Psych Ward

[pandakid11]

Doctor thought it would break the cycle of being attached to parents. I cannot do it, nor would I. He is suffering and needs his parents. He is not angry or raging, just anxious and has multiple sensory issues plus cannot walk straight. I thought that was cold. Am I wrong? I have had it with doctors. They don't care about this and think it is all psychological.

 

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[beeskneesmommy]

Good for you. I cannot imagine a more difficult place for a kiddo with separation anxiety and other PANDAS issues. It is cold and demonstartes how clueless the doc is. makes me very, very sad and angry too. Hang in there - you are a good mom!

[dcmom]

omg- how ridiculous.

 

Therapy- yes, psych ward- out of the question.

 

Have you considered outpatient, intensive, therapy at USF? We loved the program.

[pandakid11]

I am the Dad. I thought it was really cold. Am I wrong? I am switching doctors for him. There has been zero compassion during this entire ordeal and we have seen about 10 doctors. They blow it off as conversion disorder or being a troublemaker. He was an honor roll student with perfect attendance prior to this horrific illness. They blow off the ASO as being worthless even though it is 3x abnormal.

 

 

Good for you. I cannot imagine a more difficult place for a kiddo with separation anxiety and other PANDAS issues. It is cold and demonstartes how clueless the doc is. makes me very, very sad and angry too. Hang in there - you are a good mom!

[beeskneesmommy]

Sorry. Great dad! We went thru 10, yes 10 pediatricians before getting any help 3.5 years ago. Most of the agreed that DS had PANDAS, but they just seemed to think that giving 10 days of abx for the Strep+ tests would "make it go away". Of course, it got much worse...and now much better. Have you tried seeing any known PANDAS specialists? We are in NC but travel to Bethesda for Latimer, Philly for Elia and CT for Boubopulis. We also know a doc in SC, who is currently getting set up in a new practice and will be taking on PANDAS kiddos. If you want more detail, please feel free to PM me.

[MomWithOCDSon]

I am the Dad. I thought it was really cold. Am I wrong? I am switching doctors for him. There has been zero compassion during this entire ordeal and we have seen about 10 doctors. They blow it off as conversion disorder or being a troublemaker. He was an honor roll student with perfect attendance prior to this horrific illness. They blow off the ASO as being worthless even though it is 3x abnormal.

 

 

 

 

Get a second ASO; NIMH (Swedo) considers the direction of the titers -- rather than a single freestanding measure -- as indicative of trouble and of the condition. If the number continues to trend up, or fails to fall on the heels of treatment, then that's indicative of an auto-immune imbalance.

 

You need a PANDAS doc. The "not walking straight," sensory issues and unabating anxiety are all signs of infection and autoimmune response to the infection; my DS did these same things in the depths of his illness (he actually dragged a leg behind him, which I thought of as a mere "quirk" and not a physical manifestation of the illness until I came here and "got schooled"!).

 

No psych ward, but I do agree with dcmom regarding the positives of therapy. Though it also sounds to me as though your DS is still in the midst of a pretty dramatic episode of illness and needs medical intervention, pronto!

[pandakid11]

He has had 4 over the course of a year and all are 3x abnormal. There are no signs of infection, just high antibodies, but why are they high? Frustrating. He is a great kid. I feel so sorry for him.

 

 

I am the Dad. I thought it was really cold. Am I wrong? I am switching doctors for him. There has been zero compassion during this entire ordeal and we have seen about 10 doctors. They blow it off as conversion disorder or being a troublemaker. He was an honor roll student with perfect attendance prior to this horrific illness. They blow off the ASO as being worthless even though it is 3x abnormal.

 

 

 

 

Get a second ASO; NIMH (Swedo) considers the direction of the titers -- rather than a single freestanding measure -- as indicative of trouble and of the condition. If the number continues to trend up, or fails to fall on the heels of treatment, then that's indicative of an auto-immune imbalance.

 

You need a PANDAS doc. The "not walking straight," sensory issues and unabating anxiety are all signs of infection and autoimmune response to the infection; my DS did these same things in the depths of his illness (he actually dragged a leg behind him, which I thought of as a mere "quirk" and not a physical manifestation of the illness until I came here and "got schooled"!).

 

No psych ward, but I do agree with dcmom regarding the positives of therapy. Though it also sounds to me as though your DS is still in the midst of a pretty dramatic episode of illness and needs medical intervention, pronto!

[3boysmom]

OMG! It is not always about the active strep. He needs antibiotics for the high titers. You really need a specialist, the right treatment will bring him back, the extra cost is worth the knowledge and direction. Also, he could have infections that are difficult to find.

[Kathy4Him]

You are so right to keep him out of psych ward!!! Perhaps you can try to see a pediatric rheumatologist who treats autoimmune?

[sosudden]

What a bunch of CRAP! Sorry your kiddo and family are going through this! I agree - no psych ward for these kiddos!! And for separation anxiety??!! Are you kidding me? AWFUL! What is wrong with some of these doctors??!!

I agree about searching for more underlying infections etc. I have read (I think) in one of your posts you would not do IVIG but I will say it saved my dd from plumeting off...

