Jump to content
ACN Latitudes Forums

Recommended Posts

I don't post very often anymore, but my thoughts and prayers are with all of you. We have been down that long road of recovery with our son, and we know what you are going through. God has graciously given us our son back.

 

My son is a lyme patient of Dr. H and he will be weaned off antibiotics starting next month. He is doing very, very well--living a normal life, working, going to college.

 

As part of his treatment, Dr. H has my son on anafranil. It has been very helpful because my son was sick for so long that much of his OCD is ingrained. My son says the anafranil does nothing to take away the OCD, but it does help him calm down which makes him able to stop his OCD before doing compulsions. And less compulsions has led to less and less OCD. Basically his OCD is not noticeable except by family members.

 

The plan is to wean my son off antibiotics slowly over several months, while keeping him on the anafranil. Once he has remained stable for a year, the plan is to wean him off the anafranil, very, very slowly.

 

Anyway, at my last visit with Dr. H, I was told that he will no longer prescribe any psychotropic drugs and that I will have to find a psychiatrist to prescribe the anafranil.

 

I have some questions for anyone who is using a psychiatrist.

 

First, it is very important that my son stay on anafrail and not be switched to another drug because he has done very poorly on every other psychotrophic drug he has tried. I am afraid the doctor may not want to keep my son on anafranil because it is considered a "dirty drug." Experimenting with another drug could (and probably will) be a big set back for him.

 

Second, I was curious it someone could tell me the cost and could tell me how often my son should expect to make appointments in order for the psychiatrist to refill the anafranil.

 

Third, will I have problems getting the doctor to see the lyme connection to my son's OCD? What can I expect with that? I have only been to one psychiatrist throughout my son's illess--a reputable doctor at a big-name hospital, I found that person to be unsympathetic to the infection element of my son's illness and frankly very intrusive into his personal life. Though he is much better and older now than then, the experience was traumatic for him. The personal questions were endless. He left feeling very much like a child with a permanent mental illness instead of a child recovering from infection.

 

I would appreciate anyone's advice. Thank you!

 

 

Link to post
Share on other sites

Hi Christianmom, glad to hear ur son is doing well. I suffer from OCD too (I'm 36 and this began age 22-23) and have a great psychiatrist. He treats me like I'm someone whose brain isn't working right, just like someone who's diabetic has a metabolic issue. Anyways, in my experience, if you've found through trial and error particular rx's that work and /or don't work, the right psychiatrist won't want to switch that up (esp if the current regime is working). If possible, I'd have all his med hx re the dx and the tried rx's sent to the psychiatrist u go to, prior to initial visit. Also, does Dr H, or anyone in Lyme groups, know of a psych to recommend in ur area? Referrals usually are the best place to start.

 

If u meet with a psych and know theyre not the right fit, or they're wanting to force u down a rx path u know isn't right for ur son, then move on. Quickly. :) HTH!

Link to post
Share on other sites

Funny, I just posted on another thread, including how Anafranil has really helped ds15. We have been able to have our dev. ped. prescribe and our pediatrician prescribe in consult w/the dev. ped. She (pediatrician) also will prescribe in consult w/our psychiatrist (when I can't get a hold of him, long story).

I think you said your son is college-aged though, so not sure if his regular MD would be willing to prescribe in consult w/Dr. H, rather than a psychiatrist, for the time-being? Eg., someone needs to provide bridge-coverage if Dr. H isn't willing to help w/that transition, I'd hope.

~TJ

Anyway, at my last visit with Dr. H, I was told that he will no longer prescribe any psychotropic drugs and that I will have to find a psychiatrist to prescribe the anafranil.

 

I have some questions for anyone who is using a psychiatrist.

 

Link to post
Share on other sites

I agree with kakrpa that any psych worth his/her salt, if given information that the anafranil is effective and supportive, will not look to make any rx changes immediately, if at all. Particularly if/when you have a record of the drug's use and effectiveness in your DS's treatment regimen. That being said, I would hope that the psych would also have something that they might add to the conversation . . . insights or suggestions that you could take into consideration as your DS continues to grow, mature and wean off abx, etc. Ours, for instance, will discuss recently published studies or experiences of other patients with us and say, "You might want to consider XYZ." And then we'll leave the appointment and read the studies she referenced or talk among the three of us (mom, dad and son) and make the call as to whether we want to alter anything, or if we feel good about how everything is as-is, and want to keep the status quo. There's no pushing or insisting or denying -- just listening and sharing and adult conversation. IMHO, that's what you want in any care provider.

 

Our psych is PANDAS/PANs-savvy to a degree and thus accepting of the role infection/auto-immune can have in DS's picture at any given time. That being said, even she has only a moderate amount of experience actually dealing with PANDAS/PANS, so she looks to us for experiences and information as to how DS is responding, what he needs, etc. Again, I don't think we could ask for much more along those lines.

 

She does not take insurance directly, so we pay out of pocket and then I can submit for 80%/20% reimbursement under our medical insurance coverage directly. She's $195/hour, and a typical medication-management type appointment will typically run between 30 and 45 minutes. If we haven't seen her in a while and/or there's some new development or DS is particularly chatty, it can go longer and yes, there's some sticker shock when that happens. But it doesn't happen that frequently and now we're all mindful of the clock. Plus, unless we're making a new change or something, we only see her every 4 months or so, so that one hour goes a pretty long way, all things considered.

 

As for necessarily finding a psych who will "see the Lyme's connection to his OCD," I realize some will disagree with me on this, but I'm not certain that this is absolutely essential. While I think most psych's these days who keep up with current research will acknowledge that immune response can both trigger and/or exacerbate various anxiety conditions, I'm sure the number of them who actually "embrace" PANDAS/PANs, Lyme or any other infectious cause of long-term OCD as valid is quite small. Even many PANDAS/PANS docs would have us believe that infection-triggered OCD should be short-lived, and anything that extends past a point is "regular OCD," will little or no relation to infection. But, in the end, you have a medical doctor who's treating his Lyme, and you're looking for a psych to help with medication management for the OCD. If your DS is doing well along about the time you/DS want to titer down off the Anafranil, a good psych will join you on that journey. The psych may not believe or agree that DS is ready to titer down because you've finally irradicated the infection, but why should that matter, so long as he'll help you manage the downshift? So long as DS is responding well and maintaining health even as the weaning continues, you should get nothing but support from the psych in that process.

 

All the best to you!

Link to post
Share on other sites

Anafranil is also helpful to my daughter and another daughter (also PANDAS) used it during her illness. I think the chance of a psychiatrist wanting to change medication when your son is doing well is very small. If they want to tinker, move on.

We pay our insurance co-payment for medication check-ups- so I cannot answer the payment question. Does he have health insurance?

Also, though a psychiatrist who understands the illness causing the OCD would be awesome, you really need a doctor to keep prescribing his medication, that is all. Momwith OCDson is right on that (her last paragraph, previous post)--- she is right about most things, I have noticed over the years ;)

 

I would find one, recommended by a friend or simply one that takes your insurance & make an appointment . We found the current psychiatrist (hopefully the last one!) by just picking one based on insurance and distance. She has been a gem.

Best wishes and so glad to read the positive post!

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...