My baby has weak muscle tone and brain cysts...anyone else?

[Arabica]

Hello
Some of you may already know my baby, Esja, was diagnosed with choroid plexus cysts and ventriculomegaly whilst I was pregnant. She was born on 27 July and has been in special care (transitional care) since day 4. It was quickly apparent that she was weaker and floppier in tone than an NT baby. Chromosone disorders have been ruled out and she doesn't have Prader-Willi syndrome and the geneticist said she didn't think her symptoms fit any other syndromes. Doctors at Hammersmith hospital where she was refeered for 24hrs investigation think it's more likely to be a brain issue than a muscular one but there are various ongoing metabolic investigations & an MRI scan soon. Her major problem is that because she isn't strong enough to suck well she lost a lot of weight soon after birth so have mainly been concentrating on feeding her up.
Just wondered if anyone had been in a similar situation (if so my sympathies) and/or if anyone can offer clues on how to stay long-term in transitional care (ie rooming in) without killing a nurse! They're lovely but I am SO sick of all the rules and being patronised (lights being turned off at night without permission being asked, being called 'mummy' instead of my name, etc...it really rankles!)

sorry to har you are having such a rough time. can't offer any advice as dd was only sbu for one week but will bump it up for you

Arabica
I didn't know that you and your 'bean' were still going through the mill - oops - that was unintentional! I know how awful it is to be cooped up in hospital with a little one, and how bloody minded some of the staff seem to be. I suppose all I can say is hold on to the fact that they are trying to help Esja, so all the irritation will be worth it. But you must be kind to yourself - she's such a little dot still, and you're recovering from her birth. Hope you have lots of people who care around you.

Arabica, I am so sorry to hear about this. I don't know if this is "accepted" in the UK or if you would even think about it, but I have heard very good things about Osteo-Cranio Therapy and wondered if that might be an option for you at some point. I go to a therapist here in the US and I am seriously thinking about getting certified to practice. I myself have had very good experiences and have also taken my daughter. Please ignore this if you think that it is not worthwhile. You want to exhaust all the medical options first and make sure the Esja gets all the best of care. I don't know what the cysts are and am not educated enough to know what the ventribulomegaly is, so I might be talking totally out of turn. I have heard of great successes with not being able to feed, colic, etc down to very serious illnesses and behavior problems. Again, I don't mean to insult or offend. I feel for you and wish for all the best to Esja and you both.

Arabica, you sound so calm in what must be such a stressful and uncertain situation.

My dd was in NICU/SCBU for 2 weeks after birth whilst a parade of doctors evaluated the extent of her heart condition and then for 1 week at 4 months when she had corrective surgery. I roomed in throughout. dd was my first, so I did not have other children to worry about.

When you say you are rooming in, is Esja with you in a room? Or do you just get a bed/chair next to Esja's cot in an open ward (I've seen that!). Is your room near the ward or in another section/floor? I found the best arrangement was to stay as close to dd as possible but with my own room/bed. But I appreciate you prob don't have much a choice, depending on your Esja's condition and availability of rooms.

I echo Pamina3 that you should try to get out at least once a day. Don't eat the hospital food (disgusting) - try to get your partner/visitors to bring in food if they can that you can just up in the microwave. I kept myself busy with frequent expressing, taking comfort that I was helping dd in some way, even whilst she was being tubefed.

Find out when the doctors do their rounds and hang around during that time to get the latest update on your dd's condition. If the hospital allows, get involved with her routine care, like changing her nappy, giving her baths, cuddles - I found it helped me to bond with dd, hard as it was.

Little personal touches, like a radio, books, magazines.

Take care of yourself. Esja is in good hands

Thanks for replies. I think we'll wait for a diagnosis, if we ever get one, before exploring complementary therapies, but glad to hear osteo-cranial therapy has been helpful for you, Sunchowder. (I think this is the same as what we call cranial osteopathy in the UK--had it when pg last time around and it was v helpful). I do try and get out for a few hrs every day and am avoiding ghastly hospital food. We're lucky in that our transitional care dept has pull-out beds right next to the cots and you can pull a curtain around to create your own private space.

arabica, try bliss.org.uk im sure osmeone on there will be able to help you.

cx

Thanks, I had imagined Bliss was just for parents of premature babies, but maybe not. Have also found a helpful website for parents with babies who have hypotonia.

THE MUMS ON BLISS MAY HAVE HAD DEALINGS WITH THE CONDITIONS YOUR LITTLE ONE HAS, OR AT LEAST THE CARE YOUR LITTLE ONE IS GETTING.

