momslove

Please quickly disregard my thought here it I sound way off, but I'm thinking outside the box. Would it help to think about his recent severe symptoms as allergic response rather than infection response? Rather than going from infection to antibodies and inflammation, is he going from trigger to inflammation? I would never suggest that you don't look for or treat infection, but maybe inflammation...?

Have you had vitamin levels tested? If so, were you able to do this through your regular lab with blood work or did you go through a special lab you found online? Did your insurance cover the cost or at least part of it? Our PANDAS doc ordered some vitamin level testing, but when I took it to our local clinic, the tech said he didn't think it was a list for tesitng, but was instead a list of vitamins to take... So that made me think the tests are not mainstream...

When you decide to give/take vitamins, minerals, or other supplements, when is the brand really important? Is there a reason not to use the brands that are most easily obtained from big chain stores?

What were the symptoms, if you don't mind sharing? I have looked at milk thistle for DD, but have hesitated because of her allergy to ragweed and a relationship between milk thistle and ragweed. I don't remember reading anything about it causing increase in symptoms caused by lyme which DD has also had...

Thinking of you. Any updates?

Having been on both sides of this--a school staff member requesting medical information and a parent providing medical information, there should be specific questions the school is asking or specific information they want. They should specify the information needed and why. As a parent, I have collected medical records and reports. I have reviewed them and decided if there was anything that would help the school help my child. The name of the form doesn't really matter in my experience. Don't be pushed to provide consent unless you are comfortable with exactly what information will be exchanged and why. More recently as a school staff member, I ask parents to collect any medical information or outside evaluation results and read through it themselves so they know what they are giving to the school if they choose to do so--to address specific questions.

Yesterday I took an order for blood work to the lab we have been using--part of our local clinic, small town. Often the labs are not their usual and they need time to "build them in to the system" before we can actually schedule the draw. The order is from our PANDAS/PANS doc, not a part of this clinic. I received a call today. They have some "new guidelines" so orders from outside providers are reviewed by a pathologist in the main clinic. The decision was made that they "will not honor the order from this provider". I asked for clarification/explanation and basically got a repeat of the statement already made. I asked if there was something I could do, some steps I could take. Was told the decision was made. I asked if there was someone else who could tell me specifically what the problem was. She gave me a number, but seemed to say that I would just get the same non-explanation. This made me feel worried. Are they second-guessing the need for the labs? Are they concerned about my provider? Then I thought of a more reasonable answer--that they need to manage their time and demands and costs so they will not do labs ordered by outside providers if the time required to "build it into the system" is too great. What do you think? Have you had any similar experiences? Should I just approach another lab (not that there are many choices in our area) and not worry about it?

t_anna Can you tell us more about what led to suspecting the pituitary? We just saw endocrinologist this morning. He said he couldn't explain why DD has had some unusual labs (originally ordered by Dr. T), some having returned to normal limits. He said he saw no reason to continue to monitor them. We will continue with levothyroxine for "chronic lymphocytic thyroiditis".

DD has not attended school or done much except sleep and watch TV all week. OCD is increasing and frightening us all. (Plugs ears with certain TV shows because she has to stop listening when the last word is not a bad word according to OCD. Asking for reassurance that there would not be any beer on the remote control because DH had a beer tonight...) Tonight I allowed her to go out with friends a short time if she got herself showered and dressed. On the way she and I talked briefly about getting back to school and she made comments about how school was the problem, that she didn't need a high school diploma, that she would be just fine... I want to holler at her! I want to engage her in an argument right now! I want to put facts on the table about rent, utilities, food, clothes--not to mention the costs of a phone, internet, and netflix...!!! I want to ask her how she plans to get to a minimum wage job when she can't get up to go to driver ed classes. Oh and then there is the cost of a vehicle, gas, and insurance... I want her to say she didn't mean it...

Our DD (now 16) has experienced significant fatigue. It has increased and decreased over time. We have described it to doctors as a symptom of concern and also considered the possibility of avoidance by sleeping (but still a symptom). This past week has been very difficult again and today she didn't get out of bed until 2:00. She was in bed by 10 pm last night. I don't know how much she slept, but do know that she did nothing except sleep or rest in bed because she won't sleep alone... For our DD, it is definitely a part of the package! Earlier in this journey, when I was more stunned by it all, I would watch her sleep and knew that she was totally zonked out for hours beyond what would be "normal". The fatigue did improve when she improved overall, but she has relapsed some. We did some thyroid testing because, in part, of the fatigue. She is now on levothyroxine, but a small dose. Not sure it has much impact in terms of symptoms.

So DH said and I agreed that we should probably re-try the recommendations of the mental health provider because we have to change something. Provider said increase the Luvox and add Buspar. We had increased the Luvox and saw changes we didn't like so decreased it again. DD said things about not being able to find her words and being confused and not knowing what was going on... Could be that the changes were not from the Luvox... We never tried the Buspar. I started re-reading information and remembered why I didn't want to do it (Buspar). Reading about possible permanent "side-effects" such as tardive dyskinesia... Also reading not indicated for OCD and major interaction with Luvox... Reading trial did not support augmentation of Luvox with Buspar... I get the risk-benefit consideration, but... Any POSITIVE experience with combined use of Luvox and Buspar?

