As parents of children with RCDP you probably know they are a lot different than a "healthy" child. Therefore, we thought you could use some "Parent Tips" from parents of RCDP children. We hope these parent tips help you out.

Tip 1

I have a four month RCDP baby. He has a lot of troubles we are just sorting out. His main problem is his belly. We give him Mylican (gas drops) before every bottle and after every bottle. This seems to soothe the stomach cramps sometimes. He also has a heart defect that we aren't operating on. He takes Propanolol (beta blocker) to increase his oxygen level. This should help him be more comfortable and not so blue in color. He also has acid reflux. He takes Zantac twice a day for that and he has taken Reglan 4 times a day. I quit the Reglan because it was causing him to poop way too much. Now, pooping is another problem. He has about 10-12 dirty diapers a day. We are working on this problem. As a result of this, he gets severe diaper rash. It is to the extent of no skin on his booty it's so bad. I have just discovered a pure cornstarch baby powder by Johnson's. It is working wonders. You should give it a try. He also has a hernia that causes him a lot pain. We are going to a Urologist to try to solve this problem. I hope the "Mommy Tips" from me helps you out a little.

Mary Ellis (Ian's mom)

2/2/08

Ian is now 11 months old and has changed so much during the past few months. Ian is a very happy baby who smiles and giggles a lot. Ian has started physical therapy twice a week and is showing great improvement as a result. Ian still has not had his cataracts removed due to his heart condition. However, we anticipate the removal of his cataracts in the next two months. Ian enjoys playing in his tent I have created for him. It is full of toys he can reach and play with. It is covered with a white blanket so he can see the disco that shines in his tent. He loves to look at the different colors the disco light shows. Ian likes to play with things that have lots of different textures. For instance, I let him squeeze marshmallows, play with a bowl of cheerios, and even animal crackers. I like to change things up for Ian. Ian enjoys babbling all day long and is a joy to have around. He no longer has tummy issues or diaper rash problems. He now takes his Propranolol 3 times a day, Axid for reflux, and Atarax for irritability or as an antihistamine. Ian takes Miralax for constipation and is now regular. He is also on Allementum formula and I make all his baby food homemade. The combination of these two food changes has made a huge difference in his stomach cramps. The biggest news for Ian is that since my last update he has had his hernia repaired and is in no more pain with that. I hope some of this information helps you out.

Mary Ellis (Ian's mom)

9/19/08

Tip 2

Jake our 5 year old with RCDP Type 2 takes Lansoprazole for his reflux 2x a day (this is a compound medicine very similiar to Prevacid). Jake also has had seizures in the past (so now he has fallen into an epileptic category we are told ) so he takes an anti-seizure medicine 2x a day through his g-tube called Keppra that really helps him and does not alter his personality like other medications can do.

We have found drinking out of special bottles made by Dr. Brown really cuts down on their gas due to a special tube that is inserted in every bottle so they don't get a lot of air bubbles in their stomach. We also put Dark Karo syrup in the bottles which helps their bowels. ( That was an awesome tip from my pediatrician. And Mylicon gas drops when needed in them.

We also alternate putting Miralax in the tube feed bag at night or sprinkling in their food because Pediasure can really constipate the kids --but they need all the calories they can get--If worse comes to worse we can always use a Baby Lax this works wonders and is made by Fleets and found at the pharmacy.

Jordyn who is 2 who also has RCDP Type 2 takes Lansopazole 1 x a day by her g-tube, Reglan 4 x a day by her g-tube (this helps to empty her stomach faster so she can handle more in take of bottles and food.) We also use Miralax for her and the Karo Syrup and add Ducal to her food for more calories also. She also uses the special Dr. Brown bottles like her big brother.

Jordyn has very sensitive skin so we have to wash all our clothes, their clothes and sheets in Baby Detergent we use Purex made for Babies it is easy on the skin. We used to use Dreft but that got so expensive and the Purex works so much better--we also have to watch the perfumes and lotions people use around them-- Jordyn uses Pro-Topic that her dermatologist prescribed and it works for the redness (like rash ) she gets on her face. Jake has finally outgrown this --it only happens to him every so often. Hopefully in time Jordyn will not be so sensitive either.

We have just started to give Jordyn Mylanta to settle her tummy--per the pediatrician and also sometimes are starting to give both kids Melatonin it helps them get a good night sleep and that is exactly what it says on the bottle-(you find it by the Vitamins) I was a little nervous at first but 2 Pediatricians assured me they tell alot of parents about it--and it is working wonders the kids sleep better and are waking up more restful and happy.

I hope some of this info helps you or someone else you know.

Jeff and Mindy Cirner (Jake and Jordyn's parents)

2/2/08