Exhausted

[tu4four]

I know that we are all exhausted from this stuff. However, today I feel like I am at the end of my rope. My daughter hates me; she tells me this every day, along with Her idea that everybody hates me. She can't stand to be near me, wildly wiping off anything that I have to he'd that she has to touch. I know this is OCD, but I don't think that she does. Although she knows that she has OCD. However, she won't take her medicine (and there is a lot of it), and I end up having to count, which she hates and makes her uglier to me, and I often end up having to force her to take it. I have had to be extra firm, even forceful with her as she has operated on the ODD plan for quite some time. I have lost my cool many times over the course of this whole thing. She will tell her younger sister (3) that I am so mean and don't love anybody but myself because I have asked her to do something simple like set off a rage. Anything that happens to her that is bad is my fault. She is not actually raging all the time right now---beating holes in walls, etc., but she is just being mean--to almost everyone at home, but particularly to me. Today when I was trying to get her to take her meds, after I waited for about an hour of her standing with it and saying all kinds of mean things. I went to her and started counting. She spit a big mouthful of water in my face. I know that seems small compared to what it could be, but I am out of ideas. I am exhausted and frankly ready for her to go to a rtc. I have never ever wanted that for her. But I am at my end. My family is in constant chaos, my husband and I are on the brink--in part because this is so draining, and I am trying not to bring these issues to him so as not to push him further over the edge. Any suggestions? Thanks for listening.

[Mayzoo]

No viable suggestions, sorry. I could come up with lots of flowery ideas that sound good, but in reality they are not viable. Feel free to call me tomorrow up until 4:30 pm or Saturday anytime if you want to rant for a bit, hubby will be at work then. We do not have to worry about my kid interrupting us in the background since she totally stopped talking AGAIN

Edited May 2, 2013 by Mayzoo

[pr40]

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.

 

In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.

If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

[tu4four]

No viable suggestions, sorry. I could come up with lots of flowery ideas that sound good, but in reality they are not viable. Feel free to call me tomorrow up until 4:30 pm or Saturday anytime if you want to rant for a bit, hubby will be at work then. We do not have to worry about my kid interrupting us in the background since she totally stopped talking AGAIN

I am so sorry that your kiddo has stopped talking. . I may take you up on that offer tomorrow.....I'll have to see how the day goes. Thanks!

[Mayzoo]

if these are symptoms as they appear to be, treat them like symptoms. I am not sure why you would not go for IVIG.

 

In the meantime, as a bandaid you can try NAC, said to help with rages. for us, getting of gluten and dairy helped somewhat, too.

If you have not already, you can try to be extremely nice when she rages. give her compliments and redirect her mind to something else. it is difficult at first and then it gets easier gradually. participating in her rages is the worst (i am telling this to myself not just to you).

 

I cannot speak for tufour, but my concern with IVIG is that it is a blood derived product and as such would be a very last resort for us. Kiddo's doc has already recommended it at the first visit even before we found she has PI. Now, we also find she had kidney disease of some type, which makes IVIG even a more distant possibility for us.

 

It seems IVIG helps some and does not help others. Also, from my limited understanding, the chance of success is far greater if you have other infections under control before beginning IVIG.

Edited May 2, 2013 by Mayzoo

[Mayzoo]

 

No viable suggestions, sorry. I could come up with lots of flowery ideas that sound good, but in reality they are not viable. Feel free to call me tomorrow up until 4:30 pm or Saturday anytime if you want to rant for a bit, hubby will be at work then. We do not have to worry about my kid interrupting us in the background since she totally stopped talking AGAIN

I am so sorry that your kiddo has stopped talking. . I may take you up on that offer tomorrow.....I'll have to see how the day goes. Thanks!

 

Well, we have been here before with the not talking, and this disease seems to work like a pendulum, so we will likely be here again some other day. We will get through this, I try to tell myself her writing skills will improve during this (not handwriting, but spelling and structure) and her sign language will be refreshed now too.

