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Everything posted by dabel

  1. I am so sorry that you are going through this. I have been where you are as have many on this forum. My son was recently diagnosed with PANDAS after seven years. He is 12 1/2. He got to the point that it did not matter what was challenging his immune system, he would crash. It could be a virus, staph, whatever. He has been admitted to the psychiatric hospital a couple of times with no help. This can be a nightmare but there is hope! I noticed that you went somewhere in Michigan. Do you live there? Your son sounds a lot like mine. The rages, anxiety, school refusal, etc. My son missed 6 months of second grade, all of fifth grade and made it a whooping eight days of sixth grade so far this year. I took my son to see Dr.K in Chicago. He is one of a few in this country that really knows this disorder. My son is what would be considered a severe case. We had IVIG with Dr.K about a month ago and he is getting better!! Hang in there and keep fighting for your child - you can get him back!
  2. Faith, My son has what would be considered a severe case as far as PANDAS goes. He has never had strep throat that I know of. He had an itchy butt at 5 and that is when we found strep. It took another seven years of ###### before we finally got the PANDAS diagnosis. A couple of months ago I had his titers checked on a whim....ASO 400 and Dnase B 1590 (under 170 is normal). He did not have one symptom of strep at all! I guess what I am saying is that the throat gets a lot of attention because it is easy to check but you can have the same bug, opposite end and have problems. I also want to say that Aaron had IVIG with Dr.K Dec. 3rd and 4th and is steadily improving!!! Hang in there...you will get to the bottom of it....maybe literally! DeAnn
  3. Hi Vicki, I first heard of PANDAS when my son was inpatient a little over a year ago. The psychiatrist had never seen a kid like mine. He had a psychologist come in to do a psychological profile on my son. It was this psychologist that mentioned PANDAS. The psychiatrist ordered an ASO test and it came back at 400 (under 200 is normal). He felt it was interesting but inconclusive because it wasn't that high. He felt it warranted checking in the future if he had more trouble. I looked into PANDAS at the time and didn't think my kid had OCD - I was wrong! It is hard when they have intrusive thoughts that you can't see and they don't always verbalize I thought he would be washing his hands 100 times/day or something. Anyway, my son could not live here for about a year due do the danger to myself and our family. When we got him back this fall we heard and saw more homicidal stuff so on a whim I took him to get the titers checked out of desperation for a diagnosis. ASO was 400 again and Antidnase B was 1590! Went to Dr.K and finally have a dx and the help he has needed and did not recieve for 7 - 10 years! By the way the psychiatrist (after being the one that mentioned it in the first place) doesn't agree with the dx!
  4. My son is now 12. Although he has just recently been diagnosed, he has had this since the age of 5 for sure and we think more likely the age of two. He has horrible intrusive thoughts. He was hospitalized at the age of 8 for being suicidal and at age 11 for being homicidal. He wanted to kill me. This was not part of a rage which was what was very concerning. There was no basis for this at all. He has also had thoughts of killing his friends. I am told that these intrusive thoughts are one of the hardest parts of OCD. I can't imagine trying to deal with this. These poor kids. My child has not had any sexual bad thoughts as far as I know. As far as how long these bad periods can last it really seems to vary for people. In our case, a bad phase can last over a year at times. My son did have IVIG not quite 2 weeks ago and we are seeing much improvement! Thank God! Hopefully we can conquer this! I am sorry that you are having to deal with this. I hope you take comfort in knowing that you are not alone and there are a lot of people here that can relate to you and support you.
  5. Peglem, Here are the other test results. Thank you so much for your input on this. I was kind of thinking like you in that how do we know that other things don't raise those levels as well. Maybe this has been researched - like I said I am new to this world and am just learning. This thing with Bonnie's kids perplexes me. What are the chances of us both having PANDAS kids? Just seems crazy. 16yo 11yo anti - Lysoganglioside 640 320 anti tubulin 1000 500 anti dopamine 1 2000 2000 anti dopamine 2 4000 2000 Let me know if this sheds more light on this. DeAnn That list looks different before and after posting. The first number is the 16 yo and the second number for each is the 11 yo.
  6. Peglem, Here are the other test results. Thank you so much for your input on this. I was kind of thinking like you in that how do we know that other things don't raise those levels as well. Maybe this has been researched - like I said I am new to this world and am just learning. This thing with Bonnie's kids perplexes me. What are the chances of us both having PANDAS kids? Just seems crazy. 16yo 11yo anti - Lysoganglioside 640 320 anti tubulin 1000 500 anti dopamine 1 2000 2000 anti dopamine 2 4000 2000 Let me know if this sheds more light on this. DeAnn
  7. Kim, I will ask what the abnormality that was found is called. I do know that the doctor said it was rare and that they think it is associated with blood cancers. Did the person you know end up with leukemia too? Or is the IVIG to not get it? DeAnn
  8. My son was just diagnosed by Dr.K in October. We just did IVIG with him last week. I was very pleased with him. This doctor seems to truly care about the child and the family. He is fantastic with kids and takes the time to answer all of your questons etc. He seems to be very well informed on all that is going on in the PANDAS world. I don't know anything about the other doctors besides what I read here. I just thought I would tell you that we had a very good experience with Dr. K.
