momslove

M-hm. We were told some years ago, that sometimes the meds just stop working so we changed SSRI. Didn't really make sense to me then and still doesn't. Why would they stop working, if they were "working" to begin with? DD is a young adult and weight hasn't changed significantly for a few years so hard to understand a need to increase dose. Just trying to understand what might really be happening. As far as additional stressors--none that I can identify other than those created by OCD...

I haven't been on here in a long time... Life for DD has rapidly become much more difficult and her providers have moved... As I think about our options, I'm wondering what the traditional mental health doctor, one who doesn't recognize PANDAS/PANS, would say regarding severe increase in OCD after having been stable or improving for over a year--taking an SSRI and no change in the meds. What has been your experience?

Appointment was today. Doctor letter before appointment said "non-REM narcolepsy". Specialist at appointment said that was the old name and with the current naming criteria it is really "ideopathic hypersomnia". She talked about medications like ritalin and the side effects. DD does not want to do any of those meds and DH and I are supportive of her decision. Specialist talked about the autoimmune connection to narcolepsy, but said she doesn't have that. I pointed out her autoimmune history with PANDAS/PANS, Hashimoto, and some diabetes-related thing. She said her current meds which include Luvox are known to suppress REM sleep and could be masking actual narcolepsy, but it would not be advised to go off the meds at this time, just to test. So we have a little more information and some suggestions about improving quality of sleep. We press on.

We recently completed sleep studies (overnight and napping) for DD and have the appointment this week to review results and discuss treatment plan. I'm finding information about narcolepsy as autoimmune--imagine that! Some information links to strep--imagine that! Wondering what research or similar information any of you might provide--information about narcolepsy and PANS--information of treatment of narcolepsy in a person with PANS. Wondering what experience any of you might share in regards to treating narcolepsy in a person with PANS. Thanks.

Could yeast be an issue for her even though she's been taking probiotics?

Michel12-- Thanks so much for letting us hear from you! I'm glad that you continue to receive treatment and to consider carefully your ongoing options for treatment. Please try to focus on the fact that you do have ongoing options for treatment and healing/recovery. Yours is not an easy path at this time, but continue to seek help and surround yourself with hope.

My dad asked for me to help him research diuretics since he has difficulty with sulfa-drugs. Came across spironolactone and remembered reading about that here. Searched the forum and saw the last several posts mentioning this were from Stephanie2 (?) as she shared success with OTHER approaches--mentioning spironolactone as one of the treatments tried without benefit. Is anyone currently or previously using spironolactone with success for PANS?

Thanks. Tonight is better. DH and I are talking about other important matters that we agree about tonight. DD16 slept until about 4:30 pm today... She got up and put on some clean clothes and pulled her hair up because I told her that a friend of hers had told me today at school (where I work) that she might stop over tonight. Then she sat down and did some online biology. DH told her he was glad she did 30 minutes of biology today. He told us both he expects her to do more tomorrow and I don't disagree. Most of the time DH and I agree or accept our differences. The times when we don't are hard. Most of the time we do ok with DD and PANS/OCD issues, but when one of us "breaks" for a bit, we need a whole new set of skills for patience and communication. Thanks for being a safe place for me to share and receive support.

DD is not at all near the worst she has been in this horrific illness, but DH is having a time of frustration and end-of-his-rope feeling. I want to listen with empathy to him, but when he gets going with saying things like nothing has worked, we all get infections, no reason she can't get her a** to school like everybody else, put her in front of a truancy judge and let her get those consequences... I have to say she has improved, we have empirical evidence of infections and autoimmune problems, and I am not at all on the same punishment page as he is tonight... I did support him taking her off screen time until she does some academic school work, but I can't go where he is going in his thinking tonight. This is so hard... Do any of you find yourself somewhat frozen by stress? Having difficulty doing much but stew, you post something and then continually check in to see if anyone posted a reply that might help? (and almost ashamed to admit it)

Ugh... Our DD went through a time when I could not touch her AND she needed me with her much of the time. It was so difficult for both of us. We are a hugging family. If I even accidentally touched her, she would freak out and go into various rituals to make it not "bad". I slept on the floor in her room many nights because she couldn't be alone, had to be in her bed, and couldn't let me sleep with her in her double bed. For DD, it was often about "chemicals" and not germs. Her OCD considered many soaps, perfumes, lotions, and cleaning supplies dangerous chemicals--partly because they simply could be if you accidentally got them in your eyes or mouth, but also because the OCD irrationality argued horrible circular "What if...and then this..." scenarios. If we tried to tell her something was not dangerous, she would want to know if I would be worried if she ate it or drank it... Then we were in a similar situation to yours--it's safe, but not. Since then DD and DH and I have learned a lot about OCD, CBT/ERP, and patience. If or when DD gets in to that kind of thinking again, we can more easily identify it out loud as OCD thinking. We can talk about it and not become too engaged in arguing with the OCD--for the most part. I pray this passes quickly for you both.

