I don't know how much longer I can take this..

[wornoutmom]

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[melanie]

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

 

Hi

 

I truly feel for you and your son.I know this is so hard and your feeling hopeless .If the risperadal is helping right now why dont you just keep him on it until you can see dr l.Danny takes that too I hate to give it to him to but for now I have to,so I do.Does it help?How much is he taking ?Danny is taking .25 x2 he was taking .5 x2 but I think it made him worse.The psychs job is to prescribe medication for the psyc symptoms,remember that,they really dont try to fix them just make them managable.Whenever you call them they will just suggest more meds or a new one.Like little guinney pigs.(sp)SSRIs make everything worse and weening them off is tourture,for them..

Keep me posted Im here

 

Melanie

[forjpj]

I'm praying for you! It is heartbreaking! And, unfortunately we all have those times! I've been feeling guilty cause I started giving my son Benadryl so he fall asleep easier at night. Hang in there...I'll send good thoughts your ways!

[momto2pandas]

I'm so sorry that your family is going through this. You might want to give the Depakote a try. After I was dx with autoimmune neuropsych issues instead of "classic" ones, my psychiatrist wanted me off of all psych meds, except that he made sure that I always had a current bottle of Depakote. If I got an infection and started to "go under" fast, our plan was that I would pop Depakote. This was a long time ago, and I can't remember the dose or how often (times per day) I took it during flares, but it worked great. I never had to take it for more than a couple of days. I went on like that for years, probably taking a total of about 15 Depakote or so per year, as needed. The strange thing is that mood stabilizers, like antidepressants, are said generally to take at least several days to start working. That was never the case for me - they worked within a day at most, the Depakote worked definitely within hours. I used Depakote for mood problems the way one might use tylenol for a headache. There is nothing that prevents one from taking background antibiotcs AND Depakote. Probably wasn't until 10 years ago that I stopped keeping a bottle around "just in case."

 

 

 

 

 

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[momto2pandas]

p.s. While I was still on the psych med route way back when, I also got too activated and would "rapid cycle" moods with any more than about 3 days' worth of SSRIs, and Depakote was my antidote to that. Put a dead stop to it. I never wanted to stay on Depakote because it felt like a heavy hammer to my issues (hard to describe), but there were times when a heavy hammer was exactly what I needed.

 

 

I'm so sorry that your family is going through this. You might want to give the Depakote a try. After I was dx with autoimmune neuropsych issues instead of "classic" ones, my psychiatrist wanted me off of all psych meds, except that he made sure that I always had a current bottle of Depakote. If I got an infection and started to "go under" fast, our plan was that I would pop Depakote. This was a long time ago, and I can't remember the dose or how often (times per day) I took it during flares, but it worked great. I never had to take it for more than a couple of days. I went on like that for years, probably taking a total of about 15 Depakote or so per year, as needed. The strange thing is that mood stabilizers, like antidepressants, are said generally to take at least several days to start working. That was never the case for me - they worked within a day at most, the Depakote worked definitely within hours. I used Depakote for mood problems the way one might use tylenol for a headache. There is nothing that prevents one from taking background antibiotcs AND Depakote. Probably wasn't until 10 years ago that I stopped keeping a bottle around "just in case."

 

 

 

 

 

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[GatsMom]

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

 

I have had the misfortune of having my son say, "I quit!". It is terrifying and exhausting. I am so sorry for what your family is going through but you are not alone. Have you tried epsom salts (magnesium sulfate) baths or oral magnesium supplementation? We use both around here, a little trick I picked up in the DAN! protocol. 2-3 cups of epsom salts in a bath (he listens to music, talks on the phone, sometimes just chills out) for about 25 minutes. In our most challenging days, he was taking 2-3 baths per day. Our DAN! likes Magnesium Glycinate for oral supplementation, they can tolerate higher doses. Comes in powder form and I mix half a teaspoon into a couple ounces of 100% grade juice. He can't taste it. Magnesium is a very important supp during times of increased stress. It's a relaxant, sleep aid and antidepressant. Cheap and not contraindicated with anything. And yeah, I take it, too. If he won't do the bath, you can buy mag sulfate cream. Kirkman labs make both. Just a thought. Hoping for a better day for you tomorrow.

 

Gat's mom.

[thereishope]

I'm sorry you're having a tough time.

 

Didn't your son have the staph infection in the sinuses? Who gave the Omnicef script, the ENT? I don't now what the standard med is for staph. If it was the ENT, I'd call them and say the Omicef isn't working and you need something else.

 

You say you saw improvement at first then he's been backsliding for days now?

[matis_mom]

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

Wornoutmom,

Just two thoughts...

1) maybe he just needs a different antibiotic, or a stronger dose.

2) make sure you get everyone tested for strep. Every single time my ds has had an exacerbation, it was due to someone else in the house having strep.

I don't know about he psych. drugs, but it sounds like he might just need them at this point to make the situation beareable for the whole family!

