Developmental Delays

[HelpNate]

Hello,

 

I am new to this site. My son was diagnosed 3 years ago with PANDAS after having two back to back Strep Infections. He had very acute symptoms. We ended up having him on anti-biotics for 6 months and he did improve.

 

Over the past two years we have noticed that some of his symptoms returned from time to time but at a lesser degree, and strep swabs came back negative so we did not relate it to the PANDAS.

 

It was not until recently, when I started to notice that the tics returned, again, with a vengance, along with other OCD like symptoms and ADD symptoms that it made me think this could be related. I took him in for another strep test recently (as he was sick and showing symptoms) and it was negative.

 

Yesterday his teacher said something to me that made me stop in my tracks. She said, " Between August and the end of October your child was an angel, he acted somewhat "young" but was an all around good kid. However, I was out sick for a week at the end of October (when we started noticing the tics return as well as the other symptoms) and when I returned I was teaching a completely different child. It was like this darling child regressed one year emotionally and socially overnight." This felt all too real to me as that is how I feel. Like one night you have one child and the next day a different child.

 

I feel very guilty that for the past two years, I have not considered PANDAS and instead punished my child and/or allowed the school to punish my child for issues that may be out of his control. I am going to the doctor tomorrow to request an ASO be taken as well as to request an MRI (my son was born with an enlarged cisterna magna, fluid filled sack of water in the back of the brain, I want to rule out that this may be causing pressure). I will request that he is put on antibiotics again. Are there any other suggestions?

 

Also - has anyone who's child is socially and emotionally behind other children. or, is "spacey". This is something that I have noticed following his first onset of PANDAS

[EAMom]

Hi,

can you post where to live so someone can rec. a doc?

 

you should also check out www.pandasnetwork.org and http://webpediatrics.com/pandas.html

 

You should have bloodwork done by Dr. Cunningham at Univ. of Oklahoma when her lab re-opens in Jan.

 

You should run an anti-dnase b with the ASO titers...but be aware that lots of PANDAS kids will have neg. strep titers. So, if your kid happens to be one with high titers, than can help "prove" evidence of strep (if you don't have the cultures) but if they are neg, some docs will use this as an excuse to say "your kid doesn't have pandas." read Buster's Aug 24 and Jan 11 posts on titers http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Many kids on this forum are on long term abs (some full-strength, some lower prophylactic doses). I would rec. at least 2 mo. of full-strength abs (usually Augmentin or Azith. are the most sucessful) to see if there is an improvement. If there is no improvement on one ab after a few weeks, I would switch to the other. The typical "10 days of amoxcillin" doesn't seem to cut it for PANDAS kids. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Over the past two years we have noticed that some of his symptoms returned from time to time but at a lesser degree, and strep swabs came back negative so we did not relate it to the PANDAS.

non-strep bacteria and viruses can also trigger exacerbations...usually ones caused by strep are the worst. For us, H1N1 and fifth's dz were triggers. Dental work/dental infections can also be big triggers.

 

Also - has anyone who's child is socially and emotionally behind other children. or, is "spacey". This is something that I have noticed following his first onset of PANDAS

yes...there have been others like this. My own dd didn't get spacey...OCD, anorexia, tantrums, emotional lability, some tics, compulsions, depression, stopped wanting to play, considered herself a "bad person", social anxiety, separation anxiety....

[thereishope]

Did you ever find out why the teacher was out sick? Strep perhaps? Have you ever had a discussion with teacher about PANDAS and the need to know about illness? If not, maybe it is time. If you do that, maybe she'll also tell you why she was absent.

 

As for being "spacey", during an exacerbation, there were times when he did appear so. I pretty much let him be if that happened. It would not last for long periods of time. Maybe a few minutes.I saw it as a need to "just be" or maybe he was processing information. During the rest of life (not during an exacerbation), in school my son is very serious. Even during parties, he is stone faced. I think it''s because takes school very seriously and doesn't see the classroom as a place to goof around....even though he is in kindergarten and it is okay to goof around sometimes. Socially, specifically at school, he does sometimes need prompting to respond to group questions or give socially appropriate answers Like, "how are you". He'll say "I don't know" instead of simple syaing "fine". He gets frustrated when you tell him to say "fine" because he'll say he really doesn't know. He doesn't see the need to lie just to be politically correct. Overally, he has GREATLY improved in his social skills. I don't see them surfacing as much outside of school, but it is specific to school. He has an IEP for speech and his social skills are also cited in there to ensure he is prompted when needed. To make he vists all centers, responds to group questions, even sayds he needs to sing along. School don't realize some kids don't like to sing. That last one annoys me.

 

As a baby and toddler, he did meet all milestones at the right time (except for speech).

 

What OCD tendencies are you seeing right now? Some of them, once you really look at them, can be a round about reason for his backslide in social and emotional regression. Like I realized part of my son's extreme separation anxiety was because I would aid him in completing OCD tasks. Ones I didn't even realize I was helpig him with.

