Help, my sons counselor has called DSS

[Rowens1214]

My son has been going down hill again this past week. Yesterday from the minute he woke up until midnight he was defient, aggressive, swearing, throwing things. All in all a fun day. By dinner time i had locked myself and my youngest son in my room and let his father try and get my son to take one of his klonopin and sit and talk with his Aunt and uncle who i had called over earlier when things were getting out of hand. he did calm down but .......today we went to see his counselor and he proceeded to tell him that i said terrible things about him, refused to help him when he was upset on and on and on. I have talked with the couselor about PANDAS, and he just looks at him and nods his head. I dont think he "believes" in it.

 

Well i just got a call from the counselor who says he feels like DSS (department of social servcies) needs to get involved since things are so bad in the home. I am freaking out. I told the coulselor that Will has rages off and on and we are trying very hard to help him get better with abx and IVIG etc. I am so afaired of what DSS will do. They just wont understand. Can anyone offer the best web site or link that described PANDAS in a simple way so I can print it out and have it when they show up at my door. I know they will think my son is a moody, defient teen and yes at times he is but last night that crazy child was not my son. oh it just never ends.

[EAMom]

Is your son also on an SSRI or just Klonopin? Be careful of serotonin syndrome (can make aggression /rages worse) when you combine the two.

[Fixit]

My son has been going down hill again this past week. Yesterday from the minute he woke up until midnight he was defient, aggressive, swearing, throwing things. All in all a fun day. By dinner time i had locked myself and my youngest son in my room and let his father try and get my son to take one of his klonopin and sit and talk with his Aunt and uncle who i had called over earlier when things were getting out of hand. he did calm down but .......today we went to see his counselor and he proceeded to tell him that i said terrible things about him, refused to help him when he was upset on and on and on. I have talked with the couselor about PANDAS, and he just looks at him and nods his head. I dont think he "believes" in it.

 

Well i just got a call from the counselor who says he feels like DSS (department of social servcies) needs to get involved since things are so bad in the home. I am freaking out. I told the coulselor that Will has rages off and on and we are trying very hard to help him get better with abx and IVIG etc. I am so afaired of what DSS will do. They just wont understand. Can anyone offer the best web site or link that described PANDAS in a simple way so I can print it out and have it when they show up at my door. I know they will think my son is a moody, defient teen and yes at times he is but last night that crazy child was not my son. oh it just never ends.

 

1st) please make many copies...as you hand it to each group/person....so it doesn't "get lost" in aiding your son and as many people as possible know what is going one

2)because you are dealing withe something that the state may rule as mental illness...i like doc k's wording and he talks abour aggression

http://www.webpediatrics.com/pandas.html

 

i hope this helps....there is a documentary somewhere ....about a girl who raged...and in between she's like an angel...and sorry she doesn't want to be that way......if you could find that one....i saw it about a year ago

[Stephanie2]

try www.pandasresourcenetwork.com

 

Go to "healthcare provider info" it gives a good explanation about the ins and outs of pandas and how he can have an exacerbation even without evidence of strep, etc.

 

Is there any chance he has gut yeast/bacteria from chronic abx use? That is what makes my boys most aggressive (ds5 had klebsiella per stool analysis, and ds2 had clostridia - both needed vancomycin to come out of the rages).

 

Stephanie

My son has been going down hill again this past week. Yesterday from the minute he woke up until midnight he was defient, aggressive, swearing, throwing things. All in all a fun day. By dinner time i had locked myself and my youngest son in my room and let his father try and get my son to take one of his klonopin and sit and talk with his Aunt and uncle who i had called over earlier when things were getting out of hand. he did calm down but .......today we went to see his counselor and he proceeded to tell him that i said terrible things about him, refused to help him when he was upset on and on and on. I have talked with the couselor about PANDAS, and he just looks at him and nods his head. I dont think he "believes" in it.

 

Well i just got a call from the counselor who says he feels like DSS (department of social servcies) needs to get involved since things are so bad in the home. I am freaking out. I told the coulselor that Will has rages off and on and we are trying very hard to help him get better with abx and IVIG etc. I am so afaired of what DSS will do. They just wont understand. Can anyone offer the best web site or link that described PANDAS in a simple way so I can print it out and have it when they show up at my door. I know they will think my son is a moody, defient teen and yes at times he is but last night that crazy child was not my son. oh it just never ends.

[peglem]

I think you need more than an explanation. Whatever the reason for the rages, they are going to want to make sure you can keep your kids safe. You need a plan you can show them- to reassure them that the situation can and will be handled. This has not happened to me so far, but I have been afraid of it happening since Allie was younger.

