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SurfMom

Cellcept - Working!

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After eight months of what most would call a constant exacerbation, debilitation to the point of needing a feeding tube due to OCD swallowing refusal and help with all functions including toiling, complete shutdown of speech, climbing antibody titers and negative affect, we FINALLY have some improvement in DD15's condition.

 

Here is the combination that appears to be reducing her antibody production or cross-reacting antibodies:

 

IVIG monthly at a 1g/kg dosage

Prednisone daily at 30 mg.

Cellcept 1750 mg. daily <---This may be the key

 

Also in her case:

Ativan for catatonia (no speech, shut down, wanting to sleep all day)

Zoloft for moods

 

We have a very long way to go but crossing her fingers that we have turned a solid corner.

 

Will keep you posted.

Edited by SurfMom

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Surfmom, I am so glad to hear this. My son was on cellcept for 5 mths: 2000mg a day and pred and zith. We had to stop treatment because he was so fatigued.

 

Dr. wants to start back but my son will not do blood work (ocd thing I am certain) so dr says it is too dangerous. We were doing labs every 2 weeks.

Also my son refused the ivig...so sad because we had it set up. Please keep us posted on cellcept.

 

Our Dr had thoroughly researched and felt it was best immune drug to treat.

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Hi Surfmom,

 

Can elaborate a little bit more on the condition that your daughter has? Does she only have PANDAS? Sounds like she has a very severe case. Have you tried higher dosages of IVIG? I believe that higher dosages are what currently are being tested in the clinical trial?

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I'd like to offer that one of the best things we have done for my son (and yes, it seems drastic) was put a central catheter in him.

 

When we started IV abx in Jan 2012, doc ordered a Hickman (central IV line in his chest) to be inserted.

 

He has refused to eat (fear of vomiting) and we were able to give him TPN through thte line instead of sticking a feeding tube in him.

 

He gets monthly IVIG through the line.

 

He gets daily IV abx.

 

He gets weekly blood draws - blood is drawn directly from catheter.

 

We give him hydration (Lactated Ringers) when he feels "funky," and it perks him up - doc says it flushes out the "die off."

 

Does he need to get over his fear of needles? Absolutely. And we are headed to Rothman (again) in August to work on this.

 

But the central line has been a Godsend in terms of treatment that he might have otherwise refused.

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Allie has a cath port as well, for IVIG every 3 weeks. Any blood draws can usually wait for her IV days and the nurses just draw the blood before they hook up the IV solution. It has been very, very handy! I was really worried about doing this initially, but am so glad that we did!

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Cellcept is an immunosuppressant drug. Our rheumatologist uses it quite often to treat autoimmune diseases. The reason he picked it for my son was that it is used in kidney transplant patients and in his research he felt some of the same medical reasoning for using it for transplant patients fit some of the things that lined up with pandas/pans the whole autoimmune illness. He and we met with another Dr. one of the professors in chg of the med school and an internist who spent hours pouring over our son's records and the 2 drs felt our best chance at beating this was to suppress the immune system with the cellcept and methylprednisone while using abx and the ivig at the same time to inject new antibodies into his system. Drs wife is an oncology pharm D and she agreed with treatment. It was a great plan and all supposed to start the same day. Only problem is our son took all meds but would not leave house to get ivig and later that eve told the sweet nurse who came to talk with him that he did not want donor antibodies. What the Drs told me was that without ivig it could still work but would take 1-2 yrs. The cellcept caused our son to have major fatigue and after 5 mths we stopped it. The plan was to start back in a month but cannot unless he does labs. You have to watch the white cell and platelet count closely. Hope this helps.

can you elaborate on cellcept and why you think that may be the key for you? Ive never heard of this drug.

 

Thanks! and I'm glad to hear you may finally have found somehting that is helping.

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Thanks for the explanation. Our immunologist at Stanford said that the rheumatologist that is part of the "pandas clinic" has used some immunosuppressants - for those that did not respond to IVIG. He mentioned Riumxxxx(I can't rember starts with an R, another one similar to embrel) .

I wish/ hope someone does a study on These drigs in pans. Also wondering what markers did they look at to determine if they should use the immunosuppressants? Just failure of IVIG? Was there any other anomaly in your child's immune system indication autoimmunity?

Thanks again for explanation, and for how it worked( or didn't- for KathyN son?? Seems like it caused severe fatigue- but did pans symptoms go away?- improve significantly? )

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Lauren, yes, my daughter has one of the most severe and unresponsive cases. After responding excellently to antibiotics, she became symptomatic again after two weeks and was on a downhill slide from November until she bottomed out in February. She had tics, very disturbing chorea, stumbling gait, complete shut down of academic ability, mutism, OCD aversions (dogs, touch, germs), difficulty sleeping, mood swings, and finally catatonia to the point that she did nothing but lie in bed refusing to eat, drink, take medications and swallow saliva to the point of requiring a feeding tube. She became like an infant again even needing toileting and showering help. There is no question that had we not hospitalized her, we would have lost her as she was shutting down in every way imaginable.

