amrussell

I'm almost at the end of my rope and I'm thinking about accepting a TS, ADHD, and OCD diagnosis. But, something inside won't let me give up. Call it mommy's intuition or a gut feeling, but something here seems off. It's not that I am hopeful my ds7 has PANDAS, but I want to rule it out before I even begin to think about medication for my boy. But lately I'm feeling like if he indeed has PANDAS or PITAND wouldn't it be easier than this to get a diagnosis? Here is why I'm struggling, my ds7 was developed severe allergies at 3 months old. His pedi refused to test him saying that babies don't have allergies. I had him tested anyway, allergies to milk, soy, egg whites, wheat, and dog dander. He was already on soy formula, could be why he had eczema from head to toe, even on his little eyes. I KNEW something was very wrong. He had severe GERD, had to sleep in a swing, and was put on reglan and zantac. He was put on zyrtec for allergies as well. He battled chronic asthma, sinus infections, molluscum, impetigo, herpes, strep throats, fungal infections that caused him to loose his hair, croup, bronchitis, ear infections, and had ear tubes put in and adenoids removed. I remember at 4 years old, he had 12 ear infections in 3 months, which led to his ear tubes and adenoid surgery. As ds turned 6, his allergies calmed down quite a bit and we were able to take him off of his medication. He also showed no more signs of asthma, or bronchitis. He stopped getting sick. Now at 7 years, he woke up one day in May and had tics. First the blinking, then head jerking, now it's all vocal (sniffing and clearing his throat). His allergies are coming back with a vengence, eczema on his little eyes again. He also has a herpes outbreak that is struggling to clear even with alcyclovir. And his stomach issues are back as well, his belly is hard and destended. He's very gassy and spends hours going to the bathroom. Persistant diarrea and accidents as well. And all of the sudden he thinks he's fat and needs to loose weight. He's always been scared of the dark, but now he has bedtime rituals that take hours of preparation, always asking at least 50 times a night, "Are you going to check on me". He's scared his toys will come to life and kill us, or that I'll turn into a zombie. He is terrified to be alone in any room. He screams out when he can't find me, and follows me all over the house. He doesn't want to play outside because he says he loves me too much and will miss me. And his temper is pretty much off the charts when he gets frustrated for very small issues. He's obsessed with time and dates. His grades are stellar, he's even in the gifted program, but his handwriting is terrible, and he erases so much his paper is always black with smudges. He started having bathroom accidents, and has trouble sleeping. His behavior is off and on, I feel like I'm always walking on eggshells. I was able to get his pedi to run his strep titers and cbc which she said both came back normal. Although, she wouldn't order allergy testing, and she doesn't think an ENT visit would be helpful (I would if it's a sinus issue). She also wouldn't run a Lyme test even though we lived in Virginia and had a dog in the house who came home with ticks, frequently. She said maybe I should just accept TS and move on, that his self esteem is suffering and I should consider medication. My question is, if it's not a strep related illness, could it be PITAND? And if his CBC is normal, does that mean that he DOESN'T have PANDAS or PITAND? She says his immune system is fine. I'm confused. Can anyone help clarify this for me? If this is an autoimmune disorder shouldn't CBC show something? I think I need some sleep, sorry to ramble.

We just got back from seeing our local pedi, she did order the strep titers bloodwork on my ds7 (YAY!!) and did a rapid throat culture on my daughter (NEGATIVE) but didn't do much else. I gave her the information on PANDAS, and she said that she hates seeing me go down this path because most of the PANDAS protocol is 'snake oil' and costs a lot of money, only to be let down. All this as I pay a $150 out of pocket for one appointment. It leads me to think, she is not at all on my side. She then told me that testing for Lyme was out of the question, since I live in Houston. I told her, that for my ds7's first year of life we lived in Virgina with a dog who had ticks and a husband who took my son out in the woods and hunted REGULARLY. She poopooed the idea. I told her that I question myself everyday, all day in fact, asking myself "Is this really PANDAS or am I creating this all in my head?" and honestly, I know without a shadow of a doubt PANDAS is a possibility! I'm tired of feeling like I'm nuts. I'm starting to feel like Leonardo DiCaprio in Shutter Island. And yet again she handed me some medicine to treat my ds7 & dd6 symptoms and turns her head at the CAUSE!