I am sorry you are going through this! You could probably use a good Epsom Salt bath, try it...

[wornoutmom]

I'm sorry you're having a tough time.

 

Didn't your son have the staph infection in the sinuses? Who gave the Omnicef script, the ENT? I don't now what the standard med is for staph. If it was the ENT, I'd call them and say the Omicef isn't working and you need something else.

 

You say you saw improvement at first then he's been backsliding for days now?

 

 

The immunologist told me staph is commonly found in 85% of people's sinuses. So I don't know if the staph is significant at all. I'm grateful for your advice on calling the ENT. I hadn't thought of that and maybe they will give me some Zithro. No improvement day 1-2. We saw improvement on day 3 and 4 on the omnicef. Day 5 and 6 have been ######.

[thereishope]

Some docs still say it is okay to constantly test + for strep if you don't have symptoms. That is isn't true, esp for PANDAS kids. I bet it's the same with staph and PANDAS.

[PatAnne]

I can really relate, I know how bad you feel. When we took our son compltely off even his TINY dose of zoloft, he really suffered when we hit an exaserbation. My bet is your son no longer has that part of his net and is really struggling. This is why getting kids off of these meds is so difficult.

My son is going though a bad time right now too (post viral) and I honestly feel beaten to a pulp too. Recent labs point to C4 deficiency (which we knew about) and 1 of 14 step p. titers, but I don't think we have a prayer for IVIG. Add this to the eye rolling doc's we continually deal with and I'm wishing I had amnesia...

Take care!

PatAnne

 

 

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[momto2pandas]

Hi Wornout -

 

I'm sitting here thinking about you guys this morning and hoping that you're having a better day. When the psych took him off of the Celexa because it was "activating" him, was he actually getting manic? If so, he may be on the downswing from that. Downswing from mania is the really the worst. Just my experience, but once I really got into that bipolar cycle from an SSRI, I don't remember ever being able to get out of it without at least a little Depakote (or Tegretol, which we also tried - good too but not as quick) no matter what was going on with my infectious status.

 

Hoping for a good day for you.

 

• 
  

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[michele]

I feel your frustration. My son was recently sick Sat. Sun. and Mon. with fevers and sore throat. It seems his brain BBB gets inflaimed and after the illness he gets off the wall manic behaviors. Add to that the excitement of his b-day party Sat. and he is bonkers. The past two days have been bad here too. I have been working so closely with the psychiatrist and I felt we were making progress in Nov and early Dec. but then this setback and now it seems like he is unmedicated by his actions. When actually he is on Risperdal, tenex and prozac. I upped the prozac to 10 last week but have not noticed it yet. The risperdal is at 2 mg and the tenex at 2 mg a day also. What doses are you on? I noticed a big improvement when adding the tenex and prozac. He seemed less hyperfocused and less impulsive. Now it is back with the compulsions for webkinz and getting stuff. He says such mean stuff also to me. Does your son? He just seems impulsive, back cracking his toes and fingers and doesn't think before he shouts out bad things. Maybe those are tics. The tics are more verbal now then before. Plus he gets really fixated on weiners buts and privates. I should be embarrased to post it but that is my life. Do other people notice this with PANDAS boys? He also seems like he is agrivating his sisters and really showing the two year old some bad stuff. Try putting him on time out and I get a screaming backlash. It is so exhausting. Of course the school never sees a thing! I never hear anything but praise from them. I just can't image how one could go through this with no medication for these behaviors. We also added 500 mg of amoxicillin Sun. I am so depressed I started cymbalta last night for my fibromyalgia. I have to do something. I am turning into a short tempered mom who's hands and feet are swelled up and ache and has no energy.

Hi Wornout -

 

I'm sitting here thinking about you guys this morning and hoping that you're having a better day. When the psych took him off of the Celexa because it was "activating" him, was he actually getting manic? If so, he may be on the downswing from that. Downswing from mania is the really the worst. Just my experience, but once I really got into that bipolar cycle from an SSRI, I don't remember ever being able to get out of it without at least a little Depakote (or Tegretol, which we also tried - good too but not as quick) no matter what was going on with my infectious status.

 

Hoping for a good day for you.

• 
  

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[momto2pandas]

That is so funny about the weiners and butts and so on. I have two young boys (3 and 6) with PANDAS and I have definitely noticed increases in "potty talk" when they flare. I wouldn't really call it obsessive or compulsive in the sense that there is unpleasant pressure to do it (tic-like) or that it's all day long, but when I get them in the backseat of the car together when they are having "off" times, they spend the entire time talking poops and farts and butts and cracking each other up maniacally with the noises they make, almost like they are drunk or something. My friends say that their boys do that too, but I have definitely noticed that mine do it primarily when other stuff is flaring up. Never gave it too much thought.

