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Today DS Turns 15!


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24 replies to this topic

#1 MomWithOCDSon

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Posted 28 February 2012 - 06:55 AM

Today is DS's 15th birthday! Two and a half years ago, I don't know that I would've bet we'd feel like celebrating today, but things look SO much brighter now than they did when we first happened across this forum! Things really DO get better, and my DS is one of the many here who serves as proof!

Back at the beginning, he was a homebound (roombound, actually), anxious wreck of a person with no self-esteem and no functionality. Today he's a straight-A honor student in his freshman year with a couple of good friends, insatiable curiosity about the world, a smile on his face every day, and an enduring love for "The Big Bang Theory."

Thanks again to all of you for the information and support you've given for the last 2.5 years! I don't know where we'd be today without it, seriously.

Thank you! :D

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College



#2 powpow

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Posted 28 February 2012 - 07:03 AM

You will need to change your tagline to a PANDAS DS15- doing awesome!
I am so happy & inspired. Thanks!
and happy birthday to him & you !!

#3 patric

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Posted 28 February 2012 - 07:16 AM

I got goosebumps reading your post! What an inspiration to us all. Happy birthday to your son and thank you for all of your informational and inspiring posts. You are paying it forward for newcomers and "oldies"" alike.
Sharon
Ps. Keep me in mind if we ever do have a Chicago support group. I am not in a position time wise to organize it or start it up but would love to participate if it does happen in the future.

#4 philamom

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Posted 28 February 2012 - 07:31 AM

Any 15yr old who has an enduring love for "Big Band Theory" has got to be awesome! lol Happy birthday to your son!! and congrats on getting him to the young man he is today!

Edited by philamom, 28 February 2012 - 07:33 AM.

Dd 13
Chronic Sinusitis since 18mths of age. Symptoms emerged with sinus infections and into remission with abx.
Severe Episode in March 2006. Dx with PANDAS May 2006. Three other episodes between 2007-2009.
2009- symptoms became chronic.
2010- dx with lyme, bartonella, rmsf. Positive Igenex Lyme. Positive Quest Bartonella and RMSF (igg).
2011- lupus flair, erythema nodosum, Pots, Positive Advanced Lab Culture w/ pic of spirochetes in sample. Positive Igenex

2012- endoscopy & colonoscopy

2013- Still positive for Lyme w/Igenex.. Positive Bartonella w/Quest

2014- Positive Advanced Lab borrelia culture, Positive Igenex, lupus flair, hypothyroidism

 

Treatment: abx & ivig


#5 Tracie

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Posted 28 February 2012 - 08:15 AM

This IS great to news for all of us !!!
Have a very very HAPPY BIRTHDAY to him
and a very happy day for you
PARTY PARTY PARTY !!!!!

Tracie :)

#6 dcmom

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Posted 28 February 2012 - 08:45 AM

Yay! Heartwarming!

He deserves all the happiness in the world!

#7 jag10

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Posted 28 February 2012 - 08:57 AM

SUPER POST!!!!!

Nancy, when you have the chance, would you mind chronicling what you've found most helpful, somewhat helpful and least helpful? Your ds15's daily medication and supplement regimen? Were there any supplements you really felt needed to be increased with adolescence/hormones or perhaps changed dramatically? If you don't mind....obviously every child is different. thx Jill

#8 MomWithOCDSon

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Posted 28 February 2012 - 09:08 AM

You will need to change your tagline to a PANDAS DS15- doing awesome!
I am so happy & inspired. Thanks!
and happy birthday to him & you !!


Thanks for reminding me! :)

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#9 MomWithOCDSon

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Posted 28 February 2012 - 10:00 AM

SUPER POST!!!!!

Nancy, when you have the chance, would you mind chronicling what you've found most helpful, somewhat helpful and least helpful? Your ds15's daily medication and supplement regimen? Were there any supplements you really felt needed to be increased with adolescence/hormones or perhaps changed dramatically? If you don't mind....obviously every child is different. thx Jill


Thanks, Jill! Yeah . . . for sure every kid is different, but always happy to share and hear what others are up to in return! With our kids, it definitely Takes a Village! ;)

Honestly, I tend to think the onset of puberty at about 12.5 is part of what kicked him into the overdrive that became PANDAS, being as everything up until that point was manageable.

Here's the interventions/medication/supplement list, with some subjective notes:

1. Antibiotics -- Augmentin XR for 2 years, very slowly weaned off over the course of about 3 months; he's been off entirely since mid-December and doing well. This med was KEY as it seemed to have jump-started recovery in every respect, and staying on it even after the "big impact" had waned still pushed him along, with minor, incremental improvements over at least 1.5 years.

