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Jtsmama

Anorexia...Treatment

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11yo PANDAS son presented with Anorexia after switching from IVIG to SCIG in Jan/11. Gtube placed in April after losing too much weight. Currently on feeds day/night. Eats some by mouth, severe OCD with food. Participating in Feeding therapy x 3 months. Have any of your kids gotten to the extreme that they have a Gtube place?

 

Contacted Dr T, just completed labs yesterday, awaiting results. His recommendation is PEX and HD IVIG. What can I expect to happen, over what time period (treatment wise)? Currently on Biaxin 5ml Bid, Hizentra for Functional Antibody Deficiency weekly and 24 other meds.

 

My son has it all: severe tics, OCD, ADHD, insomnia, severe anxiety, suicidal thoughts (has attempted), intrusive thoughts. I think we have experienced it all! He is in a really bad place right now, and I am praying everyday that something gives...soon!

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Jtsmama,

 

My goodness, my heart goes out to you and your family. His certainly sounds like it would qualify as a debilitating case. Hopefully, Dr T can get you into CHOP for PEX and HD ivig ASAP.

 

Kiddos can react differently to treatment. My dd11 had the restrictive eating thing when she was really sick. She never had PEX, but her first ivig was in 5/2010. She was 4'10" and 85lbs. 17 months later, she is about 5'6" and 135. The restricted eating stopped immediately for her, if fact the ivig procedure itself had her eating like I hadn't seen in a long time.

 

So he has a surgically placed feeding tube rather than the one that goes up the nose? Has he had a modified barium swallowing study done? Wow, this definitely sounds like one of the top cases in terms of severity. I'm sure Dr T is doing all he can to move your DS through the evaluative process quickly.

 

You're in my prayers. Do you have support? This is so much to handle. How are you doing it?

Jill

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11yo PANDAS son presented with Anorexia after switching from IVIG to SCIG in Jan/11. Gtube placed in April after losing too much weight. Currently on feeds day/night. Eats some by mouth, severe OCD with food. Participating in Feeding therapy x 3 months. Have any of your kids gotten to the extreme that they have a Gtube place?

 

Contacted Dr T, just completed labs yesterday, awaiting results. His recommendation is PEX and HD IVIG. What can I expect to happen, over what time period (treatment wise)? Currently on Biaxin 5ml Bid, Hizentra for Functional Antibody Deficiency weekly and 24 other meds.

 

My son has it all: severe tics, OCD, ADHD, insomnia, severe anxiety, suicidal thoughts (has attempted), intrusive thoughts. I think we have experienced it all! He is in a really bad place right now, and I am praying everyday that something gives...soon!

 

 

I am so sorry -- this must be very frightening. Your son obviously must have a number of doctors, you mentioned he is on 24 medications -- ARE these all being coordinated by one doctor?

 

Jtsmama, you mentioned he has a number of symptoms, "severe tics, OCD..anxiety,,,,intrusive thoughts" -- Have any of these been 'lessened' by treatments in the past? Did this give you any clues as to what is the root causation? Have you seen any positive effects from the Biaxin? -- or from any of the medications?

 

What diagnoses have been made, and by whom?

Have you had him seen by an infectious disease doctor at any time?

I think these would be the questions I would be asking myself. I hope you can find someone with insight into your dear son's situation very soon. All the best.

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I am so sorry you are going through this awful painful experience right now.

 

My immediate "brainstorm" thought for you while you are waiting on testing and the possibility of PEX/HD IVIG is to talk to your doctor about the possibility of incorporating two antibiotics into your regime at this point in time. There have been several families who have discovered long term chronic infections such as mycoplasma, bartonella and/or lyme that often require two antibiotics at once. Another thought is to consider treatment for viruses as you wait. Viruses have also been an issue for our family and I was reading the Texas symposium notes from TPotter and noticed that many doctors touched upon the topic of viruses as major issues for PANDAS, MS, Lupus, etc......

 

The families on this forum have been though so much pain and can support you with their experiences and what they have learned!

 

We are here for you!

 

Elizabeth

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Kiddos can react differently to treatment. My dd11 had the restrictive eating thing when she was really sick. She never had PEX, but her first ivig was in 5/2010. She was 4'10" and 85lbs. 17 months later, she is about 5'6" and 135. The restricted eating stopped immediately for her, if fact the ivig procedure itself had her eating like I hadn't seen in a long time.

 

Our son (ds11 at the time) was very similar to this. Wow, Jtsmama, your post was like a Vietnam flashback for me: sent chills down my spine! Our son lost 20 lbs in a few months, and we had to repeatedly remind him that we'd have to put him in the hospital for his own good if he didn't eat. Our house was like a war zone back then.