CX

Arabica, just spotted you there, wanted to tell you that after two weeks away from MN one of the first things I did was search for your name to find out news about your lovely Esja. Sorry things have been hard for you, and fingers crossed that things will get better soon.
We're having a bit of a rough time of it atm as well, I'll bump my other thread.
Anyway, just wanted to send you lots of kind thoughts, I really feel strangely "connected" to you in all this because we are going through similar things.
Take care XXX

Hi arabica - my dd1 has cysts, enlarged ventricles (assume this is ventriculomegaly?) as well as other brain abnormalites. She has low muscle tone because of her condition. So i recognise what you are going through to a certain extent. . It is tough. really tough. Those long hospital stays really don't help either. I look back on the time I spent in hospital with dd1 and it feels completely surreal. I felt much better once i got home and could start to really deal with how life was going to be, rather than being stuck in this medical limbo.

does your dd need to be in special care all the time? could you ask to take her out, even if just for an hour or so? just go and do something normal, like take her for a walk or go to a coffee shop? I found it helped.

btw - we take dd1 quite regularly to a cranial osteopath. although they cannot change her condition, i feel they can help her body to deal with it as best it can iyswim.

Thank you heartinthecountry for mentioning that. I felt like maybe I was totally saying the wrong thing to Arabica at the time and I am so glad to hear that it helps a bit. Arabica I am also glad that you have had a good experience too. I wish you all the best.

Hi heartinthecountry, I would love to know more about your little one as the symptoms sound similar. Did you wait ages for a diagnosis and did you eventually get one? We have to go to Hammersmith hospital on 12/9 for an MRI which may give us some answers.
We're possibly being released from the hospital soon provided she has put on enough weight. She'll be going home with a nasal gastric tube so first I have to have training on replacing it as she loves pulling it out (no evidence of low muscle tone when she wants to do that!)

Hi.
I just want to sympathise with you re staying in hospital. My dd4 was born in March & apart from the first 12 days and 3 weeks in June she has been in hospital. It is slightly different for us as she is on a cardiac ward but I know where you're coming from (although I have to emphasise that the nurses are lovely and do call me by first name now ). I don't know if you have other children but I spend most of my time at the hospital & go home 2-3 times a week (we live 45mins-1hour from the hospital). Even on the days I'm with dd4 sometimes I find it too intense and have to get out,but I try to be there for ward round and the medical staff are very open with us & are very good at keeping us up to date. Don't know if that's any help to you but again my sympathies and hope you get some answers soon.

Hi Arabica, just wanted you to know I'm thinking of you. You must be missing the rest of your family and your home. I hope you get to take Esja home soon.

Me too Mrsdarcy. Thanks for the update Arabica - lots of us are thinking of you and Esja XXX

Hi arabica - my dd1 has Aicardi Syndrome, it was diagnosed after an MRI and eye exam, 2 weeks after we were admitted to hospital. We got such a quick diagnosis as there are some obvious indicators. The most notable brain abnormality is absence of the corpus callosum, which can be ascertained in utero, so I guess they have already looked at that for your dd?

I don't get on here very much at the moment as I have a 6 week old dd2 but please feel free to cat me. I wish you the best of luck with the MRI and hope you get more answers soon.

Heartinthecountry - my DD has agenesis of the corpus callosum (diagnosed in utero) but it appears to be isolated. I think Arabica had a foetal MRI and that Esja does have a corpus callosum. Hope I've got that right.

Hope you nad Esja had a good night Arabica.

Hi arabica - my dd has cysts, and also partial agenesis of the corpus callosum. She also has mixed tone - predominantly hypotone, with some hypertone in her limbs. We don't have a formal dx, she's booked in for her final MRI in a couple of months time but I don't expect it to shed any more light.

Sorry you're having such a rough time in the hozzy. In my dd's first year we were there a lot of the time from a dx perspective, and then last year she had repeated chest infections. It drove me bonkers being called mum, not too mention being told by a trainee nurse 'if you leve your dd you will remember to put the cot sides up won't you?'. Hmmm....I can laugh about it now .

Wishing you and Esja (beautiful name) a smoother ride of it sonn.

Hello
We're home now! It's a bit scary with the feeding tube, she's ripped it out once already, which meant a trip back to hospital where DH fitted a new one with nurses supervising (next time he will do it by himself).
Yes, Esja has a corpus collosum, although I don't know if it's intact. We have an MRI on 12/9, maybe more information forthcoming then. I am not going to research anything now as I don't want to scare myself.

So pleased you're all home together, Arabica

Glad you're home Arabica - I'm sure Esja will pull her tube at the most inconvenient times just as dd used to. Well done to dh for having a go at putting it back. I had the training but found it really difficult to do - I've had one myself and know what an odd sensation it is having it passed.

How's her weight gain doing?

She pulled out the NGT again yesterday and we decided not to put it back but to see if she could have enough food via breastfeeding or bottled EBM. The community nurse is coming tomorrow but so far so good, I think, as she (Esja) is looking much better since she came home!

Aaaw she's going to be a troublemake Arabica . Hope you manage to keep the tube out - have you got the camera ready for some tube-free shots?

BTW, is Esja having anything added to her EBM to fortify it a bit, so she might be able to get away with taking less volume?