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Because I don't know what to do.

My dd, almost 7, is violent. This is not new, but has escalated to emergency status. We are on spring break.

Her brain snaps. She attacks. Screams threats. If anyone outside my home heard her---

We tried our first ever vacation, 2 days, 1 night hotel.

My DH and I had reality slammed down on us. She had violent episodes, a complete panic attack in public.

Although I have always tried to be strong, you know me, preaching detox all the time on here, right?

I have been having breakdowns, sobbing, on the floor, I am so frightened for her.

I swear to God, I seriously think she may just be bipolar.

My 5 yr. old and 14 year old have been very affected. All in the same hotel room, it became so clear what their lives are like with this, too.

It is me and and most of the time my sweet 5 yr. old that are abused. She has attacked my husband.

I am 105 pounds and weak. I can't lift her anymore. It hurts now when I am kicked, pinched. I cannot control it. Her brain is gone. If I remove her, she starts to self injure.

I called our Ped. office (new to us this year) crying- my child is violent- we have a psychriatic evaluation next week, soonest we could get in.

At the very least, I need this documented-

this is the child that is perfect every single day for 6 hours in a row at school- good grades, never once! had a behavior problem there. The SECOND we pick her up, she starts in. The 7 minute drive home is a nightmare, she refuses to get out of the car, on and on.

 

I have taken her off antibiotics about 5 days ago, and am only treating yeast, probiotics. Yeast I know is happening. She has fought yeast for years, before antibx.

Sent in an OAT to see if there is clostridia, back in 10 days.

I have clonidine, which does nothing, except maybe she will fall asleep on the couch, after terrorizing.

I thought about taking her to an emergency room today. I am not well myself, especially now after all this emotion. I feel paralyzed, and my DH and I are so grief stricken. I have tried to treat the medical, with some of the best Dr.'s, for 3 years. Now it feels like mental illness, beyond the medical implications. She does not have autism.

I am afraid they might keep her at an ER.

This would BREAK this child's spirit. She is fragile, so dependent on me.

Yes, I am giving ibuprofen. Perhaps I've also wreaked her gut with that, too.

Can't give a steroid - she flipped last time I tried, with her underlying infections.

I don't know what to do.

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Because I don't know what to do.

My dd, almost 7, is violent. This is not new, but has escalated to emergency status. We are on spring break.

Her brain snaps. She attacks. Screams threats. If anyone outside my home heard her---

We tried our first ever vacation, 2 days, 1 night hotel.

My DH and I had reality slammed down on us. She had violent episodes, a complete panic attack in public.

Although I have always tried to be strong, you know me, preaching detox all the time on here, right?

I have been having breakdowns, sobbing, on the floor, I am so frightened for her.

I swear to God, I seriously think she may just be bipolar.

My 5 yr. old and 14 year old have been very affected. All in the same hotel room, it became so clear what their lives are like with this, too.

It is me and and most of the time my sweet 5 yr. old that are abused. She has attacked my husband.

I am 105 pounds and weak. I can't lift her anymore. It hurts now when I am kicked, pinched. I cannot control it. Her brain is gone. If I remove her, she starts to self injure.

I called our Ped. office (new to us this year) crying- my child is violent- we have a psychriatic evaluation next week, soonest we could get in.

At the very least, I need this documented-

this is the child that is perfect every single day for 6 hours in a row at school- good grades, never once! had a behavior problem there. The SECOND we pick her up, she starts in. The 7 minute drive home is a nightmare, she refuses to get out of the car, on and on.

 

I have taken her off antibiotics about 5 days ago, and am only treating yeast, probiotics. Yeast I know is happening. She has fought yeast for years, before antibx.

Sent in an OAT to see if there is clostridia, back in 10 days.

I have clonidine, which does nothing, except maybe she will fall asleep on the couch, after terrorizing.

I thought about taking her to an emergency room today. I am not well myself, especially now after all this emotion. I feel paralyzed, and my DH and I are so grief stricken. I have tried to treat the medical, with some of the best Dr.'s, for 3 years. Now it feels like mental illness, beyond the medical implications. She does not have autism.

I am afraid they might keep her at an ER.

This would BREAK this child's spirit. She is fragile, so dependent on me.

