Try it with a teenager!

[jyl]

The older they are the harder it is!! My son is pretty cynical as far as accepting all these problems as a way of life. Poor kid, has been to SO many (ineffective and disbelieving ) doctors-he can't possibly grasp the tremendous hopefullness I now have. (Too young, and tired of talking about it.-17yrs. old) I am amazed that I even got him to our first promising appt. in 10 years. Dr. B. is as nice as everyone said..and told me my son's antibodies are probably the highest he's ever seen.

 

Now for my new problem. my son has been faithfully taking the antibiotics-thank God! He took the prednisone for 2 days, and then must have read on the internet that it has a side-effect of weight gain, and refused to take it without talking to Dr.(he likes him-another thank God!). Now he wants to wait till our next appointment-tomorrow. I did leave a message to tell Dr. about it. My son is very into working out (hours a day-OCD) and natural foods. Come to find out he is taking caffeine tablets to get more energy for workout-which we told him really sets off symptoms.

 

So...........1 step forward, 1 step back. What exactly does the prednisone do for the healing preocess? I know it's used a lot, and wish there was something he could take in place of it!!

[colleenrn]

How long will he be on the prednisone? It it is pretty short term, it won't cause him to gain weight, that is when you are on it a long time. Have you tried Ibuprofen also. The steroids are to help decrease inflammation of the basal ganglia. Ibuprofen is also an anti-inflammatory, but not as strong as prednisone.

[thereishope]

Prednisone is used for different reasons. For some it is used as a diagnostic tool to help the dr determine if it is PANDAS and to see if they are a good candidate for IVIG.

 

Some have seen that it does help with the recovery itself. During my son's second exacaerbation, The steroid jump started recovery. He did not backslide after going off the steeroid as is the case for a good number of PANDAS kids. Its very important to add that my son received his 5 day burst only 5 days after started abs for a strep infection and we caught that infection very fast.

 

How long a burst did he have? 5 or 30 day? For 5 days, weight gain shouldn't be an issue. For the 30 day, it might be. Is he very conscious about how he looks or "overly aware" of imperfections? If so, then relay that to Dr B. You don't want to add more problems into the mix if weight gain does occur.

 

There are other things that have anti-inflammatory properties such as Ibuprofen, Zithromax, and certain foods like pineapples. However, I think steroids would achieve the biggest change in inflammation.

 

Buster has a section about steroids in his FAQ page you can reread for more info on steroids and PANDAS

http://www.latitudes.org/forums/index.php?showtopic=6266

[jyl]

How long will he be on the prednisone? It it is pretty short term, it won't cause him to gain weight, that is when you are on it a long time. Have you tried Ibuprofen also. The steroids are to help decrease inflammation of the basal ganglia. Ibuprofen is also an anti-inflammatory, but not as strong as prednisone.

 

 

Yes, you and I know short-term shouldn't affect his weight, but it's a huge issue for him. Around 2 1/2 years ago, he lost about 75 lbs by working out, and compusively watching every crumb he put in his mouth. He's now 6'3", and his hard work has paid off. He won't touch a medication if there's even a chance of gaining weight back. Being overweight was also a huge source of pain for him-besides dealing with the panda. I wonder what dosage of ibuprofen you would have to take. Perhaps I will ask the doctor tomorrow.

Thanks for the reply!

[jyl]

Prednisone is used for different reasons. For some it is used as a diagnostic tool to help the dr determine if it is PANDAS and to see if they are a good candidate for IVIG.

 

Some have seen that it does help with the recovery itself. During my son's second exacaerbation, The steroid jump started recovery. He did not backslide after going off the steeroid as is the case for a good number of PANDAS kids. Its very important to add that my son received his 5 day burst only 5 days after started abs for a strep infection and we caught that infection very fast.

 

How long a burst did he have? 5 or 30 day? For 5 days, weight gain shouldn't be an issue. For the 30 day, it might be. Is he very conscious about how he looks or "overly aware" of imperfections? If so, then relay that to Dr B. You don't want to add more problems into the mix if weight gain does occur.

 

There are other things that have anti-inflammatory properties such as Ibuprofen, Zithromax, and certain foods like pineapples. However, I think steroids would achieve the biggest change in inflammation.

 

Buster has a section about steroids in his FAQ page you can reread for more info on steroids and PANDAS

http://www.latitudes.org/forums/index.php?showtopic=6266

 

 

Thank you for the article-I'll check it out. His prescription was for 10 days. Yes, he's worked hard to lose a lot of weight, so that's a problem for him.

[thereishope]

jyl,

 

I know you read this forum and you are aware of PANDAS kids having issues with food. Anorexia and BDD (Body Dismorphic Disorder-an OCD spectrum disorder) are very serious and shouldn't be a surprise with PANDAS. I know he's not showing anorexic tendencies because he doesn't want to lose weight, but I'm trying to cite a food issue to compare it to. I would think 10 days shouldn't really cause weight gain, but you don't want him limiting food intake to offset what he thinks will be weight gain with the steroid. I really think this need to be discussed with Dr B. Please keep us updated on him!

[memom]

Hi Jyl,

 

I too am dealing with two teenagers/young adults with this. My dd17 has been on steroids twice, a month each time. I can tell you will certainty that 10 day dose will not result in weight gain. My daughter on her first month round did gain weight, but as soon as she went off, it came right off (all apetite related). It did not seem to repeat with this second month's dose.

 

I agree this age is tough. That's all I'll say. My 20yo son is a bit easier. He is motivated to get better as it has kept him from his future with further education. While all his friends are in their second year of college, he has failed two attempts due to the brain changes with focus, anxiety, and mental processing among other symptoms.

