Jump to content
ACN Latitudes Forums

How do you do it when things are in crisis mode?


Recommended Posts

Manda, if it's any small comfort, I thought of you a lot today. My dd is in a bad emotional state and I feel like I will lose my mind with her. Whenever I felt like I would start to slip off the edge, I thought of you and Pixie and how much you are struggling and it gave me the strength to keep on going. My heart goes out to you and your family and I really hope things start to improve.

 

Susan

Link to comment
Share on other sites

  • Replies 33
  • Created
  • Last Reply

Top Posters In This Topic

When my son is at his worst, I use advil and a weighted vest (I have been meaning to start a post about this). The vest brings down the rage and hyperactivity within 5 minutes...

 

Stephanie

 

:) Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

 

I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

 

We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

 

We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

 

I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

 

I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

 

I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

 

???

Manda

Link to comment
Share on other sites

epsom salt baths- some say it calms them

kidscalm supplement- i think it is magnesium

meds- I would ask Dr K if there is some med to use temporarily to calm her (I am totally ignorant in this area- but very low dose of valium or something?)

 

Please keep us updated and best wishes for healing...

 

Eileen

 

We have been using Epsom Salts intermittently. Baths, showers and any other hygiene really triggers her, so that is a tough one.

 

Kid Calm- I am using this in a smoothie each night since IVIG

 

Meds- We called Dr K today to talk about upping her dose of abx, but he wasn't in. Will try again tomorrow.

 

 

I am so sorry. Does she have any moments of calm? Was she this physical before IVIG?

 

She does, thankfully, have moments of calm. She is only recently this physical, but we have seen rage attacks from her in the past. Last summer was the worst (until now) but they started this time on day 14 after a 5 day steroid burst (diagnostic.)

 

 

Have you seen any improvements since IVIG? Does motrin provide any relief? I have also read that high doses of calcium are anti-inflammatory. There are those sweet chewable ones in certain drug stores.

 

And remember that this could be the "flipping back of the pages." Our doctor forwarded his email correspondence to me between himself and Dr. K and Dr. K did mention that the next 3 months would be so up and down.

 

Keep us posted and we will be thinking about you.

 

Elizabeth

 

We have seen the "flipping of the pages" and a lot of behaviors coming and going in rapid succession. We've had some good days since IVIG but not anything like we saw on the steroid burst (yet) that is consistently good. Motrin doesn't seem to do anything, but maybe I need to pay closer attention and be more consistent with it. I do have some calcium supplements and have given them 2 days now.

 

 

If you can find one with Lavender (it also has extra minerals like Zinc in it) - it can do wonders!

 

I also read that yeast (which tends to flare up like crazy when one is taking abx) can cause quite an insult on the body. I am not sure if your daughter on any anti-yeast or probiotics but perhaps that is something you could consider? You don't need Rx for probiotics (just watch out for those that have strep strands in them - don't get those).

 

We avoid lavender here because of the pseudo-estrogens, but I have been using regular Epsom salts. I don't know much about yeast and we aren't doing anything specific other than Florastor twice daily and Pearl at night.

 

I agree with the idea of trying Ibuprofen (Motrin).

 

Is pixie on any psych meds?

What antibiotic and dose is she on?

 

She is not on any meds other than the abx, which is Augmentin 250 mg/day

 

 

 

 

 

 

 

 

 

I'm sure you have considered if there might be a co-morbid diagnosis in addition to PANDAS - but I know how hard that is for anyone to figure out.

 

She was previously diagnosed with bipolar, possible ADD, SPD/SID, tourettes and OCD, and PTSD

 

 

When my son is at his worst, I use advil and a weighted vest (I have been meaning to start a post about this). The vest brings down the rage and hyperactivity within 5 minutes...

 

Stephanie

 

I made a weighted lap pad for her but I was considering a vest. I will have to get one.

 

Thanks for all the advice!

Manda

Link to comment
Share on other sites

She is not on any meds other than the abx, which is Augmentin 250 mg/day

 

Wow...definitely up that. Saving Sammy was on 2000mg/day at one point. Pixie is smaller/younger...but 250mg/day sounds really low. I would go up to the maximum dose possible for her size. IMO, you have little to lose (and a lot to possbily gain) by increasing the dose of abs.

Link to comment
Share on other sites

For my son the vest is best. We also have a weighted blanket and it just doesn't have the same effect as the vest. We use the one from this site:

 

www.otvest.com

 

Best $100 I have ever spent (well, besides the $$ we have spent on zithro)! It really helps with rages, but also with the silliness and hyperactivitiy he gets with yeast...

