kimballot

Don't know anything about them.. but I LOVED your post!

I asked because traditional allergy tests test for IgE reactions and really do not pick up food sensitivities. They are a little better with inhalants (molds, pollens, etc), but it is not uncommon for our kids to NOT test positive on traditional allergy tests and still have food sensitivities or environmental sensitivities when tested using provocation/neutralization techniques, which are a little more open to debate. P/N technique test for IgG responses, and are more subjective. We have done both and I think P/N testing can be helpful but needs to be done by someone who is very experienced in interpreting the results. Try traditional allergy testing if it is covered by your insurance. Read the book "is this your child?" by Doris Rapp and it will explain the world of P/N testing, which is not accepted by most allergists and immunologists. Then consider testing by a DAN! doc or an environmental doctor for sensitivities.

sorry - did not notice this post last week. If you are looking for an article to bring, I think the most current review is http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf - which is good because it is written by doctors who have been advocates for PANDAS and a doctor who has been a critic of PANDAS - so it is probably less biased than some other works. Another very good article for explaining PANDAS (though a bit older) is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/pdf/1745-0179-4-13.pdf Glad to hear you have ABX for vacation!! Enjoy! Let us know how vacation and the doctor visit go!

I am wondering why you are suspecting allergies. Are there specific allergy symptoms, or are just trying to cover all bases? By specific allergy symptoms, I mean things like stuffy nose, rashes, red ears and cheeks, sudden changes in behavior after eating foods, coughing, etc.

Have you checked her for strep? (seriously)... frequent urination, irritable, and OCD... I'd check.

MomCap - I am so sorry. Suicide threats are the worst. I would suggest lots of testing for your son, but it sounds like he is simply surrounded with strep. You say your son is on prophylaxis AbX - he may need to go up to a treatment dose for a while. He may be fighting strep himself right now, and the prophylaxis may not be enough.

Our decline began 2 weeks after IVIG and lasted for 8 weeks before we saw relief. My son's case was severe as he had PANDAS symptoms for 14 years. He is doing much better now (16 weeks post IVIG), but is still not at baseline. Physically, though - he has never been healthier, and his PANDAS exacerbations have always been tied to ill health - so we are hoping that IVIG (he is preparing for his 3rd one now due to immune deficiency) will keep him healthy and he will continue to progress. The immunologist told me that one theory is that the post IVIG exacerbation occurs when the new antibodies attach to the bad autoantibodies to make an immune complex. That complex is a glob of antibody stuff that has to be removed from the body. The body cannot remove it all right away, so it deposits in organs and joints (usually kidneys an joints) until it can be removed. In the case of PANDAS, some people speculate that these complexes are being deposited in the brain, since the autoantibodies are located in the brain. Dr. Swedo talked about this a little in this video - though she did not talk about deposits in the brain http://www.autism.com/videoflv-legacy.asp?flv=sd08-46-nimh_swedo.flv&h=240&w=720&VID=84 Once I started to understand that I did push water and start giving charcoal and vitamin B in an effort to move those globs along and out of his system. I don't know if it really did anything, but my son seemed to do better around the time I did that, but we also changed his medications then so that may have been the thing.... or it may just have been time for him to improve. I am sorry you are going through this. I hope it does not last long for you. I have not heard anyone say that their child got worse and stayed worse with IVIG (I was just reassuring DH of that yesterday)... though some report many months before things get back to baseline or better.

My daughter is also very sensitive to taste. By the time she was 9 she was able to swallow small pills in a tablespoon of applesauce. I found it best to split pills rather than crush pills. Crushed pills change the taste of the applesauce. I purchased a pill splitter and cut the pills into halves or quarters - then put one piece in the middle of a tablespoon of applesauce and said "don't chew - just swallow". You just have to check with the pharmacist to make sure the pills can be spit (time-released pills usually cannot be split). Regarding the timing - If you switch to pills, they will probably tell you it is OK (and maybe even preferabel) to take the with food - check on that. Breakfast and and dinner might be good for antibiotics. Depending on what time your daugther gets up and eats, you should make this as close to 12 hours apart as you can (ex: 7 am breakfast/ 6 pm dinner). If you need to stay to a time when there is no food in her stomach, then do something like 7 am antibiotics/ 8 am breakfast/ 5 pm dinner/ 7 pm antibiotics /9pm bed and probiotics. I even give my son medicine before he gets out of bed in the morning - which gives him a little time before breakfast. Probiotics are best given at night before bed so they have lots of time to repopulate the gut before you hit it with antibiotics again. Now... if you decide to add in bentonite clay or activated charcoal then you are in for another schedule challenge because they really need to be 2 hours apart from other meds... but you could probably do those after lunch in the summer.

Thanks for letting us know! If you could - please post updates and let us know how your son does. I hope it is a speedier recovery than traditional with good results for your son!