2. Lamictal -- 125 mg. split in two doses, 75 mg. morning and 50 mg. evening. This is an anti-convulsant and mood stabilizer that is thought to modulate glutamate in the brain. To the extent that we can get the glutamatergic activity leveled out more "organically," we'll look to decrease this in the future, but for now it too has been key to his recovery in our eyes. It helped him break the cycle of feeling overwhelmed and anxious to the extent that he couldn't objectively look at an anxiety-producing situation and problem-solve it. With the help of this drug, he's been better able to handle new and challenging situations at school and socially, advocate for himself, and implement those CBT and ERP skills we've spent $$$$$ trying to give him! Once the antibiotics had done the heavy lifting, it was after beginning the lamictal that we saw the next big bump in improvement.

3. Zoloft - 75 mg./day. He's been on one SSRI or another since he was 8, so it's hard to tell what this does or does not contribute. Would like to wean him off, but reluctant to rock the boat. The biggest thing we've learned about SSRIs, though, through PANDAS and our own unfortunate experience is to keep all doses low and slow in terms of increases and/or decreases. 75 mg. seems to be his "magic point" at which he feels supported but not activated, and that hasn't changed in the last 2 years, despite the addition of 4 inches in height and 25 pounds in weight!

4. NAC -- No question in my mind that this has helped him tremendously. He takes 3,000 mg. daily in two doses, 1,800 mg. morning and 1,200 mg. evening. Psych is a big proponent of its glutamate-modulating capabilities, and though it took a while (titering up slowly over about 2 months) to see an impact in DS, it really has helped his OCD-oriented behaviors.

5. Pepcid -- One tablet before dinner, daily. This was another "aha" moment for us when we decided to try it. DS is high histamine, and despite daily Zyrtec, Flonase and Benedryl (at night, for stuffiness that inhibited sleep), we couldn't seem to keep his histamine production at bay. His eczema would flare, and we'd know his anxiety/OCD would flare shortly, as well. The pepcid seems to have kept both the eczema and the flaring anxiety episodes at bay. Crazy, I know, but demonstrable in our case.

6. Omegas -- Renew Life Super Critical Omega, 1,200 mg., twice daily. All Omega 3's and 9's (no sixes) with a 7:1 EPA:DHA ratio. I KNOW this has been critical to his improvement as we, on at least two occasions, have tried to go with a less expensive omega and once even flaxseed oil rather than fish oil. His behaviors ramped up on each occasion. These are enterically coated and guaranteed "no fish burps;" he's never complained about them, but they are rather large (along the lines of Augmentin XR), so might not work for younger kids, especially.

7. Curcumin -- 600 mg., twice daily. Another one that he's been taking for a long time, with no change in dosage. This is one I'm considering tapering off and seeing what, if anything, happens. As an anti-inflammatory, I'm not certain that he needs it anymore.

8. B-Complex -- 75mg. capsule, twice daily. I really probably need to settle in and do some more research and break these B vitamins up since B12 increases histamine (which we're constantly fighting) but some of the other B's are supposed to be very helpful to a kid like mine. Just reluctant to take one capsule and turn it into 2 or 3 and increase that fistful he already faces every day! We did find that he's more "balanced" with the 75 mg. B-Complex, though, than he was on the 150 mg. More isn't always better (note to self!).

9. Quercitin -- Another histamine-fighting component. Ours is combined with Vitamin C and bromelaine. He takes 1,800 mg./day with 1,200 mg. in the morning and 600 mg. in the evening. It does seem to help him especially through allergy season.

10. Calcium/Magnesium/Zinc -- 600 mg., twice daily. He's been taking this forever so it's difficult to tease out any real cause and effect; we haven't changed the dose at all over the last 2.5 years, though. I will say, however, that we've recently discovered that if he's having a "bumpy" moment with focus on homework or something like that, a Zicam soft chew (zinc) seems to make a significant difference. We discovered that by mistake when he started sniffling and we thought he might be coming down with a cold. Popped the Zicam in his mouth, and he was remarkably focused and speedy with his homework that night. Not sure if he has an occasional deficiency or what. Did a little web research, though, and did come across advocacy for zinc as an effective ADD/ADHD treatment, so there must be something to it.

11. Melatonin -- 3 mg. at night. DS is a complete pain without adequate sleep, and the melatonin has made a huge difference. Now he gets his sleep and he's well-rested and thus much more capable during the day.

