dcmom

Hi Linda- I am sorry you are going through this. We have been down a difficult road with both of my daughter's schools. I agree communication is key. But I will tell you schools WILL push you if you are not protected. Our school's "doctor" (a local ped that consults with school) outright rejected doctors notes (from top NYC doctors that are way out of her league). We ended up needing to hire an attorney- mainly to deal with the HS. I suggest that you ask your doctor to write a letter to the school for you. I suggest the doctor requests a 504 plan for you child, and includes a list of accommodations. We got this accomplished with our attorney- but you should be able to do on your own. Our kids main issue with pandas is difficulty with school attendance during a pandas flare. When not in a flare, they are straight A, well behaved, and attend all the time. The school still could not make the effort to help us with this, instead were very confrontational. Getting the attorney on board changed everything. I think before you get too far down the path and need an attorney, get a 504 plan. Our attorney basically brainstormed accommodations, and wrote the letter for our doc, then the doc made minor changes and put on his letterhead and sent to school. PM me your email, and I can send you a list of accommodations to get you started.

Great news!! Thank you for your never-ending thoughtful posts and messages. My thoughts are with your son. If there is one thing our kids can take from this journey, hopefully it is resilience!

Fall apart- I believe my younger pandas daughter has/had IBS-C. Tried diet, laxatives etc. Nothing worked from age 0-11. She literally pooped once a week, and it caused lots of mood issues- separTe from but made worse by pandas. Dr put her on low dose of prozac for anxiety/ mood- within 2 weeks ALL constipation issues PLUS lingering anxiety/ mood issues were gone, and have stayed gone over a year now. I subsequently read how prozac is being looked at for IBS treatment.

Falling apart- could the bloat be from constipation or some type of irritable bowel?

Hi. I am so sorry you are going through this. Six years ago my daughter, then 5, was diagnosed with PANDAS. We had a happy, healthy kindergarten kid one day, and a month later we had a girl who couldn't wear underwear, wear most of her clothes, separate from me at all, eat more than a couple foods, temper tantrum daily, excessive toilet issues, night terrors, etc. I heard about pandas and took her to the per for a swab (found out a classmate had strep- with no symptoms). The swab was positive, and that started us on our pandas journey. I urge you to consider (if $$ is not an issue) seeing Dr Elizabeth Latimer in Washington DC. For my daughter pandas is truly an autoimmune disorder. She needs immune dampening treatment when she has a flare up (which can be zero to two times a year, typically). We have had great success with IV steroids and plasma pheresis. I don't know where she would be now, without the help of doctor's willing to TREAT pandas aggressively. She is able to live a totally normal life, thanks to them. If that travel is to far- I suggest an immediate appt with Dr K in Chicago. If he diagnoses pandas, he will probably recommend IVIG, which is also $$.

My 12yo has been constipated since birth! We tried probiotics, natural laxatives, miralax, diet, etc. All with no luck. A little over a year ago we started her on very low dose prozac (5mg) to help w/ anxiety and mood issues that had not resolved from pandas flare. It has completely eliminated all constipation issues! (It also cleared up anxiety and mood!). http://www.ncbi.nlm.nih.gov/m/pubmed/16128675/

billn My kids haven't had IVIG- so cannot comment to that specifically. I have heard improvement starts at 4-6 weeks post IVIG, and continual improvement can be seen for 6 mos to a year. I will share our plasma pheresis timeline- for both of my kids (three times between the two of them) improvement started immediately, and both were almost 100% improved at 1 month's time. So they really did not need 1-2 years of healing of inflammation, or time to unlearn bad ocd habits. It was literally almost like magic. They almost couldn't remember all the ocd things they went through and why, after the month. So I would imagine once IVIG kicked in- you should see a fairly quick turnaround.

Im sorry you are dealing with this. We had a weird experience with Strep B this past year. I was really sick a lot of the year, due in part, to my first year working in a preschool. My older daughter also had a major flare up that we were fighting much of the year. I was sick, and was cultured and weirdly it came back as Strep B. My doc didn't know anything about it, but did give me antibiotics (which didn't help really). What I had I think, was viral, with a coincidental (?) positive strep B. My daughter was improving from her flare up, and contracted my virus. She was swabbed, no strep, although the ped we saw wasn't sure that the culture would show strep B. She gave her antibiotics to be on the safe side. My daughter definitely flared, due to the virus. In the end- I am not sure what the answer is, and how Strep B was involved. It was amazing to me how the docs we saw, knew so little about it.

hi Mom2boys- I am sending you a PM

I am so sorry you are going through this. I do think that sometimes the second time around is harder, because you now know there is no easy fix. But, at the same time remember- you got her better once, you can and will get her better again. My younger one also rages. Restraining and locking her in room has always seemed to aggravate the situation. When possible- the best way to handle it has for me to be COMPLETELY calm (I know it is so hard). We also talk a lot about "working together". We talk about working as a team a lot, when she is not raging, so it is a conversation she is aware of. Then (sometimes) it can be helpful when she is ramping up, for me to say I love you- lets work on this together as a team. It takes A LOT of practice- but it has helped diffuse the situation for us.

