Periactin effects? CF carrier? FTT? Trifecta of annoyance

[CassnBeth]

In the last month my DD went from "not gaining/growing well" to "actual weight loss" and her GI doc wants to try her on periactin. Does anyone here have any experience of what kids are like on that medication? And does it matter if your kid is one of the bounce-off-the-walls-crack-fiend kids when on benadryl?

I guess I'm also concerned about using the periactin and having it work but be covering up the real problem or having it mess up her body's signals. DD is a carrier for cystic fibrosis and I have a lingering fear that her issues are more about something to do with her pancreatic enzymes than her eating (her GI guy has his own lingering fear that I just don't feed my daughter enough and this would all be better if I just gave her cow's milk).

I am just very discouraged today.

[kittynurse]

Dashing off to karate with the kids but wanted to mention that Periactin is an antihistamine (just in case you didn't know) so the Benedryl thing might be something to consider and discuss with your doctor.

Martha

[mommy2maya]

If she is just a carrier, it won't affect her as it would if she had cf.

[sncmom]

We've had great success with periactin. My 28-month-old with CP has gained 3 pounds in the last 3 months, and is finally on the growth charts for weight. We only give her 1 dose/day (1.5 mg) before bed. It was originally prescribed as a twice a day med, but she was way too sedated when she took it in the am. The antihistamine issue is valid. If you decide to try it, perhaps give a small dose in am to see if there is an effect.
I agree with a PP that being a CF carrier shouldn't matter, its a recessive gene and only tends to matter if someone has two of them.
Good luck!

[2boyzmama]

Originally Posted by mommy2maya

If she is just a carrier, it won't affect her as it would if she had cf.

Not always true.

My younger sister is a CF carrier and yet shows clinical symptoms. There's a lot about CF that isn't known fully, and it's beginning to be thought of as a spectrum type disease in some cases. I even read something about adult-onset CF-like symptoms recently.

Anyway...about the Periactin...it was offered for my chronic FTT son and I declined it for several reasons. One of which was a family history of paradoxical reactions to Benadryl. Also my worry that it would just mask symptoms. And also my son has a known chromosome defect, so I worried what effect it would have on his other body systems. The geneticist couldn't give me info on successful use in his syndrome. So we chose not to use it.

I assume you've worked closely with a nutritionist? I had to do several diet logs to "prove" that it wasn't a caloric intake issue because they also thought that dairy would fix it

[2boyzmama]

Oh, and my CF-carrier sister is now 19 years old, 5'6" and about 90lbs. She has never had any extra meat on her bones, never. It took her 3.5 years to triple her birth weight. She is still sickly with lots of respiratory illnesses, and she's also very food-reactive (lactose is a biggie, but any change in diet will mess her up for a few days)

We've since had a diagnosis of Celiac in the family, and are now wondering if perhaps she has Celiac? Has your dd been tested for that? The blood test is very inaccurate, so it might be worth considering a biopsy, or at least a gluten-free trial. (note though that if you do a trial of gluten-free and it helps, your dd will have to go back on gluten in order to have a biopsy done for final confirmation. That happened with my older son, we did the diet on our own, then went to the dr for confirmation and found out he had to be back on gluten. So now we can't confirm the diagnosis. Either way he will stay on the gluten free diet, so I guess it doesn't matter)

[2xy]

DS1 was on Periactin for a few months about ten years ago. Long story.

But anyway, just be aware (I was not aware) that it causes major photosensitivity. We went to the beach and my kid got a blistery sunburn even though we were using #50 sunblock. And I'm super vigilant about sunburns, because I burn wicked easy and DS has my complexion.

(yes, I know a lot of mamas here are anti-sunblock, fwiw)

[SpottedFoxx]

I suffer from an allergic type disease and after taking pretty much every antihistamine on the market (and some not even available in the US yet), I can tell you that just because she reacts to benedryl doesn't mean she'll react to all antihistamines the same.

I am allergic to benedryl and ketotofin (not available in the US) and zyrtec. However, I can take claratan and zantac.

Periactin appears to be an H1 inhibitor so it's in the same family of bendryl (unlike Zantac which is an H2 inhibitor). However, all H1 inhibitors are NOT the same.

What can it hurt to try one dose? Do it in the a.m. so that if she's bouncing off walls, it won't interfer with her sleep.

Good luck!

[CassnBeth]

Your sister is a carrier? Can I ask what her issues have been like? And what the heck kind of doctor she has seen who has been any use? I lurked around on a few CF message boards and that's where I found out that being a carrier can be a symptomatic thing but I can't imagine it would do any good to take DD to one of the big CF clinics.