 

Stephanie

Link to comment
Share on other sites

Hey Stephanie...is your insurance only covering 5 days worth of Azith./mo? If that is the case, you should be able to file an appeal (okay, I don't remember if that's what it's called)...an exemption or something like that. Ask your doctor. They might need to call your insurance or file out some kind of a special form to get more Azith. covered. With the insurance we had last year, they would only cover 5 days/mo...but then we got that fixed so it was $5 copay for the whole month.

Link to comment
Share on other sites

Something I want to say.

 

We're not saints.

 

We do the best we can.

 

The kids are sick but society doesn't believe us. They think it's our fault.

 

Every several weeks or so, after holding it in and being calm and patient as much as possible, I explode. And once in a while a behind gets whacked.

 

I'm human.

 

A parent can only take just so much abuse before he/she feels like an enabler.

 

After my explosion, my kid gets it. He knows why I exploded.

I know he can't do anything to change his ways. Not yet.

 

After all, nobody told us there would be days like these... over and over and over and over.

 

Right?

Link to comment
Share on other sites

Ok. I'm thinking out loud. Well, not out loud, but while typing....I'm assuming she's on supplements like Omega 3's to help her brain repair any damage that was done. You seem really good about that stuff.

 

You've experienced this for quite awhile. When you see these extreme rage attacks hit her, does your gut tell you it's PANDAS? I ask because when my son had remaining OCD, I could just tell the PANDAS episode was over, but the OCD remained. That's when I strted handling it different. This really is all based on good ole Mommy instinct. What does yours say?

 

How many days post IVIG are you? You say her rage emerged with the steroid burst after 14 days. Is there a pattern?

 

fallingapart...Has she posted here? Her daughter's PANDAS symptoms came back full force around day 20 post IVIG.

 

What is she doing when she is calm? Does she envelope herself in playing, watching tv, etc?

 

Finally, sorry so much, have you "spied" on any groups with bipolar, ADD, etc? Even if she may not have these disorders perhaps they have suggestions they can share if nothing else is helping. In an OCD group, one mentioned that the supplements SAM-E helped her sister dramatically. Not sure what is in it.

Link to comment
Share on other sites

No, she was tested w/ a pediatric neuropsychiatrist last summer and he said she is definitely NOT on the autism spectrum.

 

We do 2 smoothies a day.

 

Smoothie #1 in morning

 

Kefir (no strep strain)

Fruit (varies)

Flax seed oil

Florastor

Augmentin 250mg

 

 

Smoothie #2 at night

 

Kefir

Fruit

Flax seed oil

Florastor

Melatonin (1/4 tablet)

Kid Calm

 

and she takes a Pearl (no strep strain) probiotic

 

We have done strict Feingold stage 1, so I know what fuels the fire now and avoid those things, namely Apples.

 

We called Dr K today and he said to give her a second dose of Augmentin 250mg at bedtime as well, for 10 days, as I and my 2 yr old have sore throats.

 

Also got in touch with a chiro that I am hopeful about who knows about PANDAS and called me tonight and just CHATTED for half an hour! He wants her entire history and records to read, all her films, blood work, etc etc. He and his associate do nutritional therapy, acupuncture and work on communication between right and left brain to help with SPD/SID issues. I'm very optimistic- he sounded like he knew his stuff and was really caring.

 

No, she does not do anything on her own other than go to the bathroom. She won't even do that at night before bed. Everything had strict OCD routines and she has to have us by her side 24/7 (well, she does sleep on her own - thank goodness!!!!) and is literally attached to the hip of some adult all day long every day.

Link to comment
Share on other sites

Manda, Pixie sounds just like my DD prior to the IVIGs. I've ben absent for a few days and haven't seen this post until now. But my response is to up the antibiotics as well. When DD had her setback at only 20 days post IVIG, I asked why this would be. The other parents mentioned we were likely on too low of a dose of antibiotics. Since that post, I've been doing daily Zithromax and DD has gotten better. I know that Zithromax is a different drug than you are taking, but I would also like to chime in and recommend you upping the dose or frequency of the antibiotic. Our example was that we were supposed to give her Zithromax 2x/week for the next year. She got a cold and the ped said to give her 3 straight doses and go back to our 2x/week. But, you all said to do the daily dose. That is what we have been doing for over a week now. The setback lasted 2 days and we are doing pretty well now.

 

Manda,, I know what it is like to go through the day with your raging child who needs you 24/7 while you have a migraine. I had a migraine that lasted for 5 weeks from this. And when DD relapsed last weekend, I actually wrote in my blog that I wasn't sure I have the phyisical and emotional energy that it takes to care for this child right now because I haven't recovered from the last episode.

 

I'm also going to make a separate post now about cow's colostrum that is an additional supplement that I might want to recommend to you specifically.

