I REALLY NEED HELP!

[Wilma Jenks]

Thanks

Edited February 13, 2011 by Wilma Jenks

[MomWithOCDSon]

Inositol can help, acting as something like a "natural SSRI," but it is not immediate. Like most SSRI's, it takes time to help build up the serotonin in the system, and you are advised to begin it at low doses and slowly trying increasing over time, too. So, unfortunately, it's not going to be of much help to you right now, when your DD seems to need it.

 

Have you tried ibuprofen? If her behavior is linked to inflammation that may help some.

 

I would also suggest some Valerian Root; it is herbal and works quickly . . . usually within a half-hour, in our experience. It is calming to the extent that it can take the edge off the anxiety and give your kid a chance to use any other self-soothing tools she's developed.

[Guest pandas16]

Please give me some advice. She is on Vanco(7 days). and Difulcan(2days)... and OCD is really really bad at night. Worse then it has ever been. I swear it got worse after trying that azith, and nystatin. I think it stirred up the clostridia that she has. IS this possible. Has anyone tried Inositiol ever???? She can not keep going through this at nigiht. Any advice is very much appreciated.

 

 

My adult Rheum explained to me that some antibiotics such as Biaxin and Minocycline not only work by slowing down the growth of bacteria, but also buy activating a TH1 (pro-inflammatory) response within the immune system which can worsen autoimmune diseases. This can often be confused with herxing. Maybe Vanco is in this group as well. I just recently experienced quite a flare from Biaxin. About a week or two after being off of it, I felt overall much better.

 

Concerning Inositiol, I personally had an awful experience on SSRI's and I know some other people on this board have as well. I'd be very weary of a drug that mimics and SSRI and would not use it for myself.

 

Also, in order to reduce the amount of prescription drugs she's on, perhaps you can simply give a pro biotic to control yeast?

[Phasmid]

Wilma, your daughter seems to have much more going on than maybe can be explained by PANDAS. I went through your posts but couldn't put together much. I am left with more questions than answers. I can't offer much help. But I am concerned about her situation- she sounds very bad and I understand how worried you are. I think if she hasn't been seen in over one month by a physician (in person, not a phone consultation), then it is time to bring her in! She needs to be under the care of a good psychiatrist if she isn't already. PANDAS can explain the OCD and mood issues, but personally, if I were her parent, I would be feeling that there might be more to her condition. Does she have a psychiatrist? I am also concerned about all the meds- does she have a physician who knows all what she is taking? One thing I can offer is a suggestion to do a really good analysis of her diet and make sure she is getting solid nutrition- not supplements only. She needs a very nutritious diet. Are you able to determine if she has balanced nutrition? You need to do a 3-day intake on her, writing down everything she eats at each meal for three days. There are several guides that you can use online to calculate nutritional status. How are her eating habits? I know this isn't an answer directly to the OCD but I am a firm believer in super nutrition for kids with problems. Her brain needs good nutrition in addition to her medications. I can tell you that if her diet isn't giving her nutrient dense calories, her brain won't function no matter what meds you give her. Diet plays a huge role. What does she start out her day eating? What is for breakfast? By the time evening rolls around, if she hasn't had enough good nutrition, she may be worse off. Please follow up with her doc about the questions you are having. Her OCD may be more than PANDAS and to let things go may make her condition more serious later. She sounds like she is really suffering, and there really isn't much that any of us here can do to help!

 

 

[Wilma Jenks]

She has been seeing a psychiatrist(the 3rd one) and has been on a dozen meds. that make her worse. The psychiatrist gave her blessing to look into PANDAS, because they are open minded and they are having a hard time getting this child relief! I appreciate you response, thanks. I sound like an idiot on here, I know... but not many people around to vent too. It's just very hard, as you all know!!!

[amyjoy]

YES in addition to the avipaxin (i wrote on your other post which i highly reco) using the ibuprofen to max dose for her weight might help, and also, we use skullcap for sedation/calming support. I get it in a tincture at the health food store, does not interfere with meds, can work right away, like the valerian someone reco'd.

 

i hope you are finding some things to calm her...and take some yourself.

[T_Mom]

Hi Wilma, I share Phasmid's concern that your daughter have a "main" treating doctor who is aware of all the meds she is taking and that daily nutrition is a very critical part of all of this. Have you taken her to see the doctor in the last month? Is he/she aware of the crisis your daughter is in now? This must be so difficult for her as well as for you I am sure--

 

I know that when in a crisis we are typically seeking the doctor's help weekly--hoping for help in a tangible way.

 

May I ask what type of doctor are you seeing that prescribed the Vanco and Difulcan at the same time? -- on what basis? bloodwork? intestinal testing?

 

If this is PANDAS then have you seen a PANDAS knowledgeable doctor?

Have you seen a decrease in symptoms with antibiotics or a steroid burst?

 

If I were you I would run (not walk) to a doctor for her -- (which I would think you have already done --)

 

If you wonder if it could be PANDAS then be sure to see someone that knows PANDAS or that is willing to call a PANDAS knowledgeable doctor and consult.

 

You can have a phone consult with Dr K (www.webpediatrics.com) but if you are thinking it is PANDAS and trying to treat it as such, then you need to consult with someone that really does know the right antibiotics for PANDAS.

 

I truly hope you can find some knowledgeable help. The forum is a good site for support, and information, however none of us can prescribe nor advise over the internet like a good doctor may be able to do in person.

 

Please let us know where you are (perhaps you already have done this) and perhaps someone can suggest a good doctor close enough to drive to--also, at the top of the PANDAS forum is the Helpful Threads and in there is a posting of many doctors that people on the forum have found to be of help.

 

All the best--hugs are sent your way.

[Wilma Jenks]

Hi Wilma, I share Phasmid's concern that your daughter have a "main" treating doctor who is aware of all the meds she is taking and that daily nutrition is a very critical part of all of this. Have you taken her to see the doctor in the last month? Is he/she aware of the crisis your daughter is in now? This must be so difficult for her as well as for you I am sure--

 

I know that when in a crisis we are typically seeking the doctor's help weekly--hoping for help in a tangible way.

 

May I ask what type of doctor are you seeing that prescribed the Vanco and Difulcan at the same time? -- on what basis? bloodwork? intestinal testing?

 

If this is PANDAS then have you seen a PANDAS knowledgeable doctor?

Have you seen a decrease in symptoms with antibiotics or a steroid burst?

 

If I were you I would run (not walk) to a doctor for her -- (which I would think you have already done --)

 

If you wonder if it could be PANDAS then be sure to see someone that knows PANDAS or that is willing to call a PANDAS knowledgeable doctor and consult.

 

You can have a phone consult with Dr K (www.webpediatrics.com) but if you are thinking it is PANDAS and trying to treat it as such, then you need to consult with someone that really does know the right antibiotics for PANDAS.

 

I truly hope you can find some knowledgeable help. The forum is a good site for support, and information, however none of us can prescribe nor advise over the internet like a good doctor may be able to do in person.

 

Please let us know where you are (perhaps you already have done this) and perhaps someone can suggest a good doctor close enough to drive to--also, at the top of the PANDAS forum is the Helpful Threads and in there is a posting of many doctors that people on the forum have found to be of help.

 

All the best--hugs are sent your way.