New to this: wow! Could my son have PANDAS?

[Joyfulgreetings]

Hi, I have a son, age 7. He was a very compliant, sweet natured baby and toddler. When he was 3, he came down with an incredible fever (101-105) that would not go away. I took him to the doc several times but was always told it was a virus and had to wait it out. Finally on day 5, I went in again. This time his strep test came back positive and we put him on antibiotics. I noticed in that year his behavior went from sweet and compliant to angry and defiant. Even his music teacher said that he was not the same happy boy she had in her class the year before. I didn't know what to think. He had bout after bout of strep for years but was alway 1 away from needing his tonsils out. This past summer he had his tonsils and adenoids removed because they were enlarged and causing sleep apnea. After healing from the surgery, it was like I had my old sweet, compliant child back! But then a few weeks later the angry son was there again. Now I'm thinking it was the strong antibiotics he was on from the tonsilectomy! Could this really be the answer??? Could my sweet, smart, wonderful son be trapped inside this angry little body because of strep?? He does not show OCD or tic behaviors but does have extreme ADHD behaviors and is very defiant. Any answers would be helpful. I just found out about PANDAS yesterday while surfing. Thank you in advance.

[beeskneesmommy]

The answer is Yes. My son began his bouts w/Strep at a very early age. The tonsillectomy actually caused a severe acute episode because they were removed while he was Strep infected. Long term abx brought him back, although not perfectly, as this had been going on for a long time. He just had IVig and is doing very well. I have not seen the oppositional/defiant bx for quite some time. Long term, therapeutic abx dosage is very important, in my view. You must get in with a specialist!

[nicklemama]

It sounds very suspicious for PANDAS. I would also advise that I did not think my son had OCD either. OCD in children presents differently. I finally figured out, reading here, that the raging anger and defiance that my DS was displaying was in response to interruption of OCD. My DS counted everything, lined everything up perfectly (in his eyes) had to finish anything he started, including watching a tv program. He would NOT leave a tv program. When we turned the tv off, he blew up. In retrospect, he HAD to finish the program. It was part of his "just right" ocd. He had to say certain things before he brushed his teeth. We did know he was hoarding. He would not throw away the boxes that Dove ice cream bars came in and he "collected" pine cones and sticks. We just did not understand these things as ocd. Our son was also talking a lot about religion and God. We are not particularly religious people. He would confess to his every bad thought and worry about what God would think. There were many more than this but I wanted to give you an idea of just what ocd can look like in children.

 

I bought and read the book "Freeing Your Child From OCD" by Tamar Chansky. It gives a really good understanding of ocd and examples.

 

Here are some common compulsions in children

 

washing and cleaning

checking

symmetry

counting

repeating/redoing

hoarding

praying/confessing

 

These are common obsessions in children

 

contamination

harm to self or others (fear of)

symmetry urges

doubting

scrupulosity/religiosity

hoarding

sexual themes (intrusive thoughts)

 

I'd recommend reading this book and see if some of these things don't jump out at you. It was very eye opening and surprising to me.

[Joyfulgreetings]

It sounds very suspicious for PANDAS. I would also advise that I did not think my son had OCD either. OCD in children presents differently. I finally figured out, reading here, that the raging anger and defiance that my DS was displaying was in response to interruption of OCD. My DS counted everything, lined everything up perfectly (in his eyes) had to finish anything he started, including watching a tv program. He would NOT leave a tv program. When we turned the tv off, he blew up. In retrospect, he HAD to finish the program. It was part of his "just right" ocd. He had to say certain things before he brushed his teeth. We did know he was hoarding. He would not throw away the boxes that Dove ice cream bars came in and he "collected" pine cones and sticks. We just did not understand these things as ocd. Our son was also talking a lot about religion and God. We are not particularly religious people. He would confess to his every bad thought and worry about what God would think. There were many more than this but I wanted to give you an idea of just what ocd can look like in children.

 

I bought and read the book "Freeing Your Child From OCD" by Tamar Chansky. It gives a really good understanding of ocd and examples.

 

Here are some common compulsions in children

 

washing and cleaning

checking

symmetry

counting

repeating/redoing

hoarding

praying/confessing

 

These are common obsessions in children

 

contamination

harm to self or others (fear of)

symmetry urges

doubting

scrupulosity/religiosity

hoarding

sexual themes (intrusive thoughts)

 

I'd recommend reading this book and see if some of these things don't jump out at you. It was very eye opening and surprising to me.

 

 

Thanks for your input! I haven't noticed any of those things with my son. I do know he is obsessed with time. So much so that we had to take out all the clocks in the house because he would wake up at all hours to see what time it was. But that is the only thing he seems obsessive about. He is actually very sloppy and it's a crises when I ask him to wash his hands. But I will check that book out. Thanks again!

[tpotter]

Obsessions are obsessions. None of our children have the same obsessions as another. As suggested previously, I would definitely suggest you get in with a specialist as soon as possible. They are hard to get appointments with, and even if you are lucky enough to have a pediatrician who will follow what the specialist says to do, you still have to see the specialist.

