I don't know what to do anymore..

[lmkmip67]

I am sorry I don't reply to a lot of threads. I am so busy trying to run a business and take care of two kids. Ian has been struggling with bed time every single night this week. I try to be patient, I move to yelling to just leaving him screaming until he falls asleep. he is 7 and I shouldn't have to do this every night. It is going on 10 p.m. and he has been screaming for an hour. He needs this said that way, that said this way, and then said 10 times, blankets up a certain way, etc. It goes on and on and on. I need some down time. I need him to go to bed at a reasonable hour. I will be up until after midnight working because he has been up for the last 1 1/2 hours screaming. I know he is struggling. It breaks my heart. But at some point I need a break. DH helps, too. But by the end of every night we are both spent. I have tried meletonin. He rages right through it. Benadryl. Same thing. He is on Zith. and Omnicef is it? Two antibiotics. We are waiting on the lyme testing and going to talk to Dr. B in a couple of weeks about IVIG at our next appointment. But I won't be sane by then if this keeps up. he has been a bear for two weeks. I have no idea. He had a bad cold and I got it. But I am getting over it. I don't know what to do anymore. Should I ask for a steroid burst? We did one in Sept and it made such a difference. HOw long is a good length? The last one was maybe 15 days. Motrin helps a little, but he says his stomach hurts. I don't doubt it from two antibiotics and motrin everyday. Poor kid. Poor parents. I need some hope. Somewhere.

 

Lisa

[Dedee]

I don't know if I have answers for you, but gosh I am so sorry that your family is going through this. I don't think there is a right or wrong way to get through the crisis times. Just surviving one day at a time is considered sucess. I would definitely try to get another steriod burst. Hang in there. You are doing a great job for your child. You have already found a wonderful PANDAS doctor. So don't beat yourself up if you wear out occasionally. It's a crazy illness, and it drives us all over the edge at times. I will pray for your family. Let us know how you all are doing.

 

Dedee

[browneyesmom]

Oh Lisa... I am so sorry! I feel your pain and I although our situation with my DD11 is a little different, I know the unrelenting episodes well. I don't know what other meds he is taking, but I understand that SSRI's can make things worse and that the benzo's can too... since we started Risperdal a couple of weeks ago, she has been somewhat better... episodes are not gone, but they do not last as long ... ***AND*** ... she is sleeping! Finally, sleeping!!! Our experience with steroids is that they help some issues, but can compound others. So.... I think that depends on the child. You know what has helped in the past... I'd probably go with what has worked before, but be open to trying something new if you don't see good results.

 

Oh.... hey, is he taking any probiotics? Some kids can get yeast in the gut and I understand it can make things much worse... so, may want to check out that too... he may need Diflucan.

 

My husband just about insisted that I get my nails done and a massage this weekend while she is with my ex. I resisted at first, but he is right... we have to take some time to care for ourselves, even when we think we can't possibly with the war zone & constant crisis in our homes. I hope you will find a way to do this for yourself. I know, it is very hard. Hang in there & please take care of yourself - we see Dr. B on the 16th ourselves.

[RNmom]

I am so sorry that you and your boy are going through this. Waiting for test results while symptoms rage on is a very tough situation. I know many of us here have been through this same horrible intensity and would read your post with a great deal of empathy.

 

I wish I had some definitive suggestions. Can you call his pediatrician, or the doctor treating him, and ask for a very light medication just to help him settle down at night? Maybe something that he would not have to take all the time - just when things are bad.

 

There are people on this forum who know a lot about alternative medications that are calming. Maybe they will respond here.

 

Based on our experience with a positive Lyme test, after diagnosis and treatment for PANDAS, I would hold off on the steroids until the Lyme test comes back. If he does have Lyme the steroids will depress the immune system and allow the Lyme to proliferate. Can I ask which Lyme test you had and when?

 

Try and "hold all plans loosely" until test results are back and you see Dr. B. You will get through this one step at a time.

[browneyesmom]

Lisa... I lost it and completely had my own meltdown in the middle of one of my daughter's rage episodes earlier this week - I posted about it. It happens to all of us... please do not be hard on yourself. You are working so hard right now and under a lot of stress. When my ex spoke with Dr. B after I made an appt with him, my ex told me that he was very reassuring, told him that this is 100% treatable with no lasting damage to the brain. There is hope... it's in finding the underlying cause and treating it.... you will get there. Be kind to yourself and rest when you can... the rest can wait (yeah, this from a woman who has baskets of laundry to be put away all over the upstairs! ha!) Hugs ♥

[browneyesmom]

I should have noted that the dosage of Risperdal that my 68 pound daughter is taking is quite low... she is on 0.25 mg, twice daily. It has helped her. We are avoiding steroids due to the immune system suppression and she's already deficient there.

[eljomom]

I am sorry but I wonder about the 100% treatable---does he mean "curable?" From what I have heard on the forum, not many people here (and maybe it's because the 100% treated cases move on and don't need a forum...) get 100% cure??? I am really curious about this statement---can you elaborate?

[lmkmip67]

I am so sorry that you and your boy are going through this. Waiting for test results while symptoms rage on is a very tough situation. I know many of us here have been through this same horrible intensity and would read your post with a great deal of empathy.

 

I wish I had some definitive suggestions. Can you call his pediatrician, or the doctor treating him, and ask for a very light medication just to help him settle down at night? Maybe something that he would not have to take all the time - just when things are bad.

