Is this PANDAS or just my child being difficult

[bgbarnes]

My PANDAS ds came home from his Dad's and he was pretty worked up- according to his Dad he spit in his face when he told him he could not play video games earlier in the day. However my ex took him and his sister to the waterpark for the day. He came home saying he wanted to stay with his Dad. He did not make up his mind fast enough so his Dad left. Then he threw a fit because he wanted have his Dad come back and get him- irrational and defiant.

Then it was time to get ready for bed- he argued he was not going to bed- I asked him to take a bath b/c he was worked up he refused. Then I said you have 3 options shower, bath ( with Epson salt) or straight to bed. Your choice. I walked away a number of times he would cry asking for hugs and for me to return to only start arguing with me again. He would argue he was going with his Dad. Would say he is not going to camp tomorrow if he does not go to his Dad. You name it he argued. I gave him 5 minutes to make up his mind over bath/ shower/ bed- I came back to no decision- he milked it for 25 minutes- unable to make a decision and would freak if I tried to make it for him. I was ready to put him in bed in his clothes and he said he HAD to take a bath. I asked what was so hard about making a decision and he was crying and was not able to tell me. I finally got him in the bath- because I know from history that it would be shorter to get him in the shower/ bath than straight to bed b/c he would talk about needing a shower or bath if we just went straight to bed. When he was in the bath I went to cool off in the other room- after 10 minutes or so I came back after a few minutes I said he has 2 more minutes he freaked said I always give him 5 minutes after he asks to get out. I said fine 5. At 5 minutes when I went to get him out- He freaked plugged the drain up. cried when I pulled him out, jumped back in the tub- said he needed the water. I honestly admit I cried a couple of times b/c I was so frustrated and miserable. When drying him off he begged to get back in the water. My husband came in with the video camera and he calmed down got dressed and went to bed. Before going to sleep he asked for me to snuggle until he fell asleep and before he fell asleep he said once again- I am going to my Dad's. I left before he fell asleep but snuggled longer than normal.

Oh- he scratched the ###### out of his sister at the water park today too.

I just don't know if this is just him being difficult or is it part of PANDAS?

He is on day 10 of zithro of a 30 day dose and I just don't know if it is doing anything.

This was not anywhere close to one of his bad rages- he has turned over furniture before- but it was definitely irrational and defiant.

Thoughts?

Brandy

[peglem]

It sounds like PANDAS to me. I'll bet he was tired from all the activity and that just made it worse.

[smartyjones]

he spit in his face when he told him he could not play video games earlier in the day. He did not make up his mind fast enough so his Dad left. Then he threw a fit because he wanted have his Dad come back and get him- irrational and defiant.

he argued he was not going to bed- I asked him to take a bath b/c he was worked up he refused. he would cry asking for hugs and for me to return to only start arguing with me again. You name it he argued. I came back to no decision- - unable to make a decision and would freak if I tried to make it for him. he HAD to take a bath. was not able to tell me. said he needed the water. . Before going to sleep he asked for me to snuggle until he fell asleep and before he fell asleep he said once again- Oh-

 

I just don't know if this is just him being difficult or is it part of PANDAS?

Thoughts?

Brandy

 

hi brandy. just from our situation, i haven't doubted pandas for my son b/c he had sudden onset, high titers, positive culture and 100% remission with abx. he does have times that he may be upset with a situation and he may have a more normal reaction, it's just a 6-yo getting upset. when he does something like you describe, i know it's due to his brain not functioning correctly.

 

i highlighted the things in your post that could be like a scene from our lives. once i read in an ocd boook, 'it's either yes or no and neither will suffice'. that's how my son can be with decisions, and then cannot accept me making them either. i remember in an interview, sammy said something like, "once, when i couldn't accept help from someone, i wrote on a paper, 'help me.'"

 

i don't think the scene you describe is normal defiance.

 

my son has recently been diagnosed with lyme and toxoplasma gondii infections as well.

 

i've recently told some friends who have looked at me wide-eyed, if your kids are doing something you think is not normal, it's probably not.

[tantrums]

Oh yes, that is exactly the type of stuff we are dealing with as well. I'm so very sorry. I sure know how hard it is to deal with. I think all we can do in regards to it, is keep trugging through, try whatever suggestions other parents can give us that seem appropriate and get through each day.