 

So here's the good news: Like JAG10's dd, our ds came back from 1st round of IVIG with Dr. K and within a few days started eating like a horse! Went from being unable to eat (due to OCD fears) to eating more at one sitting than seemed possible. Huge relief! He had subsequent flares, but after we got him on the right dose of the right abx (for him, augmentin XR @ 2000 mg / day), he's been making steady progress. He eats well now (like a typical teenager - our grocery bills are killing us, but we love it!!!).

 

Hope you find similar relief from PEX or IVIG if you go that route. As others have mentioned, making sure your ds's abx are sufficient to prevent re-infection (or kill off existing infection) is equally crucial to sustain the gains after IVIG/PEX. Best of luck!

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11yo PANDAS son presented with Anorexia after switching from IVIG to SCIG in Jan/11. Gtube placed in April after losing too much weight. Currently on feeds day/night. Eats some by mouth, severe OCD with food. Participating in Feeding therapy x 3 months. Have any of your kids gotten to the extreme that they have a Gtube place?

 

Contacted Dr T, just completed labs yesterday, awaiting results. His recommendation is PEX and HD IVIG. What can I expect to happen, over what time period (treatment wise)? Currently on Biaxin 5ml Bid, Hizentra for Functional Antibody Deficiency weekly and 24 other meds.

 

My son has it all: severe tics, OCD, ADHD, insomnia, severe anxiety, suicidal thoughts (has attempted), intrusive thoughts. I think we have experienced it all! He is in a really bad place right now, and I am praying everyday that something gives...soon!

 

 

Hi Jtsmama,

 

my dd was hospitalised for A.N. (thanks to PANDAS) when she was 7 years old. She dropped from 50 pounds (she was slender to start) to 42 pounds in a matter of 2 weeks. It was very scary.

 

The things that really helped us (in addition to hosp. at an ED clinic):

1) Azithromycin (250mg/day) this was the 4th antibiotic we tried and the one that really worked for us (did we have intracellular strep? mycoplasma in addition to strep? was it the immune modulating/anti-inflammatory properties that helped so much?). Your son should probably try an even higher dose (assume he's more than 42 pounds!), maybe 500mg/day. WE noticed an improvement in mood after 5 days of Azith, and she started eating again after about 2 weeks.

2) Advil also helped (symptoms temporarily improved 45 minutes after dosing)

3) clearing her assymptomatic strep carrier sister of strep (Azith. worked, Augmentin didn't) was also key...so get everyone in the household throat cultured to make sure you don't have carriers!!

 

eventually we did do HD IVIG (we weren't at a crisis by then, but her baseline was changing with each viral infection).

 

As far as "new stuff", check out this thread re. using Amantadine 100mg/day 45 minutes b-4 a meal for AN. Granted, these weren't PANDAS kids, but the results were amazing, so I think it is worth trying (in addition to PEX/IVIG/antibiotics) http://www.latitudes.org/forums/index.php?showtopic=13831&st=0&p=114131&hl=anorexia&fromsearch=1entry114131

 

I would also like to add that (per Sue Swedo PANDAAS lecture) that body dysmorphia develops AFTER weight loss exceeds 10-15% (orginally cause of weight loss may not be BD, may be contamiation, fear of choking, or scrupilosity "I don't deserve to eat"). So, the take home msg. is it's really important to get the weight on and keep it on.

 

Anyway, hang in there...your son will get better!! (but try the Amantadine, I want to know if it helps! it's an anti-viral and parkinson's drug...but it's also a glutamate modulator, maybe that's why it helps?)

 

EAMOM

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My son has all the Anorexic thoughts..he's fat, he cries, freaks out to sit at the table. so I let him east whatever, wherever I can get anything in him. Whether its nachos, yogurt, dry cereal, I don't care at this point. He is at this point, eating sometimes if I fight with him, not willing to on his own initiative. Complains of no hunger, and his belly hurts.

He was prescribed Periactin for years, switched to Marinol

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A few months ago. Periactin made him evil! In the past we used Omnicef for years, no longer works. We tried Zithro when his tube was placed, no change, but he did have a tube infection from the start, prob why no response. Minor changes with Biaxin, when off he is def worse. Neuro does not believe in abx long term, so I am fighting to keep him on this! A few times after Low Ivig he had a 12 hr break of symptoms. Scig we are not seeing that. But he no longer uses steroids unless we have to! NSAIDS are not am option, he developed a severe reaction to them for 6 mos, was hospitalized with sores. But his PANDAS was a lot better then!

