Weird

[Wilma Jenks]

I will make this short. I have yet to find anyone that had the same situation as ours. I need to put it out there once again.

My girl gets really agitated and I can't stop her from running into the streets. Or she gets really aggitated and ransacks the fridge for anything sweet. There is no stopping her becasue she gets violent. Then after eating anything, she seems to crash and attack me. Kicks, screams, bites. If it isn't food, then she will scream for a neck vibrator that we use in our home. She discovered that it feels good on her genitals (sorry to be so graphic) We have to say we lost it, or she will stay in the house all day and use it. We can't control this behavour. We have tried many drugs, which helps a just a little. Can ANYONE relate to this. It just seems like her brain is on fire all of the time and all foods make it worse. It even happens when she doesn't eat anything. She is very unstabel. She is really sick.

[Tamistwins]

Hi Wilma,

I can't relate to your daughters issues but I feel for you...I hope she gets better soon. Have you been to a Pandad expert? How old is your daughter? Have you done blood work to see what type of infection(s) she might have?

[Priscilla]

sorry we don't have the same symptoms, but some wierd ones nonetheless, we can't say certain words "back, chin, jaw, and the new one today is gram" really sets her off too, hitting, blood curdling screams, runs to the bathroom. She must have severe inflammation, the question is, what it causing it? Have you tried steroids? If not, it may help to just get it under control, even if only a little, may get her and you some relief. About the vibrating thing, since she is in such torment with what it going on in her mind, maybe it is something that makes her feel good, and distracts her. I don't mean to be graphic either, but it may be the only form of pleasure she gets with all the other things going on. I don't know if you could find something a little less disturbing (for you) to help soothe her. Hot, bath, (maybe you could take her to pick out lotions, aromatherapy stuff...) massage. I am just throwing suggestions. I know when my dd is in exacerbation, anything I try to soothe her just pisses her off more. I think I had asked if she has had an MRI, that was negative right. How about testing for celiac disease (since it can correlate with food) I know alot of these kids have had allergy testing too. So may roads I know.. I will pray for your daughter and your family. Does she EVER have good moments? if so try to hone in on what she has eaten for several hours prior (maybe keep a journal), and what activities has she been in engages in recently.. may help you to do things to increase the frequency of the good moments. I know my reaction to my dd in her rages has changed and it can help a little. I just shut up, walk away (I know it is so hard when they follow you and hit you) but I just kind of go zombie like until she comes out of it, or changes to wanting affection instead of being angry. All rationality is out the window, so remember what you think you SHOULD do (punish, correct, explain, react) just has no effect here. All my prayers to you.

[Wilma Jenks]

I have only seend her look normal a handful of times for very short periods (hours.) Then goes right back into her aggitated world, with lots of imaginary friends and obsessions. She tells me that the thoughs won't stop bombarding her brain. She can't read, because her brain is on fire. It does not seem like just OCD. Sometimes she sees me as a monster (very distorted thinking) and she wants me out of the house. We had an Mri, that showed sinus trouble. We had EEG's that showed some sparks but no seiures. I was wondering if a CAT or Spect Scan may show something. We went to Dr. Trifiletti in Ramsey NJ. He has her on Azith. and she is sleeping through the night soundly for the first time in her life, but the azith. seems to be making her more aggresiive (kicked me toinginght in the ribs) Ugh!

[Priscilla]

I have only seend her look normal a handful of times for very short periods (hours.) Then goes right back into her aggitated world, with lots of imaginary friends and obsessions. She tells me that the thoughs won't stop bombarding her brain. She can't read, because her brain is on fire. It does not seem like just OCD. Sometimes she sees me as a monster (very distorted thinking) and she wants me out of the house. We had an Mri, that showed sinus trouble. We had EEG's that showed some sparks but no seiures. I was wondering if a CAT or Spect Scan may show something. We went to Dr. Trifiletti in Ramsey NJ. He has her on Azith. and she is sleeping through the night soundly for the first time in her life, but the azith. seems to be making her more aggresiive (kicked me toinginght in the ribs) Ugh!

