Posts posted by T_Mom
Hi--First, I am sorry you are going through this--and second, I have not been on this forum for some time now, but just revisiting tonight and saw your post.
Bottom line: Read everything on the www.pandasnetwork.org website.
Second, if you have a doc who thinks Ps may be the issue...TRY a month of full strength Augmentin to just see if there is any change...benign enough, I think, and worth a try....make sure it is a 30 day trial though, and forget about the titres, just about everyone agrees it is tough to "catch" them at the right time to see an increase or rise, so forget those as indicators--
Good to hear the positive update LLM !! and to see you are doing well MomWithOCDSon ! Yes, having an older teen -- senior in HS and heading to college makes me hopeful. I am sorry your youngest is still wrestling with issues though LLM, and I understand the age related fatigue!!! Home schooling in middle and high school is more than admirable -- good for you !!!! Thanks again for sharing the article-- our youngest was switched to it today.
llm--Our eldest, is great, headed to college next year, and academically strong. (We are so thankful.) I think it was having pheresis followed by IVIG a few months later.) She has been clear for 3 years, and weaned herself off of abx. (she told me last week.)
For the younger, struggling continues. Less volatility, but OCD is crippling, and academic failure. Able to only do 4 of 8 classes this year and last. Still struggling.
IVIG 8 weeks ago, saw good improvement, and then she started declining at 4 weeks post-IVIG, tried IV steroids at 6 weeks post-IVIG, helped a bit, and now two weeks later continuing to decline. Hard times.
THANK YOU for posting this LLM!!! Great article...and makes me want to run there tomorrow to see what they think.
We see Dr L and she indicated no need to stay out of school post IVIG. May I ask who you see and did your doctor indicate when a second IVIG would be done if needed ? Thanks//
Hey Surfmom, so great to read your post tonight--you have captured my own feelings in numerous points. Isn't it amazing how similar our experiences are, this never ceases to amaze me...as it is all too bizaare to make up! Thanks for your reflections--well said!
Slightly off topic, but thought maybe someone here might have an insight on this??? I just watched a clip on new discovery re: synapse connections and autism, and the VP of A-Speaks discussed a research study using one of these two antibiotics which appeared to rid the mice of "symptoms of autism"...and they used an ANTIBIOTIC!!! (I can't hear the video clearly enough to hear if it is Rifampcin or Rapamycin...
Has anyone used either of these with PANS?
(here is the clip)
Check iron level -- both of our daughters have low levels, also might try B-12
A very pro-active site!!! Way to go to "whomever" is the "muscle-guy" heavy-lifter behind this effort!!! THANK YOU! (again no doubt !)
Excellent responses in the comments above--Our experience has been over 6 years with two kids, and both have been treated with strong steroid bursts, at times for a month at a time.
No big deal. One d diagnosed with lyme, both with PANS.
Both benefited from the treatment -- it diminished inflammation--worked well.
I was afraid to try it at first, but our PANS doctor recommended, in fact, it was recommended the first time with my first-flairing daughter by a non-PANS doc! He was a savvy neurologist. When he said he would do it if it was HIS child...we knew it was worth a try, and we were desperate. (My d presented with severe sudden-onset OCD and ticcing, age regression, etc.)
We have used Dr K's protocol and numerous times Dr L's (which is typically a few weeks)-- It is well worth a try. Expect that you will see some activation, as Dedee said so well above, this is a normal reaction to the medication. Give it 3 weeks minimum and then if the activation is too severe you can back it off, 3 weeks can help. IF your PANS doc is recommending it is most likely worth a try.
I don't know if this will be encouraging or not, as I sadly know that IVIG and pheresis are not always readily available to everyone, but I want to share our experience, and encourage you to have hope that WITH TREATMENT he will be back.
Yes, this can happen, and it can happen more than once. Our d's symptoms literally morphed from severe OCD to ODD with seemingly little we could do to recover her--she was in 5th grade the first episode this happened, it was unbelieveable--She became someone else and was uncontrollable. I have an advanced degree in special ed...every behavioral intervention fell short...She put holes in the walls, etc.
We had IVIG and it completely restored her, sweet personality, OCD and ALL ODD literally "faded" away week to week, it took about 3 months to get to 100% -- that first severe episode. Recovery started and was evident within 48 hours, literally.
For 18 months she was 100%. School, friends, all was good.
Second severe episode and the same happened, OCD into ODD, again, raging--swearing, couldn 't say a kind word, --attacking us physically. (calls to police type of rage, breaking windows, cutting my clothes, etc.)
We did IVIG and it did not help this time, seemed to make her worse(?)....
We did plasmapheresis a year ago and slowly...slowly she has come back, with OBVIOUS improvements week to week as the raging slowed, swearing, attacks became less and less frequent. She had been out of school for 7 months, and after pheresis was able to return 2 months post pheresis.
We also went to Rothman Clinic for 3 intense weeks with Dr. Marni Jacob, wonderful amazing insightful--I can't say enough about her...but it was ONLY once pheresis was done that my daughter was "available" and able to be "there" for it--she could not have benefited from the Rothman Clinic if the physical treatments of IVIG and pheresis had not been done.
Croatianmum, sorry to hear that you haven't heard back from Dr.K. Maybe try an email with the subject "PLEASE PLEASE RESPOND!!!!!" or something like that.
I'm sorry that your son is still struggling. We also did not have great success with our first two IVIGs, but steroids did help my son.
How about CellCept? That's what we are trying.
