Frustrated and Exhausted

[Nita]

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

[fuelforall]

My kid's only 9 and I get your feeling. Boy, do I!

But you've done IVIG and it's been three weeks.

Give it six, if you can make it.

We're approaching three weeks ourselves. It's #&$%_!

Hope you got the appropriate IVIG dosage.

 

I thought intuniv was mainly for attention issues, a little calming, I guess. Are you up to three pills a day?

No, the facilities you mention do not help. They may make matters worse. Get relief, go on vacation, ease the pressure any way you can. If he's not in school, you might as well try to take him some place fun. Visit family, the kids do better out of familiar environs.

 

Good luck... of course

 

Michael

[sf_mom]

What antibiotic, dose and how big is your child?

 

My kid's only 9 and I get your feeling. Boy, do I!

But you've done IVIG and it's been three weeks.

Give it six, if you can make it.

We're approaching three weeks ourselves. It's #&$%_!

Hope you got the appropriate IVIG dosage.

 

I thought intuniv was mainly for attention issues, a little calming, I guess. Are you up to three pills a day?

No, the facilities you mention do not help. They may make matters worse. Get relief, go on vacation, ease the pressure any way you can. If he's not in school, you might as well try to take him some place fun. Visit family, the kids do better out of familiar environs.

 

Good luck... of course

 

Michael

[fuelforall]

Hey, SF MOM you talking to me?

I was just in SF visiting family with ds9, it was nice to get away.

My son is on 150 mg Clindamycin twice a day.

Wondering about a steroid burst, have a call into Dr. B's office.

[tired mom]

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

[Nita]

Thanks for your support and input, all. I have no one else to speak to about this - no one would understand. He is on arithromycin 250mg a day. He is allergic to pennicillin. He was on a stronger dose of a different antibiotic (forget name) for 2 weeks post IVIG.

 

 

 

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

[T_Mom]

Nita, is 250 mg of azithro considered FULL strength for his weight?

 

Did you see an improvement at all after IVIG or when he is on FULL strength antibiotics? If you did -- then would full strength (as much as he would get if he had strep) make sense for an extended period of time? This has been a life-line for many of us on here and has put an end to many Panda's symptoms--

 

All the very best to you--Dr. K does phone consults -- if necessary.

 

 

Thanks for your support and input, all. I have no one else to speak to about this - no one would understand. He is on arithromycin 250mg a day. He is allergic to pennicillin. He was on a stronger dose of a different antibiotic (forget name) for 2 weeks post IVIG.

 

 

 

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

[Nita]

He has had IVIG with Dr. K. He had him on 1000 mg. of clarithromycin for 2 weeks post IVIG. I saw improvement first week, now 2 bad weeks. Dr. K. says this can happen, esp. with older kids. I'm really hoping things turn around soon.

 

Nita, is 250 mg of azithro considered FULL strength for his weight?

 

Did you see an improvement at all after IVIG or when he is on FULL strength antibiotics? If you did -- then would full strength (as much as he would get if he had strep) make sense for an extended period of time? This has been a life-line for many of us on here and has put an end to many Panda's symptoms--

 

All the very best to you--Dr. K does phone consults -- if necessary.

 

 

Thanks for your support and input, all. I have no one else to speak to about this - no one would understand. He is on arithromycin 250mg a day. He is allergic to pennicillin. He was on a stronger dose of a different antibiotic (forget name) for 2 weeks post IVIG.

 

 

 

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

[MomWithOCDSon]

Nita --

 

We were exactly in your shoes about 6 months ago, with the exception that we had not done IVIG. But DS13 had such uncontrollable OCD with rages and meltdowns that he was 99% non-functioning. We had to pull him out of school. We considered an inpatient program but, frankly, a) wasn't covered by our insurance and like your son, his separation anxiety issues were so big, we weren't convinced it wouldn't do him more harm than good in the end.

 

We found, instead, what we thought was a good compromise: a "partial inpatient" program which was essentially a day program where we dropped him off at 8:30 a.m. and picked him up at 4:00 p.m. He could be with us every night, but he was getting several hours of therapy and drug management every day. Unfortunately, that STILL turned out to be a disaster. The program, though the provider had presented it as being appropriate for addressing anxiety/OCD issues, wasn't too different from what you describe. It was predominantly populated by self-harmers, suicidals, drug-addicted and/or homicidal teenagers; DS was the ONLY kid in the "program" with anxiety/OCD concerns.

 

I hope the Zoloft assists you as it did before, but I can tell you from experience there is a phenomenon known as "SSRI Poop-Out," which you may have heard of yourself. An SSRI seems to assist kid beautifully and yet one day, it just stops working altogether. Our DS experienced that with Lexapro. Despite strep and re-exposures over the years, Lexapro kept him functional for over 4 years (we didn't know about PANDAS and abx or IVIG then); but in his latest exacerbation, it did nothing. So he was switched, first to Zoloft and then to Prozac; neither of them did any good either. He's currently taking Luvox, though we're not convinced that's helping him, either; we're just hoping it's not hurting, and we've begun to wean him off, too.

 

Now our DS13 (about 130 pounds, by the way) is taking 2,000 mg. of Augmentin XR each day. He began that some 5 months ago, and then we began to try to wean him down. His behaviors escalated, though, after about 3 weeks on a reduced dose, so last week we put him back up to the full dose. His positive response has been almost immediate in terms of attitude adjustment and ability to manage the OCD compulsions.

