Great Appointment!

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A had her first follow-up since diagnosis today, and other than the extremely long wait things went great. First, the GI reviewed her labs and all was well other than some vitamin levels (can't remember which ones). He recommended we add a daily children's vitamin so I'll pick some up this week. Unfortunately, the lab lost her TPMT test and it never made it to California so we had to have that redone downstairs after her appointment. Not a huge deal, but annoying. We won't be using the local clinic for labs anymore.

GI was extremely happy with her weight gain (almost 6 lbs.!!) and commented several times about how "healthy" she looked. He did say that he felt some of that was water weight, but he didn't feel she needed the Periactin anymore. Hopefully she'll maintain the weight on her own.

We will be adding 6mp as soon as the TPMT test comes back. I'm at peace with this decision because I am ecstatic with how well A is doing right now. We'll discuss weaning from the Prednisone after she's been on the 6mp for 2 months. She'll be staying on the Pentasa and also adding Prilosec (while on the Prednisone). So a few changes, but hopefully this combo will keep her feeling good.

He also checked her bottom because she has been having a little pain with BMs. He said it was very red and that I should keep an eye on it. Anyone have any recommendations for sore/red bottoms? Maybe wet wipes instead of TP?
 
So glad to hear about the good GI visit.
YES, YES, YES, use wet wipes. Make sure it's the flushable kind.
 
Most definitely on the wet wipes.
Glad appt went well. Yahoo for weight gain! Hope she keeps going in the right direction for a very long time (like forever)
 
As far as red bums
Calmoseptine cream works wonders
Found at Walgreens adult diaper section
Also bactroban for when the skin breaks down
Or bleeds ( your ped would need to prescribe it)

Warm tubs baths to soak the area helps
Keep cottenelle flush able wipes in every bathroom

http://www.amazon.com/gp/aw/d/B002CNPPXK/ref=redir_mdp_mobile
Plus they come in singles she can keep in her purse/ pocket when she is out and about
 
As an Amazon Associate we earn from qualifying purchases.
Woohoo!! That's good news! There's nothing like feeling at peace with a decision we make as parents.
 
Thank you all for the suggestions! I did go buy some Cottenelle flushable wipes tonight and I'll make sure to bring some along when we go on vacation. We've used the Tucks pads in the past and they didn't seem to bring her any relief but they are worth trying again (she wasn't actually red last time so I'm not sure what her issue was).
 
A had her first follow-up since diagnosis today, and other than the extremely long wait things went great. First, the GI reviewed her labs and all was well other than some vitamin levels (can't remember which ones). He recommended we add a daily children's vitamin so I'll pick some up this week. Unfortunately, the lab lost her TPMT test and it never made it to California so we had to have that redone downstairs after her appointment. Not a huge deal, but annoying. We won't be using the local clinic for labs anymore.

GI was extremely happy with her weight gain (almost 6 lbs.!!) and commented several times about how "healthy" she looked. He did say that he felt some of that was water weight, but he didn't feel she needed the Periactin anymore. Hopefully she'll maintain the weight on her own.

We will be adding 6mp as soon as the TPMT test comes back. I'm at peace with this decision because I am ecstatic with how well A is doing right now. We'll discuss weaning from the Prednisone after she's been on the 6mp for 2 months. She'll be staying on the Pentasa and also adding Prilosec (while on the Prednisone). So a few changes, but hopefully this combo will keep her feeling good.

He also checked her bottom because she has been having a little pain with BMs. He said it was very red and that I should keep an eye on it. Anyone have any recommendations for sore/red bottoms? Maybe wet wipes instead of TP?

yes, use baby wipes(Unscented)or cottonelle flushable. Make sure you gently dry the area and apply either desitin diaper rash cream or one containing 1% zinc oxide first ingredient. I have to use it all the time due to too much bile acid. Calmoseptine is also supposed to help but I never tried it yet.
 
Thank you all for the suggestions! I did go buy some Cottenelle flushable wipes tonight and I'll make sure to bring some along when we go on vacation. We've used the Tucks pads in the past and they didn't seem to bring her any relief but they are worth trying again (she wasn't actually red last time so I'm not sure what her issue was).

The red comes from too much acid in her BM.
 
Thanks for the fab update DanceMom! :):):)

Have to second the Cottonelle flushable wipes and Calmoseptine!

Onwards and Upwards!

