Recovered well

Reggie has been home for a few days. He is tolerating 350cc of bolus feelings.

Reggie is on depakote 750mg TID for seizures. He has better seizure control. You can follow his seizure log in the blog.

He is still coughing on his drool. Have given 1mg of robinol to dry secretions. It doesn't seem to be helping that much.

Grandmal Seizure log

May 30 GM 8pm. Several days small seizures

May  9 little seizures
0 May 7 started Depakote
May 3. (3) GM 9am. 11am. 5pm.

April 30. GM 10am
April 28&29 G
0
April 22. 1GM at school
April 21. 2 GM
April 20. 4 G trileptal only
0
April 12. 2 GM and 4 G in hosptial decreased depakote. Weaning off. Starting trileptal
0
April 1. GM
0
March 23. 2 GM at family reunion. Naratriptan
?
March 5 GM 6:40am. GM. 10am
0
Feb. 22. GM 3am
0
Feb 15 GM 8am
0
feb 5 GM 6pm
feb 4. GM 12 midnight
0
Jan 31 3 G GM 4pm
Jan. 30 G
0
Jan 27. GM. 9am
Jan 26. GM 9am (changed/silent)
0 6 days
Jan. 19. Numerous G
0 3 days
Jan. 15. 3 G 1 GM 5:30
Jan. 14 6G (chiro)
0 1day
Jan 12. 1GM 10:30PM
0 1 day
Jan 10 1 G
Jan 9 1G
Jan 8. 1G
Jan 7 1G
Jan 6. 1G
Jan. 5. 7am. GM 3G
Jan 4 11am GM 2:30pm GM
Jan 3. 3 G
Jan 2. 1 G
Jan. 1 GM 2:20am 2 G
Dec. 31 GM 4:15am 1 G
Dec 30. 3 G
Dec. 29 1 G
Dec. 28 3 G
Dec 27. 2 G S1/2
Dec 24. GM 3am. GM 11am S
Dec 23 GM 3am

Depakote 750mg. TID

GM = Grandmal
S=sleeping all day
M= myoclonus
G=generalized

Post surgery

Today is second day post op and Reggie is still in a lot of pain. He has been getting 0.3mg of morphine every 6 hours. Surgery hasn't cleared him to be feed. He is resting.

No Dilantin. Yes depakote

Reggie has had significantly more brief and generalized seizures on Dilantin. Although the actually number of Grandmal seizures slightly decreased. Reggie had very few good days on dilantin. They added depakote but seizures are the same. Today they discontinued the Dilantin and will stay on depakote.
Reggie has been on depakote in the past and still had 3 seizures every 3 days. We chose to go back to depakote because at least he had some control and it is the treatment of choice for myoclonus and DRPLA Seizures. Miah is well controlled on depakote.

Fundal ligation.

We finally figured out what is going on with Reggie. We are at Miami Children's hospital and he has severe GERD. Reggie finally got approved for fundal ligation surgery Thursday 12/20. We believe the following symptoms with resolve after the surgery.
Pain
Crying
Reflux
Cough

Seizure cluster

Seizure cluster is not well defined. We documented a seizure Wednesday. Than Thursday Dec. 3. Exactly one week after the last cluster was a very shaky day. Friday Reggie had 2 grandmals and lots of partials. Saturday he had one Grandmal in the morning than began to recover.

Chin. Ars. 200c. We gave Reggie 3 doses Friday after his second seizure and a dose after his Saturday seizure. It does seem to allow him to recover faster

Seizure

Started the day crying. Seem to no want to be feed through the tube. He went to school and had a seizure 1:30 seizure

Seizure but happy

Reggie had one Grandmal and several partials, but he is happy and alert. Happy to see his mommy come home from a Navy trip

5 seizures over 3 days.

Reggie had a seizure cluster over Thursday and Friday. Reggie started Thursday shaky. I gave a dose of chin. Ars. 200c. Couple hours later e had his first Grandmal seizure. I'm not convinced the remedy and seizure cluster is related, but we will be watching that.
Reggie ended up having 3 Grandmal seizures on Thursday's one on Friday during the day and one Friday middle of the night.
Reggie woke up today Saturday happy and alert. Reggie is still on Dilantin 100mg. TID

Chininum arsenica

After stabilizing medically we started chin. Ars. 200c homeopathy. Gave first dose Tuesday Nov. 27. Cough is a little better. Drooling is a little worse today but it could be because we gave Ativan yesterday for a dental appointment.