 

By the way, he also takes Intuniv (20 mg.) and has been for about 3 months. It seems to help him maintain focus and not let the OCD "hijack" his focus, particularly when it comes to school work.

 

We haven't undertaken IVIG, but we reserve it as an option should DS's condition not resolve itself and remain manageable. I know that WorriedDad's son is also in our kids' age group, and he has done both IVIG with Dr. K. and is now on the 2,000 mg. Augmentin XR regimen, with good results.

 

I frequently hear of some "healing decompensation" that happens sometimes with IVIG, and maybe this is what Dr. K. is referring to; the kids sometimes have to get a little worse before they get better after the IVIG "resets" their immune system. But perhaps it is worth considering a higher dose abx while that IVIG healing gains hold. I would imagine Dr. K. would be open to that, especially given his level of experience overall and his particular experience with WorriedDad's DS.

[thereishope]

I am so sorry you're going through this. Have you had all family members checked for strep? If not, check everyone. Also, if strep has been the past culprit for you, I suggest taking him in for a strep test. Yes, you run the chance of a false negative since he's on abs, but some have gotten even + rapids while on abs. If he can take Ibuprofen, try giving him that too. Some have found that it will help ease PANDAS symptoms. Give it a 1/2 hour to kick in.

 

Does he have seasonal allergies? if so, keep those under control as best as you can.

 

We're here for you, Nita. You're not alone.

[Iowadawn]

I am so sorry you're going through this. Have you had all family members checked for strep? If not, check everyone. Also, if strep has been the past culprit for you, I suggest taking him in for a strep test. Yes, you run the chance of a false negative since he's on abs, but some have gotten even + rapids while on abs. If he can take Ibuprofen, try giving him that too. Some have found that it will help ease PANDAS symptoms. Give it a 1/2 hour to kick in.

 

Does he have seasonal allergies? if so, keep those under control as best as you can.

 

We're here for you, Nita. You're not alone.

 

Nita-

 

Hold fast. We have had the same kind of behavior so I can empathize. Three weeks post IVIG was about the point where our son came out of the incredible crazy behavior and started into a bumpy, yet clearly positive trend. He is 11 and has had this a long time. We are returning for a second IVIG next week with Dr. K. We asked to have him put on hd abx and Dr. K has had him on some since October. I will ask again after this one. We have had a heck of a time because our family unknowingly was a strep factory and he crashed 2 1/2mo post. All five of us has been on hd azithromycin for a month.

 

Look at the big picture, sometimes "different" behaviors are a good sign, even if they don't look that good. We sure saw some weird ones right after the IVIG! Weee! Like rapid cycling bi-polar!!

 

Hold tight.

 

Dawn

[sf_mom]

Nita, Try upping his dose to 500 m.g per day for 14 days. You should see improvement within 48 hours. If after 14 days you lower dose and symptoms increase bump him back up, again. It took us doing this 4 times until we figured out our son was making steady improvement on the higher dose post IVIG. We've maintain that dose, added bentonite clay and high dose probiotics and we are seeing continued improvement.

 

He is approximately 47 pounds.

 

-Wendy

 

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

[sf_mom]

Next time your in SF call.... always happy to meet other PANDAS parents. We have a little group of us out here.

 

Sorry, I meant the question for NITA.

 

Hey, SF MOM you talking to me?

I was just in SF visiting family with ds9, it was nice to get away.

My son is on 150 mg Clindamycin twice a day.

Wondering about a steroid burst, have a call into Dr. B's office.

[pathfinder]

Nita

 

My heart goes out to you as I went through something like this only about a month ago.

I think you are much better mom than I am to have figured out and made connection between his emotions to his behavior. I did not know what was wrong with my son16 when he was 13 yrs old and I sent him away to a boarding school to enhance his social skill and to get good grades for college entrance.

It was one of the biggest mistakes I ever made in my life besides not making connection with pandas sooner. I learned that there are kids with bigger problems than my sons. ( drugs for one)

 

I too worried that he would end up in a wrong place if he could not contain his anger and his controlling, insisting way (still worry) but things have gotten better and I once again feel there is a good future waiting for him as long as we don't give up on him.

I will not give up on trying until I know I did everything there is and that includes everything, I mean everything.

There are many meds that could help your child while you are trying to figure out everything that is going on.

 

My son was on SSRI alone for 2 yrs ( 5 different ones) but when he turned 12, ssri was not good enough to control his anger and other symptoms( in short just like your son's -- almost same)so Abilify was added. He did pretty well on them until I started to notice other problems. While I don't think these meds are answer, I do belive in doing everything for my child including medication if necessary.

 

Since my son's symptoms almost mirror yours except mine does not have separation anxiety, I would relate my son's medication experience with you if you are interested. (PM me)

Let's count our blessing with our kids strength. Our kids do not have many other challenges.

There are other parents who would die to have kids like ours. ( I almost believe in this myself sometimes)

 

You are not alone and help is coming ( somebody out there is studying and working to cure our kids condition, this I am sure of)

pathfinder from Diamond Bar

Edited April 13, 2010 by pathfinder

[T_Mom]

Nita, what does Dr K advise at this point?

 

Does he suggest to keep him on full strength antibiotics?

 

Would you consider a full month of antibiotics worth a try at least at this point?--to give it 3 to 4 weeks and see if he shows gradual progress over the next month?

 

-- this horrid illness takes time...for the brain and body to heal.

Best to you tonight--hold steady--