  9. Hi - My son has recently been diagnosed with PANDAS and we are less than a week out from IVIG. I am pretty new to the PANDAS world so I would like to ask you more experienced here for your opinion. When I heard about Dr. Cunningham's study I wanted to send my child's sample in to get these levels on him. We are still waiting for his Cam results. My best friend has two boys with issues. A 16 yo with Aspergers and an 11 yo with PDD. The 11 yo completed 3 yrs of chemo etc for leukemia in this last year. The 16 yo cycles - depression, suicidal thoughts, ADHD, brain fog, extreme irritability, etc He had issues as a little boy but I saw a big change in him at 5. The 11 yo is like high functioning autistic but cycles with symptoms. Both kids have had health issues for a long time. They battled one ear infection after another starting at age 3 months and both ended up with tubes at about one year. Croup was an issue etc. There have been documented strep infections also. I suggested that she send her kids in for the study too. I just thought it would be interesting to see. Well, she got the results and does not know what to think. The 16 yo Cam Kinase II is 186 and the 11 yo is 169. I know the numbers indicate PANDAS but she wants to know how much weight you put on these tests. She thinks, after looking into this disorder, that it is quite possible that her kids have it. She is not sure what to do as this is such a different direction than they have taken. These kids have had every kind of test done known to man! Adrenal function, chromosome, sleep analysis, etc. If they do have PANDAS these tests results may be interesting to all of us. Should she take these tests pretty seriously as in - yes both your kids have PANDAS and get to a GOOD doctor ASAP? She lives in NW Wisconsin. Are their any good doctors in the Twin Cities (Mpls/St Paul) area? She has talked about going down to see Dr K. This is a possibility but if there was another doctor closer - I couldn't find one listed on that thread. Thanks for your input on this - it will help my friend greatly!
  10. That is interesting! My son's Vitamin K levels were low when we checked his Aso etc. DeAnn
  11. My 12yo son just had IVIG treatment last Thursday and Friday with Dr.K. I feel sorry for those of you who are too far away to see him. He is absolutely amazing with the kids! He spent two days with us and took the time to answer every question (and I had a lot of them) to the best of his ability. What I like about him is when he doesn't know the answer he admits it. My son has had PANDAS for at least seven years but we think more likely ten. He has gone undiagnosed or was misdiagnosed and needless to say he and we have been to ###### and back and then back again! My son is the one who was scared to get the IVIG treatment because he was worried that it would change who he is. I am happy to report that after being on 875 mg of Augmentin twice a day for the last 5 - 6 weeks that black cloud was lifted enough for him to be on board and want help. The IVIG treatment went well. My son did have a reaction on Saturday. I called Dr.K on his cell phone at 9:30 at night and he said that Prednison should take care of it and it did. My question to you guys is should I now live in fear of him getting sick? His immune system was so out of whack that he would go downhill after a virus or anything that challenged his immune system. My youngest son was complaining tonight about not feeling well and I thought - OMG what if Aaron gets sick? Have any of you had a child get ill after IVIG? If so did they develop a problem? Now that we have had the liquid gold dripped into his veins I don't want anything to mess this up!
  12. My son just had IVIG last week with Dr.K. Both days he got real surly or edgy at about the same amount of time into the procedure. I think it was because of the Benedryl. I don't know what else you would use but thought I would mention this.
  13. OMG - This is something I have never thought of! We have to treat the pets? It makes since but I did not expect it! We have practically a zoo here. 1 - 45 lb dog, 1 - 110 lb dog, 2 cats, one rabbit, one snake, and a tank full of fish. My son is having IVIG done in about 1 1/2 weeks. We are scraping every penny together that we can to pay for it. Now - we have to treat the animals? Geez Is this a practicle joke or are you serious? How many of you have actually done this?
  14. Peglem - I like how you look at things. Your whole explanation of the set of symptoms etc really makes sense. I am sorry that your child is having such a hard time. It is so difficult. I thought I had finally found the answer for my son when he was finally diagnosed recently. PANDAS explains everything with him after MANY years of searching. I also thought that we could finally take care of this and give him back his childhood that has been ripped away from him by this thing called PANDAS. I know it is not the intention of other parents here to scare us newer guys but once you start reading and thinking about all of the info hear it is scary. Is there a cure? Will my child ever be okay? Is there a monster lurking within? Will it disappear for good? I still think that this is the proper diagnosis for my son but it is not as simple and straight forward as I thought it was a couple of weeks ago. I agree that this wave is going to change the world of psychiatric illness as we know it. Thank God! It is time that they start looking at the why and quite just throwing canned diagnosis out and multiple drugs w/o investigating the possible biological cause. Sorry to ramble but I am terrified!!!
