ShaesMom

Kathy, You say he WAS on a strict diet and then he started eating things that you hadn't let him eat in the past. First thing you should do is look at the recent diet changes. He is eating more of the big allergens-wheat, dairy, peanut?? Try going back to your original more strict diet and see if after three days the diarrhea goes away. If so, you are likely looking at food allergy or intolerance. An easy way to test this is go back to the more lax diet after a week or two of being diarrhea free and see what happens. It is also possible that he picked up some sort of virus that is causing the diarrhea and tics.

Hey Susan, Shae is going through something similar right now. Her fear of bugs seems to kick in around bed time and causes her to have nightmares. I think she is having dreams that they are crawling all over her because she has told me she has to kick her covers off during one of these dreams. She also has an exagerrated fear of spiders. I've had to pull the car over twice because a spider the size of an ant was in the backseat. Sam

sjh, Sorry to hear you are going thru this. There are many people here who understand exactly what you are experiencing so know you are not alone. I would suggest you take the time to read through some of the old posts. You will find a lot of good info. the rash on her chest automatically makes me think of scarlet fever. Many kids have a negative rapid test strep test and ASO titers but do indeed have the infection. Was it sent off for culture? If it is Pandas, you will likely notice a big improvement over the first 24 hours on Augmentin. I personally don't have any experience with it but many parents have said that their kids symptoms' have actually gotten worse when put on OCD/anxiety meds. Many parents have said they see an improvement with a daily dose of Ibuprofen, some kids respond better only to the dye free brand. this is one of the things I do for my dd7. If you haven't already, start keeping a journal, it can be very crude. Include her symptoms and behaviors on any given day and possible triggers. Rate her anxiety on a scale of 1-10 on a daily basis. Ask daycare providers or teachers to do this as well. Also include meds that have been given. Keep copies of her handwriting before an episode and after you believe she starts one. Make a list of all the symptoms she has had in the last year. Make sure you included any improvements you see on abx. Send a copy of all this info to every new doctor you see along with a letter stating why you are coming and what you expect out of the appt (this saves time and gives them a chance to research Pandas if they have never heard of it.). Also, get a copy of all lab results to keep and start a three ring binder with all her medical records. Some docs charge for these-some don't. Once you get these, read them all. Start looking for red flags or a pattern that someone may have missed. In my dd's records, I have found that about every time I've taken her in I told them that one of her symptoms was a "change in behavior" That's a big one with Pandas so I'm really glad I always mentioned it. Go to Dr. K's website, webpediatrics, and consider contacting him after you have complied all your info. We have had good luck here in nebraska with our Ped, GI, and now we have a Allergist/Immunologist on board as well. With the exception of the Allergy doc, they are all younger--probably graduated within the last ten years. Welcome to this wonderful journey called PANDAS! Sam

Lisa, That's great to hear. Hope he stays healthy and tic free! Sam

Amy, Our dd7 has Pandas and was also just dx'd with a primary immune deficiency. She had her first strep infection around 18 months and several every year since. She also has a long history of UTI's and chronic constipation. If your daughter has a history of often getting sick, ear infection, sinus infections, URI's, you may want to talk with your doctor about running some addt'l tests on her immune system to make sure it is working correctly. We did the following addt'l blood work on our daughter: IGG & IGG subclasses IGA IGM Pneumococccal Titers Our daughter had normal results on everything except the Pneumococcal Titers which she failed big time. She has now been dx'd with an immune deficiency called Specific Antibody Deficiency with Normal Immunoglobins. Her Immunologist has just submitted a request to insurance based on this dx for IVIG. You can go to website www.jmfworld.com and click on the link to find a professional Immunologist in your area who works with immune deficiencies. If you have any questions, you can private email me. Sam

Susan, Check out the website www.jmfworld.com It is a site for Immune Deficiencies and has a link on the left hand side for finding an expert Immunologist in your area. Sam

Sam, our gluten free experience has been amazing. It was hard at first but now it's second nature and we all feel better for it! It is true, low IgA does mess with the results. My dd had a low normal IgA result and I've always wondered if it was low enough to give us a false negative. Even without a low IgA, celiac tests are very commonly false negative especially in children. Susan Are you the same Susan I sent a personal email to yesterday? I was dx with fibromyalgia a year ago and I have read that wheat & sugar are big contributors to my symptoms. I have really tried to cut back on bread the last few weeks but it's not easy. I have tried replacing it with lots of fruit and veges but I'm still hungry. Maybe it has something to do with all the stress from everything we are going through with Shae. I take a lot of things on faith and for some reason I have never been able to shake the thought that she has problem with gluten. I just need to act on it. you may have to share your tips with me someday. Sam

