct. You know your child better than anyone and you are NOT crazy. Do not stop until you find someone who will help your son. He is young and he deserves a better life. Thank goodness he has you to fight for him and not take no for an answer. We have all been where you are and many have been to several doctors before finding the one who can see what you see. I am sure that if you stick around this board you will find the information and support you need to get your son on the path to healing. Good luck and keep us posted. Dedee

You guys probably remember that I have a dd who is 7 that had a severe PANDAS flare in November and has only gotten worse since that time. We have had Bicillin injections twice with no real improvement. She had IV steriods last week and we are starting to see gradual improvement. We are definitely looking in the direction of IVIG. We had made an appointment to see Dr. Murphy in March but I am second guessing because I heard she only does antibiotics. We saw her several years ago with my son who is PANDAS but he only required antibiotics and we didn't look any further. This time around, I KNOW we need IVIG. I really loved Dr. Murphy but don't want to make a wasted trip (15 hrs from home) if we aren't going to see this the same way. So I have been considering Dr. K. He is much closer to where I live and I have heard good things about his experience with IVIG. I'm not sure how much if any my insurance would pay. Does he file insurance? I was thinking about the phone consult, but didn't want to put the money into it if I wasn't planning on following through with him. For those of you who have seen him or had any experience with him, I would love your input or opinions. Thanks so much. Dedee

My daughter weighs 52 pounds. If she gave the same amount every one to two weeks for a total of four times (like she said is her protocol) that would be close to the 7mg /kg you mention. My daughter had a major rage last night which was discouraging but this morning was a great morning again. Two steps forward, one step back......

I know this has been discussed before so I apologize for going there again. We were told that our insurance is difficult to convince to pay for IVIG but it has been done before. We have Cigna and they have denied claims in the past (not PANDAS related). So I just wondered if anyone had experience swaying their insurance company. I don't know what we will do if we have to pay out of pocket. Many of the tests we are running have been out of pocket and it's putting a strain on the family. Of course, you do what you have to for your child and I'm not stopping till I have my little girl back. Thank you all so much. Dedee

She gave 80mg SoluMedrol and said we could repeat in one to two weeks. I just cant imagine going through that again. They had to sedate her to put in the IV and she still fought like crazy. Just getting her back in the office is going to be a major issue I'm sure. If we did it over several days we could leave the IV in. I guess I will just watch and see what progress we make.

I had left a message for the NP who is seeing my dd for PANDAS that I thought we should try a steriod injection because she kept getting worse and it was starting to affect her in school. Her assistant called me back on friday and told me that she agreed and to bring her in. When I got there the NP told me that her protocol is to give the steriods slowly IV. I agreed because we were drawing more labs and the Cunningham test anyway, so the stick was coming no matter what. So she got her IV steriods and everyone kept telling me that I may see worsening of symptoms for a few days. However, she really had a pretty good week-end. We had to go out of town for a wedding, and as usual she was stuck by my side the entire time but no rages, defiance or tantrums. She hand one episode of anxiety, so clearly the seperation anxiety and panic tendencies are still there but her frustration tolerance is much better. For those of you who have used steriods, do you think we will continue to see improvement or is this all we will get? The NP said we could do another round in a couple of weeks if she does well with this. She was very worried that she may get worse, but so far we have only seen improvement. She still has a long way to go, but at this point we are willing to take anything. Dedee

I am a Critical Care RN and most recently a Critical Care Educator. I have provided all of the education to my pediatrician about PANDAS / PITAND. She believes but is reluctant to treat without some sort of treatment plan or guidance from a "specialist". Once she has someone to refer to, she is good with it. That works for now.

Lara, Did Dr. Murphy recommend IVIG? I wonder if she would send a treatment plan or recommendation to this doctor saying that immunization is not a good option at this point. Personally, I wouldn't do it either. I would find someone else to do the IVIG based on something else. To risky....

Yes, my daughter is the one that doesn't take meds. Thats why I wondered about the taste. I had found a liquid but didn't know how the taste is or if it was mild enough to hide in a drink or milk shake. Citrus is harder to hide, she doesn't drink juice and citrus is hard to hide in chocolate milk but if it is mild enough we can put in a milk shake or something. I am desperately looking for an Omega 3 supplement and fish oil hasn't been successful so far. Dedee

I was considering trying to give CLO to my daughter. I would have to disguise it in a drink or something. Is that possible or is the taste to obvious? So far I haven't been able to hide fish oil in anything. She picks up on that right away and wigs out.

