Hellobee Boards

@Mrs. Tiger: that is an awesome update! Yay for gross motor skills on target! That is amazing! And those words are great too. Cracker was supposedly one of my favorite words at that age too.

My LO#2 is six months. So far no official diagnosis, but her most significant issue is hypertonia which has caused fine motor and adaptive delays. She is definitely getting better with OT visits- but still behind. Our newest development is we just had her 6 mos visit and she is apparently falling off the growth curve, weighing 12 lbs and <3% for both weight and height. Our first visit with the developmental ped is tomorrow and we have three other specialist visits over the next two weeks to follow up on.

The situation can be overwhelming if I think about it too much, but we're taking it day by day, and she's still our little lovebug. Loving this weather, esp for her, since her eczema is so much easier to control now.

I'm going to jump on in here this time around now that we know a bit more about what Charlie will need long term. I am so grateful to have you all as a resource!!

Charlie is 3 months old and was born with several heart defects (his surgeon says it is Shone's complex). At 1 day old his bowl perforated, then at 1 week old he crashed, resulting in brain injury and renal failure. He had his bowel repair at 2 days old (resulting in an ileostomy), heart surgery at 5 weeks old, and a trach placed at 12 weeks old. He can only really move his left arm freely, while his right arm is very stiff and both legs are very weak due to a combination of his brain injury and muscle atrophy. He will be going home on peritoneal dialysis, a ventilator, and a feeding tube and will require various forms of therapy and possibly a kidney transplant in the future.

Charlie is doing really well right now and the Drs are really working on getting him ready to go home. His feeds are being transitioned to bolus feeds, he is doing CPAP trials on the ventilator, and they are moving him to the automatic cycler for his dialysis. We still have a long way to go, but I feel like we might actually take him home one day! We will be having a discharge meeting with all of his care teams next week to find out exactly what he must accomplish to be able to go home, but I know of a few requirements already. He must be 5kg before he can go home on a ventilator (he is about 4kg now) and he needs to be able to handle just 12-18 hours of dialysis a day (vs the 24 hours he is on now).

And as far as he weather goes, I am loving it! I have been able to get DD outside and let her run around outside of the hospital, which has really helped with her mood (and naps!). I am really hoping spring will stick around.

@jhd: Thank you!! That really means a lot And good job to your little guy for drinking out of a straw and with a sippy! Any big plans for his birthday?

@bamblm: How was your appointment with the developmental ped?

@Mrs. Tiger: It sounds like D is doing great! BTW I really liked your post on D's IVIG. Charlie has gotten IVIG infusions every once in a while and I had forgotten that D does too.

@Mrs. Tiger: Ha, yes it does actually! I almost apologized for it being so long at the end. There is more I could put in there, but it covers the basics

Anyway, again, I really did enjoy that post! I have been thinking a lot about how to I will ever manage leaving the house with Charlie and DD, and while your post didn't help it sound any easier, you are able to get it done and that is awesome. I doubt anyone would think that you are fishing for compliments. I find it great that you keep it real as those posts likely help a lot more people than you realize

@bamblm: Glad you are feeling better! I feel like getting a plan with doctors is so helpful, even if accomplishing the plan is stressful. Charlie has had 2 MRIs and they were not too big of a deal as far as he was concerned. I know your little one is older though, so I hope she handles it well! Charlie has also been evaluated by a geneticist, so if you have any questions about that feel free to ask.

After talking to Charlie's nephrology team today, I feel like being his mom will have to be my full time job for quite some time. He will have a lot going on! Not exactly what I thought I would be doing, but I am ok with it for his sake.

@MrsScallop: oh and yes there are birthday celebrations planned! We are doing a twinkle twinkle little star theme and I'm hoping to bake cake & cupcakes and have our families over. So not a lot of people, but I'm hoping it will be a fun day.

@Mrs. Tiger: they have started the paperwork for it. The continuing care person expects we will qualify for 16 hours a day, so that will certainly help! They won't be able to do anything with his dialysis, but can help with everything else. DH isn't so keen on having a stranger wandering around our home overnight, but I am glad we will have the peace of mind that we won't miss something overnight since he can't cry.

@MrsScallop: definitely! I'll share some pics when it is all done and my Pinterest pins it's T's favorite song. That's so neat each of your LOs has their own special song.

@Mrs. Tiger: @jhd: @MrsScallop: @bamblm: I just saw this, as I went to post a crowd sourcing post about my LO. She is different and much less involved than the issues your LO's are dealing with and I feel a little silly for worrying about her when I read about the things your LOs are triumphing over.

My LO basically has chronic respiratory issues. We do not have a diagnosis. Our biggest struggle (outside of her health) is that I work full time yet need to miss work almost every two weeks for her.

Balancing work, life and marriage is kinda a joke with a sick kid, yes?

I'm sorry, can't reply to everyone because LO is-wait for it- sick and she is awake and due for suctioning. But I will catch up later!

@lizzywiz: hi! I also feel like my LO's issues are nothing compared to the major obstacles everyone else is dealing with. Seriously - we haven't even had any hospitalizations or majorly serious issues since she came home, just a LOT of appointments for a million little things. I also just wanted to say I am right with you on the frustration aspect. To be honest, My frustration isn't even limited to her lack of diagnosis. I also have to miss a ton of work for various appointments, I'm worried about how it will affect my career, i feel guilty about how much time I spend trying to take care of my daughter at the expense of spending time with my son, and I feel helpless watching my six month old have to go to all these doctors visits and tests. I also sometimes feel like her issues are minimal in the grand scheme of things but sometimes still feel the weight of it all. Medically between her CNS disorder and other issues her most frustrating problem for me is actually her eczema which is quite severe and bothers me mainly because it is obvious how physically miserable she is when it flares.