And celiac is the next best thing on the table for DD. Her blood test came back negative which means absolutely nothing and she has quite a few celiac symptoms. I am pretty reluctant to do a biopsy on my teeny kid; is there really nothing else conclusive?

[2boyzmama]

Originally Posted by CassnBeth

Your sister is a carrier? Can I ask what her issues have been like? And what the heck kind of doctor she has seen who has been any use? I lurked around on a few CF message boards and that's where I found out that being a carrier can be a symptomatic thing but I can't imagine it would do any good to take DD to one of the big CF clinics.

And celiac is the next best thing on the table for DD. Her blood test came back negative which means absolutely nothing and she has quite a few celiac symptoms. I am pretty reluctant to do a biopsy on my teeny kid; is there really nothing else conclusive?

There's a Pulmonologist here at Dayton Childrens that I've talked to about my sister, and he says that he's seen it a few times before. His personal opinion is that there is probably something else underlying (Celiac, for example) but that often treating the child as if they have CF is helpful to the child. So he diagnoses them with Reactive Airway Disease with a Pancreatic deficiency or something like that but basically manages them similarly. My mom did not have any luck getting drs to manage my sister well, they thought she just needed to eat more.

Her issues are repeated respiratory illnesses, asthma-like symptoms, digestive issues (mucousy stool as a child, lactose allergy, easily triggered gastric responses to food), and very low weight.

For the Celiac...there is a stool test that is still kind of experiemental, you won't get insurance to cover it, I forget what it's called. Ask in Health and Healing about it. There's also a cheek swab test that can be done to test for genetic markers. But the only "accepted" test is the biopsy.

[SiobhanAoife]

If your child's CFTR function (which is partially impaired in CF carriers, though in theory not enough to cause symptoms the vast majority of the time) is causing pancreatic insufficiency (which can be a partial thing, it's not black and white, your child could have moderately low pancreatic functioning, for example) then you can determine this via a simple test for fecal elastase.

It just requires a fresh stool sample. They measure the amount of elastase, a digestive enzyme, in the poop. This lets them see whether the pancreas is delivering a sufficient amount of digestive enzymes. If this value is low, then your child is not able to digest all the food value of the food consumed and so taking supplemental enzymes would help.

The test is neither invasive nor expensive; I would ask the doctor to order it.

[camracrazy]

My daughter has CF. She took periactin for a short time. It made her horribly emotional and she didn't gain much weight while on it, so we stopped.

You say she is a carrier, did they only find one mutation on the genetic test? There are about 1,500 known mutations, and more being discovered. The basic genetic test only covers the most common mutations, so it's possible that a person will have a mutation that isn't commonly tested for so it looks like they only have one mutation.

I myself was recently diagnosed with "atypical CF" after a lifetime of asthma problems, repeated bouts with bronchitis, pneumonia, aspergillis (in my lungs), and pseudomonas in my sinuses. I don't have the typical digestion issues of CF, though. All of my kid's have had genetic tests but I haven't because my insurance won't pay for it.

Does your dd excrete a lot of salt in her sweat? That's how I knew our dd had it even before the tests came back. She tasted like a salt lick! Sometimes if she sweats really badly you can see salt crystals form on her skin.

As for the enzymes, my dd did well on Pancrecarb. They took it off the market since it didn't get approved by the FDA and now she is on Creon. She had Creon once before when she was a baby and it didn't do a thing for her. We will see if she has gained weight on it at her next appointment. If not we may try Zen-pep. Also, how do you dose the enzymes? They really only work at their "peak" for about 20 minutes (so I've read and been told). If your dd is a slow eater it may help to break up the dose. My dd takes 4 with meals and we usually give her 2 at the start of the meal and 2 halfway through so the effect lasts a little longer. Most enzymes work better if the patient is also on a reflux med (Nexium, Zantac, etc) because too much stomach acid can cause the enzymes to be dissolved before they reach where they need to go to help with digestion.

[monocyte]

Hugs, I totally know how you are feeling.

My youngest has been on it for over a year, and is FINALLY on the "charts". He's bitty, has tons of GI issues (many, many intolerances) and the periactin has absolutely helped manage that as well by calming his GI tract down (we thought he had eosin esoph for a while). His IgA was too low to rule out celiac, so we ended up scoping him to rule it out. He also has some hard core SPD issues (proprioception) that also play into it...and...we just had his adenoids taken out for constant infections/snoring.

We dont see many side effects except that he sleep so much better while on it. He can be a bit edgy, but, he eats when he's on it. Even asks to nurse

Feel free to pm me if you want to chat more...if I was to do it over, I probably wouldn't have waited so long.