Date: 07/13/2021

Q: We are parents of a 3 and a half month old daughter with HI. We would like to request if anyone can suggest about treatment of HI and share about their experiences with management of HI. Currently, we are following this routine for her:

(i) Formula Feed after every 2.5-3 hrs. (80ml, Similac Neosure of Abbot Company)

(ii) Acetretin capsule (A retinoid on doctor’s advice, 2 mg once a day)

(iii) Application of Aquaphor for skin (after 3 hrs. or as per need)

(iv) Bath for 10 minutes with Baby shampoo/ soap (once a day)

(v) Vitamin D Drops (once a day)

2. We would like to share an incident. Yesterday, while crying she suddenly stopped crying and breathing for a few seconds. Her face turned pale white. But after a few seconds she again started to cry. We were scared and consulted a doctor. He said there is blockage in her nose and on doctors advice we gave her Nasivion Nasal drops. Also, we regularly clean her nose and put saline water drops in it. Now, she is breathing properly. We keep her in AC room with temperature 25-30 degrees Celsius.

We want to know about respiration problems associated with HI and how we can take proactive steps to prevent them. Until now, except for the abovementioned incident, she has not had any respiration problem so far.

3. We shall also be grateful if everyone could share their comments and suggestions about the activities of bathing/ applying emollient/ feeding/ any medicine/ cream/ skin management so that we can take best care of her.

Lots of love and thank you everyone from New Delhi, India.

A:

• Make sure they check her blood regularly, because of the Acetretin. When our daughter was on it, she needed blood transfusions 3x. And as for the bath, we need to bathe her 2x daily, it really helps her feel more comfortable. And congratulations on your beautiful daughter, she is perfect ?? sending love from Europe ??.
• Kindly also suggest measures to relieve itching for the baby.
• Hi I’m going to pm you with some information but my daughter will turn white every time she is startled and it’s very scary.
• Same! It was scary the first time it happened but now we’re used to it. She will turn white when she falls down or almost falls. She did it the other day when she was really scared about something. It doesn’t seem to be a respiratory problem, just a result of a quick loss of breath probably.
• Yes. OMG, I almost called 911 the first time ??
• My daughter does this too! She fell down the stairs on Tuesday and she slid backwards... when she got up she was SO white ?? I am laughing now because it was one of those comedy slow motion falls ????
• We always say our daughter falls in slow motion ????
• So strange! Our son does not turn white when almost falling/falling, startled, or scared. ??‍??
• So adorable ??. We use Atarax for itching. It’s a prescription from our doctor
• I have no suggestions as my daughter is a diff type. But sending best wishes to you and your family! Your little girl is precious.
• 1. If weight gain is an issue consider adding fat. We used drops of corn oil added to formula under the guidance of our dietician. 2. Our daughter had episodes of breath holding related to reflux. Consult with GI about reflux and other GI issues. 3. We also applied lotions every 3 hours with bath (no soap) twice daily. She is now a teen. Bathes when she wants (at least 3-4 times a week with showers in between). Lotions for comfort as needed.
• I’m available as other issues come up. This is a multi-system inflammatory disease that had little reported. We are here for each other.
• I really don't have much more to add to what has already been suggested here. I'm not aware of a specific/direct connection to respiratory complications tied to HI. My daughter didn't have any. Reflux was an issue and ultimately her nutritional needs were supplemented by overnight feedings via Mic-Key button. Hunter also received a retinoid in those initial 2-3 months, but was discontinued due to elevated triglyceride levels. I would defer expertise to all of you who are much closer to dealing with your very young affected kids at this point since my daughter is now the ripe old age of 26. ??
• My son has moderate asthma on top of HI. So respiratory wise, when he gets a cold or anything it definitely is "worse" for him. She's adorable! Hugs. ??
• Thank you everyone for their replies and love.