As of today, Carina is on Acutane 20 mg one day and 40 mg the next. Her face is broken out with small red bumps looks like. I told her to go back to 20 mg a day instead of the 40 mg.
Also, believe she needs to stay away from ALL milk products. Its worth a try.

JT's face is also broken out his back is also.

Acutane

Started on acutane at 20 mg on the June 18th. She has been having headaches but it might be due to her not taking Minocycline, or msg or not taking her liquid for headaches, hard to tell. She has developed a red small rash on upper arms, chest, face and legs. Dr Larsen called today said it might be because this medicine is sun sensitive something like that so keep her on it and make sure she puts on sunscreen. Probably best to keep her out of the sun as much as possible. She ordered a cream for the itching, is able to take Benadryl if needed orally.
Also the MIND inst called said that Carina does have KID syndrome. She doesn't have all the symptoms but she has this syndrome they are saying.

carina still broken out all over face and she said on her body.

As I am reading Carina's journal I am noticing that through the dates of the 12 - 19 in the teens each month that she is having these flare ups. I believe it might be during her periond time before and during. Will post her date of periods. That is the most time when you want to eat sugar and hormones are problem causing. So will try and watch this.

Well if it ever looked bad it is now. Carina's face is all broken out. Trying to get her off milk however I think she is eating sugar. Started her on Collidal Silver with a tsp by mouth and drops on areas that hurt. She really looks bad right now. Cant start acutane til May. She has had starbucks these last 2 days so will illimanate that ASAP.
It is sunshine, cool but nice day.
She has had headaches recently, had yesterday in morning.
I have also started her on 27 mg of iron, plus 50 mg zinc, she is also taking those vitamins that have everything in that mom gave her.

Left arm pit red whole area and sore. Face is clearing up, chest looks good. Reading on HS, people have stated that they found eliminating milk help. One stated all mammal products, like red meat, pork and milk. But milk was a factor.

3/16/13

Carina's face has been broken out for a while now, seems like since she got back from Tinas house about 2 weeks ago. I mean it is really broken out might be also from starbucks coffees. Her under arm where that lesion is is hurting has corner areas are opened. She has a boil size of a bean on left thigh front. She says she has boils all thru her hair.

As of today carina spend the weekend with Aunty Tina, dont know what she ate but her thumb and another finger is swollen and hurts, she has had quite a few episodes of her left hand burning.
No headaches however she is taking her drops

SKIN UPDATE

 Carina's chest has what looks like acne but also can be HS. She has a cluster full on front chest doesnt seem to go away. Her face has some acne on it as well. Her left arm pit has that swelling but right arm pit is clear and smooth. Her groin area still has a small crusty look to it however is flat with not swelling, This is according to what I saw at the Neurologist vist.

NEUROLOGIST APPT 2/5/13

Saw Dr. Chow (intern) and then saw another Dr. the main for just a few minutes.
Their recommendation was to have Carina take her medication in the morning and at night. If the morning one makes her drowsy, she will need to take a lower dosage maybe a 1/4 of the med in the morning. Carina talked about her headaches, she will need to keep a diary to be able to exactly tell how often the happen, if anything happens before hand that signals her headaches, when her arm starts to feel like fire etc.
He also spoke with her in regards to pregnancy and if she was to get pregnant because seizure medications take the vitamins out of your body. The seizure medication she is on is pretty safe , however seizure medications have a possibility of causing birth defects more in the stronger meds however all can cause birth defects, the percentage rate is unknown.

Carina CT scan was done in 2012 before her left cochlear implant. MRI's show more of the brain than a CT however due to her types of headaches he said he thinks she is having complex migraines.

PLASTIC SURGERY VISIT

we will be going to see the plastic surgery doc today to discuss possibilities for carina, will write later on what the scoop is.

Carina still doing well thank the Lord. Her left arm pit i believe is still swollen, however overall she is doing well.
today is sunny and cold

Saw plastic surgeon: He said plastic surgery is not a miracle cure. We will think about cutting out the small swollen area under her left arm pit however will try and see if Acutane will help first. Plastic surgery would require taking skin from front of leg and grafting skin to arm pit area if they couldnt pull skin in that area enough to close it. carina did not seem happy with that. So all in all we will wait on that, maybe that will be the last resort. We also were told that it is common to see that when they have cut out an area, another area will appear with HS.

SMALL SEIZURE

carina had little seizure friday morning. She had taken her medicine. She did work out late the night before. Skin doing ok thank the Lord! She is still getting headaches, need to get drops. Today she went up with young people on trip to snow. Sky is sunny but cool. She has been going to the tanning booth however doesnt seem to helping her chest, or other areas.
Found out carina didnt take morning med thats why she had seizure

MEDICAITON LIST

List of meds taking currently:
Kepra - seizure - everyday 2x daily
Flucanozole - 1x weekly 12/12
eye drops- late in 2012 zilet
rimfampin - 11/11 due to HS
List of meds taken this past year:
Dec - flucanzole - 1x daily for about a week then after 1x weekly for about 1 month or longer
ADAP Tylenol - dec- for pain-about1 week or so
clendomyacin - no longer taking - 11/12-12/12
inflammatory formula and headache/pain formula by Quantum (herbal) 3/4 tube  daily

Topicals:

UCD Mind Inst

Jan 10 went to UCD Mind Inst. Met with a young doc Dr Lozano he was from mexico and his young assistant. Well she did a write up asking questions, family history etc. Then the doc came and talked with us. He things carina might have KIDS Syndrome which there are like 5 or 6 symptoms that are she has that are related to that syndrome. He was very nice and seemed very helpful. I was very thankful how he said she can take some blood tests which can identify other things. We will have to go back to him and see what happens.

ENDOCRINE DR

1/16/13
Went to endocrine doctor Dr Phatak in Rocklin. SHe is going to have carina do a blood test to test her cortizole levels again. Her initial blood work from Dr Larsen showed a low cortizole level which   controls the steroids in your system and if there is not enough when a major stress happens like maybe a car accident or something else tragic you can die because your body cant fight strees. So the doc ordered a new test to be done.
1/17/13 got blood work done for carina for acutane and other things.
carina is currently doing ok. She has acne on face and chest, a lump under left arm pit, and is doing ok down in vaginal but still is a little crusty. Last week she had laser hair removal done on both arm pits by dr larsen. It was painful she said, doc said next time they can put a topical which can numb the area. It smelled like burnt hair. SHe was sore for about the next hour or so but then recovered quickly. They gave her ice packs to put on her arm pits.
She is not eating cereal w/milk currently but is still eating breads and occassional cheese but I have to remind her not to and I have to remember also. Need to keep her off of milk but she needs to try also.
The weather is very cold 36 degrees in morning but sun is out. She has been going to the tanning booth and also going to the gym. SKies are clear and no clouds. She has been up snowboarding and hasnt had any problems except for her leg. When @ endocrine doc her left are was on fire. Headaches seem to be doing better also.


Sonal Phatak MD

550 W Ranch View Dr

Rocklin, CA 95765

(916)295-5700