So tired, overwhelmed, want to give up, but won't

[AmbersMommy]

Hi,

 

I have been computerless for around a week now, and feel like I have been a month without needed therapy because I couldn't log on to this forum! This could, in fact explain some of my present state. My dd, 6 yrs old, was just diagnosed several weeks ago with Lyme. She got tested through Igenex. She was also diagnosed a few months back with PANDAS by Dr. B. A psychiatrist we saw prior to being officially diagnosed with anything indicated that she thought my daughter was possibly autistic. I am just completely overwhelmed. I don't know when she got the Lyme, but I suspect she has had it since she was 2... or maybe she had PANDAS and the Lyme was more recent. I don't know and it makes my head spin because I don't know what to focus on first Lyme, or PANDAS. We are scheduled for IVIG next week Wed. and Thurs. My husband is going to be gone for the first week of October and I am freaking out. I don't know if I can survive a, "turning back the pages" type reaction if it happens and my husband is gone. I have no family here. I almost completely lost it when she was first hit with her myriad of symptoms, the worst being horrible hallucinations and sleeping only 4 hours a night. My husband was gone when her symptoms started at that time. I think I am a little shell shocked. I just read him the riot act because he has to be out of town for a week. Not logical, I know he has to go for work, but I think I might go insane. I have basically been keeping my dd in the house because I am terrified of her getting sick. She has a tutor that comes to the house 3X a week. I bring her horsbeack riding once a week, and she goes to physical therapy once a week. My daughter is unresponsive to me at times. She acts like a complete lunatic!!!!! She has been hitting her sister a lot lately and doesn't seem to care if I see. She completely does not listen to anything that I ask her to do. No encouragement..positive reinforcement, negative reinforcement..nothing works to correct her behaviors. She was NOTHING like this before. Now she won't do anything for herself hardly at all. She won't dress herself, she won't brush her teeth, but I think that may be a weird sensitivity thing. I am going nuts!!!! I don't feel like I can help her anymore because I, myself am starting to lose it. A psychiatric nurse friend of mine says I have PTSD...Post tramatic stress disorder. I think it would be more aptly named Pandas traumatic stress disorder if this indeed is the case. Nothing is normal anymore. She just acts weird all the time. The choreiform movements have stopped. She does have some weird kind of OCD thing with the way she walks..at least I think that is what it is. She still laughs insanely for no reason I can see, albeit less often. Sometimes for very brief periods of time, maybe less than an hour, she seems almost normal, and then she is gone again. I would almost rather that not happen, because it is devastating every time she goes away again. I don't know how to feel about my child anymore. I hate to admit this, but want to know if anyone else feel this way sometimes. I don't even like her anymore. I know it is not her fault, and I love her dearly, but I do not like her. I desperately want to like her again. I feel like what I am feeling is completely wrong!!! Have any of you felt anything like this???? Am I just being whiny?? I don't think I can just, "suck it up" many more times. I will keep trying for her to the best of my ability, but my ability is beginning to wane.

[texascatholic]

I know how you feel. My DD8 is acting out in similar ways right now. She was diagnosed with PANDAS earlier and we have to check for

Lyme soon. My faith is what gets me through. Hang in there!

 

God bless,

Holly

[peglem]

First of all, what you're feeling is completely normal for a burnt out caregiver! I shudder to remember some of my really dark times. I remember being totally exhausted after several of those all-night sessions and holding my daughter down on the couch so she wouldn't hurt herself, while she beat my back with her fists...and I just broke down sobbing and just let her hit me...and the thought occurred to me that if she died, it would be a blessing. She wouldn't have to suffer anymore and I wouldn't have to keep being such a failure at helping her...and we'd both get some fricken sleep! I hated myself for thinking that...what kind of mom thinks that way? -an exhausted, scared mom who just doesn't know what to do anymore.

 

But, like me, you'll get through it. This forum is wonderful, but it sure would be nice to be able to physically support one another. I'd love to send you for a break for a day or 2 and stay with your child for you. You need and deserve a break.

 

Sending prayers for your continued strength and healing for your daughter and the rest of your family.

[saidie10]

your post makes me so sad i just want to reach through the screen and give you a big ol hug! you will survive this. you love your daughter and you will continue to be the best mom ever who will continue to fight for her. vent anytime!!

