Tamistwins

Thank you everyone for your responses. It's good to know but what has knowing done for me with my other two kids. Things are just getting worse. Everyday is a battle, I just pray for one normal day because my nerves can't handle this stress anymore. I know so many of you are going through the same thing, I just hate how I feel towards my older ones. I hate that none of us are happy and I feel like a total failure as a parent.

Hi All, My train wreck of a life seems to be getting worse and worse. Today I took my 15 month old to the lab to draw blood for Cunningham test. It was so awful, the tech didn't get the needle in the right spot and then they had to stick him again. He was screaming and I was heartbroken. To top it off, apparantly labcorp's new policy is that as a courtesy to us they can draw blood to be sent out elsewhere only if we have a script for other blood test that labcorp will perform. In other words they were forcing me to get a script from Dr. for any other bloodwork otherwise they couldn't draw the blood for Cunningham test. This would require another vial for my 15 month old. Well, after the mishap with the tech it seems as if they didn't draw the extra blood. Then my 7 year old who tested high on the Cunningham test had an ear piercing melt down. When are things going to get better? We are 4 weeks after first IVIG and things are just worse. Sorry just needed to vent.

Wow Jay Jay that is so great for you. My two children had IVIG with Dr. B and bc/bs denied us too. We are fighting it with a patient advocate and I am praying we get your news as well.

Hi Tantrums, I am so sorry for what you are going through. I know it is so frustrating and we feel helpless. My son tried a bunch of antibiotics too have you tried zithromax, this seems to be one that worked for us.

Hi Bio and adopt, I am so happy to hear that your children are doing better, I can't imagine not having mine get better before they reach teen years. I am so sorry that you are only getting a diagnoses now. It must have been so hard raising them and feeling like there is a problem but not knowing what it is. Not that it's much easier having a diagnoses and not seeing improvement. It is so nice to hear your son is a sweet easy teen. My son is soo difficult and my daughter isn't any easier. Now I am scared my baby has it too. He bangs his head which for some children may be normal at his age but he seems to do it out of anger and frustration and I am thinking it is not normal. He also pinches when he is angry he is 15 months. I just got the cunningham kit for him so that I can know one way or another what we are dealing with. I had him on zithromax too and I think it helped him but he spits it out and I didn't want to continue giving a baby antibiotic for no reason. It's so difficult and I pray I wont go insane before they are helped!

So they both had IVIG? what dose? How long ago? Sometimes things get worse for the first few weeks post-IVIG. I am surprised they are not both currently on antibiotics. Many PANDAS parents find their kids do much better (regardless of whether they've had IVIG or not) when kept on full-strength antibiotics (long term). Azith. and Augmentin are popular ones on this forum. Also, my fear is that if (esp. you son) is still strep positive (even with having IVIG) the benefits of IVIG will be lost if he continues to have a strep infection (or colonization). Could I ask where you live? Are you already working with a PANDAS doc? How long ago was this? Do you remember what antibiotic and dose was used. Also, have you tried Advil (ibuprofen)? Sometimes that helps PANDAS symptoms. Hi EA MOM, I really don't know what dose they had but it was a treatment over the course of 2 days. My son had treatment aug 25th and 26th and my daughter a week later. My kids are currently on antibiotics and were on it before IVIG. Is it possible for a child to have strep infection while on antibiotics? He is always complaining he dosen't feel well. I'm not sure if it is just one of his routines because he only tells me at night when he needs to go to bed. I live in NJ and we are working with DR. B. in CT. I do give motrin from time to time, not sure of the results.

Hi Vickie, Thank you! We have seen a specialist and we have tried many antibiotics the augmentin xr, biaxin, orapred and he has been on zithromax before ivig and he continues to take it. We have all been tested in our home, My husband and I both showed that we had previous mycoplasma infection and my mother had an active one so she was treated with antibiotics.

