Course of disease and development

On this page we would like to report on the course of Milly’s disease and its influence on her development. After recent changes in the pathology, we decided to add this page.

October 2017

Milly’s form of epilepsy has changed. So far she has had “only” absences. Since mid-October we have noticed isolated seizures (so-called gelastic seizures) lasting about 5 minutes. It is still unclear whether we will have to adjust the medication. After consultation with the doctor, we will first observe the changes.

November 2017

Unfortunately we also had to experience a Grand Mal seizure. This was not a nice experience and fortunately it has only occurred once so far. We adjusted the medication after consultation with the doctor. There was an improvement in the form of a milder course of the seizures, but unfortunately still no freedom from seizures.

March 2018

For the treatment of epilepsy we spent two and a half weeks with Milly in March 2018 in a large epilepsy centre in Kehl-Kork (Germany, near Straßburg). A higher dosage of the previous drugs Petnidan and Keppra did not improve the seizure situation. After three days of observation and analysis, it was decided to remove Keppra and take Orfiril (valproate) as a new drug. The exchange of drugs went without a hitch. Milly liked it in Kork and she was really in a good mood. The feared side effects, such as vomiting, dizziness, increase in seizures or poor liver values, have fortunately so far failed to materialise. Unfortunately, the absence of seizures could not yet be achieved. Nevertheless an improvement of the seizures in the sense of milder and shorter courses is visible. The frequency of the seizures has also been significantly reduced, so that the stay was a success for us and Milly. However, we still have to wait for the coming months and hope that the seizure activity will continue to improve. You can find out more about our stay on Facebook.

April 2018

Our Milly has always been as fit as a sneaker. But since 12 April, Milly has caught a virus infection. Actually not dramatic, but our world was upside down. Milly was very flabby, had elevated temperature and above all no hunger. She refused to put anything in her mouth and we just didn’t know how to make the medicine tasty. Also in the children’s hospital outpatient department no solution could be found. We were to wait and see, and if nothing would continue to work, the medications would have to be administered intravenously or even by means of a stomach tube. Of course we did not want that, but our fear of seizures was great. Strangely enough, Milly has been completely free of seizures ever since! Her attending physician suspects that the infection has a effect similar to that of a ketogenic diet, since the energy balance has to change completely. In the end the medication was an unacceptable demand and we only had the feeling that we were torturing our child. Now we approach the matter much more relaxed and hope that the infection will soon be over. For two days Milly has been eating at least a little, the drugs still have no chance with her. But Milly’s refusal to eat has a nice side effect: she has lost some weight.

Since 23 April Milly is healthy and goes to kindergarten again. But when it comes to meds we have to start from scratch again. It is a permanent feat of strength to infuse her with the Petnidan juice and the Orfiril pellets, as she rejects yoghurt and fruit pulp as a matter of principle. So we had no choice but to try it the hard way: We gave her the Petnidan juice drop by drop on her tongue, lips and dummy so that she could get used to the taste. Meanwhile she swallows the juice quite fast, but not without grumbling and growling nevertheless. She must not feel the Orfiril pellets in her mouth, otherwise she completely refuses to take them. To our great relief she finally took the balls with Bauer yoghurt (a certain brand) or organic food plates. With regard to the medication, her loss of appetite turned out to be a great disadvantage. In the past, she almost jumped on the yoghurt, but now, after a few spoons, she’s satisfied – and the rest of the balls remain in the yoghurt. We are therefore unhappy with the situation. Fortunately, there have only been a few seizures so far, which have been very mild.

Milly, by the way, had an ingenious strategy of refusing medication: in order not to annoy us from the start, she couldn’t spit the meds out or refuse to take them in her mouth. So she diplomatically put them in her mouth and waited, waited, waited, did not swallow. As an exception, she was very patient here once, because she was waiting without effort. After 20 to 30 minutes of course a lot of saliva had accumulated in her mouth. Now she opened her mouth a little bit and the saliva flowed out little by little. Problem solved!

