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

[Lori Ann]

You are not alone. I am going through the exact same thing with my ds7. I feel the same way as you. I think it is very hard to have such a wonderful, healthy child disappear before our eyes. It is like we don't see our child anymore in the new person they have become and we are desparately trying to find them and bring them back. I don't know how else to describe it, but it is a grieving process we go through every day. I keep telling myself that my baby is in there and he wants to come back to me and this is what keeps me going every day. As loving parents we continue to fight no matter how frustrated or tired we become because we will do anything to save our children and their future. My husband has been working away from home for the last several months, making this whole experience that much more difficult. I just pray that one day we can celebrate the return of the child we once knew and can start living once again.

[Priscilla]

I thought about posting this myself just last week. I know others must feel it, but you always wonder if you are thinking worse things about your child than everyone else. I used to long to come home from work to see her, and lately, I have just wanted to stay at work. I have caught myself so angry at her, you would think we were 2 strangers in a cat fight on the street (she is only 8!!!) I mourn the loss of these precious years, I fear we will finally get through this, only to enter the drama of the teenage years. This is supposed to be the good times. We are 6wks post 1st IVIG and 2 wks post 2nd. I have to say the last 2-3 days I have seen improvement. The rage is still there, but she is slowly coming back, and the good moments help me to see that she is a precious girl trapped in a sick body. I know your sadness, frustration for the behavior, you work so hard to make sure your child is polite and ethical, then they do the exact opposite. Keep your chin up and think about the accomlishments, It is easy to lose sight of them when you are still struggling daily. I will pray for you.

[Tamistwins]

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.

[Tamistwins]

Hi,

 

I feel your pain I feel exactly how you do. I put my whole life into my kids, they brought me such joy and now with this devastating illness they bring me much sorrow. I too hate myself for feeling this way but we are only human. How much abuse can a person receive before feeling like this even if we rationally know it is not their fault. My children (twins 7 yr old) recently received IVIG from Dr. B's office. Louise the nurse there is great with the children. Feel free to email me if you would like to talk.

 

Good luck,

Tami