[smartyjones]

Some of them, once you really look at them, can be a round about reason for his backslide in social and emotional regression. Like I realized part of my son's extreme separation anxiety was because I would aid him in completing OCD tasks. Ones I didn't even realize I was helpig him with.

 

 

vickie - can you elaborate on what you mean about the separation anxiety and ocd tasks?

thanks!

[Ellen]

HelpNate, my son has had PANDAS for almost three years and his primary and most debilitating symptom is that he is spacey. In his case, it is intrusive OCD thoughts that cause him to be this way.

 

Ellen

 

Hello,

 

I am new to this site. My son was diagnosed 3 years ago with PANDAS after having two back to back Strep Infections. He had very acute symptoms. We ended up having him on anti-biotics for 6 months and he did improve.

 

Over the past two years we have noticed that some of his symptoms returned from time to time but at a lesser degree, and strep swabs came back negative so we did not relate it to the PANDAS.

 

It was not until recently, when I started to notice that the tics returned, again, with a vengance, along with other OCD like symptoms and ADD symptoms that it made me think this could be related. I took him in for another strep test recently (as he was sick and showing symptoms) and it was negative.

 

Yesterday his teacher said something to me that made me stop in my tracks. She said, " Between August and the end of October your child was an angel, he acted somewhat "young" but was an all around good kid. However, I was out sick for a week at the end of October (when we started noticing the tics return as well as the other symptoms) and when I returned I was teaching a completely different child. It was like this darling child regressed one year emotionally and socially overnight." This felt all too real to me as that is how I feel. Like one night you have one child and the next day a different child.

 

I feel very guilty that for the past two years, I have not considered PANDAS and instead punished my child and/or allowed the school to punish my child for issues that may be out of his control. I am going to the doctor tomorrow to request an ASO be taken as well as to request an MRI (my son was born with an enlarged cisterna magna, fluid filled sack of water in the back of the brain, I want to rule out that this may be causing pressure). I will request that he is put on antibiotics again. Are there any other suggestions?

 

Also - has anyone who's child is socially and emotionally behind other children. or, is "spacey". This is something that I have noticed following his first onset of PANDAS

[thereishope]

Most of his separation anxiety revolved around being dropped of at preschool. It always had to be me who dropped him off. He wouldn't let his dad. If we even mentioned his dad dropping him off, the ultimatums began (if you want me to go to school, mom takes me), the whining, crying, etc would begin. All without even leaving the house or even being a school day.

 

In hindsight, I realized that he needed me to be the one who dropped him off because I knew what he wanted his routine to be. I aided in letting him complete them and I actually was part of the rituals. Actually, me being the one who took him was one of the OCD rituals. So, to start with, the thought of me not going caused anxiety.

 

Once at school, he needed to get out of the car a certain way, he needed to put his stuff in the cubby a certain way, he needed to "flatten" and fix his hair a certain way after taking his hood or hat off and had to do it a certain number of times, he needed to kiss me a certain way and he needed me to kiss him back a certain way. Saying goodbye had to be exact. When part of the classroom's morning routine changed, he got anxious and needed me to help him "cheat" his way out of doing it because he did not want it to change. Because I wanted to his droppoff to go smooth, I ended up aiding him in completing each task. I "let" him do everything he felt he needed to do.

 

Throughout the day, there were probably other tasks he would want to complete. If I wasn't there, he knew there was a chance he wouldn't be able to do them or someone may not allow him. Just the thought of that caused anxiety. Even at 5 years old, he was very smart about finding ways to submit to the OCD.

 

I don't all the separation anxiety was a result of OCD. I am a stay at home mom, so he had me all the time. I was also the one who mainly took care of him and got him through PANDAS meltdowns, high anxiety, and all other kinds of episodes. I can see how he may have viewed me as a lifeline.

 

When his dad took him to school, he was competely fine.

 

Other OCD issues could cause it to appear that a child is regressing in social skills. Take for example, the classic fear of dirt and germs and contamination. My son had that. He wouldn't want to play with other kids because they may have picked their nose. In turn, the toys in the room may have been touched by those kids, so the child cannot play with those toys. That leaves you with a child sitting by themself not doing anything. It's a snowball effect. But if someone doesn't know the underlying reason for that child just sitting there, it looks like they are just antisocial and don't want to interact with others.

 

 

Some of them, once you really look at them, can be a round about reason for his backslide in social and emotional regression. Like I realized part of my son's extreme separation anxiety was because I would aid him in completing OCD tasks. Ones I didn't even realize I was helpig him with.

 

 

vickie - can you elaborate on what you mean about the separation anxiety and ocd tasks?

thanks!

[Megs_Mom]

Socially, specifically at school, he does sometimes need prompting to respond to group questions or give socially appropriate answers Like, "how are you". He'll say "I don't know" instead of simple syaing "fine". He gets frustrated when you tell him to say "fine" because he'll say he really doesn't know. He doesn't see the need to lie just to be politically correct.