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@ Jill, my support is my Mom, and my God for sure! He its co morbid with Functional Antibody Deficiency, Townes Brocks Syndrine. We have almost every specialty on board, appt with Endo next week, a new doc for us. Inf Dis has done nothing as far as abx, talked about diff abx on 2 wk cycle, never did. He did provide his IVIG for 6mos when we had Immuno issues to which I am forever grateful!

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Jt has been failure to thrive until starting IVIG. Started at age 8, at 35 lbs. In Jan was 80 lbs, had been for 2 yrs, taller but really skinny. In April has dropped to 67lbs. I fought for a tube, the docs were doing the "watch and see" game, as he was wasting away!

At that time Immuno was managing Pandas, in March we returned to our amazing Neuro, who recommended G tube not Ng cuz he prefers crunchy foods and would have even more swallow issues. He prob wld have pulled it out! And its a long ride, less infection wish with a MicKey, tho he is OCD about the drainage. MBS showed normal just did it a few weeks ago. No deform, but we didn't get the complete workup due to sensory/meltdown. He tried his best! He eats very fast, drinks very fast. She thinks maybe some poor muscle when it comes to consistent swallowing. Told him to east/drink slower, that's all we can do.

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A few months ago. Periactin made him evil! In the past we used Omnicef for years, no longer works. We tried Zithro when his tube was placed, no change, but he did have a tube infection from the start, prob why no response. Minor changes with Biaxin, when off he is def worse. Neuro does not believe in abx long term, so I am fighting to keep him on this! A few times after Low Ivig he had a 12 hr break of symptoms. Scig we are not seeing that. But he no longer uses steroids unless we have to! NSAIDS are not am option, he developed a severe reaction to them for 6 mos, was hospitalized with sores. But his PANDAS was a lot better then!

 

Like Dr. T. said, HD IVIG (probably more than 1 in your case) and/or plasmapheresis is what your son needs.

 

You also really need docs that are on board with long term full-strength antibiotics. Even with my dd, we didn't see a real turnaround with Azith. for 2+ weeks at full strength (normally only 5 days are rx'd for strep). Dose is also important. 250mg/day probably wouldn't be enough for your son. How much was he getting when he was on Azith? and how long did you use it?

 

I also agree with T. Mom about finding a source of infection. Also, check family members for strep. Our dd's AN didn't really turn around until we cleared her sister of Strep (assymptomatic carrier.)

 

Personally, given your son's history, if Dr. T. can't get you PEX/HD IVIG you should think about traveling to Dr. B. (as he is an immunologist in CT--not sure where you are located) who is well versed in PANDAS. Your son is sick enough that you need a doc that's not going to fight you on the antibiotics, most neuro's (except Dr. T. or Dr. Latimer) know didly about PANDAS. Will Dr. T. rx Azithromycin (or Augmentin?) for you in the meantime? Our ped did warn us that Augmentin is more likely to cause stomach upset vs. Azith, so that might be one reason to try the Azith. first. I get the sense your current docs (not Dr. T., the others) don't know too much about PANDAS and your son is withering away while they are so conservative about antibiotics and IVIG.

 

I would also really encourage you to try the Amantadine if you can get someone to rx it. If it's going to help, I think you would see a change pretty quickly. Also, in addition to being effective against AN (for whatever reasons), it has anti-viral properties (which I think would be good for someone with an immune def). (and I think it makes more sense than Periactin or Marinol)

Edited by EAMom

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Thanks for all the support! unfortunately, son is immune to Augmentin, Bactrim, Omnicef. He was on Zithro for 2mos. Then we switched to Biaxin x 5 mos, I think. Hoping to get things going soon, poor boy is hating life!

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Thanks for all the support! unfortunately, son is immune to Augmentin, Bactrim, Omnicef. He was on Zithro for 2mos. Then we switched to Biaxin x 5 mos, I think. Hoping to get things going soon, poor boy is hating life!

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Thanks for all the support! unfortunately, son is immune to Augmentin, Bactrim, Omnicef. He was on Zithro for 2mos. Then we switched to Biaxin x 5 mos, I think. Hoping to get things going soon, poor boy is hating life!

 

Sometimes if an antibiotic doesn't seem to be working, it's because the dose isn't high enough. That said, your son's PANDAS is in full swing, so treating antibiotics along (ie no PEX no IVIG) will not be enough to stop the cycle/symptoms associated with this autoimmune dz.

Edited by EAMom

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Got labs back: DnaseB, Streptozyme, Myco Pneumo, and IgE all High! Going to rule out carriers for Strep, do we need to do the same for Myco? Have sent and called Dr T msgs, no call back, Im so frustrated! I have an organization willing to help fundraise (huge) but I need a cost projection by this afternoon! Have any of u had luck with Medicaid covering PEX or HDIVIG?

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