Welcome to the forum! Your son is similar to my son in many ways. My son is now 14 but we started seeing PANDAS symptoms when he was a toddler after he had his adenoids out. He had chronic sinus infections for many years - until he had his tonsils out at age 7 - and he lived on antibiotics the entire time. His behavior was always unmanageable on low dose antibiotics but improved greatly on high dose. The strep pneumoniae that was in your son's nose is a common cause of sinus infections. It is not the same thing as the strep that PANDAS was named for - that is Group A Beta Hemolytic Strep (GABHS). Many doctors mistakenly think that kids cannot have PANDAS if they do not have a GABHS infection in their throat (strep throat) or if they do not have elevated antibodies to GABHS (ASO and DNASEb titers). Many of our children have neuropsychiatric symptoms with ANY infection - not just strep throat, and sinus infections are one common trigger for exacerbations in our kids. I would recommend you have a good ENT workup and check for sinus infections. I would also recommend a good immunology work up. At his age, you may not find any problems (they all have lousy immune systems at 2 1/2), but at least it will give you some baseline information that may become important in the future. Also, the immunologist and ENT may want to give your son a vaccination to raise his antibodies to fight strep pneumoniae. Prevnar is commonly used for children now (your son may have already had this), but some get the pneumovax. You should talk with your DAN doctor about this before having the vaccine. Best wishes - I look forward to reading your posts!

Yes.. this is an anxiety-provoking time! Once you get all the test results you will be able to start to chart a course for your child and I know I always feel better when I am being productive instead of just waiting! I agree with LLM that your course will likely not be a straight path to health for your child. Some families are fortunate to catch PANDAS early when there is "only" strep involved (though strep is certainly destructive itself). I wish you well as you make your way through!

Hoping things continue to improve for you!

I've heard of intracellular strep... but I've not heard of an intracellular tonsillectomy. Could you tell us more about this procedure? oops - OK - I found intracapsular tonsillectomy while googling. Still - this was the first time I've seen this. Here is an article that discusses some of the pros and cons... http://findarticles.com/p/articles/mi_m0BUM/is_8_83/ai_n6200960/

Amy - my DD16 (? mild PANDAS)had elevated TSH a few months ago, but T4 and T3 were in normal range. She had lots of thyroid symptoms and I thought it was autoimmune. She had her tonsils out and her overall health improved - then TSH was lower and near normal range. We test again this week. Peg - interesting info. about the menstrual cycle with you daughter. Thanks.

LOL- That was the first thing I thought when I saw the time on your post! Then I realized that I was SLEEPING at that time... which means things are either a bit better for us or I ran out of internet web sites to search for answers! Hoping you get some answers soon!

Lynn - so glad you all have some relief. I hope it continues!

Wilma - if you are asking if your child's doctor can order an igenex test for YOU without you being an established patient, the answer is probably no. Some doctors have gotten in trouble for evaluating and treating people who are not established patients. If someone did do this for another family on the forum, then that family should send you a PM. You should get your own doctor to sign the igenex slip, because igenex will only send the results to a doctor and the doctor will have to go over the results with you. So - whether you make an appointment and pay for an appointment to get the bloodwork or pay for an appointment to go over the bloodwork - (or both)... the doctor has to see you and establish you as a patient.

Dee Dee - I can only imagine how frustrating this is for you. I am assuming you are working with a PANDAS doc- correct? How does your insurance company diagnose PANDAS (since there is no official diagnosis for PANDAS). The Canadian Government requires the clinical diagnosis be made by an expert in PANDAS. (see http://www.bloodmed.com/contentimage/guidelines/2854.pdf). That is about the closest thing I have seen to a PANDAS diagnosis definition. Could you send the insurance company articles stating that a PANDAS exacerbation can be triggered by Mycoplamsa and that a large percentage of children DO NOT have elevated strep titers (such as this one: http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf or this one: http://jcn.sagepub.com/content/23/3/338.abstract or this one http://www.ncbi.nlm.nih.gov/pubmed/15301831)....

Oh my - you brought back memories. We played the SAME clifford story tape from kindergarten through 5th grade. Every night. Same tape. I had it memorized. It was the only way he could fall asleep without nightmares, and even with that it took 1 1/2 hours! We started using melatonin in 6th grade and it has helped a great deal.