Yes, I am giving ibuprofen. Perhaps I've also wreaked her gut with that, too.

Can't give a steroid - she flipped last time I tried, with her underlying infections.

I don't know what to do.

 

 

Maybe go back for IVIG. We are working on fixing the gut. I know many going down the Lyme Path are looking at that for a final answer but really, no one knows yet. Might be better to stick with PANDAS treatments.

Edited by LaurenK
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I could have written this post a couple of yrs ago. My DS does not have lyme. He has PANDAS. I thought he was bipolar. We started taking him to a therapist but it didn't help him. I finally asked for a referral to see a psychiatrist. He was first put on Celexa. Don't go that route. When that was a disaster, he was put on Lamictal. It worked to help keep the most aggressive behaviors tamped down. I don't know much about lyme treatment. Your post caught my eye and felt I should at least respond w/ what helped us. Our lives were a nightmare, except I don't have other children to worry about. I am also bigger than you and I am strong and my DS was 5-6yo and I could then physically handle him but it left me spent, emotionally and physically. Today, I would not be able to handle him as he has grown quite a bit.

 

If you go the lamictal route, it takes a few months to get to treatment dose. You may have to consider a more heavy duty medication to help you.

 

My DS also went to school and behaved just fine. Teachers loved him. When I got him in the car, it all started in. I clocked watched for bedtime, another nightmare for us, and then would fall apart when he went to sleep and gave us some relief. I feel for you. I know exactly what you are going through. We even took him to the psych ER one night. They didn't keep him. They questioned us all, separately, and I could see they were considering the problem was us, not our son. Fortunately, our DS told them every behavior he had done that evening and they managed to get his therapist on the phone to talk to her.

 

Get started w/ psychiatric help so that if things go really bad, you'll have professionals in your corner. I can't say its going to help your DD a great deal if she has lyme but you may need that documentation.

 

PANDAS treatment has helped my DS tremendously. Wish I could be of more help w/ the lyme. I just wanted to reach out to you and let you know others have been in your shoes and its the most awful, horrible time in parent's life. I had many breakdowns of crying and absolute despair. I am so sorry this is happening to you.

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Oh, my heart breaks for you right now! You are always so supportive and offer great advice on detox, exc - so I know you are trying everything. I wouldn't be suprised if she is dealing with clostridia. My daughter's symptoms were extremely exagerated when she had c-diff. I am sending you prayers and support.

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((HUGS)) and A LOT of empathy from 12 years of behavior/roads like your experiencing--9 years before we had the PANDAS dx, 10 before the TBI. And I am losing it now reading your email, shedding a tear for you and your child as I shed one (OK, more than one) for our ds13. A charge of Assault on a Police Officer with bodily injury was leveled on him today. My boy is sick. Your girl is sick. All I can say is I understand your pain.

 

Dawn

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((HUGS)) and A LOT of empathy from 12 years of behavior/roads like your experiencing--9 years before we had the PANDAS dx, 10 before the TBI. And I am losing it now reading your email, shedding a tear for you and your child as I shed one (OK, more than one) for our ds13. A charge of Assault on a Police Officer with bodily injury was leveled on him today. My boy is sick. Your girl is sick. All I can say is I understand your pain.

 

Dawn

Sending prayers and support your way as well Dawn. So sorry!

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Thank you very much. I am in tears again, and I'm not a crier. Me collapsing on the floor wailing with grief and fear on Sunday after the attacking left my entire family in shock.

This was before our 'vacation.'

 

Oh Dawn. I am thinking of you---------and shedding tears for both of us. Please hang in there. Wish I could do something.

 

I understand what was meant about PANDAS treatment- treating the autoimmune- the brain being attacked. This of course, I know---we have PANS,

but we did a 5 day steroid once, shut down her immune system with infections underneath, and it was terrible- stopped eating, psychotic. We still have known infections, I can't try it again.

We had 2 HD IVIG's- the first was awful- the 2nd was wonderful from day 1, but then wore off completely at 4-6 weeks when donor antibodies left her system.

I paid $8,000 for both.

I am unable to spend this money again, when it could be the 'wrong' one again, or the right one only lasting 4-6 weeks.