 

May I recommend, too, though, that you also check for other infections. Bartonella (an infection believed to be similar to Lyme Disease) as well as Mycoplasma Pneumonia (a type of walking pnemonia, which is also an atypical pneumonia) can cause the angry rages you are seeing. My son had both bartonella and mycoP. Also, many of us have found that in addition to strep (and/or instead of strep) there are other infections as well...lyme, staph, etc. With PANDAS/PANS, the immune system is affected, so the person is highly susceptible to getting more than just one infection, even though it may be the one infection that may have "thrown it over the top." Additionally, many of these kids have difficulty fighting infection, and metabolizing vitamins and such. There is something called an MTHFR gene mutation (Methylfolate receptor, I think), and many of our kids end up having the mutation. This makes it difficult for the vitamins and such to be processed by the body, so they may appear to be low in vitamin D, B vitamins, etc., and some of this can explain the symptoms your child may have.

 

I know it's confusing, but again, I would start with a PANDAS and/or Lyme specialist.

 

Good luck.

[Missmom]

Has his handwriting/Coordination gotten worse does he repeat words? Just a couple other things to look for.

[Joyfulgreetings]

Has his handwriting/Coordination gotten worse does he repeat words? Just a couple other things to look for.

 

His handwriting has gotten much worse, but he is throwing a football better than ever.

[Joyfulgreetings]

Everyone: thanks for your response, I will definitely take him in. It's hard not to think that maybe I'm just crazy and grasping for straws!!! I thought getting his tonsils out would help because of sleep apnea - it helped some, but there are still so much anger and impulse control issues.

[nicklemama]

Joyful- My son's handwriting is atrocious. He plays baseball, is on a swim team and is very good at tennis. You'd never know by looking at his handwriting. When we went to open house for his school in the fall, the class had drawn a picture and they were all hanging up. Dh and I, independently, looked for the worst one and asked DS if that was his. You guessed it. His art things look like a kindergartner did them. He's in 3rd grade.

[Joyfulgreetings]

Joyful- My son's handwriting is atrocious. He plays baseball, is on a swim team and is very good at tennis. You'd never know by looking at his handwriting. When we went to open house for his school in the fall, the class had drawn a picture and they were all hanging up. Dh and I, independently, looked for the worst one and asked DS if that was his. You guessed it. His art things look like a kindergartner did them. He's in 3rd grade.

 

Well the weird thing is his art is very good, much better than most boys his age, but his handwriting is getting worse instead of better since last year. A LOT worse.

[3boysmom]

You can start with simple ASO & AntiD-Nase strep titer tests. Your pediatrician may be willing to run then.

[EAMom]

Hi, I have a son, age 7. He was a very compliant, sweet natured baby and toddler. When he was 3, he came down with an incredible fever (101-105) that would not go away. I took him to the doc several times but was always told it was a virus and had to wait it out. Finally on day 5, I went in again. This time his strep test came back positive and we put him on antibiotics. I noticed in that year his behavior went from sweet and compliant to angry and defiant. Even his music teacher said that he was not the same happy boy she had in her class the year before. I didn't know what to think. He had bout after bout of strep for years but was alway 1 away from needing his tonsils out. This past summer he had his tonsils and adenoids removed because they were enlarged and causing sleep apnea. After healing from the surgery, it was like I had my old sweet, compliant child back! But then a few weeks later the angry son was there again. Now I'm thinking it was the strong antibiotics he was on from the tonsilectomy! Could this really be the answer??? Could my sweet, smart, wonderful son be trapped inside this angry little body because of strep?? He does not show OCD or tic behaviors but does have extreme ADHD behaviors and is very defiant. Any answers would be helpful. I just found out about PANDAS yesterday while surfing. Thank you in advance.

 

Hi,

I haven't read all the responses, but if he isn't currently on antibiotics, get a throat culture on your son. Also get throat cultures on family members to check for carriers.

 

Where do you live? maybe somebody can rec a PANDAS doc. He probably needs longer term antibiotics (plus maybe other things, immune workup, IVIG, etc.) if he has ADHD and defiance (which can be a symptom of OCD in kids) when he is off them.

[Joyfulgreetings]

I know this is really old but I wanted to let the people who replied know what has happened. After doing a ton of research I realized my son had a lot of OCD and tics and I just didn't know it because they weren't classic at all. After doing research on tics and OCD I learned a lot!

 

1)He touches everything. I just thought it was little-boy-active, but apparently its not the case.

2) He holds his breath all the time while sitting still (watching TV, reading, coloring...). I have noticed it forever and even his preschool teacher mentioned it to me. I told his doctor and she said it was just a weird habit and he would out grow it. Apparently that's considered a vocal tic

3) Always has to look at the clock. He would wake up at all hours to go see what time it was. Even if he knew he would get in huge trouble, he was compelled to go look at that clock. I thought it was stubborn control issues.

4) He has to know the temperature before he will get dressed in the mornings.

5) He is afraid to sleep while the sun is up - even a little. He won't tell me why.

 

We saw Dr Rao in TX and told him all of these things. Later that day he also told me that sometimes when he says a word that word will get stuck in his head and he will repeat it inside his head all day long.

 

I had no idea... He is being treated with abx now we are waiting on lab results.

 

Thanks for all of your help. I feel like I should have earned a degree since I first learned of this in November. I have done so much research! I'm sure all of you feel the same. I just can't begin to tell you how greatful I am that you answered my questions and didn't make me feel crazy.

[Missmom]

Thanks for the update. When did he start the abx? Have you noticed any slight improvements. Remember it will take time, it will be saw-toothed, but you should start to have more good days each week/month. When my son started with overnight tics I lost about ten pounds in a month and I spent days/nights up doing research. We have all been there. Take care.

[nicklemama]

Glad to know you figured it out and have a treatment plan in place!