airial95 Posted January 5, 2012 Report Share Posted January 5, 2012 My daughter had her first appointment at Dr. Muprhy's office yesterday. It was kind of nice knowing what to expect since we're there every 3 months with my son! As we were going through her PANDAS history, etc. Dr. Brown (one of Dr. M's fellows) commented on some of the differences between my daughter - who has NO hyperactivity issues, and my son - who could be described as the Energizer Bunny on acid and it wouldn't be an insult! My daughters PANDAS symptoms tend to be far more emotional (a lot of crying, "you don't love me" anxiety, etc...), while my sons are more behavioral (acting out, physical aggression). The dr mentioned that are some differences she's noticed. I was curious - my PANDAS kids are one boy and one girl - has anyone else seen differences in presentations between the sexes? I'm wondering if I might be missing some symptoms in my daughters case because she's presented so differently from her brother. Link to comment Share on other sites More sharing options...
Dedee Posted January 5, 2012 Report Share Posted January 5, 2012 Actually my boys and girl were very different, but not in the way I would have expected. My boys were all anxiety and OCD. No defiance or rages. Never a discipline problem. Just your garden variety OCD, anxiety, & occasional tics. My daughter however was so different I didn't even recognize it for a while. We called her the "strong willed child" for years. Now I look back and realize these were "mini" episodes. We thought she went through the terrible two's for two years. Everyone kept saying we needed to be more firm or more consistant. She is the youngest so of course we thought we had spoiled her. I just couldn't understand because I felt like I had treated her the same as I did the boys but she ia such a challenge and very high maintenance. My boys are so sweet and good natured. They never give us any real problems. It finally hit me in the face full force after she received the flu mist and then the next day she started with "real" OCD symptoms. She couldn't do her homework because she thought the writing was so bad. She would erase every word over and over. She couldn't leave my side. Afraid of dirt, etc... Then I knew what I was dealing with and we immediately made an appointment for Dr. Murphy. When I explained the whole long story to Dr. M. she said that actually my daughter was the more common presentation with the rages, defiance, and so forth. Glad I didn't have to go through this with the boys. The rages and defiance are so hard, then add to it the emotional pieces that come from being a girl. Whew, she wears me out...... Dedee Link to comment Share on other sites More sharing options...
momcap Posted January 6, 2012 Report Share Posted January 6, 2012 I don't know about boy vs. girl since I have 3 boys. But I would say the symptoms are really different in all 3 of my boys. I thought only the 1st has PANDAS - high ASO, positive Cunninghams, RAGE!!!, total exorcist syndrome, and the "Energizer bunny on acid" description applies here too. His problems were so severe we never really worried about the other 2 boys. But then my quiet middle boy suddenly started bursting into tears, chewing his clothing, having tantrums over not getting things exactly right, etc. We chalked it all up to living in this extreme stress and having such a difficult older sibling. After a year of this my Mom said to me, "If you weren't so focused on [DS1]'s problems you would realize that [DS2] has major issues too." That's when the lights went on and I realized all 3 of my kids have it. They all present so very differently: DS1 - rage, mood disorder, SPD, severe anxiety (GAD), OCD, vocal tics, severe germaphobia, episodes of being non-functional, chronic strep, high ASOs DS2 - cries a lot, chews clothing, meltdowns, strep carrier, slightly elevated ASO DS3 - mild OCD, chews clothes, body pains, sky-high ASOs I know we're re-exposed to strep when the younger 2 suddenly start chewing the collars and cuffs of their shirts, and the oldest one goes berserk. I would consider all 3 to be extremely "strong-willed". I don't know if that's PANDAS or personality. And just to make everything so much more confusing, they all tested positive for lyme. I'm having trouble sorting out what is caused by what exactly. But somewhere in all that mess they are all struggling with chronic strep, all have exacerbations, and all have OCD issues. Ya, my house is a fun place to be. Link to comment Share on other sites More sharing options...