Jill - I am sorry about this. It does sound scary and I can only imagine where your mind is going (probably in many directions at a mile a minute!). You might want to PM tpotter - she has dealt with highly elevated liver enzymes recently. Also - I am trying to remember if your daughter has lyme. I recall that doing something with white blood cell counts... Please keep us posted. I have been hearing so much about liver enzymes lately I feel like it is a foreshadowing as my son will have blood drawn tomorrow for liver funcitons. Best wishes to you and your DD -

Hi - Welcome to the forum. Please know you are not alone in having a child with PANDAS symptoms without elevated titers or strep culture. There are many reasons that this happens. Your child may have strep in some other part of her body and she may not produce enough antibodies for the ASO and DNASE B to rise. As others have mentioned, she may also have some other type of infection (PITAND)... Often mycoplamsa and lyme are underlying problems, but allergies and sinusitis can also trigger exacerbations. If you want to learn more - read the pinned threads at the top of the PANDAS forum. I would recommend getting an appointment with a PANDAS specialist who can help to guide your doctor. I wasted 6 years with a neurologist and a pediatrician who said they understood PANDAS and kept telling me my son did not have PANDAS because ONE ASO and DNASE B titer draw was not elevated (it was the only draw they ever ordered). I would give anything to go back and have my son receive proper treatment for that time period. You can contact the PANDAS organizations for lists of doctors in your area. Pandasresourcenetwork.org, Pandasnetwork.org, and Pandasfoundation.org can all help.

Tico - glad to hear from you. It sounds like your family is really on top of things and you have been getting good treatment. My son had steroids(I don't know if they were heavy doses) before and for a few days after his IVIG and he did very well - no nausea or flu-like symptoms. He did drink a TON of water though - I had him drink about 6 water bottles the day before, and about one water bottle every 60-90 minutes during IVIG and for 2 or 3 days after. He also took benadryl - you can ask your doctor if s/he recommends that. It is good that you've gotten treatment before and that you are getting it again soon. My son had some PANDAS symptoms return after his first IVIG because he needed treatment for many years and had never gotten it. He has had another IVIG since then and had no setbacks. It sounds like you and your family are getting treatment right away. Please let us know how it goes! Best wishes!!

I thought I'd post another one month update on DS14 who had his first IVIG in February, and had an exacerbation with major depression, defiance and rages beginning two weeks later. I just read over my 3 month update (http://www.latitudes.org/forums/index.php?showtopic=13604&st=0&p=112576&fromsearch=1entry112576) and realize how far we have come this month! Week 13- had difficulty getting up to go to school. Refused to do homework and I stopped pushing or asking. Rages were less frequent and shorter duration- usually involving something like throwing a remote control on the floor.... but were still present. I continued to see improvement that was first noted when we stopped singulare 2 weeks prior. Week 14 - DS started on an antibiotic protocol for lyme challenge. I had been told to expect an exacerbation of symptoms around day 3 if there was lyme. He did have the worst day of the entire month beginning at the end of day 3, but I don't know if that is the lyme medication or my anxiety that triggered it. The day ended with a phone call to police, who came out, calmed him down, and reinforced my authority. I feel like a total wimp calling them, but this is the safety plan we have established and the police officers are briefed by the juvenile unit before they come out, so they know there is a medical issue that triggers neuropsychiatric symptoms. I have to say it seems to work. That was the last phone call we made. (I don't want to jinx this - but I am hoping it is the last one ever. DS said his body felt like he had a cold, which I attributed to the lyme meds. Week 15- DS continued to show improved mood on doxy and flagyl. Teachers commented that he is no longer angry and the goofy kid they knew at the beginning of the school year is coming back. I don't know if it was the ABX or the supplements as I was being very regimented about supplements, and was including daily charcoal. I also added CoQ10 and B complex on the advice of the LLMD. DS had allergy flare up mid week- but that only lasted a few days. Week 16- DS says he feels better than ever. Doxy and Flagyl ended at the end of the week and DS asked if he could have them back (I am putting him back on zith until we get the results of the lyme tests - then will talk to all the docs about next meds). Says he has more energy than usual and also that he is losing weight (Weight gain started 2 years ago with undiagnosed sinus mucocele). He saw ENT and the doc was thrilled with DS sinus status since IVIG - no sinusitis in 16 weeks is a record for him!! The biggest problem now is that it is the end of the school year and he is completely lost in his classes. One counselor said being in exacerbation for 2 months and now trying to take final exams was like leaving in the middle of the movie to get popcorn and missing the most important part - then coming back at the end and trying to have a discussion about it! I am not pushing school and classes for now - He needs a summer break and needs to continue to heal. IVIG #3 is scheduled soon. He will see Dr. M this summer and we will see what she recommends for school - then we will meet with the school and establish a plan for next year. Thank you all, again, for all of your support and courage. I hope I can continue to post improvement!

Hang in there! I know it is like watching grass grow, but at two week she will just be starting to clear the bad antibodies. Hopefully you will not see it get "worse" before it gets better, but that can happen once the antibodies clear. I don't know if worsening of allergies has to do with the IVIG. Was she on antibiotics before IVIG? If she was on an antibiotic before IVIG and you took her off or changed them, it could be that she is developing a sinus infection, and the symptoms look like allergies - so you might want to just keep that in mind.... or it could also be coincidental due to allergens that are out now . Please keep posting and let us know how she does.

thank you - so interesting. Just realized DH was diagnosed with this a few years back.. now I have some investigating to do!