[EAMom]

Things will get better. From what I have heard on this forum, Dr. B. is a great doctor (haven't met him personally). He really looks at the whole picture (it's good you know about the Lyme *and* PANDAS). This is so much better than floundering around wondering why your dd isn't "right". You are on the right track!

[T_Mom]

Hold steady--as the moms so far have said, this is a completely normal reaction by any parent going through this horrible illness. It is an insidious sickness that steals time from everyone in the family, and breaks your heart along the way--If your d was diagnosed with Pandas a few months ago, and you have been going through the worst of it since then--you are no doubt exhausted and (like all of us who have been there) scared.

 

Hold steady--The true diagnosis is (in my opinion) made when response to treatment is evident. "Regular" OCD does not go away with antibiotics/steroid bursts/IVIG/or pheresis--

 

This is (hopefully) the worst of it -- hold steady, you can do this.

[LNN]

You're far from alone in feeling this way. I am a minority experience on the forum, as we had a negative experience post-ivig (June 2010) and are only now exploring an indeterminate lyme result. Perhaps IVIG will give you a positive response without bad stuff. I don't know your insurance or financial situation, so I don't know if postponing the IVIG until after your husband returned is an option. or perhaps having a family member stay with you while he was away so you'd have help?

 

Are you treating the Lyme as well? Managing both diseases, plus a post-ivig recovery, is a lot to ask of someone to do alone for a week. I'd either try to arrange for additional adult support that week or consider re-scheduling the IVIG until after the lyme was being addressed somewhat. Your are a super mom, but none of us are SuperMom. You need to have a medical treatment plan/timing that supports everyone in the family, not only the patient.

 

I know I'm in the minority on this, so feel free to take my comments with a grain of salt. Some have an easy time after IVIG. But I'd hate for things to really fall apart on you just because you felt obligated to do something next week. Given the number of people waiting for IVIG, I don't think it would be a problem filling your spot if you postponed.

[lyme_mom]

Hi,

 

I have been computerless for around a week now, and feel like I have been a month without needed therapy because I couldn't log on to this forum! This could, in fact explain some of my present state. My dd, 6 yrs old, was just diagnosed several weeks ago with Lyme. She got tested through Igenex. She was also diagnosed a few months back with PANDAS by Dr. B. A psychiatrist we saw prior to being officially diagnosed with anything indicated that she thought my daughter was possibly autistic. I am just completely overwhelmed. I don't know when she got the Lyme, but I suspect she has had it since she was 2... or maybe she had PANDAS and the Lyme was more recent. I don't know and it makes my head spin because I don't know what to focus on first Lyme, or PANDAS. We are scheduled for IVIG next week Wed. and Thurs. My husband is going to be gone for the first week of October and I am freaking out. I don't know if I can survive a, "turning back the pages" type reaction if it happens and my husband is gone. I have no family here. I almost completely lost it when she was first hit with her myriad of symptoms, the worst being horrible hallucinations and sleeping only 4 hours a night. My husband was gone when her symptoms started at that time. I think I am a little shell shocked. I just read him the riot act because he has to be out of town for a week. Not logical, I know he has to go for work, but I think I might go insane. I have basically been keeping my dd in the house because I am terrified of her getting sick. She has a tutor that comes to the house 3X a week. I bring her horsbeack riding once a week, and she goes to physical therapy once a week. My daughter is unresponsive to me at times. She acts like a complete lunatic!!!!! She has been hitting her sister a lot lately and doesn't seem to care if I see. She completely does not listen to anything that I ask her to do. No encouragement..positive reinforcement, negative reinforcement..nothing works to correct her behaviors. She was NOTHING like this before. Now she won't do anything for herself hardly at all. She won't dress herself, she won't brush her teeth, but I think that may be a weird sensitivity thing. I am going nuts!!!! I don't feel like I can help her anymore because I, myself am starting to lose it. A psychiatric nurse friend of mine says I have PTSD...Post tramatic stress disorder. I think it would be more aptly named Pandas traumatic stress disorder if this indeed is the case. Nothing is normal anymore. She just acts weird all the time. The choreiform movements have stopped. She does have some weird kind of OCD thing with the way she walks..at least I think that is what it is. She still laughs insanely for no reason I can see, albeit less often. Sometimes for very brief periods of time, maybe less than an hour, she seems almost normal, and then she is gone again. I would almost rather that not happen, because it is devastating every time she goes away again. I don't know how to feel about my child anymore. I hate to admit this, but want to know if anyone else feel this way sometimes. I don't even like her anymore. I know it is not her fault, and I love her dearly, but I do not like her. I desperately want to like her again. I feel like what I am feeling is completely wrong!!! Have any of you felt anything like this???? Am I just being whiny?? I don't think I can just, "suck it up" many more times. I will keep trying for her to the best of my ability, but my ability is beginning to wane.