Then it wasn't until July (5 months after IVIG) that we had to pay more out of pocket to consult Dr T because we were just getting nowhere fast with local doctors.

DD was better but had a horrible flare (although not as bad as 1st) June 5th (I remember that day:(

Dr T helped us find and rid Mycoplasma (got while ON zithromax), HSV and coxsackie.

Also T&A helped and a very important part of her healing.

 

So I guess the moral to this story was for US is we HAD to go the "main" well known PANDAS/PITANDS/PANS Doctors to help our girl. I continue to scour these sites and Facebook to find anyone closer/local that can help us.

(((HUGS))) to you all.

[MomWithOCDSon]

He has had 4 over the course of a year and all are 3x abnormal. There are no signs of infection, just high antibodies, but why are they high? Frustrating. He is a great kid. I feel so sorry for him.

 

 

 

My DS never had an active infection that we knew of . . . he was entirely classically asymptomatic for strep . . . and yet his titers remained consistently high. Sammy Maloney had a similar presentation.

 

In retrospect, I'm fairly certain now that my DS had harbored the strep bacteria in his sinuses, as he'd suffered from recurrent inner ear infections and respiratory problems since about 18 months of age through the age of 3, and thereafter continued to have upper respiratory issues, even after the ear infections stopped. Some families here have gone to lengths to have the sinuses scoped, etc., and have found nodules, etc. where the bacteria has hung out.

 

You need a PANDAS specialist because PANDAS is, in the end, a clinical diagnosis. Some kids have high titers, some kids don't. Some kids have active, readily discernable infections with fevers and/or sore throats, some kids don't. But all of them suffer from an astonishingly similar set of behaviors as a result of the auto-immune response, and PANDAS specialists recognize these. If you have high titers, you might be more likely to secure help from a non-PANDAS specialist (we were), but there's no guarantee of that, as you've found.

[tpotter]

He has had 4 over the course of a year and all are 3x abnormal. There are no signs of infection, just high antibodies, but why are they high? Frustrating. He is a great kid. I feel so sorry for him.

 

 

 

 

 

 

Actually, the separation anxiety is a big, very significant sign of infection.

[cobbiemommy]

Oh, how I feel for you. Get to a PANDAs doc asap. My son had intracellular strep that settled in the lining of his nose. His titers never rose, but that may be because he had no antibodies for strep. He needs good medical care from some of the best minds in medicine. These docs will support you, your decisions and observations, and get your whole family on the path to wellness.

 

There are all kinds of presentations of this mind boggling condition, but the causes are the same, infection either bacterial or viral. You need your own version of "Dr. House" but without the attitude to find the problems.

 

Keep us posted.

 

Cobbie

[pandakid11]

Strep tests keep coming back negative. ASO is high, though. What infection could it be? We have had a ton of blood tests, but nothing shows. He was on anti-biotics for quite some time and now cannot tolerate them since he is so nauseated. What the heck is the infection? I think he has one, also, but we haven't found it. He feels way worse at night, which is common in fighting an infection. So frustrating. Western Blot had zero bands, so not lyme. Thanks

 

 

He has had 4 over the course of a year and all are 3x abnormal. There are no signs of infection, just high antibodies, but why are they high? Frustrating. He is a great kid. I feel so sorry for him.

 

 

 

 

 

 

Actually, the separation anxiety is a big, very significant sign of infection.

[smartyjones]

Strep tests keep coming back negative. ASO is high, though. What infection could it be? We have had a ton of blood tests, but nothing shows. He was on anti-biotics for quite some time and now cannot tolerate them since he is so nauseated. What the heck is the infection? I think he has one, also, but we haven't found it. He feels way worse at night, which is common in fighting an infection. So frustrating. Western Blot had zero bands, so not lyme. Thanks

 

 

Actually, the separation anxiety is a big, very significant sign of infection.

 

 

i agree with tpotter that the separation anxiety is a big symptom!!!

 

we now see an integrative MD -- my ds10 was having some breathing trouble with basketball -- his symptoms 2 years ago included breathing issues -- conventional medicine would have had him on an inhaler for the rest of his life for exercise-induced asthma -- integrative MD believed him to have tic borne illness -- treated him -- breathing issues improved. this summer, he showed signs of myco. seemed to have improved. integratvie doc believes this is a symptom --myco is not gone and is still trobulesome for him. he said, "people don't have symptoms for no reason". great quote!! treating now -- 2 weeks now -- he ran around the outer college basketball stadium the other night 2 times and only had heavy breathing i would expect after that excertion. quite different from weeks earlier.

 

years ago, with ds8's onset, ped told me of a story where a beautiful, capable, going places 18 year old girl fell apart when she went to college -- had to drop out after a year b/c was a mess. all thought psych issues that she couldn't handle it. many docs couldn't find a medical reason. he suggested running ASO -- it was high. they then discovered she had had dental work the summer before college. they left some cotton in her gums and it was strep infected. they removed it, treated infection and she was back to her prior self. that's my traditional med ped who was involved in that story!!

 

just my advice -- i would not back off the symptoms your child is showing or that high ASO!