Need to vent

[Robinhubb]

After doctors appts, phych, and counselors I thought i had found a great pandas doctor. However when i called they told me I had to get a referral from the main doctor. However when i contacted the main doctor he said no. He said her teiters were normal and basically she has a mental problem in which he prescribed prozac. He said mental disorders are common in young girls. Says it was just a coincidence that she has been sick the same times the thoughts come and that since she doesnt have strep anymore that the thoughts should be gone. True she doesnt have strep, but she still has a nasty cough. There are several things thst I know have screwed her up, she had a flu vaxx last year in october, and she always gets strep. 

Im wondering now, is she just mental??  He asked her and her phyciatrist asked if she was abused, i just lost it. My husband and i are strict but never abused. Im trying to trust God in all of this but how does a young kid just become mental. Im so tired and scared. Sadly sometimes I hate hearing her thoughts and push her away. She has become very moody as well. I dont know what to do. I refuse to put her on prozac. 

Currently we are trying milk thistle, cbd oil, oregano oil, motrin and probiotics. What am o doing wrong? 

Advice needed!!

[kakrpa]

I'm so sorry to hear of what your daughter and you all are going through - it sounds tough and incredibly frustrating. I won't say you're doing anything wrong as I think we are all doing the best we can given the circumstances.

I truly feel for your daughter as I have dealt with those horrible OCD thoughts myself - I was dx PANS almost 5 yrs ago (young adult onset w severe anxiety that immediately took hold as the pureOCD subtype). It wasn't strep that triggered it for me either (my guess is it was brought on by the pneumonia I battled immediately before this illness).

While I would typically second anyone refusing psych medications, I will tell you that I would not have made it to today without their help along w the help of a great psychiatrist. I guess I'm saying please don't shut the door on the potential for her to find some relief in even just one medicine, if it gets to that point. I know there are potential risks and benefits to each approach, just please keep an open mind.

Have you heard of TRS by Coseva, before? I just placed an order this morning and would like hear from anyone who has tried this. If you haven't heard of it nor tried it give it a search. It's premise is interesting and I'm curious to see if it will help me. Btw, I am in no way advocating nor endorsing.

Wishing you and your daughter the best. Please give her extra hugs as what she needs most right now is love and acceptance, and to know those thoughts are not HER THOUGHTS, but rather manifestations of the illness itself. They do not define her. She's likely very scared inside - it's hard to understand what's going on (even for an adult, let alone a child).

(((Hugs)))

[MaryAngela]

My heart breaks for you and your family.  Since your DD’s onset is recent, there should be so much hope...if only the doctor’s weren’t working against you.  

What bloodwork did they run?  Did they check for Mycoplasma Pneumonia?  

We spent years trying to find someone to evaluate our DS for PANDAS/PANS.  Ultimately we used doctors that don’t accept our coverage or any coverage.  

[Robinhubb]

Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left.

Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! 

Ty so much. I know we will get thru but being in the storm is always rough

[Cmac]

My son had strep and myco P. Try testing for myco P.  I had never heard of it before they tested for it (I had never heard of PANDAS until pediatrician told me). The first dr we saw after pediatrician was an infectious disease specialist—he tried a whirlwind of antibiotics over a course of two or three weeks and nothing really helped. It was only after 6 weeks of Biaxcin plus 2 weeks of Augmentin on top of that that we saw a difference (that was with Dr T—specialist in NJ). My point is that you aren’t doing anything wrong —just that most times this is a long haul. I think there are a few kids who recover quickly with one two week course of antibiotics, but I think they’re the exception not the norm. From what I’ve gathered it can take 4-6 months (in our case it was 6-7 months) to return to baseline after the initial exacerbation and the exacerbation can last for weeks, too. I think time is a big part of the healing process. The inflammation needs to come down and even if there are no strep titers, there could be ones from myco p. Have you also checked for Lyme?

Oh, and even with a solid PANS diagnosis from multiple drs, I did also wonder if my son was mentally ill and that I was deluding myself. So, I know how you feel. And we were offered psychiatric drugs almost immediately as well (from the infectious disease dr).

[MaryAngela]

I know that “inexpensive” supplements can add up, but we also used 5-HTP for our DS.  It was recommended by an otherwise unhelpful psychiatrist.  This was when DS was at crisis level.  Need to use on empty stomach.  I was able to get DS to and from bloodwork appointment on public transportation because of the 5-HTP.  I don’t recall why we stopped using it.  This was in 2016.  I believed we stopped a couple months later when we finally found a doctor to prescribe high dose of Augmentin.  

What form is your Oil of Oregano?  Again, we saw improvement, but used a high dose.  15 drops of undiluted 5x a day (mixed with orange juice). 

Something else we use as antibacterial and anti inflammatory is tea made from ginger root.  I grate a hunk of ginger root and steep it in boiling water, then strain.  It’s pretty spicy, but we like it.  We’ve been chilling it and using as an alternative to unsweetened iced tea. 

At the risk of bombarding you with information, those were a few things I thought of.  

[Robinhubb]

Not bombarded here just can use anything i can. Please any info is good info at this time. Dont know what doctor to go to next.

[kakrpa]

Highly recommend scheduling a visit with Dr. Trifelleti (or another Dr ppl may recommend on here). He's the one who ordered all of the tests, even genetic ones, and eventually figured out what was going on with me when nearly every other Dr told me to get CBTherapy. Gee, thanks. Btw, I had been doing CBT and it was not helping. Also, when I indicate pneumonia was likely my trigger, that's also known as myco p (mycoplasma pneumoniae).

Edited July 9, 2019 by kakrpa

[Robinhubb]

I wish i could trevel to see that dr. We are in texas. Paying 6000 in braces tomorrow for her. 

[kakrpa]

Completely understand - have you asked around here for any PANS/PANDAS Dr's in TX??

[Robinhubb]

I have looked online and looked through the posts but dont see many. The one near me makes you write a letter then based on thst he decides if you are a good candidate.  First appt 1200+... im trying to find an integrated dr..i found neurologist but he wants a referral but how do you get a referral if no doctor believes you. Im in tears everyday.  This is rough. I have a ppo why would he need a referral?

[Cmac]

Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned. 

 

[tj21]

In the thread @cmac posted is this link, though maybe you already checked it? It's how we found our practitioner. Agree w/others, if you can't find someone in TX, try to get a phone consult out-of-state to start with and get more blood work.

http://pandasnetwork.org/us-providers/