THE RASH SAGA

I don't know how parents of truly ill children do it. It's been so tough the past 3.5 weeks, dealing with this unknown rash. Maybe part of it is the unknown. It drives me crazy not knowing what is making my baby so uncomfortable and itchy, and diseased looking. Also the logistics and "secretarial" work behind all this is an additional job, in addition to my actual full time job (AND my per diem job. AND my job as a mom lol. And getting our house reassessed - drama all on it's own. And trying to get things set up for his baptism. And doing a million other things). We've had 2 pediatrician appts (previously documented on here), an appt at an allergist, and last weekend we even took him to a homeopathic doctor in Buffalo. Also an unknown amt of phones calls and conversations with the nurses at the pedi office. Tomorrow we take him to the pediatricians office for a 3rd time because he has never seen his actual pediatrician yet, and I want him too.

He has had eczema since 2 months. That was confined to the usual spots - at his elbows and all the "creases;" wrist, knee, ankle. On monday May 5th is when it all went to pot. It was literally overnight he broke out in his crazy welt looking rash all on his trunk. His face is also rashy on and off, and it's also spread down to his thighs a bit. He also gets itchy eyes at certain times. We are doing everything we've been told to - and it's getting worse. And he's getting itchier. My child is now living with socks on his hands to keep himself from gouging his baby skin. Which doesn't even always work. 

Here's the summary of what has been happening:

We have been told to do, and not do, so many things. Contradictions by different doctors.

 Originally we were told to use dolsomide (steroid ointment) and moisturize with Cetaphil. Did/do it and it doesn't help. And give him Zyrtec at night. 2nd doctor appt - continue with those, and also try Claritin instead of Zyrtec (didn't work - went back to Zyrtec). We also smother him in Calendula ointment (homeopathic, petroleum jelly base) and Aquafour (also petroleum jelly based). Saw the allergist who said only put the steroid ointment on the actual eczema spots now and not all over his trunk. Also she wanted to try him on an elemental formula (broken down to amino acids, so there is no casein or whey aka no milk protein). This was to see if he had a milk protein allergy causing all this. If it worked, it would be covered by insurance, at least in part.

That began the sub-saga: THE FORMULA SAGA

So this formula is expensive. Like $50/can. A can lasts 2-3 days. The allergist had no samples. So I got right on the phone and called the pedi office, drove there, and picked up 2 cans of Neocate. One had a code to receive a free sample of the formula, so I ordered that as well and that arrived Tuesday. So we gave that to him starting Wednesday 5/21...the next day he looked SO much better. I was optimistic and called the allergist to tell them it worked and to write a prescription for it. It would require prior-authorization, which we knew since insurance companies are the worst companies on the planet and don't want to actually pay anything. So they make you jump through hoops.

 Anyway, got that ball rolling, called the pediatrician to inform them, and also called WIC. With WIC, in NY, they will also provide 9 cans of this special formula a month. They told me the doctor did NOT need to fill out any special forms (contrary to the form i was looking at online...) and they just needed the rx from the doctor. Made me an appt for Tuesday the 27th. I didn't have the rx at this point, since I had just gotten off the phone from telling the doctor to write one. And it was Friday afternoon and Monday was a holiday. Ok, well, why I don't I pick up the rx from the allergist Tuesday morning? (Um, because I work. And I'm already leaving work to drive across the city to your appt. That's why). After 1000 more phone calls, the allergist faxed the rx to WIC. Called Tuesday to confirm WIC got it. They did but they need another form (Yes, that same form they said they didn't need lol) but will still give me 1 month of checks and just come back next month with that form filled out by the doctor. Got those checks, brought to the pharmacy. They were confused about what to do. Said there was already a prior auth on the formula. Right... that's for the insurance. This is WIC. 2 separate things. They figure it out and do a special order.

They call me the next day (Weds) that it's ready. I go to pick it up... and the kid at the counter is SO confused. It took 3 people to figure it out. This is after I had had a phone call from them saying my order was there and come get it! They kept saying they were waiting on the prior auth. Again, that is for the imsurance. This is for WIC. 2 separate things. Of course it was there, and I got it. $400 for this formula, ya'll.  Also on Weds the allergist is calling me all confused about Wegmans faxing them a prior auth and THEY were totally confused about WIC vs. insurance as well. I wanted to jump off a bridge basically.

Good thing for WIC though because we would not be able to have any formula right now without it. Since the insurance it taking their sweet ass time and hello, this baby still needs to eat in the meantime.

And for all that... he looks no better. He looks worse. I really don't think it's a milk protein allergy. But we have to keep using it for a few weeks because that's how long it can take for your skin to clear up from one, apparently.

Also, since it's already at the amino acid level, he digests it so much quicker, which means he wants to eat more frequently. He was up 2x last night. We're so exhausted. He eats less per feeding though. Before,  he was eating 6 oz, now it's down to 4-5oz. Kind of strange.