 

By the way. We had great success on the steroids. Round two was even better than the first round. Less OCD returning after this second round (but has been more than when on the steroids where she got to 90% the second time). I will tell you that I think a 10 day dose will just let you know if IVIG may be helpful. I would be surprised if you see long term benefit, though anything is possible with this disease.

 

Good luck,

 

Ellie

[Joan Pandas Mom]

Hi Ellie,

What were the doses of your s and d? My 15 yr old 6'1" 160 lb son just finished 40 mg of prednisone for 5 days. Should I expect to see results now? It seems to have increased symptoms?

[Allison]

Hi,

Nice to be where the teen parents are!

 

My dd16 was on 5 day Pred with limited, if any, improvement, but then we put her on a full month (2 weeks + 2 weeks taper) and showed tremendous improvement during the time she was on the steroids. She gained a LOT of weight, and it's not come off yet, but it's only 10 days past the last taper dose.

 

One thing to realize, though, is that the OCD/dis-ordered eating/body awareness is a symptom of the inflamation. Emma hated oatmeal and eggs, then on Prednisone with her increased appetite and decreased symptoms, she was happy to eat those foods.

 

Maybe your son's severe body image issues will lessen on the Prednisone.

 

I have to say, though, that the symptoms have almost all returned now that she's off the steroids. We're thinking of trying another 5 day burst, just because she's really suffering right now. So are we, for that matter.

 

If your son is into natural remedies, he could really do this community a great service by searching out alternatives to the very harsh drugs. I'm a granola mom myself, and would never in a million years have thought I'd be happy to shovel antibiotics and Prednisone down my daughter. I joke that it was the Lexapro that was the "gateway drug" for her!

 

Curcumin, Quercitin, Boswelia, and Bromelein are all very good anti-inflammatories, and come in different supplement formulas. The one I like is "BCQ" by Vital Nutrients. I used to get it from our Naturopath, and now I see it at the drugstore chain, Pharmaca.

 

Also, remember that Omega 3 Essential Fatty Acids from Flax and Fish are natural anti-inflammatories. Whatever formula you choose, check the quality, as oils go rancid (oxidise) when exposed to air. Look for products that have been nitrogen treated.

 

Finally, check out the Dr. Bock book about his "Healing Program" for "The 4-A Spectrum Disorders." Sorry, title from memory. He's a DAN! Doctor, and his protocol involves detoxing (MSM, chelating, etc.); diet change (gluten/casein free); supplementation; and medicine. He even goes into PANDAS a bit, and I find his approach ("moms know") to be refreshing and in line with my understanding of health and healing.

 

I think your son sounds awesome, and I hope that you've heard back from your doctor by now and that your boy has decided to carry on with the Prednisone. It really is amazing when the kid comes out from behind the veil of symptoms. It's like a whole new person you've never met before.

 

Good luck, and let us know how it goes. Have your son post some of his findings about more natural and alternative solutions to the chemical treatments.

 

Allison

[memom]

Daughter has done two month long rounds. She weighs about 110 lbs. 50/40/30/20/10. Next round 40/30/20/10.

 

Son weighs about 140lbs. 60 daily for 5 days.

 

Daughter on round one took one week before improvement started.

On round two, day one of treatment. She was not quite as bad when we started this second round as she was for first round but definate improvement from first day of starting and had a better response than with her first round. I think the difference also was how it was prescribed. Dr. L. split each day's dose so not all at once. The second month prescribed by Dr. B. and took entire daily dose all at once. Also, brother not yet recognized as a strep source during her first round. About a month after her first treatment (was in October), brother tested for ASO/Anti dnase and found to have titers more than three times normal with elevated Cam K. levels. So, maybe better response second dose because brother had been on a month of Zith already when she restarted steriods in January.

 

Son not sure. Started a new antibiotic at the same time but seems like by about day 7 noticed jump up in improvement.

 

I hope this helps.

 

Ellie

[bubbasmom]

Wow, this is the first I've seen this many parents of teens. I had hoped, this being a pediatric onset disease that somehow as they got older this went away or improved. My son is 13. I really thought this would soon be over, I guess not, huh?

[tired mom]

Wow, this is the first I've seen this many parents of teens. I had hoped, this being a pediatric onset disease that somehow as they got older this went away or improved. My son is 13. I really thought this would soon be over, I guess not, huh?

I wish it would be over for you soon too. My daughter is 17 and I can tell you it got a little easier between 15 and 16 but she got hit with mycroplasma p this fall and seems to have relapsed quite a bit.

[momaine]

Wow, this is the first I've seen this many parents of teens. I had hoped, this being a pediatric onset disease that somehow as they got older this went away or improved. My son is 13. I really thought this would soon be over, I guess not, huh?

 

My dd is 13 too, but we just discovered 3 months ago that her symptoms were related to an autoimmune issue. Hang in there. Maybe it will be over for you soon.

Angela

[Allison]

Hi, thought I'd ask a "teen" question since we're all parents of teenagers.

 

My DD16 is going to the Big Dance Saturday night. She's been looking forward to it for weeks, and we've got the dress, the shoes, etc. She's going with a boy who used to be her boyfriend, but they're just friends now. They go out in large packs of kids and have a really fun time.

 

My question is, do any of you parents know what would happen to a PANDAS kid if alcohol were consumed? She's a good kid, and her friends are pretty straight-and-narrow, but I know that alcohol and pot are out there, and she tells me about her friends who drink or smoke. I worry that she's in this kid-like state of regression and will be taken advantage of or pressured into doing something she wouldn't normally do.

 

It's bad enough worrying about a healthy teenager, but the added edge of PANDAS and all that goes with it -- it's a wonder I get any sleep at all!

[peglem]

My guess is that it would just really relax her...