 

Thank you. I am lost. Again. And just feeling so much grief.

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S&S-

 

I am sorry for your daughter's suffering. My heart goes out to your whole family. This is so unfair.

 

I am just going to throw our situation out there, FWIW for you. I am not familiar with your daughter's story. Did she have an overnight onset? Did she have strep? When was she tested for lyme?

 

I have two daughters with pandas. Both were completely normal, happy kids. Both got strep and within a month our house was out of control. OCD and the accompanying temper tantrums, restrictive eating, sensory issues, defiance. Since, we have been able to get both to remission, however they do flare up with illness, and we have to treat them again. In the beginning this was really hard, but now, with the help of some great docs, we have been able to streamline their treatment protocol.

 

About a year and a half ago, when lyme talk on this board was heating up, we decided to get them tested in hopes closing the door on that issue. They were both negative via standard western blot, but when we ran Igenex both came up with some positive IGM bands. I was shocked. We started down the trail of treating lyme, which for us was a mistake. During this time, and on multiple antibiotics for lyme- both contracted strep. It was at that time we needed to make a decision, as they were going downhill due to pandas. We opted to treat them with steroids for pandas, and both went into remission for almost 8 months- until they got a virus this December. We were able to treat that quickly, and they did fine again.

 

At the time, we consulted with many docs about lyme. LLMD said treat, mainstream docs said test was garbage, two more conservative yet chronic lyme treating docs (both recommended by Dr Fallon) felt lyme was not our children's issue and to continue treating pandas as we had.

 

So- I guess what I am saying is that if you have been treating for lyme- and this sh$% is still going on- it may be time to move on. Steroids CAN make things worse, but can also make things better. PEX would be your safest (rarely a negative reaction) option to aggressively treat pandas- and not bother the lyme issue.

 

All I know is that for my two, if when they spiraled out of control with pandas issues, I kept them on only antibiotics, they would barely be functioning now- yet due to immune modulating therapies- they are normal and happy.

 

I don't know that this is the answer for your daughter- I just wanted to throw it out there.

 

Since having pandas- has she ever had a 95% remission for a good period of time? For me that would be a clue.

 

I know money is an issue- but I may consider the new lyme culture test- if it is possible, to really confirm the lyme.

 

The other issue is that some docs think that some cases of lyme clear, yet leave autoimmunity in their wake (some docs don't think this- I would imagine there is the possibility of both scenarios)- if this is the case for your daughter- again Pandas treatment would be helpful.

 

Hopefully some of the lyme moms will have some advice for you.....

 

Hang in there!

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So sorry to hear, what a terrible situation. Perhaps some drugs can help, I dunno, for me the prozac was a nightmare but my situation was different, just thinking those psychiatric drugs can be hit or miss, but you gotta do what you gotta do. I don't know that I have a lot of advice here, but a couple of suggestions on the "natural" route, you might consider SAMe for mood (Jarrow is a good brand), or Xymogen "Nrf2 Activator", which is excellent for inflamation. I don't know how it compares to the ibuprofen, or if ibuprofen has immune-lowering qualities that could be hurting (I think some of those OTC anti-inflamatories do, not sure), just tossing out an idea to try.

 

By the way, we are getting close to a full moon here (Friday), where parasite troubles can be at their worst. Have you treated for parasites, or considered it?

 

Don't know if any of these suggestions are worthy, just trying to help, hope you can get through it.

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Because I don't know what to do.

My dd, almost 7, is violent. This is not new, but has escalated to emergency status. We are on spring break.

Her brain snaps. She attacks. Screams threats. If anyone outside my home heard her---

We tried our first ever vacation, 2 days, 1 night hotel.

My DH and I had reality slammed down on us. She had violent episodes, a complete panic attack in public.

Although I have always tried to be strong, you know me, preaching detox all the time on here, right?

I have been having breakdowns, sobbing, on the floor, I am so frightened for her.

I swear to God, I seriously think she may just be bipolar.

My 5 yr. old and 14 year old have been very affected. All in the same hotel room, it became so clear what their lives are like with this, too.

It is me and and most of the time my sweet 5 yr. old that are abused. She has attacked my husband.