Dilantin

When Dilantin is given IV as fosphenytoin it seems to control Reggie seizures. We are having trouble keeping his levels up giving through the Gtube. As of yesterday he is only on Dilantin and they increased it to 100mg TID. Dr. Pearlmutter says that the clobazam Also works on CYP2D6 and could have been decreasing Reggie Dilantin level. The clobazam was also causing excessive drooling. Reggie still had 2 GM and several partials today.

Dilantin

Reggie on Dilantin 100mg. BID and Onfi 20mg. BID. He doesn't really want to walk or bare weight. He is drooling a lot. He is still coughing and doesn't want to eat by mouth He is awake and happy, just not doing anything. He is having little seizure activity. The plan at this point is to give his brain a rest on this medication and see if his functioning improves.

Home from hospital

Reggie is not 100% yet, but happy to be home. His Physical therapist was at the house early this morning to get him moving again. He is currently on Dilantin 100mg. BID and clobazam 20mg. BID and 10mg PRN. Hoping and praying this is the magic combination that stops his seizures.

No lacto. Bacillus

Reggie started having stomach problems. After much differential diagnosis we realized the lacto bacillus was causing severe gas

Keppra increased GM

Keppra started in the hospital. He had 9 Grandmal seizures and numerous small seizures. As soon as keppra was stopped so did the increase in seizures. Will never use keppra again

Miami Children's hospital

Reggie came Monday with a bad cough not responding to antibiotics. Today is day 4 and the cough is not better. The good thing is we are adjusting the ketogenic diet and trying new medication combos to control his seizures. It looks like we will be here for awhile.

3 Grandmal seizures

Today (day 5) Reggie had 3 Grandmal seizures and slept all day. He had 4 days with no Grandmal seizures. Saturday day 4 was a little shaky. Reggie is still on Onfi 10mg. BID

Day 3 no seizure.

Today is day 3 with no seizure activity on the Onfi 10mg. BID. His teacher said he slept at school most of the day, but that's good compared to seizure clusters.

Onfi

I never started Onfi daily. I was trying to do only every 3 days. But Reggie was still having same amount of seizures. Today we will start Onfi 10mg every am and possibly 2-3 times /day. I realized I can handle Reggie's disabilities but his seizures cause a significant hardship; emotionally, physically, and financially. Please pray we can stop the seizures.

Onfi or VECTTOR

Reggie cycle has changed. Not really having good days. I don't know If it is from the Onfi (every 3 days) or doing the VECTTOR daily. Thursday morning Reggie had a grandmal seizure first thing in the morning. I gave him Onfi 10mg and did the VECTTOR machine to try to increase his ketones and decrease his glucose. He had a great day at school. Friday he woke a little shaky but I did not give him the Onfi because it was suppose to be a good day for him. I did do the VECTTOR machine. All day was shaky. Today Saturday he is shaky still. I did VECTTOR again today and Almost had a Grandmal several times.

I have talked with doctor Saine and Reggie is on lycopodium 200c which is directed toward his cough, but should help his seizures and function.

Onfi

Just when we think Reggie is on a clear schedule he has a seizure on what is suppose to be a good day. We have been giving him onfi on his bad days and he has less Grandmal seizures. But today was suppose to be a good day. Today we wills start with daily Onfi 10mg. I am vet reluctant to use this med but I have to give it a fair try.

HBOT

Thanks to Valery Cabrera Reggie gets Hyperbaric Oxygen Therapy (HBOT) at home. HBOT increases oxygenation to his brain to promote healing and increases stem cell production. Our plan is to put Reggie in the chamber on the days he has a seizure.

We stopped using the VECTTOR temporarily, because it changed his seizure schedule.

Homeopathy put him back on Nux Vomica

Medication. A new benzodiazepine derivative ONFI will be used PRN for seizures.

EEG biofeedback at least 3 times per week.

3 is officially Reggie unlucky number.

Reggie is currently off all medication and his VERY distinct cycle has returned. He is having around 3 Grandmal seizures every 3 days like clockwork. No practitioner can explain or break the cycle.

He is still on the Cic 10m homeopathic remedy, but it doesn't seem to help. One major change is that he does sweat now. For many years he didn't sweat.

Ketogenic diet is 1800kcal 4:1. But his ketone levels drop into the 1.0 range and therapeutic is 3-5. BOH. Waiting on Dr. Rhodes (VECTTOR) protocol to see if he can get the glucose down and ketones up.

