Update on Pixie :(

[pixiesmommy]

Pixie had the ER visit I posted about but was released into our care later that night w/o treatment. She is having random screaming and crying jags- the longest one being 2 hours of animal screaming 2 nights ago at bedtime. School said she looked and acted unwell and they can't have her there. She threw the contents of her desk out of the classroom door yesterday and then today attacked her best friend at recess, kicking and hitting. That was the last straw.

 

My husband is a teacher and is taking 2 weeks of sick leave, maybe more, while we figure out what to do. Dr K moved our appt up a day to tomorrow to talk about IVIG. How long is the typical wait list???

 

She is in bed now screaming that the inside of her nose hurts. We just don't know what to do with her. Dr K doesn't want her on any psychotropic drugs, so we are dosing her with Benadryl and Motrin at bedtime, but the rest of the day??? Our insurance covers 1K/month for a home caregiver, but that won't go very far.

 

What do you do with your child when they are so violent or manic or whatever that you can't control them? We have a 2 yr old that we have to keep safe too, and I cannot have both of them alone in my care.

 

Just so confused, upset and heartbroken tonight. We were actually doing pretty well on Abilify and then she had the diagnostic 5 days of steroids and BAM.

BUT it's the time of year too... tomorrow is her birthday and we go through a fever and behavioral prob period this time each year.

[thereishope]

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Edited October 18, 2016 by vickie

[dee45]

Hi,

 

I am so sorry you are going through this. I hope your appointment goes well with Dr. K and he can help your daughter. Hang in there I will say a special prayer for you tonight.

 

Deanna

[acdrobert]

I will definitely say some prayers for you and your family tonight. I too and so sorry you have to go through this.

My son's PANDAS also started a few days after his birthday when he turned 7. He abruptly starting ticcing at 5: 30 PM an hour after the last friend left his birthday party. Is that a strange coincidence or what ?

 

 

I am so sorry you are going through this. I can relate to the birthday problem. My son's PANDAS surfaced on his 5th bday. To be exact, it was at his party.

 

When my son went through his animalistic rages, we left in his room when he was calm if that's where he wanted to be. He even ate some meals in there in the floor.He'd just sit there doing nothing.We let him watch tv which also kept him calm. That was one thing that would snap him out of a rage. For some reaosn, he never acted out at his siblings. When he would start up, I would tell them to leave the room or I would drag Josh him into his bedroom. I didn't want them to see him like that. His siblings (specifically my then 2 year old) also watched a lot of dvd's to keep them occupied when I was busy with my PANDAS child.I felt bad about it, but at that moment, Josh was the one who needed me the most.

 

At times, I would tackle him to the floor and hold him down. Sometimes, I would bear hug him from behind and rock him. I would constantly just say over and over "Mommy loves Josh".

 

I'm a stay at home mom so I didn't have to worry about a caregiver. I just lived in ###### for months.

 

Good luck with your appt. Believe and know that somehow your child will get better.You must believe that in order to find your own strength.

[sf_mom]

Wishing you all the best until you can get proper help. We'll be in Chicago getting IVIG with Dr. K on the 16th..... Hope to see you there

 

-Wendy

[michele]

Interesting about the steroid and Abilify and the rage. We had the same reaction. I was left wondering does this mean it is not PANDAS? Is it Tourettes, or Aspergers? I am very interested to know what Dr. K does in your case. We saw Latimer and she said looks like he is anxiety and OCD. I am left confused. My son stayed on the steroids three weeks which was ######. He is still having meltdowns three weeks later. His behaviors have been out of control since June 4th. He was sick June 4th with the flu. Coincidence? I have wondered what to do? He kicks holes in he walls, hits and kicks my new car, throws toys at the walls, breaks his glasses. Totally destructive and mean. He hates us, wants to kill us, tells us to shut up and calls us losers everyday. I have 4 kids. My other kids are also very affected. My two year old now tells us to shut up and throws mean fits. Our life has been torn up side down much like yours. Did you stop the Abilify? We weaned to Risperdal last week. Sill angry and raging but we are only up to .50mg where he used to take 15mg Abilify. My son chooses not to show this at school? How does he have such control? It makes it seem we are not disciplining him because nobody can believe he is like this at home only. Please keep in touch. Call me and we could talk since we are dealing with similar lives. We phone consulted with Dr. K but I have not followed up.

 

Michele

Wishing you all the best until you can get proper help. We'll be in Chicago getting IVIG with Dr. K on the 16th..... Hope to see you there

 

-Wendy

[peglem]

We went through @ 5 years of these horrible rages before we even knew about the strep or the PANDAS. Psych meds either made it worse or did nothing at all. We were at the point where the safety of others in the home was at risk and considering placing my daughter outside of the home. I asked her pediatrician for tranquilizers....He reluctantly prescribed valium (I knew it could be addictive, but at that point I didn't care if she was addicted or not, as long as she could get some respite from these horrible rages.). I've used it sparingly, and she did not become addicted. She also does not become sedated on it and it helps.

