is it possible? I'm a mess

[bgbarnes]

My ds had an allergy test on Tuesday- basically nothing showed up as reactive- mild trees, grass and dogs- even though is ige is elevated. However every Spring something changes in my son and he becomes a MASSIVE behavior problem.....

Then for the past few days-definitely feeling the PANDAS ramp up- has been in the principals office for physically hurting kids 2 out of the past 3 days. The first one on Wednesday- he SWEARS he did not do- the teacher saw his arm on her and 3 other kids saw it. He supposedly dug his nails into her arm- he does this- I have scars... Wednesday night-when I saw him step on his sisters foot I asked him why he did it- he said because I stepped on the other one and I felt weird if I did not do the other ( I don't know much about OCD- but this did raise some flags- however I might just be super paranoid)....Wednesday he also he hit his sister with a stick- even though he knows that is not allowed and sort of had a similar answer- he did it because he had to....

 

Today he bent a kids hand back at field day and insists it was an accident. I tried to get him to write an apology letter- then all ###### broke lose... had a MAJOR meltdown- I did not handle well either- his mouth really gets to me

last night wet his bed, he is overly emotional, defiant, tried to bite me etc-

 

could the allergy test invoked a flare up of some sort?

 

He is on day 8 of Omnicef but I am not seeing any major results like I did last time.....My Dr waited a month with frozen blood before sending it to Cunningham-he forgot to run ASO titers etc...so I don't even know where we stand with all of this right now..... they won't be able to run the Cunningham until next week- it got there too late last week and they didn't do one this week.....I am so frustrated and feel like a Horrible MOM- I did not handle his meltdown at all. I feel guilty because his Dad picked him up for the weekend( we are divorced) and I am honestly relieved that I don't have to deal with it for a while but then I feel horrible at the same time and want to take care of my little boy.

I am a mess....

Brandy

[Phasmid]

Oh gosh, I know that feeling, where you wish there was some way you could press "rewind" and undo all that was said. That is THE worst feeling. So sorry you are going through that. You are not alone- we all get there at one point or another. I have at times felt like I needed to sign away any parental rights, and have both dad and I put him up for adoption or grant custody to a family member or something, and me move out. It is very sad to experience, but we just aren't equipped mentally, emotionally to deal with the personalities created by this disorder. Not your fault, not his fault, just a thing that "is" unfortunately. What do YOU feel is the best way to respond after the fact? What would your son want/need after a bad week? I don't have any solutions, being that I have got to be the worst parent amongst us, but just want you to know I understand how it is so much more than we can handle. I guess we just need to start praying. How did the Omnicef help before?

[tpotter]

Absolutely, the allergy testing could have triggered this. Once PANDAS occurs, anything can trigger it (colds, allergies, flu, strep, etc., etc..)

 

I totally understand "the mouth." I have recently had to walk away myself, when my kids are going off the deep end, because of their mouths. It's REALLY tough. Sounds so behavioral, and of course, afterwards, we all know it wasn't on purpose.

[simplygina]

I don't know about the allergy test, but I do know that my son does not tolerate Omnicef well emotionally at all.

 

My son ramps up in the Fall. He doesn't really show signs of allergies but I think it has something to do with them because it is the same time of year every year.

 

Also, my son's major form of OCD is the evening up thing. What your son does is pretty much what mine does, if he bumps one arm against the doorway he goes back to bump the other one. If he taps me with one hand he has to tap me with the other.

 

My son has also gone through periods of aggression & insisted it was an accident. I finally realized he meant he couldn't help it. He did the clawing scratching thing a lot in Kindergarten. I'm so glad he has grown out of that one but his little brother has a nice big scar across his forehead for us to remember it by.

 

I don't know how old your son is, but my son did mellow out a bit on the aggression at around eight. Taking karate has also really helped him with discipline and it gives him somewhere "legal" to work through his aggression as well.

 

The one thing that has really changed my son's overall disposition has been Biaxin. His ability to be patient, cope with frustration and be more flexible overall has improved tremendously. Like a miracle drug. Unfortunately he can't continue to take it full dose any longer because we're worried that it could cause damage to his gut. We're weaning him off and I'm starting to notice he isn't handling things as well. Not sure what we will do long-term because now that I know how happy he can be, I don't want to go back!

 

Don't you just love the guessing game we all get to do?!

[peglem]

Summer of 2006, my daughter was on omnicef awaiting tonsilectomy, supposedly so we could enjoy that trip to disney...she did very badly on it, the trip was ruined! We don't use it anymore.

[kimballot]

When my son was younger he had a HUGE reaction after high-dose (traditional) allergy testing. I am assuming this was traditional allergy testing that you did. Traditional testing is certainly good and has its place. However, for some kids with more subtle symptoms a provocation/neutralization (P/N testing) works better. This can be done by environmental allergists or some DAN! doctors.

 

You can also try a rotation diet (see Doris Rapp "is this your child").

 

In the meantime, are you using an antihistimine?

[bgbarnes]

When my son was younger he had a HUGE reaction after high-dose (traditional) allergy testing. I am assuming this was traditional allergy testing that you did. Traditional testing is certainly good and has its place. However, for some kids with more subtle symptoms a provocation/neutralization (P/N testing) works better. This can be done by environmental allergists or some DAN! doctors.

 

You can also try a rotation diet (see Doris Rapp "is this your child").

 

In the meantime, are you using an antihistimine?

Thanks everyone! DS is 7 almost 8...so here's hoping to outgrow the aggression!!

It is so nice to go to a place where I can get ideas or know I am not alone! The Dr was shocked at the allergy test results due to his elevated ige and his nose was inflamed and gave us a nasal spray and I have been giving him Claratin ever since. Should I give him something else? Our Dr that did the allergy test is a Dan dr but did the traditional test. He basically said- let's wait for the Cunningham test before we move forward....so it looks like next week dictates our next move.