12. Taurine -- one 600 mg. capsule in the morning. Seems to help his short-term memory, especially when his anxiety or OCD is otherwise ramped up for some reason (exposure, etc.). This is another one we've left in place for over a year without increase or decrease.

13. Probiotics -- we've cut back significantly on these since we dropped the antibiotics, but he still takes about 70 BCU's daily: 50 BCUs of a mixed one (lactobillus, bifo, etc.) and another 20 BCU's of sach b. His gut used to be a little testy, even before PANDAS or abx, and now he rarely complains. So why mess with a good thing?!

14. Olive Leaf Extract -- We started this in earnest when we stopped the antibiotic, and despite kids in school with colds, strep and viruses, DS has thus far cruised through the winter (knock on wood!). DH and I take it, too, though we give DS a capsule (18% OLE) both morning and evening, while we only take one each day.

15. Milk Thistle -- started this once per day (175 mg.) about 9 months ago. Not sure what it contributes, to be honest, but wanted to protect DS's liver from the abx onslaught. Might cut back on that now that he's been off the abx for a while.

16. Coconut Oil -- one 500 mg. capsule daily. Another one we've had in place for over a year so hard to see what it does or doesn't do.

And last but not least . . .

17. Therapy! We started out with CBT when he was first diagnosed with OCD. Hindsight being 20-20, I think that was more helpful to us than it was to him in terms of "training" us how to deal with the OCD, how to not accommodate it, how to separate the OCD from the kid so we didn't constantly lose our patience with him while he fought with it, etc. There was some minor ERP involved, but not much. With our PANDAS discovery at 12.5 years, we went straight into heavy-duty ERP, and that helped get him out of the hole his OCD had dug for him, along with the abx; it also, once again, reinforced DH's and my support system for not allowing the OCD to entirely take over our household. Finally, when DS came out of that really dark time, he had a tendency to over-analyze everything, including the ERP techniques and responses, to the point where the ERP seemed to have stalled out, too. So we've more recently moved on to a combination of CBT, ERP and what's known as ACT, Acceptance and Commitment Therapy. ACT is pretty "intellectual" and so appeals to DS's analytical tendencies. It seems to suit his age and stage of development now.

Whew! Sorry for that very long response! Just consider it my novella! :P

Thanks again to you and all the others who've contributed so much to our understanding and exploration along this journey. So many of these interventions were suggested by some of you, and we were just fortunate to be in such smart and encouraging company!

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#10 jag10

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Posted 28 February 2012 - 11:56 AM

WOW!!! You do not disappoint, do you?!?!

I see a lot that I am familiar with and a couple that might be worth exploring. What a wealth of information!!!

My dd12 is still on abx and I wanted to know how you determined the amount and ratio of probiotics you are using? I've asked a couple of doctors and they don't seem to have any specific knowledge by responding....what does the package say? She tested positive for yeast in the stool, so I want to increase them, but not sure how or how much.
I was also looking into these shakes by Herbalogica that have many of these vitamins, supplements & probiotics. They are marketed for weight loss, but they seem pretty healthy.

Have you done any of the genetic testing for MTHFR? That's my next step...to test MTHFR, whole blood histamine, zinc and copper (again.) Plus she's battling significant acne despite all the abx. The Proactive has made a dent in it, but the dermatologist added topical Differin to her regimen. My husband and both of his sisters took Accutane in the 80's with a family history of scarring acne. I can't even imagine how that would affect my girl!

Thank you so much for your generosity and willingness to help all of us so much. Your son is so fortunate!

#11 kimballot

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Posted 28 February 2012 - 11:57 AM

Throughout our journey I've felt that I am following you in many ways. i can only hope to be able to report the same success in the future. You are amazing and so is your DS! HAPPY BIRTHDAY!

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#12 colleendonny

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Posted 28 February 2012 - 01:18 PM

Your post makes me happy to read :) :)

#13 LaurenK

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Posted 28 February 2012 - 02:13 PM

glad your son is doing well :)

#14 Worried_Dad

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Posted 28 February 2012 - 02:29 PM

Great news, Nancy! Praying our ds (who turns 16 in June) can follow in your son's footsteps!!!

#15 dcmom

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Posted 28 February 2012 - 02:35 PM

Worried Dad-

How are things? I miss your presence on the forum, but I hope the fact that you are here less frequently means things are well, and your family is moving into a new phase....
Post an update when you have a chance!

Eileen




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