Link to comment
Share on other sites

PixiesMommy,

 

Hi...sorry you are having such a tough time...hang in there. I was reading your post and I can't help but wonder that if you gave the Augmentin alone in the am an hour before the smoothie (at the least)....you might have a better effect. If I am correct, it sounds as if you are putting the Augmentin into the smoothie.......right? The smoothie has many other supplements, including probiotics, that, when taken with the antibiotics, can lessen the antibiotic effect, and, destroy the probiotic.......just a thought.

Link to comment
Share on other sites

Wow, I never thought about the fact that the probiotic could lessen the effect of the antibiotic (I DID know that the antibiotic kills the probiotics, unless it is s. boulardii, like florastor). Very good point!

 

Stephanie

 

PixiesMommy,

 

Hi...sorry you are having such a tough time...hang in there. I was reading your post and I can't help but wonder that if you gave the Augmentin alone in the am an hour before the smoothie (at the least)....you might have a better effect. If I am correct, it sounds as if you are putting the Augmentin into the smoothie.......right? The smoothie has many other supplements, including probiotics, that, when taken with the antibiotics, can lessen the antibiotic effect, and, destroy the probiotic.......just a thought.

Link to comment
Share on other sites

I'm new so forgive me if this is silly. :wacko: Have you tried ABA therapy? Its worked wonders for my son-he did not have the same type of rages- but I have seen it work with kids who did. We had a BCBA come to our house. ANd by the way, it is a respite for you as the ABA therapist handles them during the session. It was the best money we ever spent. And he had great gains from it. most of which have stayed. JUst find a quality one. What state are you in? Shannon

 

 

 

:( Yeah, I'm on a roll today. This is the first week DH is back at work (after being home all summer and then the few weeks at beginning of school year) and week 3 post IVig for us. She's in week 2 of school and week 2 of having our special needs nanny. We have A LOT going on.

 

I'm just feeling fried. I don't know what to do and how to react because there is always something new to react to. The rage attacks are directed at me when DH is not here and they HURT. It is all I can do to hold her. I managed to restrain her today for 30 minutes but then she must have sensed my weakness because she suddenly bolted and I could not stop her. I just physically could not. Luckily at that point she ran to her room and didn't throw herself into anything. She's also started biting and I have bruises up and down my arms and today I think she must have popped a vein because I have a lump on my forearm that is blue and swollen and hurts beyond belief.

 

We hired the nanny in the hopes that we could have someone help me restrain her in her loft bed when needed, as that is how we have managed her for the past two years (she needs total quiet and no stimulation for a few minutes) and we found out quickly that that isn't going to work. It takes both of us totally muscle strength to force her up the ladder while kicking and hitting and biting and spitting at us and then on Monday she threw herself over the edge saying she didn't care if she hurt herself and she hoped she did. Luckily, we were there to catch her, but still....

 

We've tried making a safe room with mattress and cushions, we've tried having her go to a quiet safe space where she feels safe and confined (she will sometimes hide in the drapes or in her closet and slide the door shut) but she will actively seek us out to hurt us- like, chase us all over the house knocking over furniture and hissing and clawing us until she's put someplace on her own a few minutes. Holding her door shut does nothing- she will fight for hours. She seems to have endless energy. And she can somehow get out of any restraining hold I can do. In fact, when she was a toddler we called her Baby Houdini because she could undo any straps and everything- car seat, etc.

 

I'm just at my wits end. She is literally abusing me. I'm sore from head to toe from the beatings and have popped almost every joint out of place trying to restrain her (I have Fibromyalgia and have bone spurs on hips and shoulders) so I am walking around (barely) with a migraine trying to do all of this and I am really just wanting to hide in a hole with some strong pain reliever.

 

I also have a 2 year old who got slapped a couple of times on Monday before I could get her out of range and I'm just SCARED for all of us. Believe me, I would not put a hand on her except she really is endangering herself while doing this too- like, throwing herself at the piano and picture window, screaming at furniture while tossing it over and rolling around or spinning or flailing with eyes shut tight while it's all going on.

 

I feel like I'm at my wits end. I am really opposed to hospitalizing her :( but I know that when we did an outpatient stint a year ago it really helped.

 

???

Manda

Link to comment
Share on other sites

What is ABA? I'm in IL. We have tried to find ANYONE who can help to come to our home and no luck w/OT or therapists like psychologists so far. She is hard to get out of the house at this point.

 

Thanks!

 

Also, Florastor is what is in her shake and it is fine with abx at the same time. I add a little bit of Kefir to thin it out, but I will discontinue using this at the same time as abx in case it is causing a problem.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...