 

Have you seen a llmd? Given how poorly your daughter is doing you might want to wait on the ivig until the lyme protocol has a chance to start working. From what I understand the ivig is not as effective if the lyme infection is not under control. Hopefully you have seen a llmd who has your daughter on the right combination of antibiotics for lyme and possible coinfections.

[Mary M]

Yes, as the others have indicated we have all been through the dark days, the fear, the loss...to look at our child and feel as though we don't even recognize him/her is devastating. I distinctly remember not wanting to call her by her given name as that was no longer who she seemed to me. Between the sleep deprivation, the behaviors, the sensory issues..it is all too much and too painful. I hope that someday our network will be able to create a means to provide in-home support during exacerbations as well as post IVIg. Until then, please know you are not alone and we are all there for you.

Mary

from Michigan

[philamom]

Ambers Mommy-

I feel the same way--very overwhelmed. You are not alone. There are so many times I wish my daughter and I would just up and disappear. But I keep reminding myself she will get better! I also have a husband who travels a lot for work (2 weeks a month). It's very hard and draining. Try and reach out to all who will support you. My daughter had two IVIG's with Dr. B and then received a positive lyme result. We see an llmd next week and have decided to do one more IVIG to help her fight any illnesses (including strep) she will get in the fall. It's when she usually catches everything. I'm terrified also! What is the thing your daughter does when she walks? My daughter used to do a knee bend after every forth step...I would tell people she is exercising. Hang in there...and yes, at times I also don't like my daughter, even resent her...but then I tell myself it's not her fault. It will get better...hang in there. Hugs!

[AmbersMommy]

Thank you everyone. The first thing I did this morning after feeding my kids and giving the diabetic cat her shot was to log on and read this forum. I was so hoping there would be at least one reply. Thank you, thank you, thank you. I really needed and still need the support. I have a little more steam thanks to you all! Now I have to try and track down some results from Quest on the possible co-infections to Lyme. We haven't started to see a LLMD yet. I am going to start with her pediatrician and see how much experience she has with treating Lyme. The Azithromycin has helped some of the Lyme symptoms...I think. Can't really sort out what is a Lyme symptom and what is a PANDAS symptom. The antibiotics are helping though. My daughter's weird walking thing is that she stomps sometimes, and sometimes she just walks one way, turns around walks back and continues doing that for a little while. I have thought about postponing the IVIG because my husband is going to be out of town. I am still thinking about it. It seems like a heavy decision to make because the physicians don't even know how it works, so consequently who knows what postponing will do to her prognosis..help it?, hurt it?. I am going to call my mom and see if we can fly her in for the week. It should have dawned on me before to try and do this, but my brain is a little addled. Thanks for clearing up my brain a bit!!! Good luck to all of you, and thank you again for all of your support! It is soooo very much appreciated. We should have a get together sometime in the future...perhaps when this is all more of a memory than a terrible struggle. Vegas anyone???

[cobbiemommy]

Dear Ambers Mommy, please know that you are not alone. There were times when I just wanted to run away from it all or find a way for my son and I to get to heaven and leave all of this behind. Thankfully, I broke down in my doctor's office and asked for some help. Talk therapy and antidepressants can be very helpful. Please don't see them as any sign of weakness if you use these coping tools. Hopefully they are treating your child for the Lyme right now, because no matter what your child will need to be treated--so why wait? We had a wonderful IVIg experience, but we did not know about the Lyme and Bartonella and when they put DS on maintenace antibiotic dose he went downhill very fast. You are in a better position because you already know about the Lyme and can be treating your child accordingly. God bless you and I hope you feel his loving arms around you in this dark time.

