In crisis -- so afraid of hospitalizaton

[moosiebell]

My 17 yo ds has had pandas for over 5 bloody long years, complete with diagnoses of Lyme, bartonella and an inflammatory condition secondary to mold. He sometimes does well, other times limps along, but over the past couple months he has slowly gotten worse again. When we were in a house with mold (moved 3 months ago) his anxiety was more generalized with a moderate degree of OCD-- reassurance seeking, feeling he was responsible and guilt-- but with the help of a 504 plan and Dr. M in CT, we have managed where wasn't great, but we had good and bad days.

 

Over the past week, his symptoms took a nose dive. One worry is literally cascading onto the next, and his brain is literally torturing him. I don't know if there is an accompanying virus or if what, but he also vomits after he tries to eat anything, and thus didn't eat at all yesterday. I took him to the urgent care on Monday, where his psychiatrist (who has only seen him once-- my fault... I have been so afraid of psych meds-- called in klonopin 1-2 mg every 6 hours prn with an appt on Thursday. The klonopin takes the edge off, but he still cannot escape his thoughts. He has been off antibiotics since February until Dr. M called in minocycline about a week ago.

 

I thought his symptoms 5 years ago was our bottom but it is even worse now. I am so scared he will need to be hospitalized. I am so scared they won't understand PANDAS. I don't know what to do. We are in southern Maine. I will call Dr. M again this morning, but at this point there is no way I can get him in a car to travel 4 hours.

 

Thank you.

[mama2alex]

If I'm reading this correctly, he started on minocycline about a week ago and his symptoms started getting much worse about a week ago. So could it be a bad herx or he just isn't tolerating the mino?

[LNN]

Totally hear you - have been in your Pans/Lyme/mold shoes with two kids. And we're just coming out of close call with hospitalization for anorexia. Like you, I resisted psych meds. We also see Dr M.

 

I agree with momma2alex - could be the mino. Maybe stop it for a few days, add charcoal to absorb toxins, add magnesium or stool softener or senecot or aloe juice to encourage daily BMs. Motrin every 6 hrs.

 

When my DD fell off the cliff in Sept., Dr M prescribed a month-long steroid taper (see https://www.pandasppn.org/ppn-steroid-therapy-use/)

and it was a game changer, even tho chronic infection and possibly lyme are in the picture. The inflammation had gotten so out of control that we needed to use high dose steroids to bring things under control. The not eating was by far more dangerous than anything else (she would also gag and run to the sink whenever food hit her mouth). Within 36 hours, she started to turn around. The OCD that was keeping her from eating got weak enough that she could start taking in some calories again, and that saved us from the hospital.

 

If you do end up in crisis/ER, just stay focused on the eating and the OCD. I was amazed at how much medical support we got from the pedi, the school, the therapist - even tho none understood Pandas. Because they all understood anorexia and the urgency. 2 days after we started the steroids, we saw the pedi and she was amazed at the turn around. While she was tolerant of the Pandas diagnosis before, the changes she's seen in DD over the past 2 months has made her more of a believer. Same with the therapist. Its one of those things that has to be seen to be believed.

 

PM me if you need anything. I've been in your shoes - still am to some extent, just not in crisis anymore. It's hard to hold it together when no one else you're dealing with understands and the whole thing rests on your shoulders.

[Eliself]

Nothing to say, but so sorry you're going through this.

[Sirena]

I agree about the ibuprophen. Perhaps if u do end up going, request an inflamatory marker panel (including C reactive ptein and sed rate, etal). If these come back elevated it helps docs "see" that the problem is due to the infection/inflammation...

[moosiebell]

Update: so very thankful for you suggestions and support. This week we have gone to my son's doctor locally, a psychiatrist, called Dr. M and things are still extremely bad. My son says he is physically feeling better since moving from our moldy environment 3 months ago. The first month after the move (August) was pretty good and he reported feeling better and better. He was tested postitive for MARCONS (no fungal infection) and prescribed BEGI spray by Dr. M. He started about 1 week after school began in September. He had already had one course of BEGi in May. He became very stuffy and we started noticing a slow but steady increase in symptoms. We backed off to one dose a day with little improvement. We then saw a Shoemaker doc at the end of September. She suggested stopping the BEG spray and initiating Xlear spray with a few drops of Coptis herb, worried that he would develop antibiotic resistance and that the Beg was too much for him.

