joyfulshout

Thank you, Amy, for your update. I am one of those new parents you were talking about wondering if my son really has PANDAS. Well, after reading some of these posts and going on Dr. K's website, I really felt we were on to something here - so many things sounded just like my son. My ds is 13 now and has been having OCD symptoms since he was 6. So we are not new to the OCD, just to the PANDAS. I had heard about it before, but disregarded it because I don't remember my son having strep throat. So, I didn't give it much thought. But, the wonderful parents who have posted here strongly recommended that I try looking into it further. I have written Dr. K and he responded this morning saying that it is VERY likely that my ds has PANDAS and recommended having his AntiDNAse B titer done. I didn't have much luck today in getting through to talk to a nurse about it at our pedatrician's office, but will try again Monday. I'm hoping they will do that for him. I still have so many questions though. Like, if he does test positive and it confirms his diagnosis, how do we get the doctors to prescribe an IVIG as Dr. K. recommended in his email? And even if it comes out negative, Dr. K. and other parents who've posted said PANDAS was still a very likely diagnosis. Wouldn't that be even harder to convince drs to treat it if it came back negative? I guess those are things we will have to deal with when we get to that point. I just need to focus on getting my ds tested first. Thanks for the encouraging update!

I just wanted to update what I've found since reading replies about looking into PANDAS. I just have to say that I am quite amazed at the specific symptoms that really match my sons behavior almost exactly! I stayed up almost all night reading about PANDAS as much as possible and then wrote an email to Dr. K. to see what I should do from here. He responded this morning and said it is very likely that he has PANDAS according to the symptoms I described. He did recommend having the AntiDNAse B titerdone and mentioned that even if it is negative it is still a very likely diagnosis based on the description of his symptoms. I called the pediatrician's office three times today only to get their answering service during lunch and then a recording twice where I left a message (Uggh!!) I'll have to try again Monday. I just have this sudden feeling of urgency to get him treatment quickly because, first of all, he's being tormented everyday by these fears and just feeling miserable, and secondly, he is already 13 and entered puberty and the success rate for treatment is lower for than pre-pubertal children. I hope we can get him help fast! I will just share some of the things that really hit home when I was reading on PANDAS: He began exhibiting very odd behaviors in 2nd grade: He began wetting himself in the middle of the day and I had to go to his school a few times to give him a change of clothes. He continued wetting himself for over a year. The doctors prescribed him medication for frequent urination and even did an ultrasound to rule out any physical problems with his bladder. He was afraid to swallow his saliva (would secretly spit it out in our carpet) He was afraid to eat his food (still is - but even worse now) He would be hypersensitive to sound, touch, and smell. We noticed a marked degression in his drawing. My husband and I thought he just stopped trying to draw well because his younger brother was catching up in his drawing skills. We thought our son just gave up on drawing (Before, he was considered the "class artist" in Kindergarten) He would think his clothes had germs in them and I would have to dress him while he'd scream/cry as if being tortured he received a "Math Whiz" award in 2nd grade; but now he is 2 years behind in math he had excellent early speech development before obvious OCD symptoms, he had a need for preciseness, symmetry in his coloring, and had a sharp eye for detail he has unrelenting, debilating anxiety he's become very defiant but acts as if he can't help it he's very insecure Has anyone had experience in treating an older child with PANDAS? It's just so odd to me how a strep infection could wreak havoc in your life for years and years. Do titers just check if he's had an infection in the past several weeks or months? Thanks to all who have advised me about the PANDAS. I would not have thought to look into it without your input! (((BIG hug!!!)))