 

I so understand what you and your child are going through. I'm so sorry. Sending prayers up for you to find solutions.

[EAMom]

You are in a crisis and school is a really low priority for pixie right now. Just worry about helping her heal. The good news is you are heading towards Dr. K. There is an end in sight and things will get better. Hang in there! Keep up the Azith. I would also increase the Advil (Motrin) to 3x daily while things are bad.

[amy s]

I haven't read the responses to your post but I wanted to tell you that you are on the right track. The sooner you get the IVIg, the better. My dd eventually got suspended from school multiple times that I just kept her home until she was well. She would have 4-5-6 hour rages on a regular basis and nobody and nothing was safe. We had to hold her down for that entire time. Ask for homebound school services so she doesn't get too far behind while she is getting better. Get IVig as soon as you can and if Dr. K wants her off psych meds do everything in your power to get her off them.

 

Hang in there. It is horrible and I know you are going through a terrible time right now. I am hoping that your child and family will get back to some sort of normalcy as soon as possible.

[melanie]

I haven't read the responses to your post but I wanted to tell you that you are on the right track. The sooner you get the IVIg, the better. My dd eventually got suspended from school multiple times that I just kept her home until she was well. She would have 4-5-6 hour rages on a regular basis and nobody and nothing was safe. We had to hold her down for that entire time. Ask for homebound school services so she doesn't get too far behind while she is getting better. Get IVig as soon as you can and if Dr. K wants her off psych meds do everything in your power to get her off them.

 

Hang in there. It is horrible and I know you are going through a terrible time right now. I am hoping that your child and family will get back to some sort of normalcy as soon as possible.

 

 

We spent 1/2 the year on home instruction He had to go to work with my husband it was a mess what state are you in ? There is agencys that can help when you are in crisis I called them a few times they were helpful for us we are in NJ best wishes this will get better Pick your battles until..

[Suzan]

My heart is with you guys. I hope you get the help you need quickly.

 

Susan

[thereishope]

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Edited October 18, 2016 by vickie

[colleenrn]

Pixiesmommy-

I forget- how much Zith is she on? I would definitely give her the Ibuprofen every 6 hours while awake. Hang in there! I am thinking of you!

Colleen

[Chemar]

Just so confused, upset and heartbroken tonight. We were actually doing pretty well on Abilify and then she had the diagnostic 5 days of steroids and BAM.

 

so sorry to hear of all this....my heart goes out to you and I do hope and pray things stabilize soon

 

I am really deeply concerned at the way the steroid burst is used as a diagnostic tool so frequently

 

 

 

my husband has TS and had a steroid burst for pain after a car accident, despite my warnings to him and the doctor

It made him totally manic and brought out tics and OCD that he hasnt had since childhood, and caused him cognitive loss, which has not improved even after a year.

 

I know that steroids can greatly benefit some kids with PANDAS, but for others, especially if they have underlying TS, it can be a major problem.

[pixiesmommy]

Thanks for all the replies. I would definitely appreciate being able to talk to any of you by phone who have BTDT. We are in IL and (thankfully!) just half an hour away from Dr K. I wish I had know he was here and about PANDAS years sooner.

 

Pixie is now completely med-free. We weaned the Abilify out about 2 weeks ago, and the Prozac about 2 weeks before that. She has what the psych called EPS because she started shrugging her shoulder and we have been told she can't be on certain psych meds anymore. I'm not "pro" meds anyway, but we may have to do something in the short term to just survive her wrath.

 

We got the formal PANDAS diagnosis the night she went to the ER, by phone with Dr K, just based on her history and the steroid burst 5 day diagnostics/14 day observation that we did. She is not on any antibiotics at all. Nothing.

 

I find it ironic that she was in school ONE day (Friday) and complained immediately of sore throat and BAM behaviors started up. She is in a private school for gifted children, and they can dismiss her at will, so technically they don't have to work with us at all... and since we have paid them the full tuition and cant' get it back, I doubt they will, but am hopeful. If not, we will look into public services.

 

Thank you all for feedback. I think it's ironic too that birthdays are involved... what is the connection there? Something triggering in the brain? One of her therapists last year said she thought the fevers were a physical symptom related to PTSD and wondered if someone had abused her. Does the brain remember stress from the birth canal? (Her birth was uneventful from my end, though I was given something in my IV to help her relax since she was slightly turned to the side...)

 

Just speculating, obviously!!!

 

Manda