Lastly I feel guilt that my body somehow failed her during pregnancy causing all of this and also guilt that now I could be doing better in terms of caring for her. So what I'm saying is I have good days and bad days lol.

In the end I'm doing the best I can, she'll get a diagnosis eventually and the whole time, we will be doing what we can to help her. It helped me to actually not discuss her issues in too much detail with friends and family. I think this was because I was already overwhelmed with instructions and advice from the medical professionals I was seeing, adding everyone else's opinions into the mix would make me constantly doubt myself. So now I only listen to qualified experts for advice.

ETA: wow! sorry that was long!

Hi! My LO (16.5 mo) has severe chronic neutropenia of unknown cause that was first caught at ~7 mo. We are waiting WES results (most likely won't hear anything until August) to hopefully find out an official cause after antibodies tests for AIN and genetic tests for SDS were negative. She had a bone marrow biopsy and aspirate at 9 mo to help rule out some other things. Our biggest issue at this point is watching for fevers or any signs of infection, in which case she would need to seek immediate medical attention and hospitalization. She currently gets Neupogen injections to help raise her neutrophil counts. However her levels drop drastically, putting her at greater risk for infections, by the time her next dose is due, so we have to be cautious of the places we go in public or if any other family members are sick.

In addition to her neutropenia she is also small for her age. Her growth hormone is low, but her endo wanted to give her more time and retest, hoping her body would pick up, before putting her through further testing and possible growth hormone injections. She also had some food allergy/intolerances when she was younger but those have seemed to resolve.

Developmentally she is right on track. Her heme and pedi always say that you would never know anything was wrong with her if you didn't look at her labs or her growth chart and I am very thankful for that.

@bamblm: @Mrs. Tiger: @lizzywiz: I'm not sure what you all have tried for eczema but the only thing that works for us is Cetaphil bodywash, Vanicream and Sarna sensitive lotions.

@lizzywiz: Thanks. And yes a lot of people don't know what it is or understand it. I think the hardest part for people to grasp is that a fever is a medical emergency for her. January she was hospitalized 4 times. She's been doing pretty good, hospitalization wise, since.

@Mrs. Tiger: 1.5 hrs without traffic. It has taken over 3. We have another children's hospital about 45 min away we have used in certain situations and live right down the street from a hospital if we really needed it, but I much prefer the children's hospital where all her doctors are.

I'm glad your co-worker is doing well! Good luck tomorrow! I know some neutropenics who go well with IVIG over neupogen.

@Mrs. Tiger: Honestly the drive doesn't even seem that far to me anymore. We even go there for just labs because I like the consistency of the same lab. So far neupogen has been working well for her. She actually has an insanely high off the charts response to it, so is only getting it twice a week. I think if it wasn't working IVIG would be something we had discussed. I know her heme was saying that he hopes WES will give us some answers and maybe there is ankther treatment out there for her besides neupogen. My first thought was IVIG, but it is not something we have discussed with him yet. I just know of people using it in our support group and those are usually the kiddos that neupogen doesn't work for at all, stopped working or a few need both.

@lizzywiz: @anbanan15: @Mrs. Tiger: Yes, I feel like we've tried everything! When her skin gets bad, her whole body is red and her skin in the worst areas is cracked and flaking like a dry riverbed. It's the worst on her head, chest, elbow and knee creases. We have literally tried almost every single cream/lotion on the national eczema page -and some are expensive!! Right now, we do full body vanicream and aquaphor with each diaper change, steroid cream when it's beefy red and angry looking, twice weekly bleach baths with aveeno oatmeal, wet wraps and mucopiricin when her skin is broken down. We mitten her hands and swaddle her with her arms pinned straight down at night, otherwise she will scratch her skin raw in her sleep! Between her scratching and rubbing her head to relieve the itching, she has basically rubbed all her hair off except for a small patch on top-a la Bert and Ernie. I'm just thankful that her skin seems to be getting so much better with the warmer weather!

@anbanan15: Wow, sounds lucky that they happened to catch the neutropenia early! My LO is also little, right now riding 3rd%. I don't know if the WES test you are talking about is similar to the test our geneticist is having us do. It's some kind of generalized chromosome map to see if there are any deviations. I don't know all the technical parts, but she said if everything is normal on this, there is nothing else they can test for, but if something lights up, they can narrow down the search for her particular problem. They are also having us do some kind of general metabolic screen. I'm taking her for the labwork this Thursday, and she also has her ortho appointment for her first leg cast this Thursday.

General question for everyone, I know doctors want to be thorough, but I actually refused to bring my daughter to a vision test that one of the doctors recommended. The doctor said to do it "just in case" but she clearly looks at and interacts with all of us, especially my son, and she will follow toys and look at flashing lights on toys etc. I agreed to have the vision test done if she still thinks this is a problem in six months. It's just that each appt takes about 2-3 hrs including getting there and waiting, etc. Anyone else try to cut down on the hamster wheel of drs appts and tests?

@Mrs. Jacks: The bleach baths we are supposed to do if there is a yellow crust on her broken down skin, We do a tablespoon in the bathtub and also put her mustela bath oil when we do the bleach. Unfortunately she seems to get that crust anytime one of her hands escapes and she rubs a spot to death -even with her mitten - before we catch her in the morning. Do you know of anything that would work better?

Otherwise it is just the aveeno powder and mustela oil in her bath, gently pat dry, lube her up; and we try not to bathe her more than twice a week.

@bamblm: I would think a topical antibacterial would be fine?

I'm not derm, but for my patients I do the bleach baths only for MRSA eradication. I would defer to your derm, if you feel that they are reputable (regional children's hospital affiliated is a good start).