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Dr. T Second Opinion Yesterday


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Good Morning!

 

First of all I need to say THANK YOU to all of you that encouraged a second opinion. My DH who was not so happy about this second opinion is completely on board now. After the almost immediate changes in DS4 after removing him from ABX. DH is now saying you lead and I will follow whole heart-idly! So here is what we determined yesterday...

 

Dr. T is convinced that DS4 HAS PANDAS. We (DH, DS5, DS4 and myself) are ALL getting labs done this am. Dr. T was absolutely FANTASTIC. He explained about the possible gene that can be carried in the family. When you put it all together it's a no brainer. We will determine if one or more of us are carriers. We will see what type of infection is streaming through DS4. The Diabetes connection was interesting. He said that the frequency of urination could have something to do with that. I'm not fully understanding the connection but I will further read to educate myself how and why.

 

The main thing is this...we have hope! Once we get him on the right ABX. The behavioral issues may change. Today his tics are subtle and behavioral stuff seems to be the toughest. If any of you have words of encouragement with HOW to calmly facilitate blood labs with DS4 & DS5 it would be greatly appreciated. I have heard rub tooth numbing gel on their arms before visit. How do you all go about lab work?

 

Thank you, thank you, and THANK YOU for all of the input. We WILL get through this! Prayers and hugs to you all!

 

KK

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Hi! I am new here and don't know much about PANDAS yet, however I wanted to say that I am happy for you that you have found hope! As for handling blood tests, my son's recent tests caused him a lot of distress, at the mention he would have to come in the following day for them, he began to become extremely anxious and upset, and he is 10 years old! However, the doctor sent us home with a local anesthetic cream and a patch to put on one hour prior to the test, which numbed the area and helped calm his nerves as he knew the pain would not be as severe, perhaps you could inquire about this? Good luck with everything!

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Call Dr. T back and ask for a prescription for EMLA cream. 1/2 hr before you leave for the blood draw, apply cream to area to be stuck. We usually do inside the elbow and some on forearm in case they have to stick your child more than once. Cover area with Saran wrap and secure with tape.

 

Area will be completely numb by the time they will be stuck - prick your child with your fingernail to prove it to her that the area is numb.

 

Finally - give a reward - my children always picked their rewards before the draw so they could focus on something positive.

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Kleek3, at our initial visit with Dr. L. recently, she confirmed pandas in our dd12, and asked about frequent urination as if it were one of her routine questions. So I was thinking, oh, I didn't know this was pandas related but I guess maybe it is. I'm learning so much, including all the body parts that strep can affect, including the kidneys. So if your doc thinks it is related to diabetes, ok I'm wondering if it has something to do with strep and the kidneys, at least for us. We'll be following up on that with our docs.

So glad to hear your results with the second opinion and that you and dh are on board together. All the best!

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Frequent urination is a PANDAS symptom, so don't ignore it!!! My 4 yo son ONLY wets the bed when he's positive for strep. If he has an accident - we run to the peds office for a swab - and they are almost ALWAYS positive! I have no idea why this is a PANDAS thing - but it's been our biggest tell.

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Frequent urination is a PANDAS symptom, so don't ignore it!!! My 4 yo son ONLY wets the bed when he's positive for strep. If he has an accident - we run to the peds office for a swab - and they are almost ALWAYS positive! I have no idea why this is a PANDAS thing - but it's been our biggest tell.

Us, too.

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Our DD also had frequent urination when this all started... That is much better now but it is a very commonly reported symptom among the PANDAS kids. We also apply lidocaine cream on her arm 1 hour or so before any lab work as she is very nervous about needles. It's so sadly ironic that our anxious kids have to get so many blood tests! Hang in there - you're on the right path!!! :)

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So glad you are getting some answers and have a plan! I felt like a huge weight was lifted once we had a solid diagnosis and protocol in place! On the subject of frequent urination, my understanding from dr. L (and I hope I'm not butchering this with my limited science knowledge) is that there is a dopamine response that impacts the urge/need to urinate. My daughter wet the bed for the first time in her life (she was dry at night before she was out of diapers!) since presenting with PANDAS. It's definitely related.

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I agree, use EMLA cream (and some bribery!!)

 

Frequent urination was an early PANDAS symptom for us...it was one that responded well to antibiotics. In other words, for us, it was a symptom that went away pretty easily (more so than the tics/ocd).

 

Oh, btw, while frequent urination is quite common in PANDAS kids, only 1.9% (and I wonder if they were misdiagnosed, actually had PANDAS!) of non-pandas kids with tics have frequent urination (pollakiuria sp?) in this paper from Taiwan http://memo.cgu.edu.tw/cgmj/2811/281105.pdf

 

"However, we could find almost no articles in the literature

discussing pollakiuria in children with TD

(either chronic or transient), except for articles about

pediatric autoimmune neuropsychiatric disorder

associated with streptococcal infection (PANDAS),(2)

which is an abrupt and explosive onset of behavioral

problems (obsession, compulsion, tic, attention

deficit, hyperactivity) with the presence of group A

beta-hemolytic streptococcal (GABHS) infection. It

was our aim to describe the possible association

between pollakiuria and children with TD, after

excluding PANDAS, and arouse clinicians’ awareness

of this specific issue."

 

of the non-PANDAS ticcers: "We found that nine (1.9%) out of 467 children

with TD had pollakiuria: 407 boys and 60 girls, with

a mean age of 8.7 years."

Edited by EAMom
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Labs are DONE! Thank you for the cream advice. I called our Peid and the script was written. What a difference it made. Both boys after the initial anxiety of a needle made it through no problem. Follow up on the 18th for results. Thanks again to those of you who have braved the storm before us and share your insight so freely!

 

Prayers and hugs to you all!

 

KK

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For a couple of years, ages7-9, DD11's teachers kept asking if she should be tested for a UTI because she was asking to be excused from class so frequently. There was a wet bed a couple of times a week during that period as well. Urine specimens were always negative. We have gotten past the EMLA thing, but always do ask for a pediatric needle for blood draws.

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Kleek3,

 

So glad that the visit with Dr. T worked out so well. It is always worth getting a second opinion--though like your DH, this would not be the natural impulse of my DH either.

 

With regard to frequent urination, my 22 year old DS saw Dr. L in June and she asked him this too. To my surprise he said yes. So there is no age limit on this one! I keep flashing back to the first grade teacher of my DD, now 19, who told me I should get her checked for a UTI because she was going to the bathroom so frequently. She said it in a kind of deprecasting way, so I ignored it. Maybe things would be different had I paid more attention back then....

 

Ko's Mom

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Something that really helped my DS with the bloodwork was when Dr B's tech put the elastic cord on his sleeve rather than his skin. He would get so worked up about that elastic pinching his skin! and liberal use of bribery....fries, ice cream, etc.

 

One of his very first symptoms was frequent urination to the point of accidents at school when he'd been completely accident free since the age of 3.5 Well-meaning school staff kept reassuring me that it was no big deal for a K student, but I kept thinking it was highly unusual for him and something was wrong. That and the sleep issues, anxiety, and hypermotoric racing and bouncing all came on together. We checked for UTI but nothing of course.

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