Thanks for letting me get it off my chest- I just want to hold him and apologize over and over again for not being calm- I lost it......but we have talked several times and we are good-I just want to hold my baby and FIX his pain!

Brandy

[bgbarnes]

I don't know about the allergy test, but I do know that my son does not tolerate Omnicef well emotionally at all.

 

My son ramps up in the Fall. He doesn't really show signs of allergies but I think it has something to do with them because it is the same time of year every year.

 

Also, my son's major form of OCD is the evening up thing. What your son does is pretty much what mine does, if he bumps one arm against the doorway he goes back to bump the other one. If he taps me with one hand he has to tap me with the other.

 

My son has also gone through periods of aggression & insisted it was an accident. I finally realized he meant he couldn't help it. He did the clawing scratching thing a lot in Kindergarten. I'm so glad he has grown out of that one but his little brother has a nice big scar across his forehead for us to remember it by.

 

I don't know how old your son is, but my son did mellow out a bit on the aggression at around eight. Taking karate has also really helped him with discipline and it gives him somewhere "legal" to work through his aggression as well.

 

The one thing that has really changed my son's overall disposition has been Biaxin. His ability to be patient, cope with frustration and be more flexible overall has improved tremendously. Like a miracle drug. Unfortunately he can't continue to take it full dose any longer because we're worried that it could cause damage to his gut. We're weaning him off and I'm starting to notice he isn't handling things as well. Not sure what we will do long-term because now that I know how happy he can be, I don't want to go back!

 

Don't you just love the guessing game we all get to do?!

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new....

Brandy

[kimballot]

Brandy,

 

Previous posts have shown that kids seem to react differently to different allergy medicines. Some do best with Claritin, some Zyrtec, some Benadryl, some with natural supplements.

 

I will tell you that we use zyrtec. I used claritin once when my son was in elementary school I got a call from the teacher within 2 hours asking me WHAT I had done!! He was a hyperactive mess. We laughed and I promised to never do it again.

 

Most recently, the doctor has us switch to singulair. Within 2 days my son was totally itching and scratching. We changed back to zyrtec and were fine.

 

So... you might want to try something other than claritin!

[bgbarnes]

Brandy,

 

Previous posts have shown that kids seem to react differently to different allergy medicines. Some do best with Claritin, some Zyrtec, some Benadryl, some with natural supplements.

 

I will tell you that we use zyrtec. I used claritin once when my son was in elementary school I got a call from the teacher within 2 hours asking me WHAT I had done!! He was a hyperactive mess. We laughed and I promised to never do it again.

 

Most recently, the doctor has us switch to singulair. Within 2 days my son was totally itching and scratching. We changed back to zyrtec and were fine.

 

So... you might want to try something other than claritin!

Thanks! Will go to the drug store tomorrow! Why can't this be easier????

[ma2ar2rm2]

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new....

Brandy

 

 

I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff....

[bgbarnes]

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new....

Brandy

 

 

I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff....

 

I am right there with you and ds will be 8 in less than 2 weeks so I can imagine your life up until now.....- we are about 6 weeks into this and the night wakings, behavior, enuresis, need to have the night light on, his repetitive statements when exacerbated I thought was just being defiant, his reverting to talk like a baby from time to time, his inability to sit still sometimes but perfectly others his real truth that he could not control himself and how I always thought he could...now don't get me wrong my son is still willful when he is not exacerbated and will try and manipulate everyone but you can reason with him- when exacerbated- not a chance......I know that now and I still could not help getting really mad at him today- tomorrow I will do better.

[tantrums]

I was also wondering if your child is taking any allergy medicine. Interesting to see others comment on the Claritin! Long ago, before any PANDAS or behavioral issues, my son began seasonal allergy issues and the doctor recommended Claritin. Within hours of the first dose, he literally began screaming and throwing things! it was very disturbing! Needless to say, we never used Claritin again. He did better with Zyrtec, but is now on astepro nasal spray which he does well with. The immunologist was going to RX singular (I think that's what it was anyway) but did say that she really was hesistant to try that because it is known to cause sleep disturbance and we already have huge issues in that area including bad night terrors and sleep walking. In fact, when I first saw her when the PANDAS appeared, she told me she instantly checked the chart in a panic to make sure she HADN'T prescribed that and caused this. I found that interesting.

 

We did fine with the allergy testing, but that was almost a year before his first PANDAS episode appeared so probably didn't apply to us.

[Lori Ann]

You are not alone. I keep saying the same thing, "tomorrow, I will do better". My sweet, smart, little six-year old boy has become someone else. I know this is not comparable to physically losing a child, but I feel grief as if I have lost my son. We are still waiting for an official diagnosis, but after reading about PANDAS, I know this is it. He is responding to amoxicillin and our Ped has been supportive and has extended his prescription, but somehow I do not think this will be enough. He has manifested symptoms (facial and vocal tics, hyperactivity, defiant behavior, etc...) for several months now. I miss my baby and want him back.

 

 

 

 

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new....

Brandy

 

 

I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff....

 

I am right there with you and ds will be 8 in less than 2 weeks so I can imagine your life up until now.....- we are about 6 weeks into this and the night wakings, behavior, enuresis, need to have the night light on, his repetitive statements when exacerbated I thought was just being defiant, his reverting to talk like a baby from time to time, his inability to sit still sometimes but perfectly others his real truth that he could not control himself and how I always thought he could...now don't get me wrong my son is still willful when he is not exacerbated and will try and manipulate everyone but you can reason with him- when exacerbated- not a chance......I know that now and I still could not help getting really mad at him today- tomorrow I will do better.