 

Yeah, seriously, feel free to call. Maybe we can brainstorm an idea or two, or just maybe venting will help you feel better.

[LNN]

I have three thoughts for you. The first is that if your DDs ODD is being caused by OCD, it could be that the OCD tells her that you may leave her and that could cause two reactions - first to be angry at you because she's afraid you'll leave her and/or second to tell herself she doesn't like you so that it won't hurt as much when you do leave her. Of course these are both ridiculous, but OCD is not a logical beast. I strongly recommend finding someone who can help you with ERP Therapy (exposure/response prevention). Many find that ERP isn't very effective at the peak of a flare, but it provides invaluable tools for dealing with the thoughts as the flare wanes and also provides you with the emotional tools to weather the verbal storms while they happen.

 

My second thought is about your DDs infections - I don't know if you're battling strep or some other infection but I wonder if you're seeing any improvements. If you feel any of the meds are helping, one strategy I used when my son was resisting taking so many pills is that I suddenly stopped pushing them. I said "fine, don't take them. However, if you chose not to take them, there will be no electronics, no sleep over at your friend's, no...etc. I said it calmly and put it in a way that it wasn't a threat or a punishment - simply a natural consequence for not taking responsibility for his own health. (he was 8 or 9 at the time). The second time this happened, we ended up stopping all supplements except antibiotics for 7 days in order to do a urine test. During those 7 days, my son started feeling really poorly and by the 5th day, was begging me to let him restart his supplements. From then on, when he complained, I'd say "fine, it's up to you. Just remember how you felt when you stopped last time." Somehow, simply turning the moment from a "do as i say" into an "it's up to you, so long as you understand the consequences" was all my son needed. He then got much better at owning the responsibility.

 

My final thought is that there may be additional roadblocks in addition to infection. For my two kids, we found that a condition called pyroluria was a big part of my son's struggles and both kids have methylation roadblocks that effect their moods greatly. Testing and treating these issues have made a big difference as well.

 

Hang in there - there are ways out of the darkness.

[mama2alex]

Hi, I'm so sorry you are going through this. How long has this been going on? If it's more recent, or has gotten a lot worse recently, I wonder if she's herxing. I read some of your recent posts and it sounds like you added a lot of things in rapid succession recently in order to be ready for your next LLMD appt? If so, maybe its too much for her body or maybe she is reacting to one or more of the things you added. Just a thought. Hang in there. You will get through this dark time.

[Hopeny]

I so completely hear you, I don't really have good advice except to tell you that you are not alone. My DD regularly tells me she hates me and that I am awful. Usually when I am giving her medicine. Her psychologist tells me that she associates me with being sick as I am the primary/only caregiver - husband does not participate. My husband (not going well either) frequently tells me how much I suck. Work is another disaster. DD's school situation is just awful, apparently her grade is the worst her teacher has seen in 10 years. Many days are very very hard. What I have gotten out of this is that DD and I are much closer. Enjoy your 3 YO, mine gives me lots of hugs. I hope that you can start to get some relief from treatment soon

[filinha1]

Hi there,

 

I'm not sure which meds your daughter is taking and this will probably be an unpopular opinion, but I think there are time when psychotropic meds have a place in your arsenal. Yes they deal with the symptoms and not with the problem. Sometimes though, that is the best you can do in a bad situation.

 

I will say unreservedly that a low dose of risperdal saved us when my dd was at her worst. Most important, it calmed her down enough to take the many abx and supplements required to get beyond the symptoms to the underlying problem.

 

She is still on risperdal and of course that is its own problem; is her remarkable improvement due to risperdal or the PANDAS / PANS protocols we are following, or both? Against the advice of the child psychiatrist, who believes she has a mood disorder (read euphemism for bipolar disorder), I have been steadily lowering the risperdal and gauging her reaction.

