Benecalorie and hGH

We have started adding a calorie supplement to Jac's night time bottle. It is a supplement called Benecalorie. It is a medical food and it has 330 calories in 1.5 oz - which is 7 cal per ml! Amazing! It is an oil supplement and it is hard to get it to mix with his milk, but I try! We started last week and I can't tell if it is helping him gain any weight yet.

We have decided that we are going to start Jac on hGH, which is Human Growth Hormone. There are lots of reasons that we need to do this for Jac all of which I don't want to explain right now, suffice it to say we have decided that it is best for him, and until he is old enough to decide he doesn't want it, we are going to give it to him. It is a daly injection, like an insulin shot, same kind of tiny, thin needle. We are waiting on the hGH until we get all of the approvals from the insurance company - hopefully we will get that in the next month.

Cyproheptadine

Dr. H prescribed Jac Cyproheptadine. It is an antihistamine that has the side effect of increasing appetite. For the first week he is supposed to take it just before dinner and then we slowly build up to twice a a day and increase the dosage.

Oh man does it increase appetite! It would be really bad if you were on a diet! It definitely increases his appetite after he takes it, and the effect seems to last - it seems like his appetite is improved, even the next day!

It has been pretty exciting to see him asking for food at times when he never would have asked for food before! Grow Jac grow!

Bonnie, our new Mother's Helper, taught Jac the word appetite, and so Jac calls it "tite" if you ask him if he has an "appetite."

Ear infection and diaper rash

Jac was sick with this cold that he and I caught in LA for weeks! Jac went to the doctor for this cold 5 times! A nasty cold like this one is tough for a little one!

He got an ear infection - which was really almost inevitable when he was congested for 2 solid weeks! Dr. B and I avoided giving him antibiotics for as long as we could but finally we had to do it. The antibiotics helped his ears and his congestion almost immediately but unfortunately they had a rather nasty, and common, side effect.

Within a couple of hours of starting the antibiotics his poop changed colors, from its normal formula baby green, to brown. Tummy flora, gone!

By the day after he started the antibiotics he had started to develop a very raw looking diaper area and by the day after that he was shaking when I cleaned his diaper area! Bad!

We called the nurses at Children's Hospital and took him to see the doctor. We started giving him daily baths (which he hates!) and rinsing his diaper area with water at each diaper change and within 48 hours his diaper area looked almost back to normal. Yeah! It was so hard to see his diaper area so raw, he was so unhappy! He is feeling much better now though and the ear infection seems to be gone also.

We are giving him probiotics to try to help his tummy get back to normal. I found a liquid, soy based one, at Whole Foods. Hopefully once he gets off of the antibiotics (tomorrow is his last day) the probiotics will help his little tummy recover its normal flora!

Zegerid: How to get Jac to take it

We are supposed to give Jac Zegerid three times a day (Prevacid is twice a day). This has become a bit of a problems as he does not want to take it. We have always given Jac his Prevacid in his milk (which is actually not the correct way to give it, but it is what they taught us to do in the hospital) and he has always taken it without a problem. The dosing for the Zegerid is 1 ml of Zegerid plus 1 ml of Mylanta, Cherry Flavor.

Today, Jac refused to take it. He cried and cried when I tried to give it to him, and cried and cried when I tried to give him regular milk even. Not a good thing. Yesterday he only took 430 ml of milk and today he only took 345 (whereas he had been averaging in the mid-500s for the last week and a half or so. D'oh!

So, this evening when he would not take the Zegerid we gave him the Prevacid instead, and he promptly took it, and then went to sleep!

I am going to ask on my newsgroups for some ideas about how to make the Zegerid more palatable.

Could Fluconazole be the problem?

Jac has been taking Fluconazole since last Friday for his thrush. Could the Fluconazole be the reason he is spitting up? I read that in adults it can cause throwing-up so who knows in a baby with reflux?

I have changed Jac's follow-up appointment for the thrush to this afternoon so hopefuly we will be able to stop the medications and see if things get better.

He has been spitting-up a ton. He spit up through his nose today - and this past Sunday. Prior to that we had had one through-the-nose spit-up in a month. He also been spitting up several times a day - not burp spit-ups. These are between meals and clearly not burp related.

Cross your fingers!

No thickening for us

After some reading on the internet I have decided not to thicken Jac's feeds. The evidence to support this as an effective way reduce his reflux are thin and the downsides are fairly high. There is a potential to cause problems with allergies later in life and also Type I diabetes if Jac is introduced to solids this early (he is only 3 months old adjusted.) See Kellymom for more information. This would also in all likelihood complicate our attempts to start breastfeeding.

I would prefer to avoid these complications and stick with breast milk and meds (which we would need to continue even if we started thickening his feeds.)

Reflux medications illuminated

We have now started Jac's new reflux medication - Axid. With all of the changes I have made to my diet it is hard to know if the medication is helping (he was feeling better before we started the Axid). One thing I saw yesterday was that he had many more poopie diapers. I must have changed 10 of them - rather than the usual 4 or 5. We shall see how things go today. He did not seem unhappy about that much pooping - he just needed his diaper changed more.

I also discovered something very interesting and in its own way disturbing. I found a website called Marci Kids - Midwest Acid Reflux Children's Institute. On their website they say that they have found that compounded Prevacid (which is what Jac gets) loses its effectiveness about a week after it is compounded. They also explain that Prevacid is not approved by the FDA to be compounded.

Well - his explains a lot. It seemed like the Prevacid starting working better each time Jac's dosage was upped - but he also generally got a new bottle each time his dosage increased! D'oh! I spoke with his pediatrician about this yesterday and she said she would review the information.

Marci-Kids states the following (link to original page):

"If you are currently giving your child a compounded suspension of a PPI such as Prevacid made by a pharmacy, you should know that there is a good potential for the medication to become inactive (and therefore ineffective) in a much shorter time period than your pharmacist may be aware. The loss of activity is related to the effect of the flavorings added by the pharmacies. The flavorings cause the PPI to become unstable and break down so it can no longer inhibit acid secretion. Laboratory testing has shown that the majority of such compounded, flavored preparations become inactive within a week.

In addition, many pharmacies do not add enough buffer in their suspensions to protect the drug from degradation by stomach acid. This is particularly a problem if the child is receiving a very low-volume dose—less than 3 mL, for example—because the amount of buffer likely won't be enough to protect the PPI from degradation by stomach acid.

For these reasons, we recommend the use of FDA-approved Zegerid® powder for oral suspension over the use of pharmacy-compounded suspensions, which are not FDA-approved. The Harriet Lane Handbook, a trusted source of pediatric dosing information for more than 50 years also states "The extemporaneously compounded oral suspension product may be less bioavailable owing to the loss of the enteric-coating."

His pediatrician indicated yesterday that she would not be willing to give Jac a medication that she is not familiar with - Zegerid. It seems like it may be necessary to change her mind about that or find a doctor that would be willing to prescribe it.

In the meantime we are going to give Jac single dose Prevacid dissolvable tablets which we will dissolve prior to each dosing along with Axid. If he seems to be doing well perhaps we will drop the Axid and go back to just Prevacid but use the single dose tablets instead of the compounded version.