  15. Your son sounds like mine. He is also 12 and has rages that I am not even capable of describing. I am surprised that you are still able to restrain your son because I can't. He has many other symptoms as well. It is VERY dangerous for all involved! My son's psychiatrist told me a year ago when he was inpatient for being homicidal that he had never had a child like mine and thought that this could be the beginning of schizophrenia! Thank God I kept searching! They wanted to put my 11 yr old child on lithium. I politely declined and kept digging for the root of the problem. I am so glad that all of the parents on this forum have continued to search for the cause not just treat the symptoms. I was told that my child would not outgrow this because of the length of time he has had it, the severity, and his stage of puberty. It was explained to me that if it was not treated quickly and he went further into puberty (he hit puberty quite early) that this would be hard wired in his brain and he would be stuck with it. My son is scheduled for IVIG in a couple of weeks. I pray that this is the answer but I'm scared that it could come back too. Is your son showing any signs of healing? DeAnn
  16. Hey Judy! It is soooo nice once they can swallow pills! We practiced with tic tacs as you mentioned. I would break them at first. One trick I learned was to have him drink the liquid to get it down with through a straw. The straw made all the difference here. Have him throw the tic tac to the back of his mouth and then immediately start drinking from the straw. Not just a sip or two but a few good swallows. All of a sudden they will be amazed when the tic tac is down the hatch! Hope this helps! I'll talk to you soon - Hang in there! DeAnn
  17. My 12 yo son had two of them. One short one in the office setting and one 48 hour one. He was not doing well at the time at all and they both came back normal. My 10 yo who is not diagnosed with PANDAS yet but had quite the episode at 3 - lost his speech, total change in personality, aggression, headaches, etc. Other PANDA mom's have told me that it sure sounds like PANDAS. I am having him checked too. Anyway, he does have evidence of bilateral brain damage - this showed in his speech and his motor skills. DeAnn
  18. Sorry I am new to this whole forum thing. I suppose I should clarify. I mean his neck hurts and it causes headaches, etc. He does not have tics though. DeAnn
  19. This may sound silly but I am wondering if any of your kids have bad necks? My son's neck is horrible at times. We have even taken him for an MRI just to make sure there wasn't anything major wrong. There wasn't but it sure bothers him. We take him to the chiropractor etc. We have noticed in the past that there seemed to be a correlation with his neck and behavior. This was before we knew anything about PANDAS. This last week my mom took him to the chiropractor and told him that my son has PANDAS. He said he was not familiar with it but guaranteed my mother that it has something to do with brain inflamation based on what he sees. What the heck? The top two vertebrae are usually the culprit. I know one other mother that I spoke to said her son has a bad neck too. Just checking to see if others see this also. DeAnn
  20. Faith, Was the documented one in his throat? Does he have high titers that you can not explain? If I remember right it was just a cotton swab that they used right in the office and then they had the results in a few days. I know it was not a stool sample. He then took a round of abx. The itch went away then after a week it was back. He was given another round of abx and on his recheck was given his 5 year vaccinations. That's all she wrote - he crashed! I don't know if he has had strep there again. I am new to the PANDAS world and never thought to have it tested until now. DeAnn
  21. DeAnn how did you come to find it was strep? how do you look for strep other than in throat? Thanks Faith Faith, The doctor actually took a swab from down there to culture. I don't know if it is unusual to have strep in your rectum but I see all of these posts and they are almost always talking about the throat. We have never had strep throat so I think it is important for parents to check the other end too! Then there are the ones like mine who at times will have issues with absolutely no signs of infection at all. I wish all this could be more cut and dry. It would make life easier on all involved! DeAnn
  22. Stephanie, I agree with with Dawn! My son is now twelve and recently diagnosed with PANDAS. His behavior at two was similar to what you are describing. His tantrums were WAY beyond a normal two year old!! I would certainly look into it. One thing I would like to add is that my son has NEVER had strep throat. The only documented strep infection he has had was in his rectum at age five. So...I would think about checking the other end if the throat swab is negative. He has had high titers w/o any signs of infection. You are lucky to know what you know so you can help him so early. I wish I would have known then! Hang in there! DeAnn
  23. Please be careful not to just look for strep throat. My son has NEVER had a case of strep throat. When he was 5 he was scratching his butt like your son. I thought he might have had pin worms but it was strep. He developed big time problems. He is now 12 and has just recently been diagnosed with PANDAS. He has been very bad on and off but has never had another confirmed case of strep. His titers have been elevated with not signs of an infection. He reacts to anything that challenges his immune system now. It can be a staph infection, flu, cold, or anything. I am so sorry that MJ has a problem. Be strong and educate yourself. There is help and you are on the right track! DeAnn
  24. I asked Dr.K this same question. He told me not to do it. He said that the risk was too high and it could cause a problem for my son. I do not know if he feels this way in general but he did for my child. As it turns out we all got it about a week and a half ago. Yuck!! DeAnn Got the flu not the shot. DeAnn
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