Crying again is this good?

[T_Anna]

On Thursday I went to see a Dr.Hollander (NYC). He recommended a few changes to DS14's medicines. He made the following changes: Deplin (15mg) instead of folinic acid, increasing the NAC to 2400 up from 1200 and increasing the Luvox from 75mg to 100mg CR version.

 

Today was day 1 of Deplin (15mg), day two of NAC at 2400 up from 1200 and day 2 of Luvox up from 75mg to 100mg CR version.

 

DS mentioned he was anxious today, but seemed much more engaged and social. He ate better too. However he started crying when he finally decided to go to sleep at 4:00am and cried for about an hour (haven't seen that since January).

 

Any thoughts? Should we give the meds a few more days and see if things get better? Is this finally what turning back the pages looks like?

 

Btw, DS is also on Augmentin XR, Valtrex XR, Doxcycline, Azithromycin, for strep, MycoP, coxsackie, EBV.

 

Thoughts? Advice?

 

I can weather the storm as long as I know this is part of the process.

 

T.Anna

[LNN]

I think any time you make changes and see changes, it's part of the process - you learn things. But whether this is the turning the corner you're hoping for - still way too early to know. It's so tempting to put a lot of hope on small changes. It does show you he's still reachable and you should have hope for the long term. But I'd try to brace yourself for a bumpy road.

 

The changes you've made are fairly significant IMO. These are high doses, you've made all three changes within 2 days and there wasn't any titering up. So after a few days, you may see that at least one of the changes you've made might've been too high and unfortunately, you won't know which one should be reconsidered. This may be the right dose for all three, but it's never worked that way in my house. You may want to consider only increasing one of these things and backing down to original doses on the other two for at least a week and then upping another one, giving that a week or two and then upping the third.

 

NAC can be a biofilm buster and with the myco and viruses, it's possible he has biofilms. Using/increasing NAC could produce a herx and if he's not ready for it, it could make things worse. Also, you need to be giving methylB12 along with the Delpin or it won't get properly used by the body. I know Hollander is a big wig but if he hasn't advised you to take methylB12 along with the Delpin, he's playing with stuff he doesn't understand.

 

You may want to consider only increasing one of the three over the weekend and going back down to the previous doses of the other two and then calling Hollander on Monday to seek clarification and discuss a titering up plan on increasing the other two meds. I know you desperately want your son back and I'm certain you'll eventually get there. I've just found that slow and cautious is a better way to get there.

 

Wishing you a hopeful weekend!

[NancyD]

I agree completely with Laura re titrating up very slowly --- that's something I would do over a period of weeks. And the importance of taking MB12 and B6 with the Deplin. Another thing to know, Deplin has artificial dye in it. Many children react very badly to artificial dye as it seems to cross the BBB very quickly. It magnifies all of my DD's issues 10-fold if she gets the slightest trace (particularly red or blue dyes). It increases her anxiety and moodiness and results in rages.

[Hopeny]

I hope this doctir is helpful for you. i agree on the changing things slowly. I try to see how manageable reactions are, if its something where child presents a danger to themselves or others I stop. My view is that any psych meds for children/adolescents should really be prescribed and monitored by a psychiatrist who had trained for years on how to manage psych meds which are extremely powerful and can both help and have serious and consequential unintended effects. Just so something to consider before adjusting psych meds

[T_Anna]

Thanks. Dr.T just wrote that I should continue the folinic acid. Now I have to figure out which to bring back down. Maybe Luvox as it isn't only higher but also a CR with longer release.

 

What would "activated" look like?

 

T.Anna

[MomWithOCDSon]

"What would 'activated' look like?"

 

In our experience with our DS, "activated" is generally more of the behaviors and emotional lability that you're trying to quell, rather than a reduced level of it. Some kids get generally hyper; our DS got more high-strung, more "friable," if that word makes any sense to you. Meaning more emotionally fragile, easier to set off, etc.

Edited April 20, 2013 by MomWithOCDSon

[4Nikki]

I read some of your posts and I feel so inadequate to handle my DD symptoms. It's been about 6 weeks since My DD has completed her Amox. She was extreme symptom free after fights the past 4 months and now the past four days she has daily crying bouts and started with a little rage today again. I'm only able to help her fight the symptoms with Anti Inflammatories and over the counter alergy meds. We don't know how to the the professionals on board with identifying the cause but that's to many of the posts on this site we have been able to help DD manage the symptoms. DD is calling....

[T_Anna]

Ok, so that doesn't seem to be what we had last night. Today was a slight improvement. True test will be tonight.

 

Wish me luck,

T.Anna

[T_Anna]

4Nikki, is DD on any abx now?

T.Anna

[4Nikki]

DD is not on Abx, we are still trying to get her diagnosed. Tried to get in to see her new doctor but she wants to see her before making any prescriptions. Her first prescription was amox for 10 days because of the strep. We felt the need to change her primary doctor because she just had a tough time believing DD behavior is anything but stubbornness. DD struggled with keeping control yesterday but we were able to keep of the rage away by keeping her mind occupied with other things to do till the ibuprofen wore off. After a 30 min episode before bedtime, we gave her ibuprofen and benadryl. She was able to make it through the night ok. This morning she work up and started off with what we think is her OCD. She also has a noticeable sore throat. Mom is trying to contact her doc and we are thinking to bring her it urgent care. Our problem is we don't have the test that identify anything except for a positive AOS titer. New doc needs all the feed back from testing that hasn't been done yet before she make a plan.

 

DD went into the bathroom where she can have privacy to do her OCD thing. We stopped her from typically going to her bedroom to do her OCD to break the repetitive behavior where she can't seem to keep herself from loosing control there. She readily accepted this, I think because she wants to be in control. I spoke with her and she wants to see the doctor to get the bugs out even though the has extreme anxieties with going out. For 14 years she has been mostly non verbal but this OCD thing makes her a nonstop motor mouth in the house.

[T_Anna]

It sounds as though she was reinfected. Maybe you can go to urgent care and she'll test positive for strep. The one near us seems to hand out abx prescriptions like candy.

 

Where do you live, maybe someone on the list can help get you in somewhere sooner. Sounds early enough that you can still head off a huge flare.

 

T.Anna

[4Nikki]

We are in So California, typically all the professionals we were connected with wanted us to admit her to a facility. We were thinking we could get urgent care would give the abx but we also don't want to circumvent her primary care doctor. DD with Dad's encouragement can keep it under control, but mom and big brother have a very hard time. Right now she is controlling it in her safe place. I have important work in the morning and can't be home so I'm more worried tomorrow when I'm not around. DD has an appointment with her primary care doctor Monday. Mom has an injured shoulder and DS has school so it will be difficult for mom to handle DD. We will get UCLA recommendations Tuesday and DD will see a Dentist on Wednesday. I'm not sure if DD will have enough control to make it through Wednesday. So I just talked with DS and he will miss his class tomorrow to help.