Friday, October 24, 2008

Update on Drew

Hey everyone! Here are the notes we got from Dr Kelfer, Andrew's Neurologist, thank you all again for keeping us in your prayers! We have a mighty God and He loves our little guy more than we could even imagine!

1. What is Andrew's diagnosis? Cerebral Palsy (aka CP) and Epilepsy from the stroke which is the main diagnoses along with brain damage and seizures. The types of seizures are partial complex seizures, which means it happens on only the right side
2. Does Andrew have hemiplegia CP? Yes right sided
3. Are his seizures epileptic or non-epileptic? epileptic
4. Are they Petit mal? no
5. How necessary is it to treat the seizure's with Medication? Can this be treated without medication? What happens if you don't treat it with medication? Very important it would not be good stop it. Seizures beget more seizures
6. Can you tell is there any sensory loss on his rt. side? he didn't know this we will tell with time
7. When will one be able to tell if there are any profound disabilities? after year and if he has not reached any verbal milestones(mama, Dada) and pincher/ grasping skills, and if not he will need speech therapy. Also there was some concern if these do not happen there could be some mental delays/disabilities
8. Will he be able to walk? need extensive, lifelong care?????? cant tell yet
9. Do you think he needs orthotic device for hand/or foot area? that is up to PT and OT, recommended s to see Dr Marks who is a spasisity Dr, helps with tone
10. Exactly what area of the brain is this damage? what lobe??? temporal, parietal? almost the whole left side not so much any particular lobe
11.What are the side effects of his medication? new med has less than phenobarb, low sodium and increase in appetite
12. How long will he be on it? How will we know when to discontinue it? a year and after they test him to see if he is still having seizures
13. Does it effect liver functions or blood count?no
14. How do you feel about cranial sacral adjustments?similar to chiropractic it will not make a huge difference and did not cause the seizures but could make him feel better
15. Can you recommend another pediatrician that actually works with brain damage/special needs children. Someone that is aware of the developmental delays. Someone trained to identify any weaknesses or potential problem? no the one we have is fine
16. How do you feel about water therapy for Andrew? Do you think this would help his RT side? Would you write a RX for it? yes it would be helpful if we can find it
17. Is Andrew drooling because of motor problems? how long will this last? will it get better? there is medicine if it does not get better that he can take, but it could make him constipated
18. He appears to get startled a lot- loud noises bothering him....explain that. just a symptom of the brain damage
19 How do you tell if he has any visual problems? no (we actually went today to have his eyes check and they were good)

Seizures are very unpredictable. if they do continue there our other meds he can try and they will need to bring him in for an overnight evaluation.


Stephanie Rohloff said...

Mandy, I am so sorry to hear this news. Andrew will be in our prayers...please let me know anytime if you need anything at all!
We love y'all!

Erin said...

Mandy, I am so glad you found my blog. I just emailed you too. It sounds like Drew and Sean are very much alike. I look forward to talking with you more.

North Dakota Ward's said...

Hi Mandy! I am glad you found my blog too. It is so nice to meet others that are in similar situations. Keep us posted, I will keep visiting you!!! And one day read through all of it. :)

Amanda said...

Mandy, I like, Erin and Suzanne, am glad you found my blog! It's so important to have someone who knows "exactly" what you are going through. Be in touch, whenever you need too! I'll keep checking on your cutie too!


Morningstar College and Young Adults said...

Love you guys so much! Drew is precious and we can't wait to meet him! I'm sorry he has had so many trials already...and yet our King Jesus is watching over him.

We praise God you guys are Drew's mommy and daddy! What a gift you guys are!

Love you!
Chris and Sara

Mel Fraase said...

Hi, Mandy,
glad you found us. I thought I had responded earlier, so sorry you haven't heard from us! I hope all is goind well with Andrew. Check out and if you have not, they are good resources. Piper is a right hemi, she walks and talks fairly well. We are just wrapping up a round of constraint induced therapy which Andrew might benefit from later. Please feel free to contact me if you have questions or just want to chat :)