[Kayanne]

It sure sound like PANDAS to me...I like to call this type of behavior "cognitive inflexibility" (someone on this forum used the term and it just fits perfectly).

 

An inability to actually reason with you child is a classic PANDAS symptom...once we recognized that that is what is going on, we didn't expect her to make a decision...I picked the clothes, I dressed her, I put her in the tub....what ever it was that needed to be done. Yes, she would cry and scream the entire time, and even after...but I think it is easier than expecting them to be reasonable when they really can't be. Expecting her to do it all herself (even though a few weeks before she was completely independent) just resulted in her crying in the bottom of the closet...feeling even worse.

 

I can't tell you how many times I just kept repeating to her..."I have to do this for you because right now you are sick and can't do it." And yes, she physically fought me while I was doing these things....I am praying that she never goes through this again when she is older....I don't know how you all are dealing with this with older children...I pray for all of you!!!

[MomWithOCDSon]

i highlighted the things in your post that could be like a scene from our lives. once i read in an ocd boook, 'it's either yes or no and neither will suffice'. that's how my son can be with decisions, and then cannot accept me making them either. i remember in an interview, sammy said something like, "once, when i couldn't accept help from someone, i wrote on a paper, 'help me.'"

 

i don't think the scene you describe is normal defiance.

 

i've recently told some friends who have looked at me wide-eyed, if your kids are doing something you think is not normal, it's probably not.

I think Smarty hit it straight on the nose here. We see a lot of the same things . . . "grown up" a bit given our DS's age . . . but decision making continues to be the hardest part of the whole PANDAS behavioral package.

 

I was going through some of my DS13's school papers the other day, now that his 7th grade school year is over. In early Fall, at the onset of our PANDAS journey, much like Sammy, he had written in barely legible script in his math spiral: "I need help!!!!!!!"

 

It's enough to break your heart.

[bgbarnes]

he spit in his face when he told him he could not play video games earlier in the day. He did not make up his mind fast enough so his Dad left. Then he threw a fit because he wanted have his Dad come back and get him- irrational and defiant.

he argued he was not going to bed- I asked him to take a bath b/c he was worked up he refused. he would cry asking for hugs and for me to return to only start arguing with me again. You name it he argued. I came back to no decision- - unable to make a decision and would freak if I tried to make it for him. he HAD to take a bath. was not able to tell me. said he needed the water. . Before going to sleep he asked for me to snuggle until he fell asleep and before he fell asleep he said once again- Oh-

 

I just don't know if this is just him being difficult or is it part of PANDAS?

Thoughts?

Brandy

 

hi brandy. just from our situation, i haven't doubted pandas for my son b/c he had sudden onset, high titers, positive culture and 100% remission with abx. he does have times that he may be upset with a situation and he may have a more normal reaction, it's just a 6-yo getting upset. when he does something like you describe, i know it's due to his brain not functioning correctly.

 

i highlighted the things in your post that could be like a scene from our lives. once i read in an ocd boook, 'it's either yes or no and neither will suffice'. that's how my son can be with decisions, and then cannot accept me making them either. i remember in an interview, sammy said something like, "once, when i couldn't accept help from someone, i wrote on a paper, 'help me.'"

 

i don't think the scene you describe is normal defiance.

 

my son has recently been diagnosed with lyme and toxoplasma gondii infections as well.

 

i've recently told some friends who have looked at me wide-eyed, if your kids are doing something you think is not normal, it's probably not.

Thanks- I get so paralyzed when this happens! I don't wish this on anyone else but it makes me feel better to know I am not alone!

This morning he was the most loving wonderful child- he made his bed ( without asking- NEVER HAPPENS) offered to make his little sisters bed- and did it by himself. Fed the dogs, got dressed on his own, ate his breakfast, put his dishes in the sink, brushed his teeth when asked, put his shoes on and had lovely conversations with everyone in the house asking what other chores he can do when he gets home....... We got to school/camp on time and was just a joy.

I guess this might be some of the sawtooth recovery- I was afraid the antibiotics were not working....God this really SUCKS!

I think I need to read more about OCD- it seems to be more prevalent than I thought...THANKS EVERYONE!!!!

Brandy