Started EEG biofeedback. Fz to Pz increase SMR. decrease Delta. This should help Reggie organize his brain and ultimately decrease his seizures.

Improvements.

We have been busy and have lots to share.
Reggie went to Miami Children's for his neurology and ketogenic appointment. They adjusted his VNS to 1.5hz (21seconds long) every 90 seconds.
They increased his fat intake 1800 kcal at a 4:1 ratio.
They were very hopeful that Reggie might become seizure free. Pilar , the NP and Ceci the Dietian were both going to the international ketogenic conference and we plan to hear from them about their experience.
They also discontinued the Topamax. Tonight will be his last dose.

The Homeopathy, Dr. Saine says that Cic is still the remedy that is strongly indicated. We have increased the dose to 1m.

Met a new chiropractor Dr. Bagnel. Who did a scan on Reggie that revealed dysfunctions. (surprise!! Lol) The most prominent dysfunction is Reggie Thalamus. We have purchased color therapy and tuning fork equipment to begin stimulating the Thalamus we have also agenda to the Thalamus in Bodytalk and NFP.

Reggie also broke out in that rash again. The homeopathy believes it is from his seizure medication. We are in the process of taking him off his meds.

Less seizures but no energy

Last week the ketogenic practitioner increased Reggie fat intake 5 grams of MCT with every meal and 10 grams at night. He is having less Grandmal seizures, but doesn't have much energy. He maintained his 63lbs

The Alpha stim seems to help a little when he isn't having seizure activity.

He is on the same schedule of seizure activity every 3 days.

Uncle Reggie holding baby Trent

2 bad/2 good days weight loss

There has been a consistent decrease in seizures. On his bad days he only had a total of 2 Grandmal seizures, but had a couple partial seizures. Ketone levels are still pretty low. Ranging from 0.9 in the AM to 2.9 in PM. The Ketogenic Nurse Practitioner add 5grams of MCT oil at night to see if we can prevent the drop in ketones. I will test his ketones tomorrow morning.

I will email the Practitioner tomorrow to share ketone level and the fact he his loosing weight. We weighted him today and he is down to 63lbs.

Chewing and swallowing is improving.

We are continuing on the cic 200c homeopathic remedy, doing Alpha stim as often as possible.

I am concerned about the rash that has appeared for the second time on his back. I will talk to chiropractor, acupuncturist and homeopath about that Monday.

Great day.

Reggie started his day off a little tired, But ended with a good Physical and Occupational therapy session and a ride on his favorite horse.

We are using the Alpastim several hours a day, it really seems to be helping.

We continue with his homeopathic remedy at least once a day. The Cic 200c has helped with seizures and overall ataxia.

We stopped using the Vitastim. The main reason we stopped using it was because Reggie's difficulty swallowing is due to ataxia not weak muscles in his neck. The Vitastim was also difficult to use. We will reconsider later

Ketones are average. 8:30pm immediately after last meal his betahydroxy blood level was 2.6. Function is good.

VECTTOR

The last 4 days has not been good, Then yesterday and today were seizure days. Ketone levels were low. After some investigating we realized that the VECTTOR stimulation protocol could be inadvertently decreasing Reggie ketones, thereby increasing seizures. We will be taking a 2 week break from the VECTTOR, while Dr Rhodes comes up with a protocol to increase ketones. In the meantime we will continue his homeopathic remedy, turbo sonic , Alphastim, Vitastim, PT/OT and his special school.

4 seizures today.

Reggie did have 4 seizures today, but it might be because we started lots of stimulation. Good news. Reggie's seizures are only 30 seconds.

Started the Vecttor.

Continued on the alpha stim.

Did the turbo sonic.

Another good day.

Gave about 3 doses of cicuta 200c for "almost" seizures. The remedy helped and Reggie had a good day.

Reggie is still having a lot of trouble with swallowing. We started Vitastim therapy today, which gives electrical stimulation to the swallowing muscles while he is eating. Had his first treatment today as it seemed to help.

Also started 1-2 hours of the alpastim,(cranial stimulation). Alphastim is FDA approved for anxiety, depression, and insomnia, but is being researched in neurodegenerative disorders. Bundy has been using it for a couple of months and we have notice an improvement in Bundy's ataxia.