You all make me feel better about IVIG. I don't want to rush into it, but like Debbie, I have seen the affects on my son and don't want to wait around to see what other damage could be done. I just wonder if the doctors will feel the same way. Going next week to ask for a steriod injection so we can see how she reacts to that. They said the rest of her labs should be back by then. Her appt is next Thursday. Hope we can wait that long. Last night was another rough night. Trying to stay strong - Dedee

Sarah Jane and others - who did you use to get your IVIG? I am hoping that if she had IVIG it might help with the paranoia over medications at least maybe we could reason with her better if she was in a better place in her thinking. Dedee

This is my third child with PANDAS symptoms. My second son has never needed treatment because his symptoms have been so mild. My first son unfortunately waited a while because we didn't know what we were dealing with for a while. So now we are on child # 3. She is a real challenge due to the barrier of not being able to get her to take any medications or supplements. Her bicillin injection two weeks ago has given mild relief. I'm sure you can all understand how hard this is on the entire family dealing with the rages and defiance on a daily basis. I really don't believe this is lyme because of the family connection of PANDAS with her brothers. My oldest son has done so well after he finally got appropriate treatment for his PANDAS but my daughter must get to a place where she can trust taking medications and supplements before we can work along that avenue. So am I wrong to be thinking about IVIG already? She is only seven so I don't really see the need to be conservative. We have a long road and I prefer to try to get this under control early rather than playing around for months hoping she will come around and do something she isn't going to do. Understand please, I am not over exagerating the medication thing. It's like saying I can control her rages if I was a better parent. I can not, no matter what I say or do, get her to take this stuff. I have mixed it in food and drinks without her knowledge but still cant get the amounts and frequency that she should be getting of these supplements. So I am ready to move to the next step. I'm sure you all can tell the frustration in my post. I really need to hear suggestions, opinions, and / or personal experiences. Thanks so much. Dedee

Just an update. We went to our pediatrician yesterday and she believes it is a sort of panic attack. She said in children predisposed to anxiety (such as PANDAS kids), when something in the body starts to feel out of sorts, even something simple like an increased heart rate from playing, they don't process that as a normal reaction and it can cause an increase in catacholamine release, which only makes things worse, and then they feel tight and cant breathe and becomes a vicious cycle. She said it's important to try to do something to try to break the cycle and promote relaxation. She did say if we wanted to persue it and move to pediatric cardiology she would do that but was worried about more stress on my daughter since she gets so freaked out by any medical attention at all. It's a huge ordeal just to take her blood pressure. So I think we will watch things and hopefully when we get some treatment for this things will get under control. Still waiting for the rest of our lab work. Think I will call the other doctor's office today (they were closed yesterday), and see if anything is back yet. Thanks for everyone's help. I get so much reassurance here. God bless you all. Dedee

Awesome Denise, Thanks so much for your hard work! Dedee

Worried Dad - Did you all ever have any sort of cardiac work up like an echocardiogram or anything? How long did it take for this sort of thing to clear. Thanks for your reply. Dedee

Has anyone had experience with their PANDAS child complaining of having pain in their "chest and lungs". She says her whole chest is really tight and that she feels like she can't breath good. At the same time she says her arms and legs are very heavy and she feels like she can't walk and that she is dizzy and nauseated. She has done this a couple of times in the past but last night it went on for over an hour. I thought it might be anxiety and tried to get her to take a warm bath but when she got in the water she said the water made it harder to breath. Usually a warm bath is very calming for her. As she was getting out of the bath, she stumbled because of the dizziness and then another time while she was dressing, almost fell because she was dizzy. I have an appointment for her to see her pediatrician this afternoon, but her docotor isn't very knowledgable on PANDAS. She (the doctor) knows we are in the middle of a PANDAS flare but we are waiting for our appointment to see Dr. Murphy (in three weeks)to decide on treatment. My daughter had a bicillin injection 10 days ago and we have seen mild improvement in behavior but no changes in her tic. So, do you all think this is related to PANDAS or something else? Is it serious or just another one of those strange PANDAS symptoms? I'm not sure I'm going to make it three more weeks. I really need someone around here who knows more about PANDAS than I do. I get so tired of trying to diagnose and treat my on child. I would really appreciate anyone's input or personal experience. Thanks so much. Dazed & Confused - Dedee

My daughter complains that she is dizzy and wobbly. She says her arms and legs are heavy. Just recently she complains that her chest hurts and she can't breath good. All those type things are very frustrating because it's hard to know if they just don't want to go to school or are really feeling bad. We take it day by day. I have had to take her to school kicking and screaming on some days. Today however, I let her stay with her Granny because she has complained since last night of dizziness, chest pain and hard to breath. I will take her to the doctor this afternoon. It is so hard to know what is PANDAS related and what isn't. Also, maybe it is just anxiety? I feel your frustration. I keep telling myself there isn't a rule book for this illness. I just go day to day doing the best I can based on my gut feeling. Most likely, she misses more school than she should, but she is a bright girl and we make sure she does all her work at home. I try not to worry about what the teachers think, most are supportive, others usually pretend to be. As long as she isn't a problem in the class room or dropping her grades it's not usually a problem. Of course, she is only in first grade, but I have been through this with my son and I just made sure I had a doctor's note explaining his condition. He is in high school now and a straight A student, so it didn't hurt him too much when he missed some in his early years. So, just do what you think is right as a mother. You know what is best for your child. Good luck and let me know if you figure out the dizziness thing. Dedee

My middle child who only has mild PANDAS symptoms also has frequent headaches. He has seen a neurologist who diagnosed him with migranes. He takes a mild anti-spasmotic at night before bedtime and this helps decrease the frequency. My daughter who recently had her first PANDAS flare just started complaining of headaches about three weeks ago. Never had a headache that I know of before. Dedee