******************

We took him to see a homeopathic doctor this weekend in Buffalo. I really hope he can help him, he helped 1 10 y/o girl who had had eczema her whole life, he totally cured her of it. He said to give him 3 months and he can clear it up. He recommended we not get him his 6 month vaccines because his immune system is hyperactive right now (which is causing this rash) but to hold off on any vaccinations for 2-3 months, and then pick it back up again. Honestly...this rash started about 2 weeks after his 4 month vaccinations, so maybe there is a link. I don't know. He gave us 2 homeopathic pills to use. We did the first set and now started the 2nd set. He also gave me pills to try to boost my breastmilk supply. Probably won't help since nothing helps with that lol, but can't hurt. Anyway, I really liked him and feel comfortable with him.

Callum goes back to the pedi tomorrow see his actual pediatrician. Just yet another appt that won't help. Just another $20 to hand over...

And allergy testing on June 13th, not sure what kind they're going to do. We have to stop his Zyrtec for a week beforehand. I'm scared for that.

Talked to the pedi office yesterday and they said to give him Benadryl at night now. I got some but I'm not giving it a) because I hate to give him benadryl so young and 2) it has red dye #40 in it which is horrible and banned in the food and medical supplies in every other country but the US, and no way am I giving my infant that shit. I got some to have on hand in case of a real allergic emergency but I'm going to look for a dye free version.

It's really taking its toll on me. I am just so tired of this unknown. I'm tired of my baby itching. His little baby hand, with poor fine motor skills, reaching up to his head to awkwardly scratch... it's so so heartbreaking! And he scratches his head all up. Sometimes I'll look and blood will just be dripping down his face. You know... he had been rubbing and scratching himself for weeks Plus he looks diseased. And everyone is always giving me advice or asking questions about it that I've tried or answered a bunch of times before. It's just this big weight of worry I feel on my shoulders all the time. I cannot wait till this stupid rash is figured out and it goes away and the weight is lifted!! It's also tricky because 1 day it looks awful, and the next it looks better. False hope!

5/5 - Original rash

5/8 - After starting steroids

5/18 - puffy face

5/18 - rashy back

5/27 - woke up at 3:30 am looking like this

5/27 - 4am



5/27 - 4am



5/27 - 4am itching

 

 5/26 - before the crazy rash above

5/27 - 9pm, looking better

Sweet boy on Mother's Day

5 months old

I am way way way behind on documenting Callum's life. I started this entry while he was still 4 months old. Lately it's like every hour of every day is just jammed packed. I cannot wait for this summer when I get to stay home (well i'm still working a bit for the hospital, because I cannot not ever work lol). I even had Spring Break a few weeks ago, and didn't even manage to write then.

He had his 4 month appt on 4/18. He was 15 lb 11 oz and 25.5 inches long. His head was 17 inches. Everything was normal. The doctor said he does not have a flat head, well, not flat enough to be of concern. Developmentally he is on target. She said we can start introducing solids. We had actually started giving him rice cereal on 4/15. We gave him it on a spoon and he didn't know what to think. We then started adding it to him bedtime bottle but have stopped now that he is having some sort of allergy to something unknown. We've also tried oatmeal cereal, sweet potatoes (HIS FAV), apples (didn't like too much, but they were bitter), and sweet peas (ew, peas). I can't remember all the dates we tried them. He hasn't gotten any solids now though other than avocados once in the past 2 weeks or so because of his hives!

He also had his first library trip on 4/16, and I wore him out in the Moby wrap. We then went to Wegmans and I got so many looks from people like they'd never seen such a thing before. I want to get a woven wrap to start doing back carries. I actually think I'm going to attempt to make one because a) it's cheaper b) it's cheaper and c) might be a fun project. Like I have time for projects lol.

Well I originally thought we had avoided 4 month sleep regression. He had randomly started sleeping like 8-9 hours and I was in heaven. I even started using Huggies Overnight diapers because he was peeing through regular ones sleeping that long. Wrong. After 1 week he started sleeping like a mess again. Ok, not really  mess but back to anywhere from 3-5 hours before waking up to eat. On the weekends I get up with him in the middle of the night, then in the morning when most people would just get up, but I make us go back to sleep for a couple more hours lol. He really is NOT that bad it's just hard to coordinate your sleep schedule with a baby's. We stay up too late and Callum gets up too early.

He "found" his ear on Saturday 5/3, and it was so funny to watch him manhandle it.

On 5/7 I took him to the pediatrician. On Monday he had a terrible looking red, raised rash all on his trunk. Of course, he has some red eczema around his elbows, wrists, knees and sometimes on his trunk but nothing like this. He was also itchy his little eyes like crazy. So finagled some things around and met my mom at the pediatricians. It took forever at the appt. Anyway, we really liked her (and she called me pretty, how can you not like someone that calls you pretty?)