[philamom]

Thank you everyone. The first thing I did this morning after feeding my kids and giving the diabetic cat her shot was to log on and read this forum. I was so hoping there would be at least one reply. Thank you, thank you, thank you. I really needed and still need the support. I have a little more steam thanks to you all! Now I have to try and track down some results from Quest on the possible co-infections to Lyme. We haven't started to see a LLMD yet. I am going to start with her pediatrician and see how much experience she has with treating Lyme. The Azithromycin has helped some of the Lyme symptoms...I think. Can't really sort out what is a Lyme symptom and what is a PANDAS symptom. The antibiotics are helping though. My daughter's weird walking thing is that she stomps sometimes, and sometimes she just walks one way, turns around walks back and continues doing that for a little while. I have thought about postponing the IVIG because my husband is going to be out of town. I am still thinking about it. It seems like a heavy decision to make because the physicians don't even know how it works, so consequently who knows what postponing will do to her prognosis..help it?, hurt it?. I am going to call my mom and see if we can fly her in for the week. It should have dawned on me before to try and do this, but my brain is a little addled. Thanks for clearing up my brain a bit!!! Good luck to all of you, and thank you again for all of your support! It is soooo very much appreciated. We should have a get together sometime in the future...perhaps when this is all more of a memory than a terrible struggle. Vegas anyone???

I'm sorry...but in my opinion, I would not trust Quest testing for lyme and lyme co-infections...there is a lot of false negatives. Can you possibly run Igenex? I think having your mom over to help is a great idea. We actually now have a bedroom for my mom. Hang in there!

Edited September 10, 2010 by philamom

[airial95]

I'm glad to hear that you're doing better. I too was having that kind of night last night, and purposely stayed off the forums because I was too mentally exhausted to even deal with typing.

 

You're really not alone with how you feel. Last night, after a particularly trying day with my almost 3 yo PANDAS son, I went into his room after he was sleeping and just sobbed. I cried because I felt guilty - not because I feel like I'm not doing enough to try to help - but because looking at that calm, littel angelic face, I felt terrible about all of the horrible things going through my mind druing the battle that was yesterday (and the days before...) I hated myself for not being a good enough mother to find the patience and strength to deal with this. Looking at him quiet and peaceful I felt he deserved better than what I could give. It's not his fault his "brain is sick" (as he calls it).

 

And just like you - it makes it harder to deal with after seeing those flashes of "normal". We've been at about 85% better (which at his age - is like having a very difficult 2 year old). I'd been on the boards the last few days on the azith threads talking about how we got there, our doses, how long it took, etc. really believing we were seeing a light at the end of the tunnel. Then we had a bit of a rough weekend, nothing major - some strange pee pee accidents and some Jeckyl/Hyde modd swings. Daddy was feeling under the weather so we thought it might be a reaction to that. Then Tuesday after school he became a violent lunatic - attacking anyone within arms reach of him. Had a very rough day at school Wed - and fortunately we already had appts with the pediatrician and Dr. Murphy that day so off we went. When the pediatrician noticed he was having allergy symptoms - the lightbulb went off - okay, THAT's why he's acting off. But when he completely lost it in Murphy's office, even with a neg strep test she upped and changed his abx. Yesterday, at school - his teacher broke down and cried because she'd never seen him this bad and she felt helpless. They called me to tell me what was going on - he was refusing to wear his clothes and unrinating all over the classroom - not to mention the violence. My husband is out of town too - so dealing with this alone was a little more than I had in me last night.

 

PANDAS has taken so much from all of us, it's affected our non-PANDAS kids, our marriages, our jobs/careeers and other relationships as well. And as the moms - for some reason we take the brunt of it all. We feel beaten up, helpless and sometimes worse. But when I woke up this morning - I somehow found the strength to deal with the demon that has possessed my child, just like all of us do.

 

I hope that you continue to find and tap that strength that all of somehow manage to keep finding. I know it's of little consolation when you're feeling overwhelmed - but you're not alone...we're all here with you!

[tired mom]

I want you to know that you are not alone about all the feelings you feel. I used to tell my mom at times that my daughter brought me no joy and then cry because I felt so quilty for saying that. I love her dearly but sometimes it is so difficult to seperate the illness from the child. When those moments of normalcy are there it makes it so much more difficult to go back to all the insanity, I am glad you feel better and know we are there for you for a shoulder to cry on. God Bless!