 

I don't think any decision about medications, psychotropic or otherwise, can be taken lightly. With that in mind our choice was to weigh the good the bad and ugly of all the meds we give, and do what we have to to keep the whole family functioning, not just our sick child.

 

Good luck with your daughter - this stuff sure ain't easy.

 

Heather

[rowingmom]

I so completely hear you, I don't really have good advice except to tell you that you are not alone. My DD regularly tells me she hates me and that I am awful. Usually when I am giving her medicine. Her psychologist tells me that she associates me with being sick as I am the primary/only caregiver - husband does not participate. My husband (not going well either) frequently tells me how much I suck. Work is another disaster. DD's school situation is just awful, apparently her grade is the worst her teacher has seen in 10 years. Many days are very very hard. What I have gotten out of this is that DD and I are much closer. Enjoy your 3 YO, mine gives me lots of hugs. I hope that you can start to get some relief from treatment soon

Tried to PM you but having no luck. I'm not sure why we don't have the message space we used to.

[Dedee]

Unfortunately many on this board have been in this dark place at some time. I am sure this is a very sad time for you. I can remember crying every morning in the car before I went into work and crying in the afternoon before I had to go home. Take comfort in knowing that many of the things you describe have been written here before and have gone on to improve and have healthy relationships. I second the suggestion that you re-consider how effective your antibiotic protocol is. Sorry I can't remember exactly what your daughter is taking or how long she has been on it. Also not sure what sort of testing you have had done but raging is common in some types of tic borne infections. My daughters rages and defiance were so bad initially we ended up starting her on lamictal (a mood stabilizer), which helped tremendously while we got the whole infection piece identified. She still takes it but at a lower dose than when we first started. The other thing I strongly encourage is a formal CBT / ERP program. When my daughter did the program at USF they addressed issues such as her rages and defiance and taught both myself and my husband techniques on dealing with her when she reacts in ways that you are describing. The program was such a blessing to me because just as you describe, some of those situations which turn the family and the entire day upside down, they show you how to diffuse them and keep the house hold calm. It is an invaluable program for both the child and the parents. I can't say enough about how it would change your life. This is something you will be dealing with off and on through out your childs life. It's great for the family to have the tools moving forward to keep peace in the house. It's very reasonable and they have extremely reasonable housing just across the street. Ok, I will stop ranting about the USF program. Just a suggestion. Hang in there. Keep us all updated.

 

Dedee

[nicklemama]

I am so sorry. It can be a he$$ hole when kids are in that place. Here's my recommendation. Check for infections and add or change abx to get things back to a better place. Give Motrin 3x a day until things improve. Lastly, if you are considering psych meds, I recommend trying lamictal. It has anti anxiety properties and its glutamate modulating. You give it twice a day and it has a good safety profile and less side effects than other choices. The downside is it takes weeks to get to a therapeutic level due to the fact that you have to slowly titrate up due to a slight risk of allergic reaction. My son was on lamictal for more than a yr. We started it 6 months before his PANDAS dx and it helped.

[SurfMom]

I forced myself to check in and have not been posting because I feel like such a Debbie Downer. My DD 15, who tells me too she hates me....when she rarely speaks......became so OCD that we had to put her on a feeding tube as she wouldn't even swallow her own saliva. She is negative, sullen and every single task is a battle...and she is functioning so lowly that she has been out of school since December. I hardly remember what her voice and laughter sound like anymore. The last time she said a single nice sentence was September. September!

 

Right now, I don't see a great deal of hope. We have been through every diagnostic test in the universe, have had three lengthy medical stays and have done everything from IVIG (now monthly) to Vitamin D....and still she is cranking out antibodies that are clearly cross-reacting.

 

I am worn out (she is up in the night doing crazy things), research and doctor expended, weary from being DD's cheerleader trying to keep her perked up and I desperately miss my happy-go-lucky, very bright, athletic daughter, The last time I had a conversation with someone other than my immediate family was at the grocery store two weeks ago, and I can't even run or take a shower. The last time I did, DD tried to cook something in a glass dish on the gas cooktop. It is like having a mean two-year-old in a teenager's body in the house day and night.