 

 

I feel your frustration. My son was recently sick Sat. Sun. and Mon. with fevers and sore throat. It seems his brain BBB gets inflaimed and after the illness he gets off the wall manic behaviors. Add to that the excitement of his b-day party Sat. and he is bonkers. The past two days have been bad here too. I have been working so closely with the psychiatrist and I felt we were making progress in Nov and early Dec. but then this setback and now it seems like he is unmedicated by his actions. When actually he is on Risperdal, tenex and prozac. I upped the prozac to 10 last week but have not noticed it yet. The risperdal is at 2 mg and the tenex at 2 mg a day also. What doses are you on? I noticed a big improvement when adding the tenex and prozac. He seemed less hyperfocused and less impulsive. Now it is back with the compulsions for webkinz and getting stuff. He says such mean stuff also to me. Does your son? He just seems impulsive, back cracking his toes and fingers and doesn't think before he shouts out bad things. Maybe those are tics. The tics are more verbal now then before. Plus he gets really fixated on weiners buts and privates. I should be embarrased to post it but that is my life. Do other people notice this with PANDAS boys? He also seems like he is agrivating his sisters and really showing the two year old some bad stuff. Try putting him on time out and I get a screaming backlash. It is so exhausting. Of course the school never sees a thing! I never hear anything but praise from them. I just can't image how one could go through this with no medication for these behaviors. We also added 500 mg of amoxicillin Sun. I am so depressed I started cymbalta last night for my fibromyalgia. I have to do something. I am turning into a short tempered mom who's hands and feet are swelled up and ache and has no energy.

Hi Wornout -

 

I'm sitting here thinking about you guys this morning and hoping that you're having a better day. When the psych took him off of the Celexa because it was "activating" him, was he actually getting manic? If so, he may be on the downswing from that. Downswing from mania is the really the worst. Just my experience, but once I really got into that bipolar cycle from an SSRI, I don't remember ever being able to get out of it without at least a little Depakote (or Tegretol, which we also tried - good too but not as quick) no matter what was going on with my infectious status.

 

Hoping for a good day for you.

• 
  

I am feeling so scared and overwhelmed right now. I've been fighting so hard to get my son back on Omnicef and he's finally on it and it doesn't seem to be helping! He's on day 6 of it. The last few times he went on it we'd seen so much improvement by now. We had 2 days with no meltdowns (Sunday and Monday) and I was hopeful. But the last 3 nights have been back to square zero. He's exhausted. His obsessions are worse. He needs to know what's happening, he needs to do something. Today after school he said his head hurt and he was tired. I gave him him antibiotic and Advil..hoping. He got agitated about wanting to buy some expensive thing off EBay. I left to pickup my younger son from school. When I got back he was sleeping. I woke him at 5:30 to eat and he immediately started melting down about not getting to do anything tonight. I can't talk to him at all when he is like this. He just groans and screams the same thing over and over. It goes on for hours. His dad was home tonight and thank god he was in a better space emotionally than me and dealt with it. Finally got him to take some more Risperdal (our rescue remedy right now) and calmed him down enough to get him out of the house. I swore I wasn't going to change his psych meds before we see Dr. L in Feb., but I can't keep just watching this every day. This has happened 10 out of the last 13 days - some times more than once a day. After spending 40 minutes last week convincing our psychiatrist to try antibiotics and not Depakote, I feel like I can't call him again to ask advice! He is so depressed and just wants to die. He can't even get to his beloved hockey practice, and tonight just threw up his hands and said "I quit". We weaned him off of Celexa in Dec., after phone consult with Dr N, who thought it may be activating him, and it seems like with the last 10 mg this all started. But it corresponded with going off the antibiotics too so I attributed it to that. Now I'm not so sure. I really wanted to wait this out until we saw Dr. L, but I feel like I'm torturing him and I'm so burnt out I'm ready to take him to the hospital. He is terrified of the place and won't go willingly, and it's an hour away. We'd have to involve the police or something to get him there and I don't even know if they'd admit him because he hasn't tried to hurt himself. I horribly almost wish he would so I could just make the call and know I'd done the right thing. Cause right now I feel like nothing I am doing is the right thing...

[dcmom]

wornoutmom- I am so sorry your family is going through this now. Dr Latimer is very compassionate, and really tailors her treatments to each patient- so have faith she will help you.

 

It took my daughter 30 days on zithromax to see improvement. Two weeks of amoxicillin and then two weeks of omnicef did nothing. The antibiotics take time. If your son doesn't have tics, I would strongly recommend a month long steroid burst. It might jumpstart healing, or at least, give him a break. That has helped my kids dramatically. I am not familiar with any of the psych meds. I would think (like you stated), if it is possible, try to keep him off of them until you see Dr L- that way you can start immediately on her protocol without any weaning time. I know she only likes to change one variable at a time, as well.

 

Hang in there, February will come. In the meantime, I guess if you can keep stress down to a minimum for him. Lots of rest, even extra tv time (helped my dd), good foods, and out door exercise. If he has trouble in school, take some half days- or forget the homework for now.

 

I know it is a horrible place to be in...