Tamistwins Posted January 6, 2012 Report Share Posted January 6, 2012 Arial, with my son it was so obvious to me that there was a problem. He had sensory tag and seam issues, water too hot or too cold, OCD just right and repeating things so I would repeat it to him, routines that need to get done, rages etc. I was so focused on his problems that I overlooked my daughters more subtle issues. For her it was a constant need to urinate and even whe. She really didn't need to it was the urge. The minute we would leave the house she would whine she needs to go, this being right after she went. I took her to a urologist not realizing it was also pandas. Her hands were raw from washing but that's because she was always in the bathroom. She lined up her dolls but I thought it was cute how she would read and play with them. I used to joke that she has OCD. Later on she developed with eye blinking then a neck tic and pulling at lashes. Today she has grown more bitter and oppositional but she didn't used to be like that when this all began. She used to always snap her fingers or try to anyway. She to me she's just trying to learn how but it became evident that she has this finger movement she makes. Everyone presents differently. Link to comment Share on other sites More sharing options...
airial95 Posted January 6, 2012 Author Report Share Posted January 6, 2012 It makes me feel so good to hear more than one of you mention that you "missed" symptoms in your other child because you were so focused on your more severe PANDAS kid. That was our situation too. If we had a "normal" son - we would've seen our daughters issues much earlier, and much more clearly. We too thoght it was attention getting behavior, stress from living in such a crazed environment with her brother. Momcap - my daughter presents much like your second son - except instead of chewing her clothes, it's picking at her fingernails. We haven't gotten any blood draws yet - got our first lab orders from Murphy's office Wednesday. (Our pediatrician hesitiated ordering any b/c he knows that Murphy's office orders more/different tests than he's used to, so he figured why poke her twice, he was certain it was PANDAS, she had the documented cultures to prove it. LOVE that man!!) Link to comment Share on other sites More sharing options...
socalmom Posted January 6, 2012 Report Share Posted January 6, 2012 My daughter had her first appointment at Dr. Muprhy's office yesterday. It was kind of nice knowing what to expect since we're there every 3 months with my son! As we were going through her PANDAS history, etc. Dr. Brown (one of Dr. M's fellows) commented on some of the differences between my daughter - who has NO hyperactivity issues, and my son - who could be described as the Energizer Bunny on acid and it wouldn't be an insult! My daughters PANDAS symptoms tend to be far more emotional (a lot of crying, "you don't love me" anxiety, etc...), while my sons are more behavioral (acting out, physical aggression). The dr mentioned that are some differences she's noticed. I was curious - my PANDAS kids are one boy and one girl - has anyone else seen differences in presentations between the sexes? I'm wondering if I might be missing some symptoms in my daughters case because she's presented so differently from her brother. My 5 year old son is the energizer bunny as you described and has a very quick to anger temper that seems like an over reaction related to what may have set him off. Link to comment Share on other sites More sharing options...
Mayzoo Posted January 6, 2012 Report Share Posted January 6, 2012 My daughter has said for the first time ever that no one can love her and it was a comment in passing at night ritual where I always say "I love you, Daddy loves you", etc... through the grandparents and aunts and uncles. We have done this since she was born. First she said Daddy could not love her, then it was everyone. Daddy about cried when he heard her say that. Couple that with the abrupt jerking away saying don't touch me to everyone, and her Daddy is beside himself . He understands she is going through something, but he still gets his feelings hurt. Link to comment Share on other sites More sharing options...
socalmom Posted January 6, 2012 Report Share Posted January 6, 2012 Mayzoo, I am so sorry for the pain you and your family must feel. My son says similar things to me and it's heart breaking to hear. I am so new to all this and it's still scary for me. I can't stand to see his little head jerk like it does. I can't even find ONE person to meet with me in person as there are NO support groups that I know of in Los Angeles CA.! Link to comment Share on other sites More sharing options...
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