 

In October we continued a very slow and steady decline. We attributed it to the stress of Senior year. He was on a part-time schedule. There were stressors-- he tried driver's ed but the 3 hour classes at night were way too much and thus quit-- and there is a virtual high school class that seems to affect that limbic part of his brain and he kept falling further and further behind.

 

My dates were a little off in my last post. Dr. M prescribed the minocycline 10/24-- it didn't seem to alter the slow downward spiral in any way. I spoke with his mold doctor Fri Nov 4. She felt he may be in a long slow herx due to the xlear spray and said to hold it for now. Things got worse over the weekend, which brings us to this week.

 

My DS became extremely ill as noted in the initial post. In hindsight, we realized he had a stomach bug (was unable to keep anything down for 2 1/2 days -from Mon to Wed- that we contributed to anxiety initially). We have been very close to hospitalization as he is in such despair. We saw the psychiatrist on Wednesday afternoon and he prescribed low dose zoloft (12.5 mg to start), klonopin as needed, and gabapentin to slowly titrate up (100 mg at a time).

 

The klonopin is a dual edged sword. It seems to calm his agitated state, but does nothing to the profound obsessions around fear, catastrophe and guilt. Such tremendous guilt if he doesn't seek reassurance (about nearly anything-- a stick on the ground representing possible danger, etc) literally well over 100 times. He may 'get over it' and an hour later an unexpected sound brings it all up again and we are back to square one. The klonopin may disinhibit this process further. It is hard to tell.

 

I was disappointed with Dr. M. Overall he has been somewhat helpful when things are going okay. When I called in crisis Wed early am, and again at noon, I didn't get a call back until 5 pm (left voice mail as we were with psychiatrist) suggesting that DS may have gotten something from the school (probably true) and suggested amantadine to shorten the duration of the illness but NOTHING to help with the urgent crisis situation we were in. It was like suggesting aspirin when your leg is broken.

 

So I don't know what to do. And I'm sorry for this long post. Many of you have been there before. My doctor feels that his immune system is getting more robust now that he is getting out of the mold, but that he is fighting some underlying ailment (such as Bartonella--for which he has been treated for years, or Epstein Barr virus which is possible too I guess).

 

I don't remember how to live a normal life anymore.

 

Thank you all.

[LNN]

Is your son taking cholestyramine? That could help. Also, sounds like the Marcons could still be an issue (BEG didn't help us either). Are you doing any anti-inflammatories?

 

Lysine helped my DD beat EBV. There are a few Pubmed studies showing it can be helpful.

[moosiebell]

Thank you so much, LLM. He is on Welchol for the mold. He has been on multiple antiinflammatories and current on motrin prn, fish oil, and was on quercetin prior to this week. He had a better day yesterday -- no klonopin at all. Lots of OCD but never got to the point of desperate despair. We'll see what today brings...I will keep you posted. And LLM, are you in Maine as well? Thanks so much.

[LNN]

Not in Maine - southern New England. Glad to hear he had a better day yesterday. Is he still on the minocycline?

 

FWIW, my DD started a new nasal spray on Friday for her Marcons - vancomycin + itraconozole + edta. Saw an increase in flu-like pain, muscle pain, stuffiness yesterday. Saw big increase in OCD and anxiety today. So back to motrin every 6 hrs, and re-scheduled our day to remove things that are stress triggers. That seemed to help. Pretty sure it's herxing related. It does muck things up for school, to be sure. Makes getting thru the day, doing well on exams, so much harder. But I know from seeing my Lyme son go thru this for 2+ yrs, it's like a hurricane. The sun comes out afterward, and after the damage is cleared, there's rebuilding and she'll hopefully be in a better place.

 

DS went from being a year behind academically to several years ahead. I went from having to help him thru every aspect of homework, had to read to him because he couldn't read and retain at the same time, had to heavily tutor and coach him for 5 yrs. Now, 3 years into recovery, all I have to do is nag him to get off the computer and do his homework. I have no involvement in the actual academics whatsoever and he's an honors student (9th grade). But to get to this point took enormous work and many set backs. So don't lose hope. They can get better.

 

Do keep me posted. I can totally relate to the insanity you're living and the stress and pain you're feeling. You're not alone.