Bad Morning

[dcmom]

Julia is on day 14 of the steroid burst. Tommorrow she starts to taper off for 2 weeks. She had been doing great! No temper tantrums, eating, wearing panties and all types of clothes (still no socks, though), using the bathroom without much stress, very happy. Not 100%- but on her way. She did great the first day of school. Yestarday, the second day of school she whined a tiny bit when we said goodbye- no big deal. Today, day 3, I had to drag her to school crying, and I promised to go back at lunch time and pick her up, if she doesn't want to stay, in order to get her to go in. (This was what we did last year under the guidance of a psychologist. It worked almost every time).

 

Sigh. This caught me so off guard since she has been doing well.

 

When your children did the steroid burst- did all of their symptoms go away by the 2 week mark?

 

When your child has separation anciety, what do you do? I am having a hard time keeping my strength- the mommy in me wants to take her home and spare her the stress and tears. Before pandas, (although we never had this issue) I would have said she must go to school- no matter what. Now it is so hard for me to figure out what is right. Last year, during the worst couple months, she had extreme sep anxiety every day- nothing helped. It was devastating to her. Once she did the 30 days of zith, and things were under control- it was gone. I kind of feel that strategies a parent would use with a non pandas child- are not necessarily helpful in the case of pandas. Any stress seems to throw her over the edge.

[dee45]

Hello,

sorry to hear bout your morning. Howl long after you leave does it take her to calm down? some if it may be normal seperation anxiety I know how hard it is when they are crying --you just want to pick up them and make everything better. why don't you see how the next few days go, hang in there.

 

Deanna

[Megs_Mom]

We had to do ERP therapy to get over the Seperation Anxiety - I feel like she doesn't make it down to baseline without therapy in combo with Zithro. I think in the future, this may lead us to IVIG. However, with therapy (I think of it as retraining the brain) she does get down to baseline again. Until this time, the Zithro was given "coincidentially", so it's a little hard for me to say her pattern with authority. But the ERP does not hurt, and it seems to get rid of residual OCD and seperation anxiety that seem to be more habit based or situationally triggered.

 

Julia is on day 14 of the steroid burst. Tommorrow she starts to taper off for 2 weeks. She had been doing great! No temper tantrums, eating, wearing panties and all types of clothes (still no socks, though), using the bathroom without much stress, very happy. Not 100%- but on her way. She did great the first day of school. Yestarday, the second day of school she whined a tiny bit when we said goodbye- no big deal. Today, day 3, I had to drag her to school crying, and I promised to go back at lunch time and pick her up, if she doesn't want to stay, in order to get her to go in. (This was what we did last year under the guidance of a psychologist. It worked almost every time).

 

Sigh. This caught me so off guard since she has been doing well.

 

When your children did the steroid burst- did all of their symptoms go away by the 2 week mark?

 

When your child has separation anciety, what do you do? I am having a hard time keeping my strength- the mommy in me wants to take her home and spare her the stress and tears. Before pandas, (although we never had this issue) I would have said she must go to school- no matter what. Now it is so hard for me to figure out what is right. Last year, during the worst couple months, she had extreme sep anxiety every day- nothing helped. It was devastating to her. Once she did the 30 days of zith, and things were under control- it was gone. I kind of feel that strategies a parent would use with a non pandas child- are not necessarily helpful in the case of pandas. Any stress seems to throw her over the edge.

[ShaesMom]

Sorry to hear today didn't go so well. It is so hardbreaking to send have to send them when they are upset.

 

I told me dd teacher's that if the anxiety and tears are still there an hour after dropping her off that they need to call me. I figure it is not doing her any good to be sitting there in school crying in front of everyone.

 

I'd keep a close eye on her-sadly it's possible she may have already picked up something at school.

[thereishope]

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Edited October 18, 2016 by vickie

[Kayanne]

It is so hard to determine how much of their behavior is now learned from the anxiety that PANDAS creates or a direct result of residual brain inflammaion. I agree that when a child is having a PANDAS episode, the traditional methods of dealing with separation anxiety are not helpful, and may even be detrimental.

 

I don't think my daughter had separation anxiety...she did cry in school, and was not able to tell any of us why...we thought perhaps she did miss us. Once we "got it" and stopped being hard on her she seemed much happier at home, but she still cried in school. However leaving us to walk into school was never an issue.

 

I know that for a lot of chldren, separation anxiety is one of the first behaviors that appear in a PANDAS episode...and in our case the first behaviors that we saw (emotional lability, telling on herself, and inability to make a decision, and potty issues) were the last to stop....it's like she healed in reverse.

 

She had a lot of improvemnt, however my daughter's major "overnight" improvement from the steroids didn't happen until we were nearing the end of the fourth week...we only had three doses left and had to use the refill of prednisone intensol. She was exponentionally improving after that....and we didn't want to lose the benifit of the past month, so we asked to extend the steriod...Dr. Latimer allowed two more weeks, and she was about 98% improved by the end....she still continued to improve even after she stopped taking the prednisone (July 18)...now I think she is essentially 100% improved.

 

Of course I think that using pedia-pred (prednisolone) was not as effective as the prednisone intensol. Everything I read says that prednisolone and prednisone are equally effective so I am probably barking up the wrong tree....but in the future, I'll wait a day or two for the pharmacy to order the correct medication.

[dcmom]

Update: Went to school at lunch, and she is fine. Teacher said she is totally fine in class. I am of course, relieved. Thank you all for your support!

 

This is going to be a long year....

[ShaesMom]

Update: Went to school at lunch, and she is fine. Teacher said she is totally fine in class. I am of course, relieved. Thank you all for your support!

 

This is going to be a long year....

 

Glad to hear she is doing better once school starts. I will say you are lucky you can still go to lunch with her. Last year I basically wasn't allowed in the school because any time she saw me she would start crying.

[dcmom]

Sigh.

 

Well the school year begins with a bang! Just got an email, Julia's best friend has strep. Luckily, they are not in the same class, and do not eat lunch together. But, they do play at recess, and hug constantly.

 

Julia is on zithromax 2x a week prophylactically, and tapering off of the steroids. She has been doing fairly well, minus some separation anxiety.

 

Should I do anything? I guess just wait and see...

[colleenrn]

What dose is she on 2x/week? If I knew that my child was with someone with strep, I would definitely bump her dose up to everyday, for at least 10 days. My kids are on daily Zithromax and were exposed to strep a month ago. They reacted very negatively, so given that, I know a flareup can occur while on Zith. You may want to think of bumping up the dose to prevent a flareup.

 

Colleen