I am 105 pounds and weak. I can't lift her anymore. It hurts now when I am kicked, pinched. I cannot control it. Her brain is gone. If I remove her, she starts to self injure.

I called our Ped. office (new to us this year) crying- my child is violent- we have a psychriatic evaluation next week, soonest we could get in.

At the very least, I need this documented-

this is the child that is perfect every single day for 6 hours in a row at school- good grades, never once! had a behavior problem there. The SECOND we pick her up, she starts in. The 7 minute drive home is a nightmare, she refuses to get out of the car, on and on.

 

I have taken her off antibiotics about 5 days ago, and am only treating yeast, probiotics. Yeast I know is happening. She has fought yeast for years, before antibx.

Sent in an OAT to see if there is clostridia, back in 10 days.

I have clonidine, which does nothing, except maybe she will fall asleep on the couch, after terrorizing.

I thought about taking her to an emergency room today. I am not well myself, especially now after all this emotion. I feel paralyzed, and my DH and I are so grief stricken. I have tried to treat the medical, with some of the best Dr.'s, for 3 years. Now it feels like mental illness, beyond the medical implications. She does not have autism.

I am afraid they might keep her at an ER.

This would BREAK this child's spirit. She is fragile, so dependent on me.

Yes, I am giving ibuprofen. Perhaps I've also wreaked her gut with that, too.

Can't give a steroid - she flipped last time I tried, with her underlying infections.

I don't know what to do.

 

 

Several thoughts, because we have been there, and still occasionally go that route (but now, DS can run to his room, although we see his face turning bright red!)

 

1) If she isn't allergic to peanuts, give her either 1 -2 T of peanutbutter or 1 -2 small handfuls of peanuts. We found this purely by chance, and it worked every single time, even though DS HATES peanuts (so it's not a placebo effect, because I used to have to threaten him to take them.) He was calm within minutes (hopefully it will work for you, too.) My theory (and Dr. K agreed) that it may be because peanuts are full of tryptophan and high in fat, so it goes straight to the brain!

 

2). If you haven't tried 5-Htp, try it (start off with only 1 -2 pills 2X per day.) We prefer the time release. PM me if you want a company name.

 

3) I would recommend PEX over IVIG when things are that bad. We've done both. PEX stops it fast. Ask to followup with IVIG, though, because personally, I believe that a person needs both (get the toxins out, then give the body the ability to fight it.) I don't know who you see, but PM me if you want more info.

 

4) Fix the gut (find a naturopathy, holistic chiropractor, etc.) BTW, we are now using accupuncture, too.

 

5) SEARCH FOR INFECTIONS! I suspect there may be underlying infections going on right now. Make sure you check for mycoplasma pneumonia, because it causes rages. Also, I presume you did, but I'll mention it again...did you definitely rule out bartonella...it causes rages, too. Turns out DS tested very, very negative for lyme and co-infections, but he actually had/has the stretch marks.

 

I am seriously praying for you. It's a horrible place to be (DS broke my arm one time. He could only stop when I cried....very weird.)

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S&S, my heart goes out to you! There is so much in your posts that I relate to in my DS8. I have always followed your posts because our kids started out with such similar symptoms, and similar lab tests. We both journied from PANDAS to lyme/bart.

 

What stuck out to me in your post was that she has been off antibiotics for 5 days. Did the violence start before or after taking her off? Why did you take her off? Yeast issues? OR...? I ask because we recently had DS off antibiotics and within days he became violent. We were hoping to have him off for 4 weeks to run the borrelia blood culture test. But he was violent, making threats, attacked his brother, became paranoid, etc. So we abandoned the new test and got him back on abx. During those 2 horrible weeks I had flashbacks of how life used to be before lyme treatment. I was sobbing and a mess. I almost took him to the E.R. because I didn't know what else to do.

 

We have also tried the psych drugs. They didn't help. The only thing that helps DS is abx, but he seems dependent on them. So I'm feeling a bit stuck on how to proceed. We can't leave him on high dose antibiotics forever, right? And the longer he's on them the more I worry about complications.

 

Is it possible to get your DD back on abx for now? Would it help? After my DS's violent episode, we jumped back on abx and within a few days he was back to himself. It's scary and doesn't make a lot of sense medically. But it works for him.

