ShaesMom

Lacy, I'm so sorry that you had to experience this. It clearly sounds like this Dr had only one thing on her mind--impressing her cronies. Obviously, she did nothing except make herself look like an unsympathic, uneducated moron. Can you report the experience to your medical licensing agency? I'm sorry that your dd had to witness the whole experience. Sadly, our kids are learning that the medical community is not all it is cracked up to be. We had a Ped. quit on us about three years ago when I insisted on knowing why my dd had a urinary tract infection for over 9 months. Everytime I would call with questions I would speak with a different nurse who would give me different info than the person I spoke to the day before. I was very frustrated and apparently they could hear it my voice. they told us the reason they were kicking us out was because I was rude. I could have understood this reason if I had used foul language with one of the employees or made a scene at the front desk, but none of these things happened. I was just tired of treating her without trying to find out why she was having this problem. Anyway, it actually turned out to be the best thing that could have happened. We spent five minutes with a Ped GI who told us she was plugged up. We spent the weekend cleaning her out and the UTI's went away. Take today to stew about it and then start again tomorrow with a clear head looking for the help your dd needs. Keep your faith and hope and you will find help.

Bronxmom2 thanks for sharing your thoughts. I so often feel quilty and alone in my anger towards my dd6. I know now that a lot of her rages and bad behaviors are not really her fault but are being caused by the inflammation. However, it certainly doesn't make it any easier when she is in the middle of an episode that has lasted on and off throughout the whole day. I feel so much quilt because sometimes no matter how much I love my dd, I feel like I don't really like her right now. This disease has put a huge strain on our entire family and our family dynamic. I only hope that we are able to get her IVIG and that she can finally become the child that God intended her to be. If not, I guess we have to learn to like this new person living with us.

We are working we our Allergy/immunologist Doctor on our dd's immune system testing. Some things we have tested are her IGM, IGA, IGG with the four subclasses. We are currently awaiting the bloodwork to see if her immune system is actually functioning correctly. they drew seven vials of blood for this so I couldn't begin to tell you what they were. She has also had a CBC, tested her thyroid, for Lyme's, ASO, Dnase B, Vitamin D, and Kidney function to name a few.

Great to hear your dd is doing so well. Keep us posted on her progress and subsequent illnesses.

DCMOM I don't know whether it is a physical or neurological manifestation. If it is an anxiety issue she is definitely not telling me her concerns. I've talked to her Ped about possible yeast issues since the peeing is a new issue since starting the proph. abx but she just completely dismisses the idea that she can have a yeast infection because of her age (to young for a yeast infection according to her). My daughter has a full blown dairy allergy so Kefir is out. I read something on this forum about I believe coconut kefir but because of her allergy and now the food issues from PANDAS she has severe temper tantrums every time we try to get her to eat something new. She also absolutely refuses to eat anything that doesn't taste good and from what I've read the Kefir does not taste good. I give her probiotic soy yogurt whenever I can but that is always a challenge as well. I've recently tried getting her to go on a regular schedule and all it has done is cause her more stress and temper tantrums. She is probably 80-85% recovered from her recent episode but I'm concerned about the remaining behaviors being her new baseline. Through the years various doctors have put her on daily Miralax for extended periods of time. Personally, I hate the stuff and so does she. You can find another forum on Yahoo developed by parents who believe that Miralax has poisoned their children. The main ingredient is the same as that used for antifreeze only it has been chemically altered. My dd also experienced some symptoms from the Miralax (short term memory loss, transculent skin, tummy aches). Other parents believe it caused autism and tics in their children. Which is very interesting if you think about it because a lot of the symptoms are similar to PANDAS. It has made me wonder on occasion if some of those kids don't actually have PANDAS with the constipation being the first symptom as was our case. I've thought about posting our experiences on Yahoo but haven't gotten around to it yet. Steriod burst was recommended by Dr K on June 10th. Our Ped has been on vacation so I haven't had a chance to speak with her about it yet. Also, we are still exploring the possiblity of immune system issues with her Allergy/Immunologist. We have an appt on Thursday so I will speak with him about the steriod burst as well. Their office here in town does IVIG so he is helping us determine if something else is going on so we can get insurance to pay for the IVIG. So far he has seemed open to doing the IVIG but that could change based on her latest blood work results (still waiting on those). No, we haven't been to see a psychologist yet.