CHAP, I don't have much experience with the Tics, my dd7 never had them. But, we have definitely had the struggle with getting her to the meds. We have spent over two hours before on many occasions, alternating parents in an effort to keep our stress level down, just to get her to take a teaspoon of medicine. We have even tried forcing it down her before. Of course, none it works. We even have literally thrown away her Nintendo DS before. LOL I can laugh about it today but I may be facing the same defiance tomorrow. Anyway, I believe it is all part of the PANDAS. She is much better about taking her meds now that her symptoms are greatly reduced and somewhat under control. We still have several dramas a day although they are much shorted in length. I always remind her afterwards that her behavior is caused by the PANDAS and it is not her making the bad behavior choices. Give the meds time and you will see an improvement. sam

My dd7 was born with an anaphylatic allergy to dairy. She has been tested for celiac's three times. The first time at age 2 she came back positive on her Glidian Igg. the GI doc told us that it was not enough for a dx of Celiac and didn't recommend further testing. At the time we were stupid and just took her advice. Now I've been reading that this may mean she has an intolerance to gluten even though she does not have full blown celiacs. We had her tested last winter and again this winter. Both times her Glidian Igg came back normal. So, I'm now more confused than ever. I'm still seriously thinking about removing all gluten from her diet but because she has had food avoidance issues with her Pandas, I'm hesitate to restrict her diet even further right now. Sam

My dd7 celebrated her birthday at the pool with her friends on a Saturday night and the following Mon, Tues, & Wed she had an increase in anxiety, raging, emotional lability and all of her other Pandas symtoms. Tics have not been one of her symptoms so we did not see any of those. thursday morning she woke and was feeling "normal"

Buster, Interesting! Her CD8% was 18 with 18-35 being the normal range. Her CD3 & CD4 were above the normal range. Our immuno took one look at these results, said her immune system wasn't working properly and that we should be able to get insurance to approve IVIG with no problems. the nurse whom I spoke with at his office told me that the most common immune problems they see are due to the Pneumococcal Titers. Sam

I think he was just open minded about running the addt'l tests. Her Ped ran the tests for Igg, Igg subclasses, Igm & Iga at my request. I then took those results, which were all normal, with us when our dd had an appt with the allergist/immuno doc for her food allergy. I also gave him some info on Pandas and a short history of all her illnesses since she was two. During the course of our conversation, I told him that she seems to be sick more often than not and that she seems to get sick easily from a very small infection. She has had chronic strep, bladder infections and constipation since age 2. He seemed intrigued by the Pandas and was willing to do the addt'l blood work. I'm glad I brought it up at the appt and didn't just leave it alone.

That should be happy face not a grumpy one!!! LOL

Our immunologist ran a blood test called Pneumococcal Titers-14 strain. The lab results came back with the name Streptococcal Pneumonia Igg and a breakdown of the 14 different serotypes. Our dd came back with a normal result on only 2 of these. the remaining 12 were below the normal range. Yes, these refer to how she responds to strep and I believe other infections as well. He ran another test called T & B Cell Quantitation by Flow Cytometry. This came back showing a high % of CD3 T Cells and CD4 Helper Cells. Unfortunately, I don't know exactly what all the medical terms mean yet. But I do know that he felt it would be enough to get IVIG approved through insurance. In the past weeks we have tested her Igg, Igg subclasses, Iga & Igm. All of these results came back normal. OUr immuno told us that even though those numbers were within the normal range it didn't mean that her immune system was actually working properly. The above tests confirmed exactly that. He gave us a great analogy: If my daughter's immune system is the dog and the various virus' are the thief and her body is the house, when the thief enters the house the dogs wags his tail at the thief rather than attacking it. With her Pandas, when the dog sees the thief, instead of biting the thief he bites himself. Kind of corny but it was a great way to explain it my kids. So, in addition to Pandas, she has Common Variable Immune Deficiency or a Primary immunodeficiency Disease. She may be looking at IVIG every three to fours rather than a one time treatment for the Pandas. Not really the news we wanted because she is likely looking at a lifetime of illnesses and complications. Anyway, this increases our chances of getting insurance to approve IVIG which is a common treatment for CVID. We have another appt on the 13th and I'm hoping to get some more answers on what exactly this all means. I wanted to share this with everyone in the hope that it helps someone else find some answers for their children.

My dd7 was 18 months old when she had her first strep infection. The rapid test came back positive.

It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger.