 

There are people on this forum who know a lot about alternative medications that are calming. Maybe they will respond here.

 

Based on our experience with a positive Lyme test, after diagnosis and treatment for PANDAS, I would hold off on the steroids until the Lyme test comes back. If he does have Lyme the steroids will depress the immune system and allow the Lyme to proliferate. Can I ask which Lyme test you had and when?

 

Try and "hold all plans loosely" until test results are back and you see Dr. B. You will get through this one step at a time.

 

We did the total panel from Igenex. I forget all the names and am too tired to get up and look. lol We did the whole thing, coinfection panel and the western blot? Is that it? He ordered the thing. My checking account whined, but we have to find out.

 

I know we will get through. It is just so hard some days.

[kimballot]

Lisa -

 

I am so sorry you are going through this. When your child is in exacerbation it feels like there is no end. It is truly exhausting and I have no doubt that you are a very patient person.

 

My son has done well with omeprazole for reflux. I find this helps with the stomach pain with antibiotics. I give it to him in the morning - before he gets out of bed (about 1/2 hour before breakfast). You might want to try something like that to help his stomach if it is OK with his doctor.

 

I wish I had more to offer you. I can only tell you that last year at this time my son was very, very sick and I really thought there was no end in sight. Today, he came home from school and said he had a good day (he has been having some not so good days recently, but his antibiotic was changed yesterday). Tonight he went to bed without complaining. Looking back, we've had a rocky year, but I'll take that over the desperation I felt a year ago.

 

So.. I guess I am just saying to hang in there and keep on fighting. You will get there... and please let us know how things are going. I will be looking for your posts.

[lmkmip67]

Thanks everyone. Brings tears to my eyes. I think I am just really tired from kids being home from school so much due to snow and trying work.

[browneyesmom]

I am sorry but I wonder about the 100% treatable---does he mean "curable?" From what I have heard on the forum, not many people here (and maybe it's because the 100% treated cases move on and don't need a forum...) get 100% cure??? I am really curious about this statement---can you elaborate?

 

I wish I knew as I have seen similar results here as well! Although, I can say that after her T/A in August 2009, she was so much better that I stopped posting for months until recently when she could not clear the strep for months and things became so severe. Dr. B spoke with my ex when I was in the ER with our daughter, so I heard that second-hand. It is one of the things I plan to ask him about next week!

[adkmom]

Lisa,

 

So sorry to hear everything you're going through! We've been there with the screaming at bedtime...although I'd have to admit not for an hour at a time. You must be exhausted. My DS4 diagnosed with Pandas and just found out he was positive for Lyme. He had a steroid taper and we saw improvement and Dr. B didn't think we'd get a positive Lyme result but we did. We're hoping now that with a Lyme treatment as well, we'll see his aggression diminish. You don't yet have all the tests in, so hang in there. I wouldn't hold back though. Call the doctors, even Dr. B and let them know what's happening. They should be able to prescribe something fairly mild for him to sleep. I know every day can seem like an eternity. We're all with you. Hang in and have hope.

 

adkmom

[lmkmip67]

Lisa... I lost it and completely had my own meltdown in the middle of one of my daughter's rage episodes earlier this week - I posted about it. It happens to all of us... please do not be hard on yourself. You are working so hard right now and under a lot of stress. When my ex spoke with Dr. B after I made an appt with him, my ex told me that he was very reassuring, told him that this is 100% treatable with no lasting damage to the brain. There is hope... it's in finding the underlying cause and treating it.... you will get there. Be kind to yourself and rest when you can... the rest can wait (yeah, this from a woman who has baskets of laundry to be put away all over the upstairs! ha!) Hugs ♥

 

 

thanks! The house stuff does wait. LOL It is the business stuff that I need to tend to. I own my own business so have 3 babies in the end.LOL The two kids and that. But it still lets me be flexible to take him to CT for appointments, so I can't complain.

[MomWithOCDSon]

Lisa --

 

Sorry for what you're going through; does it help to hear another "Been there, done that, but it WILL get better"?

 

The only suggestion I can add to everything already noted here is, have you tried Valerian Root? You can find it at the local drug store and it definitely took the edge off the our DS's anxiety and helped him to relax. So, we would dose both the Valerian Root and the Melatonin about a 1/2-hour before bedtime; the Valerian relaxed him so that he could fall asleep initially, and then the Melatonin helped him to stay asleep.

 

Also, you've said you've tried Melatonin and it didn't work; have you tried stepping the dosage up a little bit and see what might happen? We started at 1 mg. and have tried as much as 3 mg. (our DS is nearly 14, 140 lbs., but I'm not convinced age or weight is much of a factor here . . . maybe metabolism is really the determining factor?). We've settled on a 2 mg. dose as it seems to foster a full night's sleep without causing any lingering drowsiness the next morning.

 

Hang in there!

[Stephanie2]

psych meds. this from a mom who took 5.5 years of ###### to break down and try them as needed. what a relief. it is a sad day when you give your child psych meds, but it would be a sadder day when you decide to check out of the game cuz you can't take anymore, KWIM?

 

With that said, I am so sorry and I am right there with you as my ds2 has been screaming bloody murder for 3 nights. I have only used tenex on him once or twice, tonight was almost "thrice" (in the words of conan o'brian LOL).