Dusty. xxx
 
Glad to hear the appt went so well! I like to keep a container of 'sensitive' baby wipes in each bathroom (just don't flush 'em!). My son has CD in the jejunum (mid section) of his sm intestine, and has an anal fissure due to constipation. BMs give him a sore bum-whether it be from constipation, meds, etc., I'm not sure. The wipes and zinc oxide cream work quite well at keeping redness and pain at bay though.
 
Glad to hear your appt went well. Sounds like your GI is on the ball. Watch your daughter's weight closely when she comes off the periactin (weekly weight checks). Did she have side effects on it?
 
She likes to weigh herself every morning, lol. Sunday morning was her last Periactin dose and no weight loss yet. Time will tell. She didn't have any side effects from the Periactin so I wouldn't mind her going on it again if need be.
 
I hope 6mp does wonders for her. Have you noticed a big boost in her appetite since starting pred? Does she have any other pred "symptoms" ie chipmunk cheeks, extra energy (like bouncing off the walls and driving you crazy energy:))?
 
She's always had a great appetite, even before the Periactin and Prednisone. When she first started the Prednisone she had terrible mood swings....bouncing off the walls most of the time, but also crying and angry occasionally (for no reason). She also had trouble sleeping those first few nights. Now that she's been on it for over a month her moods have leveled out and she is a happy "normal" kid. Her cheeks are chubby, but oh so cute. She really looks great. And her EN is gone! Prednisone has worked wonders for A so I don't mind her staying on it a few more months.
 
Be prepared chubby cheeks from a month
Go to a extremely round face/neck torso hands
The puffiness spreads :(
 
Did you get the TPMT results back yet? Did I miss that post?

We had the test drawn at our local clinic about 2 weeks ago but it never made it to California. When the girl seemed confused and had to call someone to find out what the test was that should have been my clue to get the heck out of there and just make the hour drive to have it done at the Children's Hospital. So, after our GI appointment (at the hospital) we went downstairs to the lab and had it drawn again. We should have the results in 7-14 days. Hopefully the timing will be just right and we can start before our second vacation (there is a 4 day window, lol).
 
FWIW Jack was off periactin for a month before I noticed a huge downswing in his appetite I just added it back in earlier this week and he has gone from eating nothing - like 1/2 a corndog a day to apparently 8 within about 2 hours (he was at grandma's house and generally eats more healthy then corndogs at home, but since he was eating I'm not complaining)
Hope you get the lab results quickly and get to enjoy your vacation
 
TPMT results came back and GI called to explain things. Said she will take a half pill at night, so 25 mg. I asked if we could wait to start after our next vacation and he said that was fine. Don't want to risk any new side effects while away from home and at her National competition. Said he wants labs at 2-4-6 weeks then monthly after that.
 
No. We have Showbiz Nationals in Daytona and then Hall of Fame Nationals in Orlando. If anyone watched Dance Moms Miami, A is competing against that studio while in Orlando. Should be fun!
 
Dancemom...so happy for you guys. Great news! Wishing you onwards and upwards from here on!! :) And good luck at the competitions


Saw up in the thread some talk about periactin and I have a question
I read somewhere that periactin blocks seritonin...so i'm hesitant to give it to my son. I wish I could find again where I saw that...probably not a reputable site....but its in my head now!!
 
Ok...I found it at: http://www.webmd.com/drugs/drug-6976-periactin+oral.aspx


"Cyproheptadine is an antihistamine used to relieve allergy symptoms such as watery eyes, runny nose, itching eyes/nose, sneezing, hives, and itching. It works by blocking a certain natural substance (histamine) that your body makes during an allergic reaction. This medication also blocks another natural substance in your body (serotonin)."

Isn't seritonin the thing in your brain that makes a person happy? I need one of you smarter people to come along and explain it to me.! :) Maybe our GI prescribes it in a low dose...that's probably it. Ours wants Brian to take it for weight gain. Now I'm holding back.
 
A did take Periactin and it did work very well for her with no side effects. She only took 5 mg twice a day, which is a low dose according to our GI. The pharmacist warned us it may make her sleepy but it did not.
 
DS took periactin for a month
Same low dose - for abdominal pain - not weight gain
It did nothing at all on either front
It is a simple med that will work if all other areas are taken care of
If not then no weight gain
 
DS took periactin for a month
Same low dose - for abdominal pain - not weight gain
It did nothing at all on either front
It is a simple med that will work if all other areas are taken care of
If not then no weight gain

That's not true for every child. A gained weight on Periactin before even starting the Pentasa and Prednisone.
 

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