Doodle Poo

Now that we got to experience a week of almost no seizures, it Pisses me off that they're back. It used to make me sad, confused, anxious and helpless when he would have the seizures. But now that I've experienced the Doodle seizure free, even though it was only a week, and now that they are back, now I'm freaking Pissed. What is so frustrating is that I have no idea why they're back. Or should I say, why they decided to leave for just that one week? What was the trigger? What did we do differently last Friday to bring them back. Was it something he ate? Was it the heat? Did his body get used to the medicine already? Was he getting sick? Was it a full moon?

Then I thought I cracked the case!!!

Not to get completely disgusting and graphic on here but I noticed something very interesting yesterday. I was changing a Doodle Poo and it was very soft...the glycerin suppository they gave him in the hospital on Saturday finally did the trick.

Well, are you on the edge of your seats right now?

So I change his pants and in the Doodle Poo are hundreds of white sprinkles. His Depakote medication comes in sprinkle capsules--filled with tiny white granules. The tiny little beads of medicine were not dissolved which means that his body had not absorbed the medicine. I only noticed because of the soft poo. He's been so constipated over the last couple of weeks that I haven't noticed whether or not the little Depakote granules were in there...there has to be a connection somehow about this and the seizures coming back so strongly.

Nope.

I talked to the very nice UCSF Doctor and he said he's probably still getting the medicine, just not all of it and that the poo thing probably had nothing to do with the bombardment of seizures. I'm not sure how if I'm looking at them the same way they went in...then the Nurse Practitioner told me if he has any kind of immediate poo or diarrhea after eating or taking the medicine, it is not getting absorbed.

Hmmmmmmmmmmmmm. We have a Doodle Poo mystery on our hands.

You can tell the Doodle is feeling better today because he is back to doing raspberries. He's done a few today, not the usual 872 per day we've been used to getting, but it's a good start. He's more alert and his eyes are better focussed. He didn't have a grand mal today but had around 10 of the head drop type of seizures so he's still a little wobbly. The carts have been hidden from him so as to not torture him by wanting them. He's pretty bored and wants to run around. He escaped out of the carpeted room a couple of times today and boy can he run fast. Now when he runs away from me he thinks it's really funny.

We're really loving the Doodle's new nurse. Jimmy has a little bit of a crush on her. She takes really good care of the Doodle and he's genuinely excited to see her every morning. She's going on vacation for 3 weeks so we will have 3 different nurses coming in to take her shifts. Ugh. It's hard having strangers in your house and trusting them with your most precious things, like your children. It takes me time to warm up to new people and feel comfortable with them. It's a lot of energy of which I'm not in abundance of lately.

In Home Nursing Care

The nice Nurse couldn’t have picked a better day to come out and evaluate the Doodle and do her intake process for in-home care. He was in rare form and screamed most of the interview which could have been due to the abundance of seizure activity today. Perfect. Because of his seizure disorder, it is suggested we have a nurse instead of a regular babysitter/day care person. Except I fear for the poor nurse who gets assigned to us. She is going to have her hands full chasing him around between his autism, epilepsy, ocd, adhd, bad terrible two's behavior and unconventional sleep issues.

Here’s a list of requirements when watching the Doodle. Let’s review:

1. Whether you like it or not, the Doodle calls the shots. We’ve tried other methods but have given up. He's beaten us down. This is just the way it is unless you enjoy the loudest most annoying screaming you have ever heard followed by a grand mal seizure;

2. The Doodle is an escape artist and fresh air is not allowed in the house. Open doors are kept to a minimum;

3. You must have good dexterity and have mastered your fine motor skills because you will need to be especially careful when putting the Doodle's helmet on and not catch his neck in the buckle;

4. You must be on high red alert at all times because you never know when a seizure will occur; especially with him having 10-40 per day. There will be no relaxing allowed;

5. You musn’t be shy. If you need to use the bathroom, be prepared to bring the Doodle in there with you. Leave your dignity at the door;

6. You must pay attention to the Doodle at all times, that means no phone calls, no reading, no projects can be done in the presence of the Doodle, and don't even think about scrapbooking. He requires your full attention and will just as soon rip the glasses off your face and grab your chin if you are not focused on him;

7. Are you desperately seeking a challenge similar to participating in an episode of Survivor minus traveling to an exotic place? Naptime and bedtime are especially fun around here because the Doodle is too big for a crib and can easily climb out of a bed so you must sit and hold him while waiting sometimes up to 2 or 3 hours for him to thrash around and exhaust himself and finally fall asleep;

8. Did I mention he has insomnia?

9. I can tell you right now the Doodle will not like your singing so do not try to sing to him or he will most certainly cover his ears and give you a complex unless it's just MY singing he does not like;

10. Since he is still not talking, you must be really good at either mind reading or understanding grunts, shrieks, squeals and some limited sign language. A lot of figuring out what he wants and needs is done through the old fashion process of elimination;

11. You must not be afraid of the dark because if you go into the pantry to get something there is a pretty good chance he will turn the light off and shut the door;

12. How about the huge amounts of anti-seizure medicines ramp him up to a point of craziness only seen in Warner Brothers cartoons? You must never turn your back on the Doodle because he is very impulsive and enjoys climbing and standing up on the middle of the dining room table;

13. I hope you have good joints and are not arthritic because the Doodle will insist that you must join him on the floor several times a day when directed by his patting of said floor;

14. The Doodle has full control over the remote. Grown up shows are kept to a minimum so do not get comfortable on the couch. You must enjoy watching back to back episodes of Dora, Diego, the Backyardigans and the Wonder Pets;

15. You must enjoy being felt up and having a hand in your shirt when holding him;

16. The Doodle has the attention span of a gnat? So, simple things like reading or doing a puzzle together are extremely challenging unless you can do them in 22 second increments;

17. Being the little OCD gentleman the Doodle is, he will insist on opening and closing and opening and closing and opening and closing the doors for you;

18. If it is in his reach it will most definitely be thrown onto the floor; therefore all breakables and spillables must be kept out of the Doodle’s reach;

19. Overalls are a staple in the Doodle's wardrobe because he can now take off his pants. Some chasing will be most likely required because he is very fast and can probably out-shuffle your run and for some reason he can run faster naked;

20. Doodle Bug will require giant amounts of affection--hugging and comforting all day long so I hope you come from a huggy family.

In a nut shell we’re basically looking for a cheerful mind reading Mary Poppins to get us through our day. Good times for sure and no dipping into his meds no matter how tempting that might seem. Only the patient need apply.

I’m not sure how to take the Nurse's closing statement to me when she was leaving where she said,

“Sometimes it takes a few people to get this right when personalities and such don’t mesh. So, we might try out several people before we find the right match.”

Hmmmmm. Wonder what she meant by that?

You mean, you don’t have anyone on your staff who has experience or any patience with out of control autistic children and, therefore, I will be having words with them and escorting them off my property? Or did she mean, listen lady, no trained professional nurse is going to want to chase this little brat around all day. So to put it nicely, we will be scraping the bottom of the barrel and sending you nurses with equally as annoying autistic traits, minor criminal records and severe social defects.