[Mary M]

Well i just got a call from the counselor who says he feels like DSS (department of social servcies) needs to get involved since things are so bad in the home. I am freaking out. I told the coulselor that Will has rages off and on and we are trying very hard to help him get better with abx and IVIG etc. I am so afaired of what DSS will do. They just wont understand. Can anyone offer the best web site or link that described PANDAS in a simple way so I can print it out and have it when they show up at my door. I know they will think my son is a moody, defient teen and yes at times he is but last night that crazy child was not my son. oh it just never ends.

 

 

Can't tell you how much I fear this...how will the system understand if the specialists don't. If they spent just a few days in our homes watching how this unfolds they'd be floored. Have the explanations handy, the medical file all together...oh, I'm so sorry for you.

[Fixit]

in trying to find it i found this...maybe this will help too

 

http://www.voiceamerica.com/voiceamerica/v....aspx?aid=44414

[forjpj]

Can you get a doctor or doctors to call someone and maybe inform them of the nature of this disease before they get there? I say get a copy of Saving Sammy and hand it to whoever is in charge...that can at least give the person an idea of what it is like to live with someone with pandas. And having a plan of action for rages written down is an excellent idea. Sound like you already did a good one...called understanding family members, and hid with your other child. I know my brother had to come to our rescue one night, and so did the next door neighbor. I don't know if it would do any good...but maybe offer some of us willing members here as testimony to the nature of the disease, and the struggle it presents to find the right treatment. I know I could certainly verify that.

Good Luck!! Sarah

[forjpj]

Here are a list of some sites I collected for an email for someone. I say give them whatever you have. Doesn't Dr. K or someone have the article referencing the Exorcist movie? Would that help or hurt? It might give them an easy frame of reference for what you are dealing with.

 

pandasnetwork.org

webpediatrics.com - Dr. K's site

latitudes.org/forums (go to pandas forum)

pandasresourcenetwork.org

[Mary M]

My ped called after I read your post. Our experience yesterday made me quite concerned about this exact issue. I explained my fear to our ped and she said if ever someone comes or calls that they should be directed to call her immediately. That as my dd's dr it would be her responsibility to explain. That took some of the weight off my laden shoulders. Hopefully, it can for you as well.

 

BTW-I have the most amazing ped ever...this phone contact was her 3rd today to check on us since our harrowing weekend. She called numerous times yesterday too. She is off on Mondays and Tuesdays, just to put it in perspective. She also emailed me today. I know many of you deal with challenging Dr situations. There are docs out there who believe in this and are trying very hard to help us all.

[Phasmid]

I'm so sorry this is happening to you. I think you are going to need the support of your physican, if you have a PANDAS doc. Ask doc to write a letter directed to the principal and school counselor. You may need to have an attorney on hand as well. My dear friend was visited by child protective services over similar scenario, and it turned into a much larger issue than it should have. Hang in there.

[Rowens1214]

thanks so much for all your input. I have copied Dr, k's page on the symptons. We do have a plan, well lets say i have a plan but my son does not always go along with it. He has written up a plan that we bothed signed for his doctor but when he starts raging nothing seems to help. I hate it so much. My youngest son is afaired of his brother after seeing so many fits. We are sending off the blood work to Dr. cumminham tomorrow. What a way to start of summer vacation. today is the last day of school for my youngest son. I have a feeling its going to be a LONG summer.

 

oh and yes he is on 20 mg of celexa. it does not seem to help at all with his intrusive thoughts. he got very depressed after his last strep and his dr felt like he needed an ssri. i dont know anymore what the right thing to do is. i always question myself and it is exhausting.

[NancyD]

This is something I have always feared! I keep an up-to-date emergency file on hand at all times that includes insurance information, current medications, test results, letters from my DD's doctors describing her medical condition and behaviors, articles that explain PANDAS and treatments, DD's IEP, letter from DD's counselor at school, etc. Anything I might need in this type of situation or in case of an emergency. Brief video clips would also be good.

 

I also took a pre-emptive measure by visiting the police and letting them know about my DD's condition and what happens. It really helped a lot when I needed to call them last month!

 

This is the time you definitely need your doctors and any other team members to rally around and support you!

 

Nancy

[Rowens1214]

I will try and get my dr to write a brief note for DSS when i see her tomorow and hope she will be of furher help if needed. , I have not received a call from their office yet. I imagine it will be tomorrow. I dont think i will answer the phone until i have all my info in place. My son is scared now and I have told him not to worry that everything will be ok. I am so sick to my stomach worrying about all this. Things just have to improve soon.

 

Robin

[mama2alex]

This is my worst fear as welll. I'm so sorry this has happened. I think all the suggestions so far are great, especially getting a letter from your doctor asap and having a lawyer waiting in the wings depending on what happens. Don't wait on either of those.

 

And, IMHO, the counselor should be fired.