Up-Date on 8yr old & en coup de sabre

[kseevers]

Michael is 8 years old and was diagnosed with En coup de sabre Morphea July 23 2011 just after he turned 6 but I knew something was wrong long before that. I bugged the Dr’s for over a year after the line appeared before we got a referral to Nationwide Children’s Hospital. We started him on Methotrexate within 24 hrs as advised and continued for many months but he kept getting sicker and the Morphea was spreading quickly infact it seemed to be surging. Then we found Roadback . Against the advise of our Dermatologist and Rheumatologist we stopped the Metho and based on the information I shared with our amazing pediatrician he decided to stick his neck out there and started him on Amoxicillin . Not long after , during a routine MRI an area of concern was found on his Thalamus . He started out on 250mg once a day and became sick , went up to twice a day ( am & pm) and once again became sick with flu like symptoms. Our dermatologist has come full circle and now not only supports us but is prescribing his medication and is bumping up his AB to 400mg twice a day — nervous ! Here is a list of symptoms – where we started & where we are;

1- fatigue , was so bad he couldn’t attend school
Now he attends full time and is doing Great !

2- tingly hands and feet that hurt so bad he’d just sit and cry
They still tingle now and then but not as painful

3- facial & eye pain
Rarely now but is sensitive to the touch

4- headaches were severe making him sick & he’d cry until he fell asleep
He still has an occasional headache but they aren’t like they used to be ! Yeah

5- dental problems & mouth sores
Teeth are doing fine and rarely a mouth sore !

6- joint pain made him avoid steps, running or any strenuous muscle use, we’d have to help him to his room when we could convince him to try
Joint pain is still an everyday unwanted guest and some days are worse than others but he runs and climbs with his friends and is able to last much longer than ever before ! Woot woot

7- unexplained rashes and fevers , rash was scraped and examined under a microscope more than once with no conclusive results and he hasn’t had an unexplained fever in a very long time

8- repeated ear and sinus infections
he’s had an occasional ear infection but not repeatedly and we had his sinuses examined when there were no sinus symptoms and they remain infected

9- atrophy or an area on top of his head that no longer grows with the rest of him — depends on which Dr you ask as to what they call it

10- reddish purple line in middle of forehead with slight dent, it changes from hardly there , sometimes it seems to glow and still other times it’s dark and I can follow it from his hairline all the way down his nose

11- stomach pain unexplained and so severe I can’t even guess at the number of nights that he cried himself to sleep or the holiday dinners and get togethers he missed or the only sleep he got was in a bathtub of hot water –
He still gets a tummy ache here and there as most normal kids but with the changes to his diet and regular use of probiotic along with the AB doing it’s thing — their normal and short lived !!

12- area of concern on his Thalamus —
Has reduced in size by 1mm — Happy Happy Day woot woot

I know we’re not out of the woods yet but we’re making slow and steady progress & I couldn’t be more thankful !

[lynnie_sydney]

What absolutely wonderful news. Must have been so very hard to watch Michael feel so wretched. I’m sure many others will be heartened by your great news – but don’t be concerned if there seems a lack of response, as so many are off celebrating with family over this weekend. We won’t let the post drop too far down though and will bump it up post weekend, so it can give people a post-Thanksgiving smile 😀

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[lemons]

That’s the best post I have read on this forum since joining 😀 😀 😀 😀 😀

[Krys]

How wonderful! I’m shedding happy tears of joy.
May he go into total and lasting remission very soon!
Krys

[kseevers]

Thank you so very much , I’m in tears with gratefulness ! I can’t imagine where we’d be without Roadback and all the amazing people — especially my dear ” L” who’s had to calm my panic on more than one occasion. May God give me lots of opportunities to Pay it Forward !

[lorena9]

brought tears of joy!!! So happy for your little boy and your family

[Valsmum]

I am so happy for you!! I hope your beautiful child continues to heal.
Congratulations!
Take care!!

[richie]

Nice news –slow and steady wins it !!!!! sounds real encouraging !!!!!!!!!!!!!!!!!!!!!
Richie

[kater]

Hi K
ecstatic to hear of Michael’s great progress!! How wonderful for all of you. I know there is nothing worse than watching your children suffer. I have never found answers for two of mine and my own illness pales in the face of that. I have SD too and am doing great–the progress IS slow so don’t despair. Like they say , even if its two steps forward and one step back, its not a mess but a cha-cha. Or something like that. Sending hugs of celebration
kate
ps isn’t it wonderful when the doc stands up and takes notice? That happened to me too. Slowly we are winning the battle and changing the world! Thank you Roadback!

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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