 

So I feel your frustration, have a boatload of it myself and wish you some peace and a break. I am determined to see this through, get her back and have a life...though I have stopped kidding myself and see that there are no miracles, she is not going to wake up one day snapped out of this. Funny, but I told my husband that I clearly do not have an addictive personality or I would have been a valium popping alcoholic by now. Anyhow, we have still have a long journey in stormy weather in a leaky boat. Someone pass me a bucket and a bigger oar and I'll do the same. All good things, Exhausted !!!

Edited May 3, 2013 by SurfMom

[queenmother]

So when did you move into my house?

I know where you are emotionally right now (and physically) but this will pass. Just remind yourself that you have to remain hopeful because you are your daughter's only hope. (I keep picturing myself as Obiwan Konobi in Star Wars as Princess Leia keeps saying, "Help me, Obiwan Konobi, you're my only hope.") I think my daughter rages more at me because I'm her mom and moms are supposed to fix things. I am still trying to forgive myself for not putting the ppieces together earlier, before things got to this point. And I am trying to forgive the legion of doctors and medical professionals who thought that I was over-reacting or who thought I was an inadequate parent or who led me to believe that it was all mental/behavioral/psychological. My heart is broken not just for what we go through now but for the precious years that my daughter has lost. I miss those infectious giggles and long to see those sparking blue eyes filled with wonder and love. Now I look to see how dilated her pupils are as she growls how much she hates me. But I am determined to get her back. I refuse to believe that this is how she will be forever.

All the more seasoned moms on the forum can give you much better advice than I can and I agree with evrything they've recommended. We are early in our journey to recovery. A few things that are working for us....the NSAIDs motrin or advil are helping us get through the really rough spells. I save them until I see things going to a bad place and I can usually tell when I see those dilated pupils and see her getting amped up. I also compound my own capsule of 200mg GABA and 100mg magnesium citrate. (Make sure it is JUST GABA with nothing else on the label. I like Holistic Health brand) I give this to my daughter nightly and it seems to help her and we aren't having the nightly battles as much. Don't give it until after homework is done because it can make her sleepy but try to give it at least an hour before bedtime. GABA helps to balance out the glutamates (which is how lactimal works, I think). We had her genetics done through Yasko and my daughter is COMT++ which means that she cannot tolerate methyl donors. Melatonin is a methyl and actually gets her more amped up instead of helping with sleep. Caffeine, theanine, chocolate, curcumin, gingko, trimethyl folate, anything that says "methyl".......all methyl donors we stay away from because they all contribute to more bad behaviour, raging, less sleep, mood swings. (I do give a sprinkle of trimethyl folate because she has to have some for MTHFR gene mutation but I give it early in the day and not every single day now) I don't know how your daughter's genetics figure into this horrible syndrome called PANDAS but, for us, it is part of the puzzle. My daughter goes totally berzerk when we have tried NAC which is highly helpful for some. I don't know why but we have tried a few times and it just drives her over the edge. I never give Tylenol because it destroys glutathione and good glutathione levels are critical in healing PANDAS. My daughter has low glutathione levels already probably due to earlier years of my not knowing that the tylenol destroyed it. (All those years of vaccinations and the pediatrician always gave tylenol following the shots....the worst possible timing ever...but now we know) It's all so overwhelming.

Every kid is different but I hope you find things on here that help. I know I have. And the support alone has been a lifesaver for me.I have always been very involved and social and now I find myself somewhat isolated because of the chaos. The fear of committing and obligating to things and making plans too far in advance has changed our world. My world now is trying to get by from day to day and always praying that today will be better than yesterday. And sometimes, quite honestly, it is hour to hour. Everyone on this forum seems to get that and I am grateful.

It will get better, Tu4four. We have to believe that.

QueenMother