Post IVIG Exaceration + Frustration

[kos_mom]

Both my DS 22 and DD 19 had IVIG four weeks ago and both had exacerbations starting yesterday--DD anxiety and DS handwashing OCd. Is this normal or should I be looking for infections?

 

DD has ongoing nausea and vomiting. Got worse on Saturday when she had 101 fever--the day before she broke into a rash since identified as caused by pityriasis rosea, a virus. Tuesday night more vomiting and Wednesday a lot more. Coincidentally she had a gastro appt--she threw up twice in the office and had chills but no fever. Gastro had emergency so saw the physicians assistant instead. Her endoscopy results were fine except for damage to the esophagus because of the vomiting. They suggested she see an infectious diseases doctor in light of her significant history of two unusual life threatening infections in past six months that required extensie hospitalization: necrotizing pneumonia and a fungal blood infection four days after her IVIG. In addition, she's had strep, mycoplasma pneumonia (which I am convinced hasn't resolved but can't get doctors to retest), and two high idiosyncratic fevers in addition to what she had with the pityriasis, as well as five hospital nebulizations for asthma, which was not a problem before the pneumonia. Not to mention leg spasticity that requires her to take an MS med so she can walk and ongoing leg, knee, and back pain.

 

At the hospital, the team, including the ID doctors) agreed the gastro should be the one to look into the nausea and vomiting. I told the PA that and she said they were referring us to another ID outside the hospital. So I called that ID for an appointment, explaining we had a referral. The office said he couldn't see her because she had ID doctors at the hospital. I said they already had outsourced this problem to the gastro and she was referring it on. Finally the appointment person said just maybe if they got the referral letter and if the gastro personally called, the doctor might see DD. He is not back until Tuesday, so I'll call then.

 

I know it is useless to go back to the hospital--they'll just have her see a resident--the one she went to for followup on the fungal infection refused to deal with the myco p. The hospital nicely set us up with a new primary care doctor, but again a resident. My DD went on her own (was on business trip but prepared all the history, lab reports, list of questions) and that doctor said ID doctors should test for myco and she apparently blew off the low iron and ferritin levels, as well as low TSH Dr. T said should be investigated.

 

Honestly, why would the hospital think a resident was sufficient as a PCP for a 19 year old with all these problems? Last PCP didn't seem thrilled to have a patient with so much stuff going on and thought avelox given for pneumonia was perfectly fine to treat strep titers of 660. I got around her by managing to get an appointment with a Pandas friendly ENT to get her proper abx while we were waiting for Dr. L appt.

 

I have no idea if the ID doctor will do any good or not, particularly as one hears they are not particularly Pandas friendly. On the other hand, one feels one has to explore all avenues, but does one really need to beg? I feel I have to engage in guerilla warfare to get proper treatment. Dr. L is good--we see her next week--but she certainly can't manage all this stuff. Getting a decent PCP is a real problem.

 

I seem to have a DD whom no doctor wants to treat--this constant fobbing off is so frustrating. In six months she's logged 23 days in hospital and had nearly 15 ER visits. And scores of doctors appointments--can't remember how many exactly. I just really feel we are at a place that is far beyond my ability to manage. Is it so unreasonable to want to have medical help that could get my DD to a point where she could go to school or work, neither of which she' been able to do for a year and a half?

 

Thanks for letting me vent!

[kimballot]

It is not unreasonable at all to want to have medical help that can get your daughter to the point of functioning.... However, it is also not likely to happen given the current stat of our medical system and the stage of knowledge we are at regarding all things PANS related.

 

 

It sounds like a good primary doctor is really key for your daughter, and she is too old for a pediatrician. Could you check out some other support groups to find a primary doctor who thinks outside of the box? For example, a doctor who is known to be very good with chrons or other autoimmune disorders might be more likely to embrace the PANS concept and work with you through these infections. Or perhaps a doctor who is known to work well with individuals with immune deficiencies. Perhaps you could find lists of doctors through these support groups and then you and your daughter could interview the doctors until you find the one that is "just right".

 

I am saying this because I changed pediatricians a year ago to someone who has a few other kids with PANS on his caseload. It has made all the difference in the world. He has been so supportive and steady through all of the exacerbations and blips we've encountered over the past year and has really helped me to stay afloat and steer the ship.

 

Best wishes -

[mdmom]

I would suggest finding an LLMD (Lyme-literate medical doc). I am not suggesting that your children have Lyme. However, LLMD's are particularly good at finding and treating strange infections.

 

Finding an LLMD over 20 months ago was the best thing we ever did. Our LLMD also treats PANDAS.

[thenmama]

It may be tricky with the PANDAS in the mix or may not work at all b/c of PANDAS, but have you ever considered taking your dd to Mayo? I don't have any firsthand experience, but I have a friend whose two children had myriad problems with their health (serious), and they were getting shuffled around, conflicting diagnoses and opinions, and not getting any real answers from the local doctors, specialists, or our U health hospital. She took both kids to Mayo and has had an excellent experience in all regards. The health issues were thoroughly evaluated and properly diagnosed and the medical team and care provided are extraordinarily well-coordinated. She's been thrilled with it and most important, her kids are getting good help and making significant progress with their issues. It is pretty well known that they don't treat PANDAS there, but her son's team lead isn't anti-PANDAS, either, he just doesn't treat it and they don't have a team doc who does (she inquired about it with him even though it's not something her kids are dealing with). I'm guessing the PANS position of the other docs there mirrors what is seen in most of the medical field-- it probably runs the gamut between vehement naysayers and those who are open to it or accept it but don't evaluate or treat it themselves. The issue is likely to be which docs end up on your team, and I'm not sure if that's something you could work out in advance. Our peds puts advance calls in to specialists she's considering sending us to so we can be sure we're not going to hit a wall before we spend time and money on an appointment. it's worked well for us because we've worked all that out in advance, and it's all handled peer to peer, not doc to patient.

 

Anyway, just an idea-- and suggested without knowing a lot about your circumstances or the general scene at Mayo beyond my friend's experience. What you're going through with docs just reminded me of her situation.

[kos_mom]

Then mama,

So great your pediatrician checks up on specialists before sending your child there! We"ve had so many pointless appointments, and the more we have the less DD wants to bother with doctors. Can't say that I blame her. I have thought about Mayo for several years and will have to seriously pursue this route if I can't make headway by the end of the year. I like the suggestion of looking at CFS or immune deficient groups to see if I can find someone that way. I did ask Dr. L about an intern for DS who at 22 is definitely outgrowing pediatrician and she said she had absolutely no one in the area to recommend; she suggested sticking with his pediatrician. I might consider moving DD back to pediatric practice (she wanted to leave); downside is that all their referrals tend to be to pediatric specialists who won't see anyone over 18. Yet another conundrum to square....

Ko's Mom