Many of our kids have had negative rapid strep tests. Have your doc send the test off for a 72 hour culture. Also, strep can live in other parts of the body (ie: skin or nose) so a negative throat culture doesn't necessarily mean your son doesn't have strep. Ask your doc to also do the following blood work: ASO titer and Anti Dnase B. These would confirm a recent strep infection if they are elevated. Again though, some kids do not have elevated ASO titers eventhough they do have Pandas. A Sedimentation (another blood test) rate would indicate inflammation. Kids with Pandas have periods of waxing and waning. Symtoms disappear only to reappear next time they are sick. Lots of parents have had good luck with Azith, some Omnicef, and others augmentin. The majority of our kids are on prophylactic abx (long term daily use). If you have a doctor who has heard of Pandas and believes it exists--you are miles ahead of a lot of people on this forum. Keep your faith and God will lead you in the right direction.

Michele, I meant in no way to imply that IVIG is dangerous or risky overall but I do know that some people are more prone to allergic reactions because of other issues going on within their bodies (ie. a certain immoglobulin deficiency). IVIG is a very common procedure. Some individuals with specific immune deficiencies receive IVIG monthly. It is also used to treat MS and AIDS patients in addition to many other immune disorders and diseases. If you have never googled it you should give it a try. Our local allergy office does IVIG in their office (we live a smaller community in Nebraska 250,000) and also our hospital. Have you met with an Immunologist in your area regarding your daughter's low IGG and IGA levels? This may make the process of getting IVIG approved by insurance a whole lot easier. There is an immunodeficiency disorder called Selective Iga Deficiency and another called Common Variable Immune Deficiency for those with low Igg levels. Check out the website www.primaryimmune.org and click on publications. Look for a purple and blue publication called "Patient & Family Handbook" Read chapters 1, 2, 4 & 18. We were given this publication last week by our Immuno to read. We just found out through some addt'l bloodwork that our dd7 does have an immune deficiency and that her B lympocytes do not work properly. This is good news for getting IVIG approved by insurance but means we are likely looking at a long term issue rather than an one time fix with IVIG for the Pandas. If you haven't already seen an Immuno--make an appt and further explore her immune system. Sam

[. My daughter has low IgG and low IgA, so does that mean she is not a candidate for IVIG? Or is there a way to increase IgA? IMO--You need to speak with a very informed medical doc before you do IVIG because from what I've read the low levels of antibodies (unfortunately, I don't remember exactly which antibody it is) increases the risk of an anaphylatic allergic reaction.

Thanks Buster & MomMD for your replies. So, to put it in more layman terms, her study is proving that these kids do have PANDAS and not straightforward OCD & Tourettes etc. It is not however, telling us if there is something else going on within their immune systems that may have caused or helped contribute to the PANDAS (correct??).

What exactly do these results from the Cunningham lab tell you guys? I understand that helps you diagnose whether or not they have Pandas but is the bloodwork testing there immune systems or something else? Do you just get confirmation of Pandas or do you now know something else is going on inside there little bodies that made them more susceptible to the disease??

Michele, Have you made an appt to see a Ped GI doc about his bowel problems? Has your current doc done any testing on his stool to see if he has an infection in his bowels? My dd6 also has encopresis but it is caused by her constipation. I remember you have mentioned that he wipes his stool on everything--we have never had this problem with her. Our GI doc has told us it was behavioral and she would just need to relearn her bathroom habits. Dr K said it is caused by the PANDAS. We have noticed lthat her bathroom habits also have periods of waxing and waning so we're going with the relationship to the PANDAS.

T. Mom--Thanks for info. We'll definitely have to try these as well.

Our dd6 never presented with any movement symptoms. Major symptoms included leg & knee pain (which has remained), moody, irritable, severe anxiety and fatigue. We compared her handwriting prior to her most recent strep exposure to her handwriting during the worst episode and saw a big decline in her ability. If we had not compared actual samples, I think we would have missed the decline in ability.

[Any advice, things to look for, etc. when starting this protocol? Should I be worried about cutting back in 6 weeks? We take Caprylic Acid and probiotics for yeast issues. My kids won't drink Kefir. DD7 is allergic to dairy but I'm thinking of bringing in yogurt. Just worried about all the yeast and gut issues. Susan Susan, As the parent of a dd6 who is also allergic to dairy--don't add it to her diet. My dd gets tummy issues and mood issues when dairy is ingested. If this happens to your dd how will you be able to tell if it is the PANDAS or a reaction to dairy. Also, dairy makes her feel crummy. I'm guessing your dd already feels crummy most of the time and you don't want to make her feel worse. I have found organic Soyogurt with Probiotics by a company called Wildwood. They carry it at my local grocery store but you can probably find it a health food store. I make a shake with it for her with strawberries and soy milk. Sam