My thoughts are with you. We've been there. We had one day in particular when we were in CRISIS, made appointment with family doctor to squeeze us in, and were not able to go. Called and spoke with doc--described what was happening as we spoke. Told him the only way we would be able to get her in would be by ambulance. Our doc called the mental health department and advocated/demanded an appointment with someone ASAP. He called back with prescriptions for very low dose SSRI and fast-acting anxiety meds, neither of which seemed to have any effect. Long story short--we got her to that next appointment with the mental health practitioner who asked if DD had had strep and asked to test her for it! Our DD has benefited from using an SSRI as we treat PANS. I know this is not the case for everyone. We did not want to go down this path, but we will do anything to reduce her suffering and help her to recover. Our experience has been that during those worst times, we need to breathe deep and hold on to each other. Those worst times will pass and/or we will find ways to deal with them over time. Hold on and look for a better day tomorrow.

4nikki, you may be right. I've been reading more about this as it's written about asthma and COPD and see that steroids are sometimes tapered even when only used for 5 days. I guess my question might really be, could a response to a steroid treatment be different/better if the steroid is used for a longer time than 5 days?

Over the years we have treated DD with long-term antibiotics, probiotics, SSRI, levothyroxine, anti-fungal meds, and periodic anti-viral med. Also have done CBT/ERP. Her disabling symptoms are anxiety and beastly OCD. Fatigue is also a factor, but it doesn't get in her way in the same way the OCD does. Thinking we need to reduce inflammation...??? DD16 has shown no noticeable benefit from use of ibuprofen. She showed no noticeable benefit from a trial of CBD oil twice daily for about 5 weeks. She also showed no change during 2 steroid bursts (5 days). Is there any reason to believe that use of steroids over a longer period of time and tapering could benefit her? Are there any clinical or lab indicators that would point us in any direction to reduce inflammation? I read a number of old posts about steroids, but it seems there hasn't always been a distinction between the burst and the taper.

DD16 used CBD oil from Bluebird Botanicals--15 to 20 drops in a capsule, twice daily, for about 5 weeks. Saw no change. Then after we stopped for about a week, she complained of increased anxiety, but there are always so many other factors--exposure to illnesses, usually. Started back again for about a week with no change.

Oh, I can so relate! Tonight I am crabby mom again. DD16 didn't make it to school again today. She doesn't like to explain details to me about what is going on with her anxiety, OCD, and how she feels in general. So she's in bed most of the day. I get home from work and start working at home. She calls me. I ignore her for a bit. Eventually I wander up. She wants me to re-heat her rice bag. I tell her no. I feel a little guilty and I show her some crabby. She's not happy and neither am I. My "no" to her is really what I need to say more. It is okay. What I need to stop doing is the mumbling I do (kind of hoping she might hear and change, seriously???) as I walk away from her saying things like, "Let me get right on that" and then making a sound like a cracking whip. I remind myself that she is doing better. There were times when a "no" would have made everything escalate. I remind myself that she is still sick. It is OCD that is cracking the whip on me and I can say "no" to OCD. If it's not OCD and is actually DD, I can say "no" to her too.

As I understand it, IgM goes up in response to a recent or current exposure or infection from mycoplasma pneumonia. The IgG goes up later, as more of an effort to provide future protection from the bacteria. At least that's the way it's supposed to work, I think.

My experience/perspective--for what it's worth... My DD has OCD secondary to PANS. We need doctors and therapists. We are working with doctors who seem to know what they are doing. We have had difficulty finding therapists who are knowledgable and skilled with cognitive behavior therapy, particularly ERP, which is the research or evidence based approach to dealing with OCD. We ended up going to the Mayo Clinic in Rochester, MN for an intensive week of CBT/ERP. They were kind, compassionate, and highly skilled at this. When I inquired about the therapy, I was very clear about DD's medical diagnosis AND about our reasons for seeking their services--for the therapy, not medical advise. We had to go first for a psych eval and of course, there was some discussion, but we moved on. Mayo does not "support a diagnosis of PANDAS, but will treat the symptoms" according to staff in the neurology department, BUT they are awesome in providing treatment for OCD in another department. Be clear about what you want from a therapist and ask for that. In our case, we wanted CBT/ERP. It did not matter what they thought about PANDAS/PANS or any other possible cause of the OCD. If you want something else, that's ok, just be clear about it. My weakly formed analogy is a sports analogy. The opponents include strep, myco. pneum., coxsackie, OCD, lyme, bartonella, inflammation, etc. My DD's team includes herself, myself, and DH. I also serve as general manager, selecting coaches for offense, defense, and special teams. Each coach needs to do his/her job and not worry much about what the other coaches are doing.