 

 

Seems sinus issues can be the culprit for alot of these kids, and it is strange the sinus area is where my dd reports her head pain after IVIG- The ivig nurse stated most people feel it in the back of the head. Makes me think it is doing some work in the sinuses. I don't know that CT would show any more than MRI (MRI is usually the more in depth) but I am not sure. Is she currently seeing a neurologist- maybe further investigation into the "sparks" could be helpful. It is obvious she has hyperactive neuro activity though (any many PANDAS kids do). How long has she been on ZITH? During my dd severe episode in April, it took at least 10 days for the omnicef to start working. It lost effectiveness though, she couldn't take zith (hurt stomach too much), then to Augmentin which took several weeks to show effects but seem to do a pretty good job (better with XR 1000mg than the 875mg) You may need to switch abx, but give it a little time before jumping. Has she had the full Lyme, Myco panel?? I haven't had it yet, but I am going for it this month. It is worth it for peace of mind, and if she has had this her whole life, some moms are reporting congenital lyme. There seems to be several different infections that can cause this, and we don't know yet how many could be passed in utero.

[kimballot]

Wilma - It sounds like you have been dealing with quite a bit for quite a while. It is so hard to know how much of this could be PANDAS related, but given her history and her sinusitis it makes sense to check for and clear out any infections.

 

Is someone treating your daughter's sinusitis? Are they trying to decrease the inflammation and address any bacteria that may be growing in there with an antibiotic? Are they considering allergies? It seems that those would be important things to check into. CT scan does have better resolution for sinuses than MRI but you already found a problem on MRI, so I don't know that CT is needed. Has a doctor asked you to do a CT? I would think someone would treat her based on the MRI.

 

Regarding ransacking the fridge for anything sweet - we sometimes see that with kids who have problems with yeast overgrowth. My son was on antibiotics for several years without taking probiotics or antifungals. In his case, the antibiotics stripped his gut and sinuses of "good" bacteria while it removed the bad bacteria from his sinuses. As a result, there was lots of room on the surface for yeast to grow in his gut and fungus to grow in his sinuses. Whenever we took him off antibiotics he would go CRAZY (including trying to run into the street). A very good physician's assistant helped me to see that when we took him off antibiotics and the good bacteria grew back, then the yeast would die off and send toxins in his system. He also craved sweets and breads - because these tended to feed the yeast. This is why folk now use probiotics (to re populate the good bacteria) and antifungals (to keep the yeast form growing) lots of times when they use antibiotics. I do not know if this is your daughter's problem, but I do know that there are lots of different gut issues and DAN! (defeat autism now!) doctors seem to be very good at finding them out. Also the book "the yeast connection" is beneficial for this.

 

Regarding the vibrator issue- that could be OCD or could just be a means of escape from all of the confusion and pain in her head. It is hard to know.

 

Also, as others have mentioned - have you done all the blood work that is commonly recommended for PANDAS kids? This includes a full immune status panel to look for any immune deficiencies (lots of kids with sinusitis are low in strep pneumonaia antibodies, and strep pneumoniae is one of the most common bacterial sinus infections). The immune status panel will look for other antibody problems as well. You should also check for ASO and DNASE b to look for strep infections (but realize that lots of kids do not get elevated strep titers even when they have strep - especially kids who are immune deficient). You should also check for mycoplasma and for lyme. Lyme is tricky because the Western Blot that is done by most labs is very inconclusive, but it is a start. If someone were to test positive on that standard test (which should be covered by insurance) then the doctors have something to work with. If they test negative, it is good to get an IGeneX lyme test if you can afford it.

 

The mixed response you are seeing with azith could be a result of Herxing (put that term in the search box for lots of info). Herxing can be seen as the bacteria die off. It is especially seen with lyme infections.

 

I hope I have not overwhelmed you with all of this, but you seem to be searching so hard for information and you have a complex case. I will pm some practitioner ideas for you from what I have read from others on the forum. Perhaps other people will pm you with ideas as well. You and your daughter deserve to get to the bottom of this. You have a long road ahead of you (we all do)... but you are clearly determined to find the correct path and weather the storm!