Comparison:

Monday - pre-treatment

Tuesday - treatment started

 She said it IS eczema and he is having a flareup either d/t something environmental or something he ate. She said hold off on oatmeal or apples for awhile since he at that Saturday. He had had both of those earlier in the week tho and was fine. She also explained how allergies/eczema/asthma are all on the same gene and often if you get 1 you have the others. Great. Eric was an allergy asthma kid, so I was kind of expecting my kid would be too. Anyway, she gave us an rx for a steroid cream only to be used until this flare up goes away. After 1 use he already looks better. Also said he must be moisturized 2x a day with Cetaphil, and also said to give him Zyrtec.

We gave the steroid cream right away, but held off a day before giving him the Zyrtec. Yes, I was scared he'd have an allergic reaction to the Zyrtec and die in his sleep and also didn't want to overload his system with all these drugs at once. Well he slept 8 hours straight. If it's gonna have a side effect, I guess making him sleep is a good one. I wonder though if part of it is he's just not so damn itchy anymore so he wasn't as disturbed in his sleep. Last night at bedtime the side of his face was randomly SO red and irritated, and he scratched it so much he gouged the side of his forehead and had blood just dripping down. It was awful! AND my mom had just filed his nails a couple hours before. Poor kid.

Back to the doctor appt - She confirmed that his cradle cap is bad and said to use Selsom Blue. If that doesn't work we get referred to a dermatologist. Because we have tried everything and Selsom Blue is the end of the line for the regular pediatricians office. I've been putting aquaphor and now cetaphil on it the past couple days and it looks a TON better (I've been to Wegmans and Target like 3 times since Monday and have forgotten the Selsom Blue each time - oops).

He's still a pretty happy guy despite the rashiness. The PNP said "don't think for a second that he's not itchy. it is itchy." Which made me feel so bad for him! He still scratches his face up SO SO bad, like a newborn. We were like what the heck, why is he still scratching himself!? Well, the PNP said it's probably because he's trying to itch :( And him finding his ear... well probably itchy too. He had dried blood all around it at the dr appt Poor kid!!

(UPDATE - follow appt was 5/12. he looks better altho still little patches here and there. She wants us to try Clariton too and to give the meds 2x a day instead of once. THIS BOY.)

(UPDATE #3 - Taking him to an allergist today, 5/21. He looks bad again, despite treatment. Poor kid, 5 months old and already seeing an allergist.)

$20 a visit adds up (love those well baby check ups which are free lol). Funny how I NEVER go to the doctor for myself, but for your kid you don't even hesitate.

He was 16 lb 9.5 oz on 5/7, and 16 lb 12 oz on 5/12. And the nurse said several times that he was "long" for his age.  Fat boy.  He has refused to nurse for about a month now. Twice I got him to latch on and suck for like 10 seconds but that was it. I still pump but only get like 2 oz a day, so mostly formula at this point. Over it. Completely over it. I won't even entertain guilt anymore because I just don't care. I was told that by 4-5 months ANY breastmilk is just as good as exclusively getting breastmilk. So whatever, there's your 2 oz, Callum.

Speaking of Callum. This poor kid. His parents gave him such a difficult name for American speakers. His last name is tough enough (except it really is so easy, people just always say it wrong.  At the pharmacy they were calling him Caleb Doggin. Poor baby. We say he's going to be so annoyed as he gets older, he'll just tell people to call him John, his middle name lol.

He is so rolly now. He does NOT roll totally over much at all, but he teeters side to side. I think some of that is from all his kicking. I'll put him on the floor and he's lying in one direction, say North-South and I come back and he's gotten himself in an East-West direction. It's so funny. I THINK he is slowly starting to learn his name. He'll kind of look now when you say it, but I think part of it is tone of voice.

(UPDATE: on 5/13 it was like a huge change came over him. Now he's moving even more, and just seems way more developed literally overnight. He's also doing this thing where he puts his legs straight up in the air and then slams them down. He's also finally grabbing onto his feet with his legs up in the air. it's so stinkin' cute.)

I love when I get home from work and he give me this open mouth smile when I talk to him. We are just so in love with this baby. He is so dang cute. Even when he makes his grinch baby face, he's still so cute. He does this thing with his mouth where he opens it up like an "O" and I just love it. I always kiss him then.

Tuesday 5/6 he drooled/spit up right in my mouth. Eric wrote that on the calendar.

He was evicted from his bassinet on Monday 5/12. Poor guy was totally scrunched up and had to bend his legs out to the side. I came home from work and it had been done for me. He's now sleeping in the pack n play in our room because god forbid we move this child to his actual crib. honestly though we don't have a baby monitor and that is the main reason he's not just in his crib. I am still doing tons of research on one, and looking for deals... so since I have no time... all this research will take awhile.

Sunday 5/4 was my 1st Mother's day! It was so sweet. Eric got me a card, and so did Callum. HE also gave me a hydrangea (I want to plant them in our sad yard), and my favorite chocolate. We went to the park and then family dinner at my cousin's. I love being Callum's mom!!