Younger sister getting PANS or just developmental phase

[Darby]

I'm am fairly certain my eldest daughter has PANS, has had it for many years, but by the time I found out about PANS she had started outgrowing some of the symptoms, so I never aggressively pursued a diagnosis (she is almost 10 now), but if she ever regresses to the way she was, I will definitely do so. My youngest daughter is 3 1/2 she has recently gone from being very independent and good natured to fussy, fearful and clingy. I don't want to overact and fly off the handle for a normal developmental stage, but if I can catch something early and prevent all the suffering that my eldest daughter had, then I want to do so. My eldest daughter presented with much more extreme symptoms, regression of academic skills, huge rages and meltdowns, night terrors, frequent urination, sensory sensitivity, extreme debilitating fears, irrational phobias, and separation anxiety, but before these extreme symptoms she also just had a phase where she had separation anxiety and sensory sensitivity. Is it possible that one's first antibody reaction is smaller, then if you produce the antibodies again the reaction gets stronger? My youngest daughter just has separation anxiety will not be in another part of the room from me, keeps worrying that I am going to leave her, and sleep disturbances---I think she keeps waking up to make sure I am there, and fussiness, but that could be from the sleep disturbance. She has always been a picky eater and fussy about the tags in her clothing so I'm not concerned about that. However she has been a happy and laid back child and now she seems worried and anxious. I know separation anxiety is a normal stage-- the reason it concerns me is it seemed to come out of nowhere and quickly. Are there any safe steps I could take as a precautions without a diagnosis?

 

Thank you so much,

Darby

Edited June 26, 2013 by Darby

[Missmom]

My son also had sepeeration anxiety (I could not even take a bath or shower without screaming) at about the same age. He also would wake many times in the night and scream for me. Those things came and went, it would last a few nights then get a little better, etc.. The pattern continued. He was about three to five years old. I had no ideas about pandas at that time so still not sure if it was pandas related or if it was purely age related behavior. My daughter however never has had any sleep related issues or anxiety.

[emorton]

Hi< I just read your post and wanted to share what I have learned. My daughter was very ill with PANDAS symptoms for a year before we got a diagnosis. Even though she had been so ill and was very gradually getting better I am so thankful to the people on this forum who encouraged me to seek a specialist and get help. My daughter is 14 now and symptom free. Her first exacerbation was at age 7 after a bout with strep throat. It was relatively mild and we contributed her anxiety to a developmental stage. The second exacerbation was at age 10 and it was marked and frightening. I wish we had known at age 7 and sought a specialist then and avoided the nightmare we went through for almost 3 years. If you want to private message me I can give you more details. Wishing you the best.

[3boysmom]

Possibly get a strep culture and check ASO and Anti DNase titers. Those tests are not that expensive. Also, has she happen to have recent vaccinations?

 

 

Oh, and yes, many of us have multiple PANDAS kids. Our oldest has stuggled the longest, suffered the most and is harder to put into remission. Next 2 boys caught early and treatment began quickly and they were relitivly easy and quick to put into remission ( because we knew what was going on). I often wish our pediatrician would have known about this for our older son as ALL the signs were there, but we were sent down a very long and wrong road)

Edited June 26, 2013 by 3boysmom

[peglem]

See if the anxiety eases w/ ibuprofen and like someone else said, get a strep test.

[pr40]

Why stop with strep test? myco, lyme, anything else you may suspect.

with our ds, we had it back and forth and thought always it was a phase. and, indeed, he would get out of it until he did not.

it's a tough call.

[3boysmom]

Why stop with strep test? myco, lyme, anything else you may suspect.

with our ds, we had it back and forth and thought always it was a phase. and, indeed, he would get out of it until he did not.

it's a tough call.

 

 

True......

Linda

Edited June 26, 2013 by 3boysmom