The only meds my dd is on are prophylatic Azith (started 30 days ago), Ibuprofen & Benadryl. We have been dealing with the poop issues since 2006. I don't think I've had a break from wiping her since she was born. We have tried every reward known to mankind. They may work for about a week or two and then she is no longer interested in them. The peeing accidents have just started in the last two weeks. She had another one last night when she was with her Dad. They were at a park, she told him she needed to go, they walked about 100 yards to the bathroom but she had already had an accident. I've asked her several times why she goes #2 in her pants and recently she told me that her brain doesn't tell her when she needs to go. When asked about the #1 accidents she has said that she doesn't make it the bathroom in time.

I'm envious to hear that your kids at least use the bathroom! My daughter avoids it all costs.

Michele, The soiling in his pants is called encopresis. We have been dealing with it for three years along with the constant constipation. We had a phone consult with Dr K last week and said the poop issues are related to the PANDAS. Prior to knowing she had PANDAS, all the other specialists and doctors we had been to said she needed to be repotty trained. I have always found it hard to believe that a 7 year old would willing run around with stool in their pants. Now I guess we know that it relates to the PANDAS. I'm hoping IVIG does take care of this issue. Personally, I've cleaned enough poopy underwear to last me a lifetime.

Michele, I think we have all felt helpless at some point. Don't give up hope. Remember you are your childs best advocate. Keep with it and you will find a doctor who will help you. Make sure you document everything and take it with you to appointments. I even have copies of my dd's handwriting before and during her most recent PANDAS episode.

Chris, It is great to hear that your son is doing so well. We have had our phone consultation with Dr K and are now working with our allergy doctor here in town to see about the IVIG (they do it in their office). If that doesn't work out, we are definitely planning on heading to Chicago. Hope your summer goes well! Sam from Nebraska

I know frequent trips to the bathroom are normal with PANDAS but has anyone experienced the opposite? My dd6 has actually stopped using the toilet and I have found several pairs of urine soiled underpants in her dirty laundry. It also appears that she has been possibly wetting the bed at night. We have been to the Dr and she was negative for a UTI. She has experienced encopresis and constipation for the last three years but has never goofed when it comes to peeing. An thoughts?

Yes, Dr K's website is webpediatrics. We had a phone consultation with him yesterday and found him to be very friendly and informative.

Thanks TMom. By the way, I didn't get an answer to why she is responding so well to abx.

The MRI results show nothing which shouldn't surprise me since I have heard from others that their results were negative as well. However, I'm very disappointed which sounds horrible but I was hoping they would see the inflammation. The Rheum. is no longer on board with us and told us to follow up in a year and that if she has any more symptoms to call a psychatrist. My question for him is why is she responding so well to abx??? She doesn't need a psychatrist. We are scheduled for a phone consultation with Dr. K. on Wednesday so hopefully he will be on board with us.

Thanks for the info Alex. We are scheduled for a phone consult. next Wednesday with Dr. K. so your info is very timely for us and gives me a great idea of what to expect. I'm wondering if Dr. K gave you any timeline for when he would be available to do IVIG? Do you know if there is a long waiting list? Sam

We've been lucky so far. Our Ped Rheumy is a young guy (approx 30-35) who says that he saw a "true" Pandas case in Med school (he now works at the Children's Hospital). I didn't ask him to define "true" case but it sounded like they were able to detect inflammation on an MRI. Our new Ped is also a younger gal around the same age. According to her, they have a couple of other patients at their practice who may be Pandas kids. She of course wouldn't go into any more detail on these other cases. Living in Nebraska, I never expected to find anyone who would even consider Pandas as a dx.

My dd6 had an EKG and Echo done two weeks ago. They were ordered by the Ped Rheumy because he heard a heart murmur that was not there three weeks prior when we saw our regular doctor. Luckily for us this is why is prescribed the year long abx. The tests came back normal but I find it interesting that she has a new murmur and wonder if we wouldn't have been so quick to act if it might not have turned into something more serious. She also had blood work done to test her kidney function which was normal. While I'm not a doctor I am college educated and even I can figure out that RF, SC & Pandas are all related if not the same disease. My dd has not developed any major tics but if I recall correctly the major symptom of SC is uncontrollable movements--is that not what a tic is??? the following article is not an official medical paper but it defines SC as "choreic movements and emotional or behavioral disturbances." It goes on to list many of the symptoms our Pandas kids are experiencing. So why is the medical community so slow to come on board?? http://www.mdvu.org/library/disease/sydenhams/syd_sym.asp