 

 

We had that - she could not answer a simple question such as "how are you" - there is not black & white answer, so anything could be a lie. And she litterally could NOT lie. She seemed really shy or unresponsive. It turned out that one of the many types of OCD that she had is called Scrupulosity. It is quite common, and in older kids is usually seen in compulsive praying. For Meg, it manifested more in an inability to lie for fear of consequences that were not logical (such as my leaving her altogether - we joke about it now, like I'll say "well, can I go to Hawaii, or are you sending me somewhere really cold?") She also could not answer simple questions like "what do you want to eat" for fear that whatever she choose would be a bad option & make her sick. And she had rituals in her head, if she did something bad, that she would say "sorry, God" a certain number of times & if interrupted had to repeat. This all made her seem very spacy and disconnected. She also confessed all kinds of things - some real, some that she "might have done". She could not answer a direct question about cheating, for example, and would be completely distracted during a test for fear that she would accidentially cheat by seeing another child's paper. She literally built walls around her desk using books & lunchboxes while taking a spelling test.

[Suzan]

Socially, specifically at school, he does sometimes need prompting to respond to group questions or give socially appropriate answers Like, "how are you". He'll say "I don't know" instead of simple syaing "fine". He gets frustrated when you tell him to say "fine" because he'll say he really doesn't know. He doesn't see the need to lie just to be politically correct.

 

 

We had that - she could not answer a simple question such as "how are you" - there is not black & white answer, so anything could be a lie. And she litterally could NOT lie. She seemed really shy or unresponsive. It turned out that one of the many types of OCD that she had is called Scrupulosity. It is quite common, and in older kids is usually seen in compulsive praying. For Meg, it manifested more in an inability to lie for fear of consequences that were not logical (such as my leaving her altogether - we joke about it now, like I'll say "well, can I go to Hawaii, or are you sending me somewhere really cold?") She also could not answer simple questions like "what do you want to eat" for fear that whatever she choose would be a bad option & make her sick. And she had rituals in her head, if she did something bad, that she would say "sorry, God" a certain number of times & if interrupted had to repeat. This all made her seem very spacy and disconnected. She also confessed all kinds of things - some real, some that she "might have done". She could not answer a direct question about cheating, for example, and would be completely distracted during a test for fear that she would accidentially cheat by seeing another child's paper. She literally built walls around her desk using books & lunchboxes while taking a spelling test.

 

Wow, I really need to talk to you guys more about specific examples of OCD and how it can manifest. I think I really do not understand what my dd is going through at all. I just know things like this are going on but I don't know how to find out about it. Today she was biting on her tongue with it sticking out of her mouth and making a "nuh, nuh, nuh" sound. She says she does that at school when she is not feeling right and says she feels better when she does it but I don't know why she isn't feeling right. I can totally see her building a wall around her paper or not being able to answer a question for complicated reasons unknown. She's big into confessing and there must be something going on that she can't verbalize where if she thinks she's gotten me mad, the best thing to do is to stand totally still. If I move at all or make any facial expressions, she freaks out but I don't know what is going on in her head.

 

Susan

[HelpNate]

Hi EAMom,

 

We live in the San Francisco area, Pleasanton, CA to be exact. Thank you for your feedback.

 

Hi,

can you post where to live so someone can rec. a doc?

 

you should also check out www.pandasnetwork.org and http://webpediatrics.com/pandas.html

 

You should have bloodwork done by Dr. Cunningham at Univ. of Oklahoma when her lab re-opens in Jan.

 

You should run an anti-dnase b with the ASO titers...but be aware that lots of PANDAS kids will have neg. strep titers. So, if your kid happens to be one with high titers, than can help "prove" evidence of strep (if you don't have the cultures) but if they are neg, some docs will use this as an excuse to say "your kid doesn't have pandas." read Buster's Aug 24 and Jan 11 posts on titers http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Many kids on this forum are on long term abs (some full-strength, some lower prophylactic doses). I would rec. at least 2 mo. of full-strength abs (usually Augmentin or Azith. are the most sucessful) to see if there is an improvement. If there is no improvement on one ab after a few weeks, I would switch to the other. The typical "10 days of amoxcillin" doesn't seem to cut it for PANDAS kids. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Over the past two years we have noticed that some of his symptoms returned from time to time but at a lesser degree, and strep swabs came back negative so we did not relate it to the PANDAS.

non-strep bacteria and viruses can also trigger exacerbations...usually ones caused by strep are the worst. For us, H1N1 and fifth's dz were triggers. Dental work/dental infections can also be big triggers.

 

Also - has anyone who's child is socially and emotionally behind other children. or, is "spacey". This is something that I have noticed following his first onset of PANDAS

yes...there have been others like this. My own dd didn't get spacey...OCD, anorexia, tantrums, emotional lability, some tics, compulsions, depression, stopped wanting to play, considered herself a "bad person", social anxiety, separation anxiety....

[EAMom]

We live in the San Francisco area, Pleasanton, CA to be exact. Thank you for your feedback.

 

Hi...I'm in Sunnyvale. Diana Pohlman www.pandasnetwork.org is in Menlo Park. Sfmom and mom2alex are also bay area.

 

Here's a thread on docs http://www.latitudes.org/forums/index.php?...art=#entry37591

 

Diana might know more docs as well.