Yes, I value my right to be a decision-maker along with DH. Sickening to think of the parents who lost those rights as they made their own difficult decisions regarding their child's health care... I wouldn't want it any other way...except that I didn't want to have to be making these kinds of decisions... You all are a wonderful support to me and each other. Thank you.

Sorry I don't remember if I've read previous posts about your schooling. I'm guessing you homeschool. Just a thought...some places are opening doors between homeschool and public school. There may be options for some homebound instruction that would then give you access to materials that could be tried at home. ???

I really appreciate your support! I love my daughter. Tonight she came out of her room after not getting to school again today. She spoke very calmly to tell me that things are getting worse. She said she feels like she's relapsing. I told her how good and important it is for her to tell me these things so we can figure out what we can change. Then she said, "But what if something good is just about to happen?" I said, "Therein lies the dillema" (spelling?). We smiled at each other and she retreated back to her room. Tomorrow's a new day! Be strong. And thank you all for being here!

So I'm freaking out a bit today... We've been at this long enough... I know patience helps... but... We see 3 main providers for DD. We tell them what we know/see and hear their plans. We make decisions. Determining if our decisions are right or wrong is no simple task. It takes so long to see results of decisions with meds/supplements. Then there are always so many other possible factors over which we have no control. As DD get older, she gets more easily discouraged and less likely to comply with all ideas (especially dietary). Now we chose to try CBD which we must figure out on our own how to dose and how long to wait to see if it helps. She is far better than she was at times in the past, but far from ok. This is so important! WHO AM I TO BE MAKING THESE DECISIONS?!

Received CBD oil and started with 15 drops twice per day, today. DD has needed melatonin for sleep for a few years, but I can't find information about the interaction of the two. Found some information that CBD oil may help her sleep, but not sure if I can't also give melatonin. Won't give melatonin tonight. Hope she sleeps... Anyone know about this?

I understand what you are saying. The truth is medical conditions interfere, at times, with education in a variety of ways. Consider a child with a seizure disorder. They may do just fine for a period of time and then have a seizure that makes some educational accommodations/modifications necessary. It is not a "choice". Consider some cancer treatments where a child may attend school, but then need time off for treatment or because of the side-effects of treatment. It's not a "choice". Unfortunately, it seems to be the nature of PANS and recovery from PANS, that our kids suffer something like a relapse as they are exposed to infections, experience "herx" reactions, have adverse reactions to treatment attempts, and simply lose hope. It's not that our kids don't make choices--good and bad, but the evidence seems to suggest that your son was "doing school". Behavior exists for a reason. Why would he suddenly choose not to do what he's supposed to do? It's because he's suffering medically. Sorry. I'm preachin' to the choir here. I have a letter from our lyme practitioner written to address attendance concerns. If you would like to see that, let me know. It focuses only on lyme and co-infections even though my daughter has other infection issues, but maybe it would give your medical provider ideas of issues to address for the school.

ERRGGHH! I, perhaps, know so little, but I do know a little. I'm part of the special education staff at our small school district in Wisconsin. My DD has an IEP because she has an identified impairment--Other Health Impaired (OHI). I know that state laws differ and actual practice differs from school to school within a state. In our district we may request medical records to document a diagnosis, but we do not require the parent to provide them. We are a small district so this doesn't come up often. I did provide some records to our school that detail some history (including some I had to correct). The school won't be providing medical care so can't you just stick with PANDAS for their understanding and eligibility documentation? Once you get past eligibility, it is all about setting goals and describing appropriate accommodations and modifications. Are they failing to address eligibility or are they failing to provide appropriate services?

This is soooo hard, isn't it? Wondering, other than Bart, what infections have been targeted in his treatment of PANS?

Not sure what you are asking to see. Are you looking for a letter to a school to request evaluation/consideration for a 504 plan or IEP?

What has been your experience with anti-viral medications, particularly Valtrex?

So if I understand this... My DD takes Fluvoxamine which is also an inhibitor of the enzyme CYP3A4 and rifampin which is an inducer of CYP3A4. I can't predict how they will interact, but I know that they will, right? Do the inhibitors slow down metabolism of the meds so they may possibly build up in her system to undesirable or toxic levels? Do inducers speed up metabolism of meds so more could be needed for therapeutic levels? I did not find the information about the enzymes for CBD. I'm using the information from momofadult, above. Momofadult, did you try it?

Just to clarify in case I was misunderstood, I totally support steps to health. I didn't mean to suggest that I see CBD as an illicit drug, but I know my daughter would be aware of the connection and SHE would have a problem and this could become an OCD obstacle. Some others have a problem with it too. DH asked our mental health provider about it. She scoffed that they treat people for addiction, they don't prescribe it...

To any of you who have used this--Did you tell your child? Our DD has complied with medications over the years, but I think she would "freak out" if she knew we were giving her this "drug". (Haven't yet, but thinking ahead.) Any other input on type or brand or impact for your child?

Our mental health practitioner replied to my question about checking DD's CYP450. Said it was not established or something like that for children/adolescents and that there was limited evidence for the clinical usefulness of this information for adults. She did not say no, but initial written reply was not supportive. Have not been able to connect yet with our lyme or PANS practitioners. Any of you who have checked this, have you done it as a separate test with a provider or have you done it through something like 23 and Me?