Thank you for your replies. It's nice to hear that others will be praying for him. Dealing with our son's behavior seems so way over our heads that it seems like it will have to be the grace of God that will recover him from this! I have thought about PANDAS, but wasn't sure if that could be it since he's been this way for so long now. Does the strep stay in the body indefinitely until something is done about it medically? He's been on several antibiotics when he was younger because of multiple ear infections (he had to get tubes). Is PANDAS treated with these type of antibiotics? I just don't know a whole lot about it - I never thought of it as a real possibility because I've read how those who had it had an immediate change in their behavior. I don't remember anything like that with my son - but I guess you never really know. I would like to ask his pediatrician about it, but I have a feeling his doctors will just downplay it and not be receptive to what I say - I've experienced this in the past with other concerns I've had - it's almost like there's a communication barrier or they just don't want to bother to look into it. The same thing with with getting his titers checked...how would I go about asking for that done? Is this a common request that the drs would be willing to do? Is there a specific test I should request? I'm asking these questions because I've gotten a little hesitant in involving his pediatricians (and dentists) because they all seem to chuckle or look at me as if what I'm concerned about is ridiculous (e.g.: I brought my son in to the dr office when he was just week old because of these little jerky or spastic movements he was doing in response to sounds or people's voices - they politely smiled and chuckled, "oh, that's just his immature nervous system - that's nothing to worry about." Now, looking back, I wonder if that was a symptom of later problems. Or another time when he was a toddler, I asked them if they could check his blood for lead poisoning because we lived in an old apartment built when lead paint was used and he also was putting his mouth on the metallic mini-blinds, which I heard could also have lead in them - dr basically told me he had never heard about that and it shouldn't be anything to worry about.) I always seem to leave the dr office feeling really embarrassed for even asking. (At this point now, though, I don't care what they think - I just want to get my boy some help!) Concerning the pills I found in the laundry, I have brought that up the with his psychologist. She said to discuss that with the psychiatrist to see what he would suggest about taking the antipsychotic meds - and it may even involve inpatient care! I have also tried Inositol (there's a bottle still in our cabinet). I started using it with a vitamin & mineral supplement, EMPower Plus. It helps people with bipolar disorder, ADHD, depression, anxiety and other mental disorders. I started my son on it a few months ago because I heard it was helping my friend's father who gets very manic. I ordered the powder form to make smoothies with and my son was taking it 3 x a day. The people from the company, TrueHope, were the ones who suggested adding Inositol and Choline Bitartrate. Sometimes, he was ok with drinking it, but he had to make it himself and nobody could be in the kitchen while he made it (but I did watch him make it - what a long ordeal that was for him - everything had to be just right and it took him a long time to make each one!). But, he took it, which was very good, too because I needed him to get nourishment from the smoothies, too since he wasn't eating very much due to the OCD. Well, there were still struggles to get him to drink it sometimes (an issue with the cup, the bubbles of the shake, and on and on...) But, I noticed it making a difference after a few weeks - he was able to concentrate better and he even wrote an essay (a BIG deal for him). And this is what really floored me - he was even letting me make the shake myself and bring it to him! (of course, he would ask questions of reassurance like did I use a fresh water bottle and a new paper cup, etc - but he took it, without arguing and aggression - which was such a victory for us). So it seemed to be helping his mood and anxiety. But, we ran out of that first bottle (my husband was now in between jobs) and we couldn't afford another order until a couple weeks after we ran out. Well, I thought it would be better to get the capsule form instead this time (bad idea, I guess) because he knows how to take capsules well and even though we had a breakthrough a couple of times with the shakes, making them was still a source of OCD issues with the blender, the cups, the bananas and fruit that went in it, etc. and he also began to complain he was tired of the same taste and taking it 3 x every day. He started taking the pills, but was making his stomach hurt because he wasn't eating anything with them and was sometimes throwing them back up. I did make it a rule that we had to watch him take the pills, but he put up a fight with this many times. I would stand there and wait for him to take his pills and he would scream, "GET AWAY!! YOUR HURTING ME! (I was several feet away from him when he would say this)...I CAN'T DO THIS WHEN YOU WATCH ME!" Uggh! We would stand there in this big power struggle for at least 20 minutes or so - meanwhile my other younger kids are also needing my attention. Taking these pills was just a nightmare! He does this same thing when he eats - he does not want anyone to look at him or he will SCREAM! He sometimes cries hysterically complaining that we are hurting him by just LOOKING at him! Now, he isn't taking anything - even supplements I recently bought - it seems like such a waste to buy anything else for him...but I still don't want to give up on trying alternatives to meds...I'm constantly on the watch for anything out there that could help him. I'm sorry this is so long - but, these are things that I would not normally share with other people. I know many of you can probably relate in some way. Thanks for reading and for your prayers!

Hello, This is my first time posting. I have a 13 yo son who has been suffering from OCD since he was 6 and possibly 4yrs old (as I've looked back at his "odd" behaviors in pre-k). Lately, his obsessions have taken over his life - and our family life. He thinks he cannot eat anything that has already been opened by someone else (we have a family of 6!) He will not use our dishes because he thinks we are the ones who are fooled into thinking that they're really clean after going through the dishwashwer or being hand-washed. He screams and fits everyday and the less he eats, the worse his rages get. He hasn't been eating any meals I make - even if he loves the food. He will open every cabinet in the kitchen and stand in front of the open fridge just frustrated thinking there is nothing he can eat - and will let everyone know how angry he is because we've contaminated everything and hates us for it (he mainly blames this on his little 7 yr old sister -everyday he tells her that he hates her and wishes she didn't exist so that he wouldn't have this problem). His OCD is not just related to eating, but also fears contamination of the air (keeps his t-shirt collar up around his face to cover his mouth and nose), he doesn't sit on our couches, he has to have a window cracked when riding in the car or he will panic and scream, he places plastic bags on the car seats before sitting on them, and several other things he has to deal with everyday. He's just constantly tormented by OCD! I felt an urgent need to post because he has an appointment at the beginning of March to be put on antipsychotic meds. I have tried so many supplements and diets and have researched a lot about nutrition relating to brain function. But, all of this information does no good if my son is not willing to use it. I have lots of supplements and special food that just sit in our cabinets and fridge because he think they're contaminated and refuses to take them (believe me, we've tried everything to try and get him to take these). In addition to trying to help him naturally through diet, he has been seeing a psychologist, but he is not compliant with anything that we try with him. So, the psychologist strongly suggested putting him on medication. He had a psych eval done by another psychologist and he also strongly recommended antipsychotics because of his delusional thinking. Well, here we are now after trying vitamins and supplements - only to find those capsules later in his laundry or around his bedroom floor - and awaiting the "last resort" appointment for meds. I'm so scared about side effects and long-term health problems (this is if we actually get him to take them). But, I don't know what else to do. I'm thinking maybe these meds might help him think more rationally and then we can focus on diet and supplements later. Anyone have thoughts or advice about this? Thanks!