I can't thank all of you enough! I'm actually so full of emotion right now. My ds7 has been struggling for months now with tics, OCD, severe tummy issues, eczema, and tantrum behavior. All sudden onset (8 months now), although I believe he's had PANDAS for quite sometime now. As a baby he was allergic to everything (dairy, soy, gluten, eggs, etc), had eczema from head to toe (he was always a greased aquaphor baby), constant sinus infections, severe asthma, chronic bronchitis, croup, strep infections, molluscum, herpes, impetigo, GERD, fungal infections that caused severe hair loss, just to mention a few (we lived in the drs office, and she never once suspected autoimmune problems). Now, all they want to do is diagnose him with TS and just put him on drugs. And I'm not taking that lightly, I will turn every stone to make sure my ds and dd have the proper dx. Mother's know, and I know something isn't right. My dd6 was diagnosed with autism at 2 years old. She presented with failure to thrive, GERD, allergies, strep infections, yeast infections (which the dr called normal, whaa??), constipation issues (which she was put on benefiber and rx laxatives for), just to name a few. Now she's presenting the same issues as my ds7 without the tics. She's terrified of bugs, cartoons, death, blood, tummy aches. Cries uncontrollably when she has to leave me. It's heartbreaking, and I must do something. Thanks to all of you who responded Still crying here, what an emotional ride this is. I'm so grateful for this forum. Angela

We're in Houston but I would travel anywhere in the state. I'm just trying to find a dr that doesn't think I'm completely nuts when I bring up PANDAS. So frustrating!

Can anyone out there recommend a dr in TX that either treats and/or diagnoses PANDAS? I'm going to my local pedi tomorrow with a handful of information on PANDAS, but I'm not very hopeful. She won't even test my children for gluten intolerance, which I KNOW they both have. I'm worried that my ds7 and dd6 both have PANDAS and it's getting worse everyday. My dd6 has been diagnosed with HFA but I know there is something else going on. I also think I'm the carrier, which makes this even more maddening. With our medical bills so high, traveling out of state is unfortunately not an option for us. I've looked on the previous threads and found some names of drs but no phone numbers or ways to contact them, any help would be appreciated.

Thanks to all of you for sharing your stories. I feel so alone in this, I'm so grateful for this forum. I miss the baby boy I used to hold in my arms. The things he says to me, hurt so badly. It's so hard to be his biggest supporter, and his punching bag at the same time. I feel like I'm going insane sometimes. I also feel guilty because although I do love my child dearly, I don't like who he has become. And all of this started 8 months ago, but I feel like it's been a lifetime. Hopefully this is one fight I won't lose. Cassi - I still haven't found a doctor closeby. I'm looking into driving to Plano or Louisiana. I'm working on getting him tested for food sensitivities since he had so many as a baby. I literally see him change when he eats soy or dairy. I've also been thinking about getting the bloodwork done by a lab service like, great plains, etc. Right now I'll take anything that will give me some answers. About the support group, I didn't know there was one around here. I'd love to go. Where can I get more info?

My son hasn't been diagnosed with PANDAS, but as a mom, I strongly feel that this is exactly what he has. Even my exhusband agrees that our 7 year old should be tested. That being said, I have yet to find a doctor in houston that will even begin testing our son. And our pedi simply hands us referrals for psychiatrists or neurologists that want to medicate our child. She's treated him from infancy and says that it's probably TS and possibly ADHD, although he has not been officially diagnosed with those either. It is my firm belief that you don't treat the symptoms, you treat the cause. But at this rate, we are getting nowhere fast. The real issue for me is that my ex and I share custody of my son, and my ex swears up and down that my son's symptoms, although evident with him, seem more severe when he is with me. I wasn't sure if this was just parental jabbing on his part, until I woke up this morning. I feel a bit under the weather today and my son's behavior was very irrational and aggitated. Needless to say, it was a terrible morning for us both! I always try to start off his day on a postive note, but it was impossible to get through to him. Could his symptoms become worse when he is with me because I am possibly a strep carrier? I hate to think I'm making my son's life miserable.