Oh Tamistwins.... I wish I could give you a real hug and find a way to tell you that I felt that way for years. When my son was younger and so very disrespectful to me and always hurting others I just could not believe that he was my child and kept wondering what I did to deserve this. He is not that way anymore, but he does still have rages when he is in an exacerbation. Only now he and I both know what it is and he is old enough to talk with me about it. Dr. B is right that it is not your son's fault, but that does not mean that your son should not be responsible for any parts of his behavior. It is so difficult to sort out how much to expect and when to start expecting more. I wish we had child psychologists that specialized in PANDAS. We have a few physical doctors treating it across the country, but I don't know of any psychologists or behavioral counselors.... does anyone else? Now, you said your son has had IVIG and is on antibiotics. How long ago was the IVIG, and what antibiotic is he on? Is he taking anything else, like diflucan? Probiotics? Also, do you have a way of keeping track of behaviors every day. It is important to keep track of behaviors so you can see when there are small changes. Sometimes our kids are getting better or worse and we do not realize it right away. I am sorry to hit you with so many questions. You have been reading this forum for a while, so I am sure you have thought of these things, but perhaps there are suggestions that others can make in the way of supplements or timing of medication that could help you. I will be looking for you reply! Hi Kimballot, sorry it's taking me so long to respond. I am so happy to hear that your son is no longer the way he used to be with regards to disrespect and being "mean" to people. How old is your son? I just feel how can my son not be aware of how he is treating us? He is a smart boy. But he is totally different from how he was before he got really sick so I am praying he too will no longer act this way in time. With regards to keeping track of things, I am so bad with that , do u have any suggestions as to how I can keep record of behaviors? My son had IVIG Aug 25 and 26th and my daughter had it a week later. Since the IVIG my daughter is so much worse. She has become so defiant and willful. SHe screams on top of her lungs and is relentless. Her eye blinking has gotten so much worse and it seems as if she has some sort of throat tick that she never had before, I am feeling sorry that I ever had her do it. My son was so much worse he needed it done, but, because of my daughter's high scores on the cunningham tests, the dr. felt we should go ahead with ivig for her as well before things get worse. Both my children are on Zithromax and after the ivig I got a script for diflucan because my sons finger nails were discolored and falling off, might have been due to the augmentin xr he was on previously. Again thank you for your compassion and responses.

So does this mean that you treated your children with an antibiotic when they first tested positive? Was the "lab test positive" a statement about running a agar culture or something else? The behavior you describe certainly matches the OCD symptoms on this forum. Have you tested kids 3 weeks after treatment to ensure they are clear? Were they clear in the summer (easiest time to clear kids typically)? Regards, Buster Hi Buster, he was on antibiotic after he tested positive on rapid culture. After a 10 day course on antibiotic we rechecked to make sure strep was gone. The rapid showed a negative culture but they also swabbed for the lab and that came back positive after finishing a 10 day course. Then he was given another antibiotic to treat as a carrier, we did not recheck after that.

Thank you T. Mom I am sorry for your difficult times as well, You mention "bad spell" as many mention episode or exacerbation. Is there anyone else that has chronic children. I don't get the bad and the good it seems like its all bad. Just wondering if anyone else has similar situation.

Thank you Kimballot for your sweet words although I do not feel like an amazing parent, in fact I feel like a failure. I have always loved children and thought my family and children would be so different. The way they behave at home or with me in general makes me feel as if I have not diciplined them or taught them right from wrong. There is no respect, manners empathy for one another. It is so sad. I have seen Dr. B in Ct. He is very compassionate. When I told him how angry I get at my son for the way he speaks to me he told me not to that he can't help it it is the illness. I am praying that it is just that and he will improve dramatically. He complains to me every night that he dosen't feel well and I tell him he will feel better soon. I feel so helpless. What more can I do, he is on antibiotic, we did IVIG. There is no point in seeing the pediatrician what can they do? My son, not daughter, does have an immunodeficiancy. This year alone he had strep, mycoplasma and mono a 7 year old that's insane. Anyway thank you for all your advice, your sweet. I did previously try the therapy route but no one wanted to listen to what I was dealing with. One psychologist met with me alone then with my son 2x alone for an evaluation. He told me he dosen't feel there is a need to continue to be seen but if a situation arises I should contact him. What the heck is that??? I had to pay 150.00 for that advice? Then another person I saw did not like to label kids. Ummm ok so how do u plan on helping. I just felt therapy was a waste of money that I didn't have.

