Johns Hopkins HD Research Study

https://aravindachakravartilab.org/pro/Getting_Involved.html easy…send in blood or saliva samples from all immediate family members, medical questionaire.  does not cost you anything and does not take much of your time.   GET INVOLVED.  We need a cure!

Botox #2…. a few weeks in

I messed up his diet and caused some back up. We had to go back to irrigating at the 1.5 week post Botox. I THINK it was because I gave him some pulled pork and he does not do well w/ that texture. After an xray he had significant stool in his descending colon and […]

Botox #2…January 2012

So I won’t bore you w/ the details re: new surgeon at NYU (who is moving to HUMC) and old surgeon who still has privileges at HUMC but is now in private practice (he was the Chief Ped Surgeon at HUMC) and no longer takes insurance….that is a LONG story. We wound up back at […]

new local surgeon, Cipro and more (Fall- early winter 2011)

In Sept (2011) 7 mos post Botox we hit another roadblock. He stopped pooping, we figured we were ready to go back into OR for another round Botox. We started irrigating and contacted our local surgeon who told us he was no longer accepting ANY insurance. Our deductible is huge so it was not even […]

Botox (#1)…..5 months in

Things are really good. Since my last post Joey has been pooping really well, 2-4x per day into his diaper. I remind him every couple hours to ‘give me some poopy’ and that really seems to be working! We are giving magnesium almost everyday (Natural Calm, approx 1-2 teasp). Senna we use as needed, which […]

Botox 4 months in

So around 12 weeks in things got better again.  Poopy diapers and pooping into my gloved hand!  Things are good.  Then he gets sick again, things slow down, pick back up and then the poop becomes more like diarrhea- very watery and very slow to come.  Have put him back on senna the past few […]

Botox, week 12 update

Well things started going a little crazy around week 6. His poop decreased and then pretty much stopped. Some fever, vomiting and a trip to the surgeon. Surgeon thought Botox might be worn/wearing off but wanted him to recover from a head cold before we went ahead and did anything- maybe the cold was throwing […]

Botox, 4 weeks in.

So far, so good. His poop has really slowed down to 1-3x per day. He is not on anything to ‘help’ him go. Yesterday I did try ‘Natural Calm’ magnesium supplement and he wound up going a lot today. He is also becoming more interested in pushing the poopy out while his diaper is off!!! […]

Botox…6 days in

The first few days were pretty awful. Poop ever few minutes along w/ “POOPY OUCHY, POOPY HURTS” and a crying/screaming Joey Cooper. The wicked HD rash came back very quickly. We had him in the tub 3-5x per day and each time was accompanied by small poop, so out of tub, clean tub, clean toys, […]

Botox in!

Well he had the procedure done today. It was supposed to take 30 minutes and took closer to 1.25 hrs…all because he was so filled w/ stool Made me feel like a terrible Mommy. We did an irrigation less than 24 hrs ago, but 1x per day is just not enough and they are so […]