This website was build for my daughter Inge de Groot and other children like her.
Inge is a girl who was born on september 24th 2003
Inge has a small cerebellum and an underdeveloped pons. Inge is diagnosed with PCH-2.
What you’ll probably know is that Inge is not the only one with PCH-2 so on this site are other
stories as well.
If you have questions or want to give comments or if you have an interesting link to another website please email me
Marco de Groot
recently added
So now we have a total of 13 stories online
New PCH-2 fact
After visiting dr. PolThe in the hospital, we let them test Inge’s blood on the liver and kidney functioning. But we also had it tested on something else called CPK or Creatine Phosphokinase it’s an enzym. You’ll find this enzym in the skeletal muscles, the hartmuscle and the brains.
CPK’s standard value is about 200/240. The value in Inge’s blood was around 2400. This isn’t that bad because it’s her standard. However, when the value gets to high, it can cause permanent damage to the muscles. To high means values around 10.000. So 4x Inge’s value.
A raised value in CPK can occur with High fever. When the CPK norm is to high , you can see a change in the color of the urine. When it’s becoming so high that damage can occur, the color of the urine has turned into a cola colored substance. In this case it’s urgent that you contact the hospital and start giving fluid, read water. Lot’s of water. The children have to be admitted in the hospital and they’ll be given water through IV.
To avoid this you can start giving more water during fever periods, and more means, in Inge’s case, at least 0,5 liter or 16 ounces on her daily dose. This is because the blood needs to get rid of the overdose of CPK and with water you’ll clean the blood. When a child starts to vomit a lot, you can stop giving food, but you’ll have to replace it with enough water and ORS.
I put this article on the website, not to make anyone more concerned then we already are, but when you see symptoms you can act on them. In Inge’s life we have never seen this.
Test against vomit and restless uncontrolled movements a the end of the day
Because inge vomits a lot an has her very restless moments at the end of the day, we started thinking, During the day Inge doesn’t vomit a lot and she’s, most of the time anyway, a happy little girl, who, from time to time, coughs up mucus and swallows it at the same time. What we thought of was , that Inge swallows so much mucus during the daytime that at the end of the day she’ll get noxious and then extremely restless and followed by lot’s of vomit. This thought was confirmed by our doctor.
What we started to do is that we get the air out of her stomach on set times. This happens through the G-TUBE. We unplug her and let Inge push out the air herself. We have the medicine times when we deflate her stomach. When she gets restless during the day we do the same thing.
But that’s not all. We also started by really emptying her stomach at about 16:30 pm. This because,if she has swallowed lots of mucus we can pull it out before she starts to vomit. We replace it with water and at 17:00 pm we stop the feeding for about two hours. We give the left out dose 120 cc or 4 ouncheson top opher normal night dose.
We have done this for a week now and we think it helps a lot, so maybe if you experience the same problems this could work.