Thank you Sadie, wow a hammer hmm..my son helps himself to tools but I don't think that idea would work with us. He is so oppositional doesn't listen to a thing I wish I could offer him an outlet to vent but unfortunately his anger is geared at me. I do get a "sorry mommy" and s few tears in his eyes later, i don't really feel he wants to act that way. He is a smart boy and I can not reason with him it is so frustrating.

Hi, I feel your pain I feel exactly how you do. I put my whole life into my kids, they brought me such joy and now with this devastating illness they bring me much sorrow. I too hate myself for feeling this way but we are only human. How much abuse can a person receive before feeling like this even if we rationally know it is not their fault. My children (twins 7 yr old) recently received IVIG from Dr. B's office. Louise the nurse there is great with the children. Feel free to email me if you would like to talk. Good luck, Tami

Hi All, I have been on here for some time just reading the vast amount of information that you all have to offer. I usually sit back on sidelines taking everything in but it is so hard dealing with all these issues that I thought I would ask for some help. So HELP!!! I have 7 year old boy/girl twins and they both have been diagnosed with PANDAS. As young children before the age of 2 they kept getting recurrent positive rapid strep cultures. I am one of those parents that is always at the pediatrician and I usually always would ask them to do a culture even if their throat wasn't red, and low and behold the doctor was shocked to find out it was positive. Anyway in 2008 my son all of a sudden began to show ocd behavior. After seeing therapist with no help I took him to a psychiatrist who put him on prozac and then switched to zoloft. The reason why was because he could not enjoy his life or childhood, he was so preoccupied with his ocd. But, before the meds I asked the Dr. about PANDAS because I felt he might have that. He was not knowledgeable about it but he had heard about it. Anyway, my son out of the blue began banging his head on hard objects, granite, bathroom shower door. Bang, bang bang..I was terrified so I took him to a neurologist ran eeg and mri everything was normal. He then began with some vocal noises so I'm thinking tourettes. But bingo he tells me his throat hurts has a positive on rapid strep. We rechecked 10 days later rapid strep negative but lab test positive. Eventually is head banging ceased. But what I'm dealing with now is a completely changed child from the sweet loving caring empathetic child I had. He is so nasty, oppositional, talks down to people, corrects adults if they don't say a word how he thinks it should be said. I have been reading of exacerbations. My son dosen't have exacerbations he is chronic. Every day my house is a battle field. He is constantly hitting my daughter and she is constantly whining, screaming and tattertaling which just makes him hit her again. He dosen't hit her hard for the most part. I am embarassed to go anywhere with them. We did IVIG recently and they are worse , I am praying and waiting for it to turn around. My daughter didn't have as obvious signs as my son so I wasn't so sure she had pandas until we got cunningham test back. She is a big whiner and cries loudly when she dosen't get her way, this may be normal for some kids but with her she will not stop. It is excessive!!! She also needs to urinate frequently I took her to urologist just thinking that she would outgrow this but now i realize it is her symptom of pandas. She got a head/neck tick which went away on zithromax. She was also doing a snapping movement with her fingers which seems to have gone away too. She blinks her eyes excessively and the seperation anxiety is extreme. OMG I can not leave the house without them screaming carrying on and running out the door after me. And, I have never left them with a sitter other than family. She will keep herself up so late because she's terrified I will leave and I have never given her a reason to think I would. This has been such a rough year it seems like every day is miserable and I am crying all the time. I hate how I feel towards them because I have loved and adored them. And, I know they are sick and can't help it but its so hard when they abuse me and I get angry and sad. I am just venting, we all have issues but so much of my sons is behavioral and aggression and odd how do u differentiate between pandas and bad behavior? where do we draw the line and if its pandas dosent it also become a learned behavior that they are used to? HELP