Emina's Story

Emina’s Story

Emina is my third daughter. My eldest is 10 and my middle is 8, they do not have BPT.
Emina was born by normal delivery in August last year, she held her head up at birth (I will never know if this is linked to it or not)
We tried breast feeding her at first but she could never quite manage on one side. She had a lot of reflux and was diagnosed with dairy intolerance.
At around 6 weeks Emi woke in her bouncy chair with her head stuck to her shoulder, when I picked her up her eyes rolled in her head and she was in unbelievable discomfort. The emergency room said it was a stiff neck! She never became straight again. Her twisted posture meant she developed plagiocephaly, the GP referred her to a physio. Nobody wanted to listen that we felt that there was something wrong with our daughter than normal torticollis. The physio eventually saw her one day when she was having an episode and refused to treat her as she believed what she was seeing was neurological. She had never seen anything like it before. Emi was stuck to one side, her torso was bent like a banana, she was in obvious distress, her forehead bulges more, her eyes roll and she holds her head and pulls her ear. A couple of days later we saw our wonderful paediatrician. He knew instantly what was wrong with her.
Since the diagnosis Emi’s episodes have worsened but Dr Gallagher has kept in touch by letter and by phone. She has 3 to 4 grumbling headaches a week, she is irritable, sometimes almost aggressive, her reflux is worse and her head alternates in its tilt daily from left to right and she cannot sleep properly. Once every two weeks we have a full blown torticollis day where she wakes in her banana posture. We can write off the next 2 days. She is in immense pain and doesn’t want to be touched, she will then vomit and sleep and wake up with a straight head!
The paediatrician is trying her on new meds that we started today. I pondered about it deeply but decided that it was worth trying if it will just alleviate the grumbly days and it may even benefit the next baby born with BPT. She now takes a diuretic twice a day that apparently works on the calcium channels, I do not understand how. She also has a sedative to try and initiate sleep on the sleepless grumbly days as this seems the only way to break the cycle. Both have to be given rectal due to the reflux. We will wait to see if it works!!
I cannot see how I can return to work as I can spot an episode starting unlike the rest of the family, how could I knowingly put her into day care. Friends do not understand as they don’t see the bad days.
Emi is beautiful and perfect to us but although BPT is benign it is one heartbreaking disease!


UPDATE JULY 2008
Things haven’t been great recently. Our ‘lovely’ paediatrician has become disinterested and slightly callous. I have had to change doctors as he wouldn’t prescribe her meds as they were too expensive!!! We have changed health visitor and the new one is trying to move heaven and earth to help. After the medical professionals decided to stop physio despite limited neck movement to one side and plagiocephaly they are now asking why she doesn’t have it!!! Now we have a 9 month old baby that cannot bear it for her head to be touched or her neck and won’t lie on her front. Good luck to the next physio. I have been told by the paediatrician her head shape is awful, I asked him 3 weeks earlier when he said it was ok. One minute he wants to withdraw meds by the time we leave the room he has increased them. The health visitor has referred her to an optometrist, audiologist and dietician we have asked for 5 months yet the last health visitor, paediatrician etc didn’t do it. She now attends portage once a month. At first I didn’t feel like we fitted in, the paediatrician referred her but last week said she didn’t have special needs and she was just taking a place. Yet today she went and we did baby massage, whilst the torso and legs went fantastic, her head and neck remained untouchable. I couldn’t get her to lie on her front at all. Today we fitted in!! I have come to understand today that despite the negativity from Health Professionals and my concern that she didn’t seem to fit in either special needs portage or mainstream that actually she has a place in both. Mainstream fits her as mentally she is as bright as a button and far in front of her peers. Portage etc. Enables her to develop her problem areas, basically head and neck and allows all of us round her to appreciate her limitations but also see how she works around them and access the services she requires to help her.
I am not convinced that the meds work. Yes she hasn’t had any major episodes but I believe that is because they stopped the physio, we will see what happens tomorrow when physio resumes.
Helmets have been mentioned and even cosmetic surgery to move her ear so I am going to take the time to review everything again.
Interestingly when Emi went into the white room that has special fiber optic lights her head went over, we came out it went straight. The epileptic children did not do this. I told the paediatrician as I thought he may be interested, but no he wasn’t just said well I don’t know why it’s not important!! Good news is that her reflux is improving with solids.