Hi _anna, how is your sone doing? Do you think the cellcept is helping?
hope things are better--
The effects may take awhile to be evident -- and it may be a week to week progression...two steps forward, one step back....Ask him in 3 to 4 weeks if there is an improvement, and have some way to quantify the symptoms, a checklist, a tally--something that is objective. His own "feeling" may be affected, but slowly...six months from now, that is when you will have a better picture of the outcome/results from IVIG...just our experience, hope that helps.
Hi, we went to the Rothman Clinic last summer for the 3 week (once a day for an hour only) intensive CBT program for OCD.
My daughter's have both had severe anorexia issues in the past, and fairly straight forward PANS issues, (ie. textbook). The time at Rothman was amazing. Therapist was very, very skilled. However, my daughter DID NOT have eating issues at that time..and she had just had plasma pheresis a few weeks earlier..she was doing better post-pheresis (she had severe OCD and raging issues) and was "available" to the intensive CBT thanks to the pheresis...it was still a very rough go doing the therapy, intense but helpful. They are as skilled in CBT as there is, a remarkable CBT program.
From the description, your daughter is so far down in her BMI that she is in a critical state, and has been for sometime. (Thus, the tube feeding is being recommended by your doctor to establish a normal balance in her body--this is critical.) This must be dealt and I know you want to take steps to get her weight restored to a safe level.
The longer this goes on there is an increase in possible heart, organs, etc. being damaged -- please do not wait to get the eating disorder issue under control.
We saw the E.D. team at The Children's Hosptial in DC (both daughters, for months)...
....When I felt like we could not handle the situation, and the doctors were recommending tube feeding on an inpatient ward we considered going to the Kartini Clinic in Portland, Oregon. It is designed for children, and the expert doctor (Dr Silber) at Children's ED Clinic thought VERY highly of this program. You may want to look into that if you can. They will make her follow a prescribed routine -- inpatient or outpatient. You can stay nearby. It is very highly thought of and works with children. We almost went, but that time my daughter started to eat again after pheresis (both daughters have had it.) The Kartini Clinic would re-establish her eating before she goes home. They may be worth a phone call or email to describe your critical situation. They have a waiting list often, but take critical cases -- have a doctor call.
I truly believe that the brain needs to be re-nourished before you can start thinking about places like the Rothman. When a child is so far down -- PANDAS/PANS or not, the immediate need is nourishment before they can deal with the OCD issues. Please pursue this. I am happy to talk with you again if you want to pm me.
Fantastic!!! This doctor sounds like he is both testing and treating ! I truly feel the treating Pans doctors need to be working together to share testing protocols and treatment plans.
I am really happy for you.
The article that was recently published re schizophrenia being affected positively by Culturelle type probiotics made me go out and get that type-- our d (14) is taking it once a day -- away from the Augmentin/azithro
I am hoping it will be helpful - there is obviously some positive neuropsych connection.
I wish you every success with this--
A lot depended on the nurse in our experience-- if she was upbeat and "matter of fact " about it then it went well....
Be sure he is very well hydrated the 24 hours before -- and new distractions are on hand--
Games, movies , etc. Special foods and drink on hand -- are you having steroids too with it? Some doctors prescribe that at the same time --
I am so sorry , and many of us can relate to the severity of symptoms you are describing. You asked how people learn about possible treatments and truly in our case this site has been a lifeline -- being able to read of the experiences of others has been a help. We chose a line of treatment and stayed the course until it worked or became evident it was not working, then something else would be tried- -
Www.pandasnetwork.org has also been key --
Quite honestly if my child was as severe as you describe I would try to get to a Pandas treating doctor ASAP and one that can test and diagnose and treat!!! Have you considered the Duke group? They are doing multiple tests and treating accordingly --
Hi--Good for you that you were able to get in and see Dr L so quickly, and to start potential treatment within weeks of the onset. That, hopefully will be a most effective step to have taken!
There is a good chance that you are seeing PANDAS, from what you are describing certainly makes one understand Dr L's diagnosis.
I can share with you our own experience with our very first steroid burst for our d. When I asked Dr K ...HOW would I know if the steroid burst was working -- His reply was that we would see an obvious and dramatic improvement. I asked him what "obvious and dramatic" meant, he relied I would know if it happened!
He also indicated that it could be up to 6 to 8 weeks after starting the steroid burst, but we may see a change sooner.
Give it time. The brain takes time to heal.
If in Maryland the only truly insightful, and able to treat with immune-modulating treatments, and the one that "gets" this, is doctor Latimer in Bethesda MD.
PM me if you need contact information.
Dr Murphy at USF recommends omega 3 with primarily EPA (vs. DHA)...
NO omega 6 or 9.
We have used Nordic Naturals EPA-Extra, which you can get at Whole Foods. None of it is inexpensive!
All the best to you--
I understand what you are saying--I also had constant strep growing up--both my sister and I did, and I carry the effects as well into adulthood. I have also sought out the cbt supports for our kids--same reason.
My hope and prayer is that they will be stronger as a result of this experience.
Since you said you stopped the Augmentin after visiting the Rothman clinic -- I am wondering if they advised you to stop it since you were going to be on a different antibiotic? Will he be part of Dr Murphy's azithromycin research?
I am hoping that you did not just stop it cold, with nothing to be given instead?
Math was a huge issue during exacerbations in our house, and the only way out of it was to treat the illness. I hope the study at the R clinic is a great help to you--
Great news! Thanks for sharing it!! What did you decide to do about giving, or not giving the vitamin D???
Rogers Memorial Hospital
in PANS / PANDAS (Lyme included)
Would you (both) mind sharing what meds or supplements your child is on? We are considering the Roger's program, but timing is tough--thanks