Heath's Journey 12/10/11

mujul79's picture

Where to start today marks the year of finding out that Heath has Chiari Malformation.

I thought I had a lot to update with my last blog on Oct 6th. Little did I know that that day I would go to pick Heath up from school early because he had a seziure at school!!! We went right to the ER where the watched him and told us we should stay over night and have a 20 min EEG done the next day. When admited on the floor he said "yea puzzles" LOL, we have been to often that he knows the playroom is down the hall. He did awesome for the EEG, almost to good as they could not get him to breath fast on it and the flashing lighs put him to sleep. We went home that night and told to keep our Appt that was already comming up with Nero on the 12th.

Oct 11th- Peter had an eye exam because of the blurrness and he no problem with his vision. But since we are stilling having issues with him saying that it is blurry or he sees spots, and his eyes are moving when he dose it so at our next Nero visit we are going to be asking about Nystagmus.

Oct 12th- We went to the nero and found out that Heath's 20 min EEG was "normal" as in showing no epilepsy but because of his Hx and the exam (he was having pore tone that day) He set us up for a 3 day EEG, with the hope of catching an event.
Peter was also seeing him for the leg pain, "spiders and aunts biting". He set up a MRI to rule out Chiari. I am a bit upset that he refused to do a full Spine MRI to look for TC as well.

Oct 14th- Heath had a visit with the Plulomonlogist and after hearing that the Nero did not feel now was the time to do the decompresion she wanted to help with the apnea and offred us a CPAP with the plan that if that dose not work we can talk about a Trah. It seems like a good plan and I am happy someone is trying to help. We also left with a new set of meds to try.

Meds: Lortadine Allergy (stopping the cetirizine)
Advire (and stoping the Flovent)
Singular chewable (stopping the granules)

Nov 8th- Heath's videosophgram showed that he is taking fluid and food down to the vocial cords and is a asperation risk. We are talking with the school now about adding to his ST to help him work with eating. I have not talked to the Nero or ENT about what they think of the results yet. I only have the video copy and writen report that was sent to our house.

Nov 14th- Pedi visit she added

Meds: Nasacort (nose spray to help with the snot)
Acidophilus (to help his diappers)
Multi-vitamin drops
And a kit for us to take stool samples of Heaths. (results came back normal, no clue why the runs)
Dx with toddler diareha

Nov 17th- Heath's EEG, we endded up staying until Sunday and while they saw no events his brain waves are slow for his age. We are so thanful for all of the family support we had durring our stay both at the hospital and with child care for the others. Yes he has global delays and the brain waves conferm it. I hope that our next Nero visit he can also help me understand this. After seeing a few more events at home I am wondering if it is not seziures but nystagmus with stumbling/stairing with him as well. But that dose not explain him being non responsive during an event or the turning blue, as well so it is still a big ? They did offer us meds for seziures when we left because the slow waves could be a sign that he is having seziures deep in the brain that the EEG is not picking up. But at this time with the sidefecs I did not want to give him meds that may not help. I am going to talk to his pedi more about this at his next visit.

Nov 30th- Peter's sleep results came back that yes he is having central events and he sent us back to the pedi for a follow up.

Dec 7th- Heath had his 3 set of AFO's made. He picked out flags to go on them.

Dec 10th- His CPAP came. He did not want much to do with it when the RT was at the house but he did put it on to show Bill at night and he kept it on for 2 hours as long as it was turned off.

Ater keeping a food journal we have stopped all corn products and Heath's runs have improved.

Dates ahead:
Dec 14th Peter starts lego club at school
Dec 15th Peter and Tessa school conference
Dec 20th Heath's next booth hearing test
Dec 21st Heath's AFO pick up
(then we go to KY for x-mas)
Dec 30th Peter MRI
Jan 3rd Heath's eye exam
Jan 5th Peter Nero
Jan 6th Heath's CT of his ears
Jan 13th we go back to see the pulmonologis about how the CPAP is working.
Jan 17th Heath goes to the genetics to talk about EDS
Feb 6th Simon and Heath go to the Pedi.