We've been at this for 7 years now--5 since diagnosis of PANDAS and 4? since finding an expert. Along the way I have learned some lessons and yet I'm still disappointed in myself when I'm stumped as new situations present with providers... I have learned to be assertive with providers to tell them when I need some time with them without DD present. At first, I followed their lead and thought I needed to see how things went (e.g., with mental health care providers). My DD did not need to hear me describe all that was happening and speaking in code or hinting was not effective. I simply said I needed some of the time without DD. She REALLY appreciated it and it saved time overall. I have learned that if a provider does not "see" DD, it may cause problems with insurance coverage. Had an appointment for DD early on with a general practitioner and we couldn't get her out of the house. My DH and I went and had a good consultation, but insurance denied coverage. (Not my biggest battle, but lesson learned.) I have learned to keep calling when something is taking too long--lab orders, lab results, doctor response to questions. I'm not sure though if my calls made anything happen or just kept me busy... I have learned to follow my gut--based upon my observations and readings. We have found things that were not "right" because of this. I have learned that appealing insurance decisions can pay, literally. It is a lot of work though... I still have to learn how to make things happen... DD can be a "hard draw" when it comes to blood work. I'm trying to help her learn to assert herself. She now will tell them that she often needs a warm pack before a poke, but for some reason, they seem to want to try it first... The labs DD needs are often not standard so I bring in the order a day or more before the appointment for preparation. Still this last time, we waited for over an hour as they looked up or coded or whatever they have to do before drawing blood. When DD last had a blood draw, the woman wore no gloves. I stood there and watched and said nothing. This one still angers me (at myself) that I said nothing. Still need to figure out what I will say if it happens again... But we have already had one lab tell us they will no longer honor the lab orders from our PANDAS/PANS doc, so I don't want to burn this bridge... I also need to learn how to better coordinate the care from multiple providers... What lessons have you learned along the way? What are you still trying to figure out about seeking and sorting through the care for your child? Just wondering...

Last night, one of the times DD woke me to go to the bathroom with her..., she told me she was feeling like she wasn't getting enough air even though all she had done was walk to the bathroom and back to bed. She said it had been happening lately. (She also has complained recently about how often she has to go to the bathroom--like she drinks and it goes right through her. I agree that 2 or 3 times a night is a pain.) Her other comment last night was that she felt like she had something in her throat right about where the notch is to her chest. I can relate to the air feeling. I experienced that when my thyroid went crazy and I had Graves disease, now in remission. DD has tested recently again for thyroid levels which were fine. She takes levothyroxine and has had elevated thyroid auto-antibodies. But her feeling of need for more air could be...what??? The feeling of something in her throat could be...also related to thyroid...or what??? The frequent urination could be...what??? She also has history of elevated auto-antibodies related to diabetes, has had mildly elevated glucose, done glucose monitoring, and recently tested glucose again with visit to endocrinologist. Had best glucose level so far in her testing--"normal" and doc not concerned. Any thoughts?

I'm looking at the results we have for DD from Courtagen. I don't understand exactly where to look, what column in the table or what heading in the paragraphs, to see if DD had same as you. Would like to understand this more... Where do you see this? I see ATP6 listed under Gene/Region in "Table 2: Sequence Variants that are NOT Part of the Patient's Mitochondrial Haplogroup: H". I don't see similar numbers in the table.

Wondering if anyone uses or can tell me if the JuicePlus products (orchard or garden capsules) might be useful and safe for our kids... Eating better would be nice, but until DD is willing/able...

Sublingual allergy drops are another option for treating allergies.

I think I've read Nordic Naturals is good for fish oil, right? I spent a lot of time reading about probiotics and purchased Ultra Jarro Dophilis. Also alternate that with a probiotic from GNC--one that doesn't have a "strep" ingredient. Any redirection on this? Lyme literate nurse practitioner recommended Researched Nutritionals Liposomal Glutathione (but DD won't try this). Using melatonin from Walmart... Got CBD from Bluebird Botanicals. So if testing or doc recommend other vitamin/mineral supplementation, is the general advice to avoid Walmart? What about GNC?

Mayzoo--you make me smile. Get some rest.

I have read a little about Spectracell and OAT tests online. We have had labs for vitamin D and iron--locally, or at least drawn locally. I guess I will contact the doctor and ask him how to proceed with the order he sent me. Information can't hurt, right? Feeling tired though, and not sure how much help the information will be for DD's treatment.