October 2018

After months of unsuccessful attempts to get the Petnidan juice into the child, we finally gave up. Milly only took a small fraction of the required dose. We discussed the problem with Milly’s doctor. Since we could not see any increase in absences, we should try to reduce the medicine gradually. Fortunately, the seizure situation didn’t get any worse, Orfiril long seems to get both the seizures and the absences well under control.

We no longer work towards freedom from seizures. Milly has at least one seizure after falling asleep. Fortunately, the seizures have not worsened.

Unfortunately, Milly gained weight despite strict nutritional control. However, we are glad that the increase has been moderate, as the active ingredient of her drug (valproate) is known for very strong weight gains.

January to March 2019

Milly’s been getting her second teeth for some time now. The change of teeth actually goes very smoothly. Her last wiggly tooth, however, took its time forever and didn’t want to give way for weeks, so that it was captured at the photo shoot in mid-March. Milly hasn’t liked brushing her teeth so much since the beginning of the change of teeth, but still lets it happen if we talk her into it.

At the beginning of the year Milly was diagnosed with a slight underactivity of the thyroid gland, against which she was medicated. The medication (L-Thyroxin) in tablet form should actually be taken before breakfast. But Milly refuses. We grind the tablet and put it into her yoghurt with the Orfiril balls. L-Thyroxin should actually not be taken together with dairy products. We are still looking for a solution that is acceptable to Milly. It’s quite a balancing act, as there’s always the danger that she’ll refuse to take the epilepsy medication.

Soon the earnest of life begins for Milly, too. The last few months have been marked by the selection and registration of a school. For Markus and me it was always clear that we didn’t want an inclusive schooling for Milly. The care and nursing effort would be too high, therapeutic services are not available at a regular school.

It is also important to us that our child is received as it is and not just tolerated. After many years of controversial discussion about inclusion in schools and the lack of conditions for successful inclusion, it was not difficult for us to decide on the Martinsschule in Ladenburg near Heidelberg. The Martinsschule is a school for physically handicapped children, which also offers a focus on mental development. It is well equipped, and there are therapeutic facilities on site, such as physiotherapy, a Snoezel room, a swimming pool, etc. The school is also a great place to learn. They also teach Milly in small groups with a very good care ratio. There are even children’s nurses for medical care and in case of emergency or illness on site. Since we do not know how the further course of the disease will be, it reassures us to know that Milly will always be well looked after in such a case.

After the admission interview and the school visit last year, it was soon clear to us that Milly’s school would become ours. It was also warmly recommended to us from all sides. In the meantime we have received the approval of the school office and completed the school admission. On 11 September 2019 Milly will start the adventure of school.

With regard to her development only small steps can be seen at Milly, which we are of course happy about. It is important to us that she learns where it is within her possibilities to become more independent. Sometimes it is only very small aids costing only € 8 that allow a physically severely impaired child to become more self-determined. Milly’s occupational therapist drew our attention to a plastic plate rim that can be attached quickly and easily to a plate. Thanks to the edge of the plate, Milly can now (almost) alone shovel the food onto the spoon without it falling off her spoon during the eating process due to her lack of motor skills. The border of the edge ensures that the food remains on the spoon. Milly can then push the spoon up along the edge and lead the food to the mouth.

Since September 2018 Milly has been attending preschool in the kindergarten and is supervised by a special school teacher. She recently informed us that Milly is learning to communicate by eye using a Tobii computer. This was tried in kindergarten many months ago, but Milly couldn’t do anything with the device. Now we’re curious to see what new worlds could open up for her with Tobii. As Milly grows older, it becomes more and more important to develop her communicative skills, as she understands more than she is able to express. That frustrates both sides. But you can’t expect miracles. It takes a lot of patience and time to strengthen Milly’s communication skills. It shows, however, that the possibilities and scope for action of even severely restricted children can be expanded and that regular offers should be made in order to provide them with access to new forms of communication and thus to give them more scope for creativity. At the beginning of April we have an appointment in the kindergarten and want to have a look at the work of the special education teacher with Milly.

Updated 31 March 2019