EEG & Kirghizistan

Yesterday we had another EEG. Our last 2 EEGs (10 days ago& a month) showed hypsarrhythmic which is a symptom of Infantile Spasms. We started the ACTH a month ago to treat this irregularity. His EEG yesterday showed that he no longer has hypsarrhythic EEG. The ACTH worked. Now the question is, when we discontinue the ACTH (it will take a month to wean him off) if his EEG will change.

His EEG still showed that seizures are present. We increased his Tegatrol and we are planning on still going to Children's Miami because as the doctor put it, "Matt's a tough case". We have no idea if we'll do surgery or if they'll just give us a second...well, third opinion.

April 20 Chris is being deployed for 120 days to Kirghizistan. Depending on where we are for Matthew's treatment w/ Miami, Matt and I will plan on going to Arizona (and stay in our house that never sold). Chris's brother is planning on moving to Arizona, this was announced last week. Now that Chris is leaving, all the more reason to go. I will have friends, family, support, an actual Air Force Base (not Navy like here) and access to Children's Hospital Phoenix. Our friend is renting our house and will be able to help me as well.

March 2009

We have been on the two injection for a week now. Although I have seen some improvements, we still see some seizures. He is pretty moody, which is a big side effect. He is sleeping pretty well at night, it takes him until about 11 PM to fall asleep, but he is sleeping though the night mostly.

He has had an increase in appetite and elevated blood pressure. I take him to the Naval Hospital to his pediatrician's office to have his BP checked. Last Tuesday it was 134/75. The RN told me normal BP for a little guy is 100/60. I went the next day and his BP was normal. We'll continue to keep an eye on it and continue to get it checked.

Matthew's moods pretty much consist of whining. If I hold him, he does better. However, it's really hard to hold and cuddle a 30 pound little guy all day long. But, we do what we can.

We have our next EEG next week and we'll try to figure out the next step in our game plan while we wait for Children's Miami to contact us regarding the referral.

Matthew continues to work on his development. He can hold his head up for short times when we help him sit up. This is a HUGE step forward for us.

EEG Update

Although we spend 4 hours at the Neuro's office yesterday, we did finally get our EEG. It was also "Botox" day at the clinic. While waiting for hours, I saw many handicaped kids waiting for their botox. For kids with tightened fists, feet, arms, etc, botox can help by relaxing the muscles.

Anyway, our EEG went well. I am not suposed to let Matt nap before EEG, so he will sleep. I can't feed him for four hours prior to EEG, either. It can be a challenge. He's not a big eater, so meals aren't a big deal, but put a kid in the car that hasn't napped....they will fall asleep.

We met with the Nurse Practioner after his appointment. She was shocked to see all of the medications a 13 month old is on. Keppra-3x day, Klonapin 2x day, Tegatrol 2x day, Topamax 2x day & ACTH injecion. We are still coming off the Keppra. We were almost off the the Klonapin, but now that he's on the ACTH again the Klonapin helps with his crankiness.

The EEG showed that there has been slight improvment. We have added another injection per day for two weeks. We will do another EEG in two weeks to follow up. The ACTH is not a long term medication. The dr put in a referral to Children's Hospital Miami to the neuro surgury department. When I asked what kind of surgury on the brain they would do, she wasn't quite sure. She said the Dr's in Miami would further discuss this with us...risks, benefits etc. It's not for sure we will do surgury, but we are going to explore that option. We may not have to look into that if our EEG is perfect in 2 weeks, but we'll see.

EEG Tomorrow

Tomorrow Matthew has an EEG to check the status of the ACTH. We started the ACTH 5 days ago. I do not quite see the results as I did before, however, before his seizures were much more severe. We are on 1/4 dose than we were before. He continues to have myoclonic seizures. I notice them mostly when he wakes up around 3AM. He is unable to fall back asleep because the seizures keep him up.

Tomorrow we will see what the EEG shows and consider our next step...which may be surgery or increase the ACTH.

Matthew had a great physical therapy session today. He was holding his head better and sitting up with support very well.

Round 2, ACTH

We have had two urgent EEG's in the past 10 days. Unfortunately they are indicating that Matthew's Infantile Spasms are returning. The doctor said that most of his seizures are focal seizures. We are planning on doing a shorter regimen of the ACTH and doing a lower dose. We started the ACTH injections today. We will be doing one injection every day for two weeks. We are returning to the Dr for another EEG next Wednesday to see if his brain activity is returning to normal.

If it is not, the plan is to increase the dosage of ACTH. If we do this and it does not work, we are considering surgery for Matthew. The Dr recommends Children's Miami. We would be able to stay with my parents if we went there. Because his seizures are localized, this makes it a possible option.

Latest EEG

We had our EEG last Friday, however, his doctor was not in, so the results were not read. Matthew had a rough seizure day Saturday, but Sunday seemed to be better. Chris and I were ready to take him to the ER on Saturday if he had one more, but he didn't. He continues to roll on his tummy and want to stand all day, so the seizures do not really interfere with his development. With that being said, he did have a few that made him cry over the weekend.

EEG

As mentioned in prior blog, Matthew is having small seizures. We have increased his Keppra twice. This did not seem to help. Two days ago we introduced another mediation, Tegatrol. The Ped Neuro also squeezed us in for an urgent EEG today. We'll see what that read.

On a positive note, Matthew continues to flip himself. He gets flat on his belly & still gets stuck. When he's not flipping himself on his belly, he wants to stand. He is getting stronger in the legs. He would be happy if we could hold him up for hours while he stands. We can't really put him in an exer-saucer yet bc he does not have good head control, although, he is starting to get it back.