 

Powpow, thank you for the mention of the central catheter. Finding veins are getting tough and as stoic and compliant as she is about needles (which wracks me with suffering over the number of times they have to stick her to get IVs going and the dozens of blood tests) it might be an option as this goes on. This kid deserves a medal for her attitude through treatment.

 

In terms of her treatment, she started with IV pred at a high dosage and then a 2mg/kg treatment. After that her IVIGs were spread out two eight weeks and then narrowed to four as she was not significantly improving. The IVIG/prednisone worked extremely well for her chorea and tics, and I know the IVIG was the key in these symptoms as her tics and clonic behavior kick in as the effects of the IVIG wane every three-four weeks.

 

Yes, Ativan is what seems to help with the catatonia. She is no longer sleeping all day and preferring to sit in a chair and zone out. Getting her to respond verbally has been exhausting, and after a long and high dose, we are seeing some kind of improvement with her communication We still have a long way to go.

 

Still cognitively slow in her delay time, ability to follow simple directions, difficulty doing even the simplest writing tasks (I suffered for her so as she tried valiantly through the symptoms to perform during the countless neuro tests...the clock, writing a simple sentence) her trajectory of improvement was so slow at seven months, it was time to consider Cellcept. We were told it would take six weeks or so to start seeing signs of progress and that was indeed the case.

 

The Cellcept, as described above is an immunosuppressant that works by stopping an enzyme used in the production of DNA. As a result it can have devastating results for an embryo, so females of reproductive age have to provide assurances that she will either be on two types of birth control or celibate while on the medication. There is no indication that there are problems down the road once this medication is no longer prescribed, but I have lingering concerns about possible longterm effects of Cellcept since DD is so young.

 

For the first time since November, we are starting to see recognizable signs of our daughter. Two weeks ago she smiled and laughed a little for the first time in six months. She is starting to be part of the world again, asking what the plan is for the day, taking her medications and asking good questions like what her medications are for and when her dad is coming home. The other night, with still halting speech, she corrected my grammar and we howled in celebration. I can finally get her to write in a journal and she is doing so with ever-increasing length, handwriting and quality. Today she awoke with a smile patting her dog on the head (whom she has avoided as a wild and germ-ridden beast). She has gone from operating on the level of an infant to that of a fourth grader. As a freshman in high school, we have a ways to go.

 

With the complexity and individual nature of the expression of this condition, I too wish the medical world would do a better job of collecting anecdotal information from parents and do the extensive data analyses to extract various combinations of medications, treatments, supplements, dietary habits and environmental controls in comparison to varying combinations of symptoms. There are just too many arrows being shot in the dark with targets (kids with different expressions of the disease) moving at the speed of light.

 

For those interested in diet and supplements, DD has not been on any vitamins or supplements for months. She was given a course of Vitamin D when that came back low (consistent with having an inflammatory response) in an early blood test. She is (and has been) a strict ovo-lacto vegetarian and we have her eating organic foods as they are available. I maintain that diet is critical in fueling the body's response to this and my only complaint in her treatment has been the poor quality of food available to her in the local hospital. Duke's dietary program is better.

 

The combination of treatment with the addition of Cellcept is no magic bullet, and we have been told that we still may have a year or more to go before we see DD back to full-functioning, but the progress is significant and steady. For the first time, I have some real hope that I have a turtle who is going to win the race. :).

 

Feel free to PM or keep firing questions.

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HI Surfmom,

I have questions! (I apologize if already answered.) I'm glad she is doing better!

How old is she? How big is she?

What is the rationale for 1gm/kg IVIG (vs. Swedo's or the autoimmune dose of 2gm/kg)? Has she ever had 2gm/kg IVIG?

Are you sure it isn't Lyme? It seems that some of the really tough weird PANDAS cases end up having underlying Lyme at the root., esp when IVIG doesn't stick.

Is she on antibiotics now? Which antibiotics have you tried?

Did they check for viruses and other infections?

PS oh I see she is a HS freshman

Edited by EAMom

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  • Surfmom~ My dd started Cellcept a couple of months ago. She is 80 lbs. and takes 1,500 mg/day as well as IVIg 2g/kg every 4 weeks and 40 grams of Solumedrol. I have kept her on abx for over a year , but, recently had breakthrough strep along with MRSA in her sinuses that took her out for the past 2.5 months ending in a debilitating tic of epic proportions. At what point did you start weaning your dd off the IVIg, and, at what point will the cellcept end for her? My immune is doing this without previous experience, just a good working relationship with Duke U. (I have no insurance to see them) and I worry because we are seriously in the dark here. How long after adding Cellcept to your dd's protocol did you start weaning her? How is she doing now and what is her protocol? Thanks!

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