I want to give up

[wornoutmom]

Joan:

 

Oh Lord my heart is just breaking for you. I know you have done SO SO much to try and help your son and I know how devastating and terrifying it must be to see his sufferring continuing. I'm going to share something that maybe some on this board may disagre with, but I'm just putting it out there. When ds was sufferring greatly this fall (on abx, tried steroids, post IVIG, in therapy etc etc)we put him on xanax. I was extremely hesitant to do so. My goal was to get him OFF psych meds, not on more. But a few wise folks convinced me that it would be the kindest thing to do to try and see if it could ease his sufferring, if only for a while. He found almost immediate relief, and once we got the dosing right he has continued on it daily. It wasn't a magic pill, but it tamped down the anxiety enough to allow him to function and work his therapy program and start to heal. Xanax can be addicting and can be a serious drug. We had never used it before because it just is not often prescribed for children. But I know your son is older and it maybe worth asking about or thinking about or just throwing in your tool box while he is so ramped up from the IVIG. We are all going after the cause to eradicate this horrible disorder, but I do think it may be worth addressing the symptoms while the body is healing... How many of us take Ibuprofen to ease the discomfort of a fever, even though the drug will do nothing to get rid of the flu...

 

I know you will get through this, but if you need/want to talk call me any time!!

 

-Rachel

[Mary M]

Joan,

 

I so remember feeling just the same way. There are no words to help in the midst of PANDAS crisis. It is unrelenting torture for you and your son. You are not alone, though. I will keep you safe in my heart as healing comes..because healing will come, it will.

 

If you need some homeschooling resources, PM me. We have been homeschooling for many years.

Mary

from Michigan

[MomWithOCDSon]

Joan --

 

Just some more words of support and a cyber hug!

 

I know our boys have quite a bit in common . . . being teenagers and dealing with substantial OCD, etc. I'm so sorry the going is so rough now, and all I can do is echo everyone else at this point.

 

Take care of yourself, too, so that you continue to have the resources to help him as much as you can. If you were my neighbor, I'd offer to stay with him for a while so that you could get out, get some air, see a movie, take a walk, whatever helps you fill up again when you're running on empty. Maybe you have someone in your lives who can help you in that way. Tap 'em . . . that's what friends are for!

 

Much light coming your way!

[Joan Pandas Mom]

Thanks so much guys. I am going to look into these ideas. I have to do something, it can't go on like this. Fixit, I think you are right about the girl tudor! It might help him fight the constant compulsions more too! I'm going to really push the running or walking too, He wanted to do a dvd exercise program, P90X with some of his friends months ago. Maybe I'll get it and see if I can get him into it. We have to get out of this house--were both going to lose it!!!!

[pathfinder]

Joan

 

I am so sorry that your family is going through rough time. I agree with momto2pandas regarding mid teen years being worst time for pandas person. I don't know your religious background but I would also look into church school options. There are small schools (usually K-12 all mixed in) located right in the churches. google Christian schools in your area and they have home schooling options as well.

The reasons I recommend these type of schools for pandas kids are

1)good portion of kids in small Christian school are drug free and nice

2) their curriculum is easy and personalized so kids always have chance to catch up with them in later yrs. ( but very limited and out dated)

3)you could choose home schooling option through these schools-- once again they are very easy (except bible) and don't tax pandas child's already suffering brain.

4) they empathize on moral and behavior stuff that pandas kids can really benefit from.

5)they are inexpensive

 

There are many cons as well but I believe pros out weight them ( IMO)

 

I put my son through many many schools last 12 yrs ( montessori, private school, military school, public school, boarding school ) and I found small Christian schools(his high school yrs) to be most flexible that provided understanding and compassion we so needed.

The best part of all is that my son was given chances to make up for the grade ( He had so many ups and downs as most pandas kids do)

And now my son has applied to 7 of 4yrs college and he stands very good chance of getting admitted to most of them . ( one more SAT test to tackle)

This could not have been possible if my son went to public school. Think about it

cyber hug from Diamond Bar

Edited December 8, 2010 by pathfinder

[Debbie1]

Joan,

 

I am so sorry you are having such a rough time. When was the second IVIG done and how did he do between #2 and #3?

 

My son is 6.5 weeks past IVIG #3 and is doing well now, but the first month was rough. Prior to IVIG #3 he had a month long sinus infection, which set off his symptoms. His strep and mycoplasma titers were up just prior to IVIG and I think that made the post IVIG experience worse for him. It took a month, but his symptoms did calm down. He is doing much better now.

 

Hoping things calm down for you quickly.

[Joan Pandas Mom]

Thanks again for the suggestions and support. As I am writing DS is standing in almost a frozen position, he has been that way for about 45 min. now. It was 8 weeks since his second IVIG and I think he had a sinus infect. too. Maybe that is what is making it soooo bad right now. It was 5 months between IVIG # 1 and #2. I scheduled #4 for 6 weeks out, but now I'm wondering if that is too soon. I might have someone lined up for a few hours of help soon, BUT his mom told me he got strep a lot when he was a kid. Now I'm wondering if he is a carrier. I hope not, he is 23 and a nursing student. My son knows him a little. I hope it works out. His mom said they eventually discovered the dog had strep and that is why everyone kept getting it.

[browneyesmom]

Oh Joan, I'm so sorry for all you are enduring right now. I was where you are a few weeks ago, just feeling like we have tried everything and nothing seems to be helping dd - and sheesh - all the meds this child is taking! ugh! It was a rough few days, but I rested a lot and came through it with a fresh determination to triumph over PANDAS... or at least, help her have a manageable life!

 

A couple things to consider, if you haven't already (and you may well have, I know)...

 

Our school district has the option of Homebound education - a teacher from the school district comes out to the house to teach the child. It is a greatly reduced number of hours, of course and depends on the grade of the child and what they are able to tolerate. We just received approval for it Friday (her pediatrician had to complete some paperwork for it) and I will sign and turn in the paperwork in the morning for her to hopefully, begin this week. I had been very reluctant to go that route, but eventually, decided we have to reduce some of the pressure on her and need to keep her as current as possible with as normal a life as possible. One of her teachers (we have an outstanding group this year at her new school - middle school now) offered that he would teach her if we are ok with it. Ok??? Oh gosh... would be awesome!!

 

We're also implementing a 504 and accommodations for her... don't know why I had so much trouble at her elementary school - this one is so much better!!! They seem to "get it".

 

We also changed to a different counselor... this one is so much better also! He has talked with us about how the brain works and that when she is upset ... i.e. heading into an episode... there is no pathway to the rational part of her brain - it's blocked by the emotions of the limbic system. He suggested we use calming sensory methods to reach her and help calm her. These have starting showing some signs of being helpful - she was starting an episode this evening and we were able to head it off before it was full-blown.

 

Yes, we do have to care for ourselves and that can be so difficult when we feel we don't have a moment to spare in seeking a resolution toward wellness. Never feel guilty for caring for yourself... we must in order to be here to help our children... and this is a lot for the entire family, so try to keep your own life as "normal" as possible as well. Hugs Joan... my thoughts are with you.