Monarchcat I don't believe that my dd6 has "typical" PANDAS symptoms. Her last known strep infection was 11/07. Shortly after that she developed mild separation anxiety and mood changes. i took her to the dr in January with these symptoms and luckily she had a UTI so she was given abx. During the course of the year, I repeatedly brought her back to the dr for behavior/mood changes> Quick urine dips always showed some minor bacteria but the cultures would come back negative. Due to the quick dips she was always given an abx and I would notice an immediate improvement in her mood. So I started to see a pattern that if her behavior changed once she started on abx she always would improve for two to three months. In January of this year there was a drastic change in her behavior & symptoms. SEVERE separation anxiety, anxiety, clingy. emotional lability, raging, depression, fatigue, constant complaints of weird feeling in her throat, tummy aches etc. She was again given abx (Septra) but after the 10 day course, all of her symptoms came back. We did blood work and her ASO titers were elevated. She never tested positive for strep this year but I know for a fact that one of her classmates had strep the week before xmas break--her symptoms became full blown a few weeks after this. So, 18 months after her last known strep infection we are at a dx of PANDAS. Looking back, I now believe that she probably had a mild form of PANDAS starting after her strep infection in 11/07. All of the symptoms were there but mild. She also stopped riding her bike and scooter last summer because she complained that it hurt her legs. she still has chronic pain in her knees and legs. Now that we know about PANDAS and what the symptoms are -- we believe all of the pieces were there we just didn't know how to connect them. She is about 75% back to normal after being on prophalytic abx for a month. I wanted to share this with you because my husband and I were ready to pursue the mental health issues with a psych. but we believed in our hearts that something else was going on. Behavioral issues were are biggest clue that something was going on. Find another doctor, email Dr. K in chicago with your son's history, get a hold of Diana P. Find someone who will give you another round of abx (we've had good luck with azith) and give him a daily dose of ibuprofen. For your son's sake--don't throw in the towel yet on PANDAS. Sam

Hi Worried Dad, We are also thinking of having IVIG with Dr. K. for our dd6. I was wondering if you kept your son on abx after the 1st round and if so which one? We also have BCBS, do you by any chance know what dx Dr. K gave and what the codes were that were submitted to insurance? We have a local allergy office that does IVIG--have you checked the allergy offices in your area?? Sam

Jena, Will your insurance only cover one IVIG treatment? Do you have insurance through one of the major carriers (BCBS etc)? Sam

Hi Susan My 6 yr old dd is having some similar food issues. She still has about 1/2 dozen things she will eat but that is it. Oddly enough, nuts are one of those items. I will be glad when summer is here because she has completely stopped eating at school with the exception of about 6 pretzels a day. Several weeks ago I gave up on making her a healthy lunch and just started throwing in whatever I thought she would eat. It didn't help. I know she is hungry because when she gets home from school she will usually eat everything in your lunch box (except the remaining pretzels) and then eat a full dinner within the next two hours. She has told us she no longer wants to eat out--she only wants to eat at home. She also weighs 40lbs and can't afford to lose anymore. My dd also gets her mind set on something and then doesn't let it go until we have done it. If for some reason we can not get it done--she will start to have a tantrum. It doesn't matter that we have told her we would do it first thing tomorrow. Her frustration is so out of proportion. She never has real tears when this happens so we can always attribute it to the PANDAS. The carb cravings may be caused by an overload of yeast in her gut--this is what they feed off of. I know I haven't been much help, just wanted to share our similar experiences. Sam

Christie, That is fabulous news. I hope his recovery continues. Sam

My dd had eczema until she was completely diary free as well.

Just thought I'd add--when I was pregnant with her I was unable to eat dairy products because they always made me sick. After giving birth, I remained lactose intollerant and have since developed Fibromyalgia. I have always found it interesting that I now have immune issues since carrying her and believe that whatever "misfired" in her body during the pregnancy somehow screwed up my immune system as well as hers.

Don't know if this will help any since her food allergy existed first...Our dd has had an anaphylatic allergy to dairy since birth. She also has seasonal allergies--do not know to what specifically. She had her first strep infection around the age of 2. Approximately 6 months later we were at the allergist having her retested for allergies to soy, wheat, peanut, and corn. She was not allergic to any of these. She was also tested for celiac's at that time and two times since. Tests always come back negative. We took her to the allergist for the additional testing because we had noticed that she was no longer eating the soy products that she had lived on for the first 2 years of her life. She became extremely picky about what she would eat. Plus there may have been other changes in overall mood and health but I don't remember exactly. Looking back over her history with strep and the constant visits to the doctor this may have been when this whole PANDAS thing started. Within the next year and after another strep infection she had constant UTI's and constipation/encopresis. The UTI's have disappeared but the constipation/encopresis remains three years later. Sam