deaf daughter and other symptoms?

tesskerr

Hi! I am not sure if this is the right forum to ask. A friend of mine has asked me for some help, she is no good with the internet.

Her daughter is 7 months old, and was born deaf. She was supposed to have an all over body assessment, but has somehow slipped through the cracks, and is awaiting a referral to a pediatrician. (In my country you just see your GP, anything theory can't do, you have to go on a waiting list).

My friend is concerned about the other symptoms her baby has, mainly sleep related. She has consulted a sleep specialist, whom thinks it is most likely medical, so back to the waiting. 

If anyone has any advice while my friend waits, or any ideas what may be wrong, I would really appreciate it.

These are her symptoms, deaf (not 100%, but cannot hear without a hearing aide)

Excessive sweating. Mainly night sweats, soaks through clothes, sheets etc.

Has difficulty staying asleep. She is not crying because she wants picked up (picking her up doesn't seem to soothe her). She wakes about every hour, very upset. My friend has a 2 year old, who has reflux/allergies/terrible sleeper. I think people easily dismiss my friend as just not sleep training her new daughter well, but this child just can't seem to stay asleep. Its like she wants to, and cries with exhaustion.

She will seem to be in a deep sleep, then her eyes will just pop open.

Arches her back a lot, like she is in pain. she did have reflux, and was on meds, but off them now because all of the reflux symptoms are gone, and seems happy during the day. She will nap during the day, but for no longer than an hour.

Tongue tie and lip tie. Possible hip problems (may need a brace).

Also was born in the 80th % for weight, now I think she is in the 8th? Gp is concerned she is no longer eating enough, and friends bm supply has suffered, and drs want friend to take meds to boost supply. Can't really supplement with bottle as baby won't take it, probably because of mouth ties, again friend won't get to see a pediatrician for about 7 more weeks.

My friend has hyperthyroidism (mild), and her Nana has hypothyroidism, so friends thought there might be a link with the sweating. As far as I know, baby has had no blood tests or anything.

Again, any help would be appreciated. I get the feeling the deaf thing might be quite unrelated to the sleeping thing. My only thought is, maybe without her hearing aids in, she gets freaked out by it being so quiet? But that just seems a but silly.

tesskerr

Sorry half my paragraphs have gone.

funchicken

I only have experience with the tongue-tie/lip-tie issues. Is there some reason your friend didn't have the tongue-tie clipped? My younger DD had a tongue-tie and lip-tie. I had her tongue- tie clipped when she was a month old. That took care of any feeding problems, and she nursed until 18 months. The lip-tie didn't affect feeding, and our pediatric dentist said they wait until the two front teeth fall out to address it. I had an ENT clip DD2's tongue-tie. As for milk supply issues, my SIL had really good luck with domperidone. I hope some other posters have some advice for the other issues.

st.augbride

Sounds like the reflux could still be a big issue since that's worse at night laying down. I would also have her do a swallow study through a GI to check for aspiration since that could be a problem too. My son had terrible reflux as an infant and he still needs Prevacid.

Assembly_Reqd

The deaf and sleep thing could be related. Will the baby sleep better while at an incline, like in a baby swing or bouncy seat?

It could be possible that she has equilibrium problems (inner ear is part of the vestibular system) and feels dizzy or nauseous when laying down. Or, if she sleeps better at an incline, it could also be reflux.

My child is Deaf/Hard-of-Hearing and sleeps like a champ. He had a ton of reflux as a baby unrelated to the deafness, but he was never medicated for it because it didn't bother him.

If the Gastroenterologist (GI) cannot help with upping the reflux meds then I would go to an Ear Nose and Throat(ENT) doctor and ask about vestibular issues. Tell you friend good luck!

tesskerr

Thanks! She will not sleep in a swing. She has to be swaddled. She currently sleeps on a big incline. . once she has woken a few times, they will then put her on her side with a wedge. 

I think it would be interesting to look into the reflux again, her sister at 2 is still on meds, her stomach muscles are just not strong enough to hold everything in, and the poor things teeth are just crumbling apart. Perhaps because she is not as bad as her sister, the reflux has been over looked a bit.

The dizzy thing is really interesting, that would make a bit of sense related to deafness. My poor friend has had no sleep since the 2 year old was born. We are just a bit unlucky in our country that you have to wait soooo long to ever see a specialist/pediatrician.

tesskerr

Oh, and the mouth ties haveJUST been noticed! Crazy I know. My nephew didn't have his noticed till he was 2 years old. It is high on my list when I have my baby in Jan to make the midwife/go check. 

We live in a small city, there have been over 200 cases the last year. You would think it would be something that is getting checked!

funchicken

tesskerr said:

Oh, and the mouth ties haveJUST been noticed! Crazy I know. My nephew didn't have his noticed till he was 2 years old. It is high on my list when I have my baby in Jan to make the midwife/go check. 

We live in a small city, there have been over 200 cases the last year. You would think it would be something that is getting checked!

Well, sometimes the tongue can be tethered enough to interfere with feeding without looking like an obvious tie. I had three different LCs look at DD's, and they all said maybe, but when I took her to the ENT he confirmed immediately that her tongue movement was inhibited by it. She was nursing better within hours of the procedure.

Wisteriacow

My oldest son was treated for reflux as an infant. It seemed to help some but we noticed the biggest change when we eliminated dairy from his diet and mine. When my youngest was born I noticed similar "reflux" symptoms and immediately eliminated dairy from diet. We noticed a change very quickly. If I go off diet and have milk within a day or two DS's sleep gets worse, he gets cranky and he starts having wet sounding burps. What we deal with aren't food allergies but intolerances. If you're friend is willing she might want to try and elimination diet to see if it helps.

Assembly_Reqd

my vote is on reflux too.

ToastieSimons

I don't have a deaf/HOH child.  But it sounds just like my son with reflux.  I did NOT sleep with my older son.  He would be out like a light and wake up screaming arching and freaking out.  And my neurologist was completely wrong.  Sleep training did not fix it.  In fact, it did nothing. He could fall asleep on his own like a champ and still woke up screaming every 30 minutes.

 

My 3.5 yr old is still on prevacid for his reflux as is my 16 month old.  I would advise her to discuss adding reflux meds back in.  My other advice is to have her give the baby a thick bowl of oatmeal or rice cereal (oatmeal is less binding) right before bed.  It has nothing to do with filling her up so she'll sleep longer, but it's a lot heavier than formula or breastmilk and will weight the liquids down so they stay in her tummy better.