Billn I highly recommend the ocd program at USF. It is an outpatient program. I strongly believe something like that should be tried prior to resorting to an inpatient program, especially if you are seeing some healing. Good luck!

The only side effect my kiddos have had from solumedrol is fatigue, normally the next few days...

I think that an IEP has more legal backup (it is governed under the American with Disabilities Act)- so I have been led to believe the school takes those more seriously. If you have the money to hire a special ed attorney, or advocate, it may be helpful. Also- Beth Maloney will consult with you and your school district as an advocate. Good luck!

Also- An IEP can MODIFY school requirements, whereas a 504 will ACCOMMODATE the students needs but not change requirements

We have retained an attorney because we have been having issues with our school. She has started with letters from our doctors. From what I have seen your letter should include Child's name is under my (neurological?) care for PANDAS. PANDAS causes symptoms including ocd, anxiety (insert yours). Due to the nature of this disorder I am requesting an evaluation with the child study team for an IEP. I request that the following accommodations be considered: give a list of needed accommodations, there are several threads on this, ours are mostly surrounding attendance, late arrival and homebound- but they can vary according to your child's age and symptoms. What type of doctor are you seeing?

I am so sorry you are dealing with this. You are between a rock and a hard place, and certainly the first priority is his safety. That being said, we had a very bad experience with an emergency room this year, which has lead me to be very distrustful of doctors and hospitals. I do not know your situation, but I would consider the following_ Are you able to change facilities? The only residential treatment facility that I would trust with my daughter is Rogers Institute. I believe they are in Wisconson. Is moving him there a possibility? I would consult with your insurance company. I have heard that they try not to cover much time for inpatient hospital stay (not surprised, insurance companies suck). Once the facility states he is no longer in crisis (their opinion, not yours) the insurance co will want him released, will not cover. consult an attorney? I don't know your financial situation, but I know the ER totally misrepresented their rights regarding my daughter when we were there. I would not trust what the hospital tells you. Is it possible for you to consult an attorney regarding exactly what your rights are? Treatment? I have also heard that there is not a lot of therapy at some of the hospitals, it is more a "holding" facility until the patient stabilizes. If this is the case, I would look in to following up this hospital stay with a longer residential stay in a therapeutic setting of your choice. I am sorry I have given you more questions than answers. I think Beth Maloney could possibly consult for you, after her medical kidnapping cases she is probably pretty experienced in this area, and we know she understands pandas.

Where are you located? You need a pandas doc to help!

Thanks Eamom! Can you share any info on prozac and growth retardation? My younger dd is Teeny tiny naturally (I am only 5-3, my mom 5). She has been on 5mg prozac for a year. I think it has helped with mood, and helped with constipation- but she needs every inch she can get, and next couple of years are key. Prozac hasn't stopped pandas flares. She had strep a few months ago.

My daughter has PANDAS due to strep throat, initially. First episode was remitted by 30 days of daily antibiotics. A month later she had her tonsils out- and it caused a major exacerbation of symptoms- even though on antibiotics. Strep may be your trigger, but what it triggers is an autoimmune reaction. IMHO your child would probably benefit from a long course of antibiotics (30-60 days) plus an immune dampening treatment (steroids, IVIG, etc). If the issue with pandas was only clearing illness, it would be much simpler, and this forum wouldn't be so busy😞

Hi working on insurance appeal. Anyone have a copy of Dr Latimer's apheresis study full txt?

Has anyone tried for ocd? Any info/ thoughts?

Aerose Thanks for your insight! I have two pandas girls- teen and preteen. We have found that the combination of immune therapy, ERP therapy, and time, to be the key factors in recovery. Prozac has been very useful at extremely low dose to lift and stabilize mood. Even at higher doses it did not help ocd. Older dd tried Xanax. Was not particularly helpful- and thank u for adding rebound effect- as we would see that abt 6 hours later. Took us a few times to realize.

Tbella Have you tried ERP? (Exposure therapy)

Sorry to say yes- pandas runs in families- I have 2 daughters- both have it. There are many families on here with multiple kids suffering. Many of us go through this with spouse (husbands usually). He will eventually get on board (somewhat). Very hard on a marriage.

Sorry- Don't have link- In Providence, RI (Brown U) March 14-15 Sponsored by pandas network