 

Best wishes!

[Kbossman1]

Hi Wilma Jenks, I wanted to tell you that it's not mentioned alot here, but I have wondered about it too... my daughter goes through spells where everytime I look at her she is playing with her private area....watching tv, riding in the car, even when we're trying to tuck her into bed at night. I don't know if that has anything to do with OCD or not? The first psychologist we saw said it was a coping response. She's been doing it since she was 3. We've tried not to make a big deal about it, and I think that it's pretty natural even for kids without OCD/ pandas but it's hard draw a line and let her know when it's absolutely not appropriate, but not make her feel ashamed at the same time....really hard. We have told her that she can't do that infront of other people and tried to leave it at that. So now when I see her doing it in the car, or the other day she was doing that while her grammee was reading a book to her, we just say stop that and she knows what I'm talking about. Just wanted to say that I'm glad that you had the courage to bring that up and ask about it, and I just wanted to let you know that I see that behavior with my daughter. She doesn't use anything else, but it does seem to come and go....as a compulsion.

[thenmama]

xxx

Edited March 26, 2013 by thenmama

[Wilma Jenks]

I had all the testing done. Dr. Trfilettie said is was normal, but has her on Azith. just to see what happens. She is getting nore violent. I had her on depakote, lamictal, luvox, celexa, trileptal, gabapentin. nothing stops her agitation and wanting to run in the street, masturbating, craving food and ransacking the house for sweets. i think this agitation is all the same in away. if its not the sweets... its the vibrator... if not the vibrator it is wanting to run in the street. it is this severe agitation. she is only able to sit in front of a tv. she is non functioning.

[kimballot]

I had all the testing done. Dr. Trfilettie said is was normal, but has her on Azith. just to see what happens. She is getting nore violent. I had her on depakote, lamictal, luvox, celexa, trileptal, gabapentin. nothing stops her agitation and wanting to run in the street, masturbating, craving food and ransacking the house for sweets. i think this agitation is all the same in away. if its not the sweets... its the vibrator... if not the vibrator it is wanting to run in the street. it is this severe agitation. she is only able to sit in front of a tv. she is non functioning.

Do you have the lab results from the testing Dr. T did? I find that all the doctors used on this forum address things a bit differently. They have different tests that they do and they even interpret tests slightly differently. I once had 4 different doctors look at the same lab work from my son, and the pediatrician said it was all normal, the neurologist said it looked like a mild strep infection - probably peri anal strep - the ENT said he was immune deficient, and the immunologist said he was immune deficient and had an active infection. This was the SAME PIECE OF PAPER!!

 

It is complicated and frustrating, but if you keep reading the posts on this site you will start to see patterns of how people help their children and that will help guide you to the right combination of medical professionals. One thing I have learned is to always get a copy of any test results myself and to ask about anything that seems off to me. I also have more than one doctor look at things if we are not seeing progress. I'm not sure if it takes a village to raise a child, but I do know it takes a team of professionals to help a child with PANDAS-related issues!

[Fixit]

Do you have the lab results from the testing Dr. T did? I find that all the doctors used on this forum address things a bit differently. They have different tests that they do and they even interpret tests slightly differently. I once had 4 different doctors look at the same lab work from my son, and the pediatrician said it was all normal, the neurologist said it looked like a mild strep infection - probably peri anal strep - the ENT said he was immune deficient, and the immunologist said he was immune deficient and had an active infection. This was the SAME PIECE OF PAPER!!

 

It is complicated and frustrating, but if you keep reading the posts on this site you will start to see patterns of how people help their children and that will help guide you to the right combination of medical professionals. One thing I have learned is to always get a copy of any test results myself and to ask about anything that seems off to me. I also have more than one doctor look at things if we are not seeing progress. I'm not sure if it takes a village to raise a child, but I do know it takes a team of professionals to help a child with PANDAS-related issues!

 

Amen..ditto...i agree