 

I'll be praying for you and your family. Please update us!

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I also can relate to much of what you are saying. I also have been a sobbing mess a lot lately - especially because Aidan doesn't discriminate between doing his crazy behavior at home vs school or even in public. We can be in public and he can grab a the wrist of another child that may or may not know (usually a smaller female child) and not let go (and you can't always predict when it is going to happen.) It is hard to admit but I have thoughts lately of just giving up and then putting him a psych place but I no I can not do it at this time. Being isolated in this with the people around me not understanding Aidan or what we are trying to do makes it tough also.

 

Just like Momcap, I was wondering about the relationship between when you took her off of the antibiotics and the behavior. You may have some clues in all of this that will help you in the long run that will help pinpoint what is going on. I wonder about Bartonella, I thought I had read somewhere that it can relapse quicly after taken off antibiotics. I have the impression that it is worse in the behavioral issues than Lyme. Does the LLMD think she has it? Also, are you being treated for a TBI also?

 

It is so hard to determine what causes what - is it the infection (and if is - which one?), herxing, autoimmine, yeast, etc. And it is so different from one child to the next. For your child it does not seem like the steroids/IVIG have worked.

 

You are so brave, smart and a good Mom. It is so hard when it feels like you have to be super human just to parent this special child. You will get through this and figure it out. Hang in there!!!!

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Again, thank you so much everyone, it means a lot. Really.

 

No, this was happening while antibiotics- I was using binders, detox.

I did stop giving antifungals this last month, she was on 2 high dose antibx, and my thinking was not to tax the liver-

Mistake- yeast is always an issue with this child. And I don't feed her cookies all day long.

I treat yeast (3 years, before antibx) and it always comes back. I give massive, quality probiotics.

Some say you will always have yeast if there are heavy metals present- she has those present.

Maybe I need to work on that for a bit, treat the Lyme gently with herbs.

Yes, she and I both have Bartonella (mine was positive Igenex)

we both have been on antibiotics for that, and herbal tinctures.

Her antibx this last 5 weeks were for Lyme only.

To me, this is not because I pulled her off antibiotics- it has been escalating for weeks- so I pulled her off because I wondered/thought I'd blown her gut out-

we had diarrhea, I was thinking clostrida and yeast. I know yeast is BAD right now treating with ketoconazole, this is a good one for her, and probiotics, that is it. Waiting on OAT.

I am going to try and get Michael's recommendation for inflammation supplement.

 

Whew. Lost again. At a pretty low point.

Edited by S & S
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On the yeast side of things, there are so many things out there, I was on extremely high dose nystatin and regular dose fluconazole ("diflucan") for long periods of time and they were helpful. The fluconazole can be hard on the liver is what they all say. On the non-prescription side of things, what helped me the most was CandiBactin BR from Metagenics (some acupuncturists carry this but also available from iherb.com) and very strict limitation/avoidance of grains (due to the carbs).

 

Thinking of you!

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My heart was so heavy after reading your post (and Dawn's) last night, that I actually woke up my daughter to tell her how much I love her. I realize how things can change in a blink of an eye.

 

One thing I want to mention, has there been any recent changes in supplements? You know how some of them are as powerful (if not stronger) than antibiotics. My daughter was taken off abx in Sept. for high liver functions. When we attempted to put her back on zith her body rejected it - a lot of physical symptoms. The second time we tried the zith it made her worse, even after we stopped it. A month later we tried Amox 250mg and she was able to tolerate it but when we tried to increase to 500mg, she crashed (that was after one pill). Her LLMD said NOT to push through the herx and to wait another couple weeks. We started the Amox on Feb 24th. We finally were able to increaswe to 500mg on Tuesday. So far, it's good. Her LLMD said not to push through any herxes with abx or supplements (in my dd's case - she is just too sensitive now). She had no problems with the abx when she was on them before.

 

Regarding the IVIG, again this is our situation, my daughter herxed extremely bad with her first 4 IVIG's when treating for lyme. Thats why at the time I only did them 4 months apart. Her Immunologist recommneded every 8 weeks, but I couldn't do it. We have now moved forward to every eight weeks and no longer experience a severe, severe herx. FWIW

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