Homeopathy

Sent a lot of videos and information to Dr. Saine. (homeopath). Major concerns are Reggie's difficult swallowing, ataxia and seizures. New remedy is cicuta 200c. Gave 2 doses of the remedy today.

Today was a really good day. :-)

Great day.

Reggie had a great day today. Yesterday he had a Grandmal seizure, but recovered in time for a good therapy session. The improvements we are noticing from the ketogenic diet are: quicker recovery, less intense seizures, and no severe clonus when weight bearing.

He is having trouble crewing and swallowing and having some acid reflux. I took him to Dr. Lang (acupuncture) today for those symptoms.

Good day / bad day

Yesterday was a good day. Today was a bad day. Coffee 200c helps him sleep at night. Belladonna helps with seizures. Been giving nicinimide B6 to compensate for medication error. Consistent with 3:1 ketogenic diet. BHB 3.8. Ketones in urine large.

3:1 Ketogenic started

Yesterday reggie started with moderate seizure activity in the morning. Gave one dose of belladonna 200c. The afternoon he began to improve a little and ate some food. Slept well last night, but he didn't want to eat this morning and was very shaky.

Got word back from Pilar (nurse practitioner in charge of his diet) and she allowed him to go up to the 3:1 keto ratio starting today. 3:1 is the therapeutic diet ratio and should produce some seizure control.

Reggie has had one Grandmal seizure today. Gave belladonna 200c

Finally a good day

Reggie is having a great day. Went to the pool. Ate all his food by mouth. Did excellent in therapy. Yesterday started out bad again. gave 5 consecutive doses of Oen. C. 200c. Didn't improve at all. I switched to belladonna 200c x5 doses and he started to improve.

Grandmal seizure

After Over 24 hours of nonstop monoclonic seizures, I began giving his homeopathic remedy every 15 minutes. Oenathe crocata 200c. After the fifth dose he had a Grandmal seizure. Reggie also has diarrhea and a low grade fever 99 axillary. The 2nd. Grandmal seizure at 3:45.

Couple new things to document today. About 30 seconds after some Grandmal seizures he startle/fearfully screams very loud. He also sometimes has decererbrate posturing after Grandmal seizures.

Also something. Very new in the last 24 hours is Reggie has been sweating. He abnormally never use to sweat.

Also I have been applying coconut oil to his rash and it has improved drastically.

Bad day.

Something is changing. Reggie has been having hard monoclonic jerks all day, but he is very alert. The alertness is good, but he gets upset at the jerking. His betahydroxy (BOH) blood ketone level was 2.0 today. He is jerking so hard I don't know If he will get to sleep.

After about 15 minutes of sun today Reggie broke out in a rash on his back. The rash looks like shingles. I put coconut oil and eucalyptus and it appears to be drying up.

6 Grandmal seizure

Reggie has had 4 bad days. 2 really bad with 6 grandmals and multiple monoclonic seizures. He is at Miami Children's Hospital. Started the ketogenic 2:1 Monday and today has a beta hydroxy (bl. Ketone level) of 1.6. They won't let us feed him by mouth until he passes a swallow test. Which has been rescheduled twice.

Checked in at Miami Children's

Little disappointed. They won't be officially starting the diet till tomorrow. Lots of tests to make sure his body can handle the diet. Also tomorrow they will do a video fluoroscope to see if he is aspirating his food. If he is, he will have to be 100% tube feed. That would be depressing for us, and upsetting for Reggie who enjoys eating.

Good day.

Reggie had a great day today at school and therapy. Yesterday we had our appointment with the ketogenic team at Miami Children's Hospital. Reggie will be admitted Monday for 3-5 days to start the diet. They have already started decreasing his meds. Down on the topamax every 3 days.

5 Grandmal seizures.

Very bad day. 5 Grandmal seizures. Unresponsive all day. Gave several remedies and tried to stay on high fat. :-(

2 good days

Reggie is staying on the same pattern. He had a really good weekend. Swimming and playing. Good appetite and no seizures. In the middle of the night, he started with seizure activity. Started giving. Oenathe crocata 200c. He also woke this morning pretty shaky. Gave a total of 5 doses OC 200c and he did go to school, but he wasn't so good

2 not so good days, 1 GM seizure

Reggie did not function much today or yesterday. Sleeping and lots of small seizures, as well as A couple partial seizures. Yesterday he had a Grandmal seizure at 4:30pm. Increased topamax to 125mg BID yesterday. Oenanthe crocata 200c started this morning. X5 doses. After NFP therapy he began to feel better.

2 good days

Reggie has had 2 good days. However, last night he was VERY restless and couldn't go to sleep. gave plum 50mx3 doses. At 2am Reggie was still not asleep. Gave homeopathic coffee 200c and I believe he fell asleep. Was good at school and therapy today. :-).

Dr. Romero (chiropractor), Dr. Pearlmutter (famous neurologist in Naples), Dr. Lewis Ph.D (neuro-degenerative specialist in Boston) all encouraged giving the ketogenic diet another try. We did try the modified Atkins 2 years ago, including trying to do the ketogenic without success. Last time we tried it we did not do it 100% and we didn't have the gtube, so seizure days he got no food and lost weight. If you have the time, I encourage you to watch the movie "first do no harm". It is on Netflix and YouTube.

3 more Grandmal seizures

Gave Cuprum 1m x2 after first seizure, but he still had second seizure. After third seizure started belladonna 200c x8. He did eat dinner and interacted.

2 Grandmal seizures

Reggie had 2 grandmals today. Gave plum 50 x2 after the first but he still had second seizure

Vomiting

Well, my nursing students handled Reggie vomiting everywhere during therapy. Reggie has had an upset stomach most of the day with reflux. Entered symptoms in abc homeopathy and gave carboneum 200c. X5 doses. For heartburn, coughs from heartburn, and better after vomitting.
After thinking about it. The ginger/beet tea could have irritated his GERD
Otherwise it was a pretty good day. Except lots of little seizures. Gave cuprum 1m around 4pm to see if it would decrease the little seizures, but it didn't seem to make a big difference.

Pretty good today

Reggie went to school today, came home, and worked really hard in Physical Therapy. He wasn't eating well and having trouble with aspiration so we took him to Dr. Lang and Dr. Lee MD, and acupuncture physicians. After acupuncture treatment he came home and ate dinner. Prescription was to boil 3 radishes and one slice of ginger for 5 minutes and give to Reggie. Also Reggie fell and bumped his head. Gave arnica 200c

Grandmal seizure

Reggie woke up shaky but we thought he was going to be ok. Took him out shopping and he had a Grandmal seizure. Slept the rest if the day. Interacted a little, but very shaky. After Therapy Reggie was very shaky, almost had another seizure. Gave cuprum 1m and put him to bed.

Grandmal seizure

Reggie woke up very shaky today and ended up having a Grandmal seizure. After the first seizure we gave Plum 50m every hour x 4. By 3:30pm He was able to participate in Physical and Occupational therapy and he ate dinner.

2 good days. Now sleeping.

Reggie had a great weekend. Swimming, 4-wheeling, and enjoying company. He had trouble going to sleep last night so I gave Plum 50m. I'm not sure it helped. Bundy said he was still awake at 2am. When we tried to wake Reggie he was very irritable and crying. Took him to Dr. Romero (chiropractor), who functions as his primary care provider. Dr. Romero said nothing was testing. No evidence of anything wrong. Did his weekly adjustment and told us It was on to push him. Physical therapist came and tried to work him out but Reggie would not wake up. We will increase his tomapax tonight to 75mg BID for 5 days.

Grandmal seizure

Reggie slept well last night but had a Grandmal seizure at 8am. I am waiting on a call back from Dr Naqvi (neurologist) in the meantime I gave an extra dose of Topamax. I spoke with Dr. Saine (homeopath) yesterday and his recommendation is to give Plum 50 every time he begins to not show improvement. So I also have a plum 50.

Physical/Occupational Therapy

Reggie started his intensive therapy program this week. The therapist are a great match for Reggie. They are very knowledgeable and willing to do innovative things. The PT is also a manual therapist which is very important for Reggie's recovery. Reggie is still seizure free with the start of the Topamax, but not systemically back to himself. Still fighting the cough and lethargy. PT documented hypertonic with cerebral palsy posturing. And delay in initiation of movement similar to Parkinson's disease. Both observations will be helpful for the homeopath.

Seizure free

Reggie has not had a seizure since starting Topamax, but he is still not himself. Not eating well, sleeping a lot, still coughing, Very stiff, and keeping his torso and legs straight while co reacting arms. Saturday I gave a couple doses of phosphorus 200c which seems to help with swallowing and coughing. Saturday night I gave plum. Met. 50m. Because he was very agitated And couldn't get to sleep. We are taking Reggie to Dr. Romero the chiropractor today and will speak with the homeopath again Wednesday.

Topamax

Today was another bad day. Ended uphavering 3 Grandmal seizures despite giving extra Neurontin. Dr. Naqvi said Neurotin usually doesn't work for seizures, but I wanted to try it anyway. After speaking with Sr. Naqvi's nurse practitioner we are discontinuing the neurontin and starting Topamax. Reggie was on Topamax 5 years ago and it was working. I choose to take him off to try alternative approaches. If Topamax doesn't work the next medication is clozabam. A new drug just recently approved for Lennox-gastuat by the FDA. the doctor will have to jump through some hoops to get it for Reggie, but that is the next step.

Also spoke with Dr. Saine. Homeopathy. We will continue the phosphorus until the cough is gone. And start Plum 50m. Gave one dose of Plum 50m

Grandmal seizure

Yesterday there were some improvements in Reggie's cough, chewing and swallowing. However, seizure activity was very bad. He was having partial seizures non-stop all day. We continued with phosphorus 30c every two hours alternating with cuprum 1m for seizures. He went to sleep ok but woke at 4am with partial seizures. Gave cuprum at 4am. And 7:30am. He still had a Grandmal 8am.

Homeopathy

Talked with Dr. Saine today. Presented Reggie having not completely recovered from his pneumonia. Coughing, weak, ataxia and dysphasia significantly worse. Reggie has even been aspirating on certain foods. Dr. Saine found it significant that Reggie had all that severe gas from cabbage. Dr. Says there is a whole group of remedies sensitive to cabbage. Started Phosphorus 30c every 2 hours. For 36 hours. Reggie has had his first couple doses and he is already feeling better.

Reggie trying to enjoy vacation.

Reggie tried really hard to make Father's Day and Bundy birthday good days. No seizure activity and enjoying the Disney parks. Riding roller coasters and smiling. However, he is still pretty weak and VERY ataxic. I have noticed a significant increase in ataxia recently. Last night gave plum 20m and gave cuprum 1m this morning. He has been upset about something.

5 really bad seizures.

Today we were traveling to Orlando for our family vacation. Reggie had a really bad day. He started last night with partial seizures from 2:30am. I gave him a cuprum 1m and put the Alpha-Stim cranial electro therapy stimulation on him 1hz for 2 hours. He had a long Grandmal seizure and stopped breathing while on the device. He has since had 4 more bad seizures.

Good 3 days.

Reggie has been pretty good the last 3 days. No seizures, but we did have to keep him on antibiotics because his lung are still fighting the pneumonia.

6 seizures

Reggie has recovered from the pneumonia, but today is a bad day. He has had 6 seizures.

PT/OT evaluation

Today Reggie is feeling a little better, bur he is not 100% yet. I am very happy that we finally found a way to get intensive Physical and Occupational therapy with New Heights Rehab. I was really impressed with their treatment plan for Reggie and they are open to trying new things.

Pneumonia

Dr. Machado called at 10pm last night to say that Even though Reggie Chest X-ray was normal his microplasim was positive for pneumonia. Started Azithromycin 400mg. Loading dose. 200mg /day for 3 days. He is feeling better today still not eating. No defer and spent some time awake

Sick and seizures.

Reggie has been sick for almost a week. Not eating. Fever. Upper resp symptoms. He also had 2 grandmal seizures today

Miami children's hospital

Reggie is trying to smile as we wait for labs and chest x ray at Miami children's. Yesterday I came home to Reggie having diminished bilateral lung sounds and resting O2 sat 90%. After 3 albuterol treatments he had much better airflow and 98% O2, he slept through the night. Woke this morNing with bilateral adventitious sounds. Gave another albuterol treatment and took to pediatrician. Beta flu negative and we are now at MCH for Chest x ray and labs

Grandmal seizure

Disappointed. Third day having a Grandmal seizure. Yesterday he slept most of the day. Had the seizure 5:30am

Grandmal seizure

Reggie had a Grandmal seizure last night and lots of sleeping today.

Grandmal seizure

Reggie had a Grandmal seizure In his sleep last night. He woke this morning without seizure activity, but I think he is getting sick. He stayed home from school yesterday and today to try and rest it off.

Partial seizures

Reggie had a partial seizure today and one yesterday. Both were because he was woken from sleep. Pressure on the Accupunture point under the nose stopped the seizure.

Day 3 Grandmal seizure

Reggie pattern is changing. This is the third day of seizures. Yesterday after his seizure he recovered fairly quickly. And he woke this morning ok. But he toke a nap and had a Grandmal seizure upon waking. Still giving plum met 20m every evening. And cuprum 200c every morning. Gave another cuprum 200c after his seizure.

Day 2 Grandmal seizure

Yesterday he began to recover from his seizures. He got up and ate. He was very shaky but alert. Restless last night. Gave plum met 20m. Slept through the night. Woke at 7:45 with a Grandmal seizure. Have cuprum 200 after seizure

2 Grandmal seizures.

Last night during therapy he started to have a few mynoclonic jerks. After therapy and feeding he started crying. Gave chel 200c because I thought he might be in abdominal pain. It did not help. Put him in bed and he went right to sleep, he must have just been tired He had 2 Grandmal seizures. At 1:30 am and 7am. Slightly less intense than they have been in the past. Gave Cuprum 200c after each seizure.

Homeopathy

Traditionally constitutional homeopathy using only one remedy at a time. That is how Dr Andre Saine has prescribed for Reggie in the last 2 years. Obviously Reggie is continuing to get worse. After a long conversation today Dr. Saine's prescription is as follows.
Continue Plum met at increase dose of 50m every night. Because plum met has clearly helped with restless sleep.
Give Cuprum 200c or 1m every morning for seizures. Give more frequently with seizure activity.
Lastly give chenlidoum for his more recent abdominal pain. Give 200c every 5 minutes to stop pain.

Grandmal seizure

Reggie had a partial seizure while on the lower body electric stim machine. E3A2. Even though it said "need new protocol" there was a significant temp increase over all the combos. While on 117BL black/yellow only he had a Grandmal seizure. Starting temps were 82• ending we're 92•. Looks like when it works it triggers a seizure. But last time he recovered quickly.

We have also increased the lamictal to 150mg BID. He is still on the neurontin 300mg TID

Crying / screaming / ataxia / seizures

On and off all day Reggie has been in pain. At first simethicone (for gas pain) was helpful. But it stopped helping. Plum met. 20m seemed to help with little seizures but nothing for the pain. Gave a combination of Prevacid and simethicone.

It also appears recently the ataxia is getting worse. Medication increase or VECTOR, or just progression of disease

Rubber-ban man

Ruth calls Reggie the "rubber-ban man" because he always bounces back. Well he proved that true today. He is good today and at school

Miami children's ER

Reggie pulled out his Gtube last night. Must have been out a long time. Because the stoma is closing. I was not able to get the tube back in. I put in a. 10F suction tube. On our way to MCH.

After some complications, drama, and a seizure we are home. Reggie has a working Gtube and is feeling better.

Finally a good day

Reggie is feeling good this morning. Smiling, trying to talk, laughing at me and waiting for bus. :-)

2 Grandmal seizures

Reggie had a seizure at 3pm :-(. Dr Naqvi neurology did call back. He increased lamictal form 100 to 125mg BID. Retake amylase in 2 weeks. Amylase was still 131 last visit. I am concerned that the lamictal is causing the elevated amylase, but Dr. Naqvi doesn't think so. Gave the higher dose but Reggie still had another seizure. This seizure was over 2 minutes and he stopped breathing. He is now resting quietly.

Myoclonic seizures

Reggie is happy, but having continuous Myoclonic seizures for 3 days. I have given multiple doses of Plum 20m without improvement. He has been doing his electric stim as well. Dr. Rhodes is changing his electric stim protocol and I am waiting on Dr. Naqvi. Neurology to call me back about his medication. I am concerned that Dr. Naqvi will want to increase his Lamictal again and we haven't gotten a recent Amylase.

2 Grandmal seizures

First seizure was in his sleep at 1:30am. Second was after getting him out of bed at 7:30am.

Grandmal seizure.

May 8th ended up being an ok day. However, 1:30am Reggie had a Grandmal seizure

Rough start

The last two days were good for Reggie. This morning he didn't want to wake up, and was having seizure activity. We gave breakfast through the tube and Plum met 20m x4 doses. He made it to school but he is sleeping a lot.

Minocycline

There is some evidence that the tetracycline called minocycline could improve symptoms of DRPLA, by preventing the destructive protein from replicating. Current studies are showing improvement with Huningtons chorea, which is genetically similar to DRPLA However, Reggie is fragile and it wouldn't be prudent to experiment on him. Today we started our own experiment on another DRPLA case. 100mg BID

3 Grandmal seizures

Yesterday was Reggie birthday party and he had a great time. Swimming. Dancing. And eating good stuff. Unfortunately, he woke shaky this morning and had a Grandmal seizure. He had a second seizure at noon 3rd seizure today.:-( Today is Reggie's Birthday he turned 13. Happy Birthday big guy. I love you.

A OK

May 2 was pretty good day, today is an OK day. Reggie having a lot of monoclonic jerks but happy. Getting ready for his birthday party tomorrow.

Shaky days

Reggie has not had anymore Grandmal seizures but having a lot of monoclonic jerks and sleeping a lot. He is getting plum. met 20m 4-6 times a day

Grandmal seizure

His day had been improving. He went to sleep around 9pm. Had a Grandmal seizure at 12:30am. :-(

Pancreatitis/gastritis/Ulcer

The last 30 hours has been challenging. Reggie started crying since 1am saturday morning. It appears to be pain like when the doctor thought he was recovering from pancreatitis. (amylase 137) Yesterday gave Pepcid AC he was feeling better. At night he wouldn't sleep crying. Gave Prevacid 30mg. Went to sleep. He woke up ok. Ate a BIG breakfast. Now he has started crying again. Without diagnostic testing appears to be GI. Deciding what to do???

Reggie on his 5th piece of pizza

Today is a good day. Reggie went to school. He is home doing his electrical stim machine. (VECTOR) and eating lots of Gluten Free Pizza. No NFP therapy tonight. Many of his Reggie addicts have completed nursing school and I am attending their pinning ceremony. Today Reggie will get a total of 4 doses of Plum Met. 20m.

Talked with Dr Andre Saine.

Dr. Saine is Reggie's "internationally known" homeopathic doctor in Montreal Canada. He still thinks Plum met is Reggie constitutional remedy. His prescription is to take plum met 20m every four hours while awake. We are starting it this afternoon. Today was a recovering day. Reggie slept a lot. He did eat and interact.

3 good days

Reggie had 3 good days. Friday Saturday and Sunday. Sunday afternoon he started with lots of little seizures.

Recovering

Reggie had a rough day yesterday and he is still recovering. No seizures today. He slept most of the day. Tried to give a Plum met 20 to get him functioning, it didn't seem to help. But did wake up to eat in the afternoon. Right now, He is watching TV with dad while on his electric stim machine.

Had to start neurontin

Well today was a complete wash. Even after 3 doses of Plum met 20m Reggie had 5 grandmal seizures, and lots of seizure activity. Since decreasing the lamictal to 100mg twice a day his seizure pattern has returned to 3-6 seizures every 3rd day. Obviously that is unacceptable so we started neurontin (gabapinton) 300mg three times a day. I am sure after therapy and a good night sleep, Reggie will be good to go.

Milk :-(

I gave him raw milk today and he had green loose stool. Raw milk advocates say it is normal to have infant type stool. Reggie didn't eat any solid food today. I will try again on a better day to be sure to get an accurate assessment of his sensitivity.

Started ElectricStim

Yesterday he woke up very shaky, probably due to the fact he didn't get to sleep until 2am. So we started with one dose of Plum. Met 10m, and he had a GREAT day. In the evening we started Dr Rhodes ElectricStim machine called the VECTOR. The VECTOR stimulates points on his body to produce neuropeptides and ultimately decreases oxidative stress. He slept well last night, but he woke with a seizure this morning :-(

Pancreatitis

Dr Naqvi called, Reggie's amylase was 137 after decreasing the Lamictal to 100mg twice a day. So it is likely that his previous abdominal pain was pancreatitis from the Lamictal. Reggie has lost 2 pounds in the last couple weeks. Which Could also be due to the pancreatitis or from removing Raw milk feedings from his diet.

Homeopathy helped

I gave Reggie Plum. Met. 10m. Every hour. Times 3 doses. He slept for a couple hours and woke up great. Kayla put him on the treadmill and he is eating good. Outside playing now.

HELLO REGGIE ADDICTS

Finally a place for you to keep up with the roller coaster of Reggie's life. He loves you all and appreciates all you do for him. Right now we are waiting on Dr. Naqvi (neurologist) to call us back about pancreatitis